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An examination of the health-related quality of life and functional skills as reported by the parents of young children with developmental delays

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An examination of the health-related quality of life and functional skills as reported by the parents of young children with developmental delays

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Content AN EXAMINATION OF THE HEALTH-RELATED QUALITY OF LIFE
AND FUNCTIONAL SKILLS AS REPORTED BY THE PARENTS OF
YOUNG CHILDREN WITH DEVELOPMENTAL DELAYS
by
Tzu-Hua Ho
A Thesis Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
MASTER OF ARTS
(OCCUPATIONAL SCIENCE AND OCCUPATIONAL THERAPY)
May 2003
Copyright 2003 Tzu-Hua Ho
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UMI Number: 1416557
Copyright 2003 by
Ho, Tzu-Hua
All rights reserved.
®
UMI
UMI Microform 1416557
Copyright 2003 by ProQuest Information and Learning Company.
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UNIVERSITY O F S O U T H E R N CALIFORNIA
THE GRADUATE SCHOOL
UNIVERSITY PARK
LOS ANGELES. CALIFORNIA 9 0 0 0 7
This thesis, written by
under the direction of h&£. Thesis Committee,
and approved by all its members, has been pre
sented to and accepted by the Dean of The
Graduate School, in partial fulfillment of the
requirements for the degree of
( Occupa+iimtkf i k en ^y)
D im
THESIS COMMITTEE
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Dedication
This thesis is dedicated to my dear family members and the
families of children with developmental delays.
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Acknowledgements
I deeply appreciate Diane H. Kellegrew, PhD, OTR, Diane Parham, PhD,
OTR, FAOTA, and Ruth Zemke, PhD, OTR, FAOTA, for their support as the
chairperson and thesis committee members. I also grateful to the therapists in
Therapy in West, Therapy in Action, Child Development Center, Pediatric
Therapy Center of Glendale Adventist Medical Center, and Pediatric Therapy
Network, for their assistance in recruiting the participants. Finally, I thank all
the parents who participated in this study.
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Table of Contents
Dedication ii
Acknowledgements iii
List of Tables vi
List of Figures vii
Abstract viii
Chapter 1 Introduction 1
Chapter 2 Literature Review 4
Definitions of Quality of Life (QOL) 4
Health-related Quality of Life (HRQOL) 6
Historical Background 7
HRQOL for Children with Developmental Disabilities 1 1
Parents’ Voices versus Children’s Voices 16
Measurements 18
Considerations in measuring health outcome and QOL 18
Measurement tools for children 19
Relationships to Occupational Therapy Practice and 23
Occupational Science
Research Question: Assumption and Rationale 26
Chapter 3 Method 28
Participants 28
Recruitment 28
Demographics 30
Demographics data of family and parent 30
Ethnicity of participants 31
Measurement Tools 34
Pediatric Quality of Life Inventory™ (PedsQL™, 34
Version 4.0)
Pediatric Evaluation of Disability Inventory (PEDI, 36
Version 1.0)
Open-ended questionnaire 38
Procedure 39
Procedure and strategies 39
Data Analysis 41
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Descriptive strategies 41
Quantitative data analysis 41
Qualitative data analysis- content analysis 43
Chapter 4 Result 45
Descriptive Statistics 45
Score results of PedsQL scales 45
Scores of PEDI Functional Skill Scale 49
Statistical Analysis 57
Association between children’s HRQOL and overall 57
functional skill
Effects of demographic variables 60
Qualitative data analysis- content analysis 60
Chapter 5 Discussion 72
The Purpose of This Study 72
Correlation Between PedsQL and PEDI in This Study 73
Major Diagnostic Population in This Study: Children with 74
Autism Spectrum Disorder
Demographic Variables: Ethnicity 77
Parent Proxy Rating 78
Relationship Between the Study Implication, Occupational 79
Science, and Occupational Therapy Practice
Limitation of This Study 81
Future Areas of Study 82
References 83
Appendices
Appendix A
Appendix B
Appendix C
Appendix D
Appendix E
Demographic Data Form 90
Pediatrics Quality of Life Inventory 91
Pediatric Evaluation of Disability Inventory 94
Open-ended questionnaire (Simple Survey) 97
Participant Informed Consent Form 98
V
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List of Tables
Table 1. Strategies for recruiting participants 29
Table 2. The Scales of PedsQL™ 36
Table 3. The Scales of PEDI 38
Table 4. Score Summaries for subscale of PedsQL and PEDI 50
Table 5. Pearson correlation between subscales of PEDI functional 58
skill scale and PedsQL
Table 6. Contrasts of the reports on the simple survey and the 61
PedsQL physical functioning subscale
Table 7. Contrasts of the reports on the simple survey and the 63
PedsQL emotional functioning subscale
Table 8. Contrasts of reports on the simple survey and the PedsQL 65
social functioning subscale
Table 9. Contrasts of reports on the simple survey and the PedsQL 67
school functioning subscale
Table 10. Contrasts of reports on the simple survey related to play 68
activities
Table 11. Parent’s reports of their child’s satisfaction in daily life 70
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Figure
Figure
Figure
Figure
Figure
Figure
Figure
Figure
Figure
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List of Figures
1. Ethnicity of parents and children 32
2. Types of children’s diagnosis 33
3. Frequency of PedsQL total scale score 46
4. Frequency of physical health subcale score of PedsQL 47
5. Frequency of psychosocial health subscale score of 48
PedsQL
6. Distribution and frequency of PEDI functional skill 51
scaled score
7. Frequency of physical functional skill subscale score of 52
PEDI functional skill scale
8. Frequency of self-care subscale score of PEDI functional 53
skill scale
9. Frequency of mobility subscale score of PEDI functional 54
skill scale
10. Frequency of social function subscale score of PEDI 55
functional skill scale
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Abstract
This study aimed to examine the relationship between the ability to
perform meaningful functional occupations and the quality of life (QOL) of
young children with developmental delays as reported by their parents.
Twenty-nine parents of children with developmental delay aged five to seven
living in the United States were recruited. The Generic Core Scale of the
Pediatric of Quality of Life Inventory (PedsQL) and the functional skill scale
of the Pediatric Evaluation of Disability Inventory (PEDI) were used to
measure the children’s health-related quality of life (HRQOL) and functional
skills. Moderate to high Pearson Correlation Coefficients between the two
scales were found (r = .53 - .75, a ~ .01). An open-ended questionnaire was
used to sample the children’s important life concerns and life satisfaction. The
questionnaire results were in agreement with items from PedsQL. However,
PedsQL did not capture many important concerns identified by the parents of
children with autism spectrum disorder, such as issues related to sensory
problems, self-regulation, and communication skills. The results can improve
the practitioners’ understanding of children’s quality of life for developing an
occupational centered QOL measurement for developmental delayed children.
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Chapter 1
Introduction
This study aimed to examine the relationship between the parents’ reports of
their young children with developmental delays’ health-related quality of life as
measured by the Pediatrics Quality of Life Inventory and the children’s functional
skills as measured by the Pediatrics Evaluation of Disability Inventory.
The theoretical and research literature explored various facets about quality
of life (QOL). These consisted of issues, such as the definition and concept of
QOL, the development of QOL measurements, the characteristics of QOL tools,
the life quality of different populations, and the relationship between QOL and
health states. However, no study has been conducted regarding the relationship
between health-related quality of life (HRQOL) and functional skills. This study
aimed to explore this relationship by investigating children’s HRQOL and
functional skills as reported by their parents.
This study was based on the theoretical concepts of occupational science
and occupational therapy. Occupational science is broadly defined as the
systematic study for understanding the form, function, and meaning of human
occupation (Clark et al., 1991). For example, it involved the study of how people
perform their daily activities, such as cooking, fishing, and how people arrange
their time in daily life. Occupational science offers basic critical knowledge of
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human occupation to be used by occupational therapists and other professionals
(Yerxa et al., 1990). On the other hand, occupational therapy is a health profession,
which makes efforts to connect or actualize human capacity to daily function and
occupation. During therapeutic intervention, the occupational therapists may apply
the knowledge of human occupation in enhancing human skills in daily
occupations and in promoting people’s adaptation and life satisfaction in their
living environment.
This study is closely related to an occupational science theoretical base and
occupational therapy treatment services. In the field of occupational therapy, the
therapists and clients are concerned about overcoming life challenges caused or
exacerbated by illnesses and disabilities to build a healthy and meaningful life.
Widely believed that functional independence and functional skill can influence
individuals’ occupational performance, the individual’s occupation can shape and
be shaped by his or her health and living context. The knowledge of human
occupation can help therapists and clients to explore meaningful occupations,
create ways of engaging in their occupations, and play effective roles in their
respective living environments and cultures (Parham, 1998). The examination of
the HRQOL and functional skills in this study is also a study of human occupation.
Theoretically, the results of this study could inform our understanding of life skills
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and life satisfaction. In practice, it would be valuable in helping people engage in
daily activities and enjoy a healthy lifestyle, leading to a more satisfactory life.
In the health care services, the measurement tools of functional
independence and functional skills are usually used in objective evaluations to
measure the patient’s therapeutic effectiveness and to record his or her progress.
Improving HRQOL has become the ultimate goal of health care. Consequently, the
client’s subjective view of his or her life satisfaction and life quality is highly
respected. Therefore, the results of functional measurements conducted with
objectivity and the information about the patient’s subjective well-being should be
considered at the same time when the therapeutic goals and the treatment program
are set and modified. The results of this study may provide pediatric occupational
therapists and health professionals a reference as to how treatment and service can
be refined and improved.
The literature review of this study discusses the historical background of the
development of QOL, the issues of parent’s voices versus children’s voices, the
measurement tools used, and the relationships of this study to occupational therapy
practice and occupational science. Following the literature review, the method
section will describe the participants, measurements, data collection, and statistical
analysis of this study.
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Chapter 2
Literature Review
Definitions o f Quality o f Life (QOL)
Various definitions, contents, and criteria for the QOL have been proposed.
The World Health Organization (WHO) describes the QOL as “the individual’s
perception of their position in life, in the context of culture and value systems in
which they live and in relation to their goals, expectations, standards and concerns
(Schipper et al., 1996, p. 249).” Caiman (1984) noted that QOL measures the
difference between a person’s hopes and present experience. In other words, there
exists a gap between the realities of suffering in life and the expectations in the
mind. People try to narrow the gap by overcoming the challenges or improving
their abilities. Here, QOL is used as a tool to measure and describe the distance
more concretely and formally.
Saigal (2000) regarded QOL as “...an all-inclusive concept that incorporates
many factors that impact on the life of an individual. These factors may include
the economic, political, cultural, spiritual, environmental, social, physical, and
emotional dimensions of a person’s life” (p. 403). Saigal’s definition is the widely
used definition of QOL that provides a comprehensive concept and a complete
picture of its scope of QOL. It contains and connects the various dimensions of the
individual’s life all together. Moreover, the different impacts in life may influence
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all concerned and make them interact with one another. Thus, QOL represents
the results of dimensions of people’s life and serves as an indicator of this dynamic
process.
In addition, Wallander et al. (2001) reported that “QOL is the combination
of objectively and subjectively indicated well-being in multiple domains of life
considered salient in one’s culture and time, while adhering to universal standards
of human rights” (p. 574). Similarly, Lindstrom (1994) suggested a general QOL
model encompassing four life spheres. They are the global sphere (representing
society and the macro environment), the external sphere (representing
socioeconomic conditions), the interpersonal sphere (representing the structure and
function of social support), and the personal sphere (representing physical, mental,
and spiritual conditions).
Although there is no universal definition of QOL, the main idea and core
spirit of the definitions proposed by researchers are similar. They introduce the
multiple dimensions and various functions and meanings of QOL. These basic
concepts can be applied when conceiving the structure and methods used to study
QOL in detail. The commonality among all definitions of QOL is the concept’s
comprehensiveness and holistic nature.
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Health-related Quality o f Life (HRQOL)
In the field of medicine and health care, studies are usually focused on
Health-related quality of life (HRQOL). Researchers in the health care field
attempt to distinguish HRQOL from the more general QOL, a comprehensive
concept associated with various dimensions, such as health, society, culture, and
economics. Moreover, the studies of HRQOL are more specific in describing how
a person perceives the various aspects of life that are related to his or her health
and illness experiences, as well as how human life is affected by health conditions
(Erling, 1999).
Similarly, HRQOL is also defined as the states that combine to make up a
person’s health problems in concert with his or her emotions and satisfactions in
life (Theunissen et al., 2001). Usually, people may experience limitations in real
life and fail to achieve their personal goals and expectations due to their health
states. In HRQOL measures, different individuals may rate the same health state
differently. Broadly speaking, measurement tools of HRQOL can be the indicators
of the individual’s physical, psychological, and social well-being (Theunissen et
al., 2001). Furthermore, they are also indicators for use by health care programs.
This study focused on HRQOL issue. In this study, HRQOL was
operationalized as to how a person subjectively perceives and appraises the degree
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of wellness of his or her performance and existence in daily life as related to
their physical, mental, and social health conditions.
Historical Background
The idea of QOL was bom in the course of historical and social changes.
The concept of HRQOL was influenced by the transformation of health care
system and therapeutic (client-therapeutic) relationships. Three major points which
influence the development of QOL and HRQOL will be discussed, namely (a) the
advances in medical care, (b) the influences of World War I and II, and (c)
industrialization and the resulting economic changes in the world.
Following the rapid evolution of western medicine during the 19th and 20th
centuries, including the development of vaccinations and the improvement of
surgery, more people survived illnesses and harm, and the mortality rate continued
to markedly decrease. As estimated by the World Health Organization (WHO),
following a survey conducted in 191 countries in 1999, the global life expectancy
at birth in 1999 was 64.5 years, which was an increase of almost 6 years over the
past two decades (Mathers et al., 2001). Thus, medical care has increasingly
controlled and stabilized chronic diseases. With this, more people live a longer life
with long lasting disabilities and dysfunction.
After World War I and II, many soldiers survived battles. However, they
needed encouragement and support to recover their health and rebuild their lives in
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subsequent years. The growth of the rehabilitation movement was a significant
event influencing and catalyzing the medical and rehabilitation systems during the
period of 1942-1960 (Mosey, 1971). Due to medical advances and consequences
of wars, a huge number of people with disabilities lived longer than previously
expected. However, people with disabilities suffered not only from physical but
also from psychological and social impacts as well. For example, disabilities may
affect a person’s appearance, self-esteem, and job performance. Sometimes, the
family’s financial condition and interaction are also impaired by the disability of a
family member. With rehabilitation and health care, people with disabilities regain
or rebuild a productive and functional life. In the health care system, health care
providers increase individuals’ awareness on how to improve the patients’ QOL in
the follow-up stage after stabilizing their health states and alleviating acute
symptoms. Based on the historical background, the idea of QOL is highly
influenced by the definition of health.
As a result of industrialization and technological advancements, work style
and manpower were transformed and replaced by machines and automated
systems. Moreover, occupational styles and life styles of laborers had changed.
The socio-political environment, as well as the social structures and social rules
had been altered. Thus, people became more aware of various social movements
advocated by scholars to professionals, and psychiatrists to educators. To a great
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extent, they focused on human rights and QOL. For example, in the early 19th
century, efforts were made to morally and humanely treat mental illness patients
by creating an environment for them to work and enjoy their leisure time. Moral
treatment, at this point, emphasized kindness and respect in treatment (Peloquin,
1989). These influences are also reflected in social policies. For instance, during
the 1960s, U. S. President Johnson administrated the Great Society Programs
advocating equal of all citizens. The idea of “health care is a right” also emerged
(Drotar, 1998).
At that time, medical treatment became more effective. When longevity
increased, the public attention focused further on how to live a more meaningful
life. People not only wanted to live longer, but also healthier and better lives. In
addition, they demanded more respect of their human rights. Aside from the
attention given to human rights and QOL, the treatment model and the pattern of
therapeutic relationships between health professionals and patients were also
changed. The Americans with Disabilities Act (ADA, Pub. L. 101-336) promoted
equal opportunity in education and employment. It made gains to prohibit
discrimination, to lift barriers for people with disabilities in society, and to
improve their living environment. The role of health care also evolved from its
traditional role. Health care providers were the dominant leaders authorized in the
treatment relationships. In recent years, patients and family members have become
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more active and dominant, getting involved in the treatment and decision
making process. For example, according to the Individuals with Disabilities
Education Act Amendments o f 1997 (IDEA, Pub. L. 105-117), the child’s parents
and teacher are the essential members in the individualized education program
(IEP). Parents and the school district may invite other persons to participate in the
discussion process. Therefore, the benefits and needs of the child and family are
highly respected in health care service and education.
From a health reimbursement point of view, the measurement of QOL can
be considered a critical reference when deciding whether and how to pay for the
treatment programs. In many cases, medical insurance systems decide how to pay
for the health services using health outcome measures and monitoring systematic
health care programs. During the past decade, there has been a great interest in
evaluating the effectiveness of health care by measuring the achieved outcomes
(Patrick and Erikson, 1993). Furthermore, in cost benefit studies, the benefits are
measured not only in financial and productivity terms, but also the benefits that are
related to the QOL (Anderson, 1982). QOL can represent people’s subjective
perspectives of their life and health conditions. Assessing the objective health
status and subjective life satisfaction, the concrete effectiveness and the invisible
benefits of health services can be truly identified. After people perceive a better
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QOL, they may have a positive attitude to face sufferings in life and to live and
work in society, so then the ultimate goal of health services is achieved.
HRQOL for Children with Developmental Disabilities
The HRQOL of children with several specific health conditions and illnesses
has also been studied. According to population statistics, about one in every six
children in the United States was reported to have developmental disability (Boyle
et al., 1994). Based on the data reported by National Center for Education
Statistics, in 1998 to 1999, around six million American children from birth to age
21 were served by federally supported programs for students with disabilities (U.S.
Department of Education, 2000). In addition, Hogan et al. (1997) estimated that 12
percent of American school-aged children (age five to 17) had some types of
functional limitations in learning, communication, mobility, and self-care. It has
been proposed that young children with long-lasting somatic problems also have
an important life-long impact on all aspects of their lives and functioning. These
children’s underlying conditions or impairments influence their functional
performance in daily life. In the case of children with developmental delays, they
may have co-occurring illnesses or impairments, which can present complicated
effects in the lives of these children and their families. Children’s subjective
perceptions of their illness experiences are also important to therapists in
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understanding the children’s needs and feelings during different developmental
stages.
In reviewing the literature, much research was designed for studying the
HRQOL of children with a specific disease, such as asthma, epilepsy, or children
bom preterm. Saigal (2000) compared the parents’, the health professionals’, and
the children’s perceptions of health status and QOL of extremely low-birth weight
survivors. In this study, the children were 12-16 year-old teenagers. The major tool
used in this study was the Health Utilities Index (HUI). The significant differences
of HRQOL between extremely low birth weight group and control group teenagers
were reported in the results. For example, children with extremely low-birth
weight were reported to have higher frequency and more complex functional
limitation than children in the control group. Important to note, these results
showed consistency between parents’ reports of their child’s health states and the
teenagers’ reports of their own health states. This is important as the proposed
study will use parents’ reports to determine the child’s HRQOL.
Tideman et al. (2001) also examined samples of children bom with
extremely low-birth weight or preterm, in a follow-up of adolescents bom with
these two conditions. The adolescents’ somatic and mental health, self-esteem and
QOL were the variables of interest. In that study, researchers asked the adolescents
to rate their desirable QOL on a 100-graded Visual Analogue Scale (VAS-scale).
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Although the preterm subjects had more somatic problems than the full-term
subjects did, there is no significant difference of mental health, self-esteem, and
QOL between the two groups. The results showed that there was no correlation
between gestational age, birth-weight, and the somatic or mental health, and QOL.
QOL was not negatively affected by the prematurity of the adolescents bom
preterm. However, this study was not focused on the QOL during childhood but
during the adolescence. Moreover, many children with low birth weight in the
study did not have any disability or functional limitation.
The population of interest for this study was different from what reported by
the studies of Saigal (2000) and Tideman et al. (2001). These differences may be
caused by the differences of sample size or the measurement tools applied in these
studies. Tideman et al. (2001) focused on the symptoms and health problems of
children. The Health Utilities Index (HUI), used by Saigal (2000), is more
comprehensive and focuses not only on health status, but also on function and
ability, such as self-care and communication. This HUI reminds researchers that
long-lasting functional limitation and disability may have more influence on
children’s QOL. This point also supports the design of looking at children’s
functional skill used in this study.
Theunissen et al. (2001) used the TNO-AZI Preschool Quality of Life
(TAPQOL) questionnaire (Fekkes et al., 2000) to measure HRQOL in preschool
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children born preterm. They interviewed the neonatologists and the parents and
found differences between the neonatologists’ and the parents’ perception of the
children’s health situation (MANOVA canonical correlation F = 0.42, p - 0.182).
In this study, a lower HRQOL was found in children bom < 32 weeks than
children in a reference group.
Sawyer et al. (2001) studied the relationships between the QOL of children
with asthma and family functioning. The authors used the evaluation tools
specifically designed for children with asthma, such as the Asthma Severity Index
and the Pediatric Asthma Quality of Life Questionnaire (PAQOL). Family
functioning was measured by the Family Assessment Device (FAD), which
consists of one general functioning scale and six specific scales of family
adjustment (problem solving, communication, roles, affective responsiveness,
affective involvement, and behavior control). In the results, the relationship
between family functioning and children’s reports of the impact of asthma in their
lives was shown.
Arunkumar et al. (2000) asked children and parents to list important
concerns about living with epilepsy or caring for children with epilepsy. Ronen et
al. (1999) used qualitative research methods to identify the components of
HRQOL in childhood epilepsy. Parents and children generated 26 components of
five dimensions (the experience of epilepsy, life fulfillment and time use, social
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issues, and impact of epilepsy). Finally, 20 items were chosen that became a
Pediatric Epilepsy Quality of Life Assessment.
No studies could be found that examined younger children with multiple
chronic health conditions or unclear diagnosis such as developmental disabilities
or developmental delays, which were the target population for this research.
Developmental disabilities are reported as
The chronic health conditions, which are manifested as physical,
psychological, cognitive, or speech impairments. The diagnosis of developmental
disabilities can be emotional or behavioral problem, learning disability,
stammering, stuttering, or other speech defects, epilepsy, or repeated convulsions,
or seizures not associated with fever, blindness, deafness or trouble hearing.
(Boyle et al., 1994).
Children with developmental disabilities or developmental delays may need
to receive rehabilitation services and medical treatments. They need to develop
various mechanisms and strategies to adapt to the life in community, family, and
school. Sometimes, the children’s socio-emotional states and their subjective well
being may be affected by their impairments and performances. Therefore, an
important contribution to the literature would be the information regarding the
QOL of younger children with developmental delays.
Children at ages five to seven were the target population for this study.
Children in this age range are in transition from preschool to elementary school.
As a consequence, the child may need to learn many new skills for use in their
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day-to-day life, since most children at this stage are required to assume new and
different roles when they begin their school career. The child and his or her parents
will face more challenges and have to adapt a lot at early elementary school age.
Many children with developmental delays are receiving services at this age. It is
important to glean the information about these children’s performance in different
context, such as school and home. However, there is little literature about children
with developmental delays of this age. Therefore, information such as that
proposed by this study design will assist practitioners to understand the role of
quality of life and functional performance for early elementary school-aged
children.
Parents ’ Voices versus Children’ s Voices
The participants in this study were parents of children with developmental
delays between the age of five and seven. Most children with developmental
delays may have difficulties in literacy, including listening, speaking, reading and
writing. In addition, they may lack sufficient cognitive skills to understand and
complete the questionnaires. Many assessment tools for children at this age are
designed as interviews to parents since most children are still dependent on their
parent’s care and live with their family. Parents and caregivers are close enough to
familiarize or interact with the children. Usually, the parents are also the key
persons to arrange and decide for their children’s daily routine and occupations.
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Thus, parents can provide valuable information about their children’s health and
QOL.
Although the parent’s opinions may not totally represent the subjective
perception of the child, it is still important to examine and understand the
agreement between the proxy-rater (parent) and the children. Researchers propose
that the proxy ratings of parent can be considered as substitutions or
complementary information for children’s rating (Eiser and Mores, 2001).
Stronger agreement was found between the parent and the child in judging
externalizing problems and observable HRQOL domains, such as physical
HRQOL. However, there was less agreement in non-observable HRQOL domains,
such as emotional and psychological HRQOL (Eiser and Mores, 2001).
In practice, health professionals, patients, and caregivers may over- or
under-estimate the patient’s ability and HRQOL. Thus, the clinical decision
making process is dependent on the collaboration of health professionals, patients,
and caregivers. Moreover, the parent proxy-reports still have potential and value
for gathering information of young children’s HRQOL and functional skill.
Therefore, in this study, the main interests were the results of parent proxy-
reports and the relationship between the parent’s reports of HRQOL and the
functional skills of their children with developmental delays. In this study, the
major consideration of choosing the measurement tools to be utilized is placed on
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whether they can be administered by interviewing the parents of children or by
completion of parents.
Measurements
This study will apply two different types of health outcome evaluations: the
Pediatric Quality of Life Inventory (PedsQL) (Vami et al., 1999) for assessing the
children’s HRQOL and the Pediatric Evaluation of Disability Inventory (PEDI)
(Haley et al., 1992) for assessing the functional skills of children.
Considerations in measuring health outcome and QOL
Traditionally, health outcome evaluations included statistical data of
mortality, morbidity, hospital-readmission or re-treatment rates, the results of
diagnostic tests, progressive records, and complications (Bowling, 1995). For
example, some diagnostic tests are conducted or analyzed by equipment or
computer in a laboratory. Most of these evaluations are objective information and
are measured by health professionals.
In routine clinical health outcome measures, different health professionals
may concentrate on different aspects of clients’ states. For example, physical
therapists may focus on the patient’s bodily movement, muscle strength, and
walking gait, while occupational therapists may focus on the patient’s functional
independence and activities of daily living. However, the ultimate goal of all
health services and treatment is to improve people’s QOL, thus the subjective
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feelings of clients and family members are also clinically relevant. The patients’
subjective perspectives of their illness experience include a wide variety of factors,
such as satisfaction with their progress and the goals and expectations of their lives.
The measurement of subjective well-being and HRQOL can thus be valuable
outcome indicators for treatment (Drotar, 1998).
Measurement tools for children
Most of the QOL measures were originally designed for adults, such as the
Short Form-36 (SF-36) (Ware and Sherboume, 1992), and WHOQOL (the
WHOQOL Group, 1994). Among the QOL tools, the most widely used and well
developed are the generic tools designed for adults with specific diseases like the
stroke-specific QOL scale (SSQOL) (Williams et al., 1999). Assessment that of
children differs and is more complicated than the evaluation that of adults. For
instance, there exist several critical issues related to the content and availability of
children’s assessment tools. There seems the need to design various testing items
for children of different developmental stages. Choosing a credible informant who
can give accurate information about the child’s life and abilities is another
impediment when assessing children. Another issue to consider lies on deciding
the appropriate way of implementing the measure for children with multiple
disorders. Furthermore, the original concept, the target population, the content and
the spirit of the tool need to betaken into account. Thus, the selection of
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appropriate is regarded as an important process for both research and clinical
assessment.
This study requires that both the HRQOL and the functional skill would be
measured. Most HRQOL tools, such as the Child Health Questionnaire (CHQ), the
Child Health and Illness Profile-Adolescent Edition (Starfield et al., 1995), and the
Multiattribute Health Status Classification (Health Utilities Index) (Torrance et al.,
1996) mainly focus on the intensity of symptoms of illness or the complaints about
somatic problems, whereas other measurements, such as the HRQOL (Kozinetz et
al., 1999), Perceived Illness Experience (PIE) (Eiser et al., 1995), Pediatric Quality
of Life (PedsQL) (Vami et al., 1999) are focused on the patient’s perception of
their daily life and illness.
This study sought to examine the relationship between HRQOL and
functional skills of children with developmental delays. Here, two measurement
tools were selected. The Pediatric Quality of Life Inventory (PedsQL) (Vami et al.,
1999) is a tool used for measuring HRQOL. PedsQL, as a well established tool,
derived from Pediatric Cancer Quality of Life (PCQL), and designed to be a
generic pediatric QOL measure used across various pediatric chronic health
conditions (Vami et al., 1999). It measures the children’s and the parent’s
perceptions of the children’s HRQOL as defined in terms of the impact of disease
and treatment on an individual’s physical, psychological, and social functioning,
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and by disease/treatment-specific symptoms. It has been used on children at
different hospital specialty clinics (such as orthopedics, cardiology, rheumatology,
and diabetes), and has showed satisfactory validity and reliability (Vami et al.,
2001). Presently, it is the more widely used and more thoroughly developed tool
than other HRQOL tools.
The functional status measurements focus on how the independence status
or assistance level required to engage in occupation is influenced by health
conditions. Among children, functional performance and occupations consist of
activities in various living environments, such as in home, classroom, playground,
and community. The major occupations of children can be self-care in daily
activities (dressing, eating, bathing, etc.), school performance (learning, physical
education, etc.), and social interaction (living with family members, interacting
with peers, etc.). Each occupation consists of multiple performance components
that indicate basic abilities. The performance of an occupation can be viewed as
part of the indicators of children’s health outcome. For example, while playing a
basketball game, a child needs good visual and tactile perception, muscle strength,
gross motor, and cognition ability to perform various actions in this activity, such
as running, jumping, receiving and throwing the ball. In understanding children’s
occupations or functional performances, therapists proposed an occupation-
centered top-down model for children to stress the occupation focus in the
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assessment process of gathering relevant information and intervention (Fisher
and Short-DeGraff, 1993). Thus, this study centers on the measurement of young
children with disabilities’ functional skills when engaged in daily occupations.
The Functional Independence Measurement for Children (WeeFIM) (Msall
et al., 1994) and the Pediatric Evaluation of Disability Inventory (PEDI) (Haley et
al., 1992) are two widely used functional measurements for children. The
functional Independence Measurement for Children (WeeFIM) (Msall et al., 1994)
is one of the well established instruments used to measure the functional
performance of children in three domains: self-care, mobility, and cognition.
Another well established tool is the Pediatric Evaluation of Disability Inventory
(PEDI) (Haley et al., 1992) which consists of mobility scale, self-scale, and social
function scale. It was designed to serve as a descriptive measure of the child’s
current functional performance, as well as a method for tracking change across
time. It can be administered by interviewing participants’ parents or caregivers.
Appropriate to be measured by this tool are children between the ages of six
months and seven years. The PEDI is composed of three scales: the mobility scale
that measures capabilities, such as locomotion and chair/wheelchair transfers; the
self-care scale that determines the child’s independence in feeding, dressing,
bathing, fastening, and toileting; and the social function scale which evaluates the
child’s communication skills, self-identification skills, safety, participation in peer
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play, and ability to problem solve. The level of caregiver assistance needed to
accomplish major functional activities measures the functional performance.
Moreover, the PEDI is also a standardized assessment with normative data
and scoring procedures, measuring the children’s major daily occupation and
functional independence required in this study (Haley et al., 1992). The PEDI can
be applied to evaluate treatment effects or follow up children’s functional outcome
in studies. For example, the PEDI has been used to assess motor function in
children with cerebral palsy undergoing selective dorsal rhizotomy and was
sensitive enough to detect the changes in function (Nordmark et al., 2000). In
addition, it can also be used for comparing the clinical outcomes of children in
different diagnostic groups (such as traumatic brain injury, non-traumatic brain
injury, orthopedic, and neurological) (Haley et al., 2001). This study utilized the
PEDI since it can gather comprehensive information of children’s functional
performance in their living environment (school, home, and community).
Relationships to Occupational Therapy Practice and Occupational Science
Most individuals are concerned not only about the symptoms of their illness
but also about its prognosis and life-long impact — their future Quality of Life
(QOL). As a result, holistic practices such as occupational therapy seek to address
the physical and the psychological state of the individual, simultaneously. The two
items (QOL and functional skill) in this study are related to human’s physical state
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and psychological state. Some evidence supports the relationship and connection
between the physical state and the psychological state. For instance, Adolf Meyer
proposed a dynamic “psychobiological” approach during the Mental Hygiene
Movement (Lidz, 1966-67). He believed that patients were not only an individual
with separated organs, but also a unit with mind-brain-body connection. In the
theoretical base of Sensory Integration and Model of Human Occupation (MOHO),
the mind-brain-body relationships were also stressed (Fisher and Kielhofher, 1995).
It states that a human behavior can be performed by body kinesthesia, directed by
the mind, and influenced by the environment. The three systems always influence
and co-ordinate with each other. A person’s feelings and thoughts are also
important to his or her health and life. Establishing healthy behavior and habit
improve the state of health and contribute to a satisfactory lifestyle.
Therefore, health care providers need to discuss and communicate the
treatment goal and decision together with patients and family members. In addition,
subjective feelings and life satisfaction are also highly respected and clinically
relevant, as evidenced by recent medical care systems. The significance of
subjective satisfaction also supports the development of the QOL idea and
enforces the decision-making process in the clinic.
Theoretically, scholars of occupational science defined occupation as
purposeful engagement in the meaningful activities that enrich our lives (Yerxa et
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al., 1990). The knowledge and theory about the form, function, and the meaning
of human occupation can assist the therapist to integrate different parts of the
patient’s illness, abilities, needs, life contexts, and hopes in a whole picture.
Occupational scientists and occupational therapists have helped the elderly people
to design a worthy lifestyle and through developing the adaptive strategies and
exploring the meaningful occupations in community to create better life
satisfaction (Jackson et al., 1998). In this study, the researchers also sought to
examine the relationship between function and QOL. The measurement tools used
were the Functional Status Questionnaire to measure the functional activities of
the well elderly, and the Life Satisfaction Index-Z to measure their life satisfaction.
Results showed that occupational therapy preventive treatment could benefit the
health, function, and QOL domains of older adults (Clark et al., 1997).
In clinical practice, pediatric therapists consider the critical occupations and
performances of children’s living context and environment. Furthermore, there is a
need to identify the personal expectations, the child’s strengths and the limitations
in these occupations. Therapists can then discuss treatment goals and design
intervention programs with children, parents, and teachers. The treatment program
can be specifically connected with children’s daily tasks and embedded into the
living environment to improve their basic abilities or overcome functional
limitations. Additionally, the results of functional measurements may assist
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therapists realize the needs and major problems of the child. Therapists can also
utilize functional measurements to follow up health outcomes and maximize
treatment effectiveness.
This study applies the concept developed by the scholars of occupational
science and occupational therapy to explore the relationship between HRQOL and
functional skill. In occupation-centered practice, humans can be viewed as
occupational beings. Therapists mainly focus on the meaning of occupation to
patients. They are concerned about how people can perform their occupation with
the greatest satisfaction and fulfillment.
Research Question: Assumption and Rationale
This study sought to answer the question posed, “What is the relationship
between parents’ reports of their young child with developmental delays’ health-
related quality of life as measured by the Pediatrics Quality of Life Inventory
(PedsQL) and the child’s functional skills as measured by the Pediatrics
Evaluation of Disability Inventory (PEDI)?” The hypothesis for this study
proposed that functional skill is related to QOL. These two variables can be related
to and be influenced by one another. For example, as the child identifies the major
and meaningful occupations he/she is truly interested in, he/she will seek to
overcome any physical limitations or environmental challenges to perform the
occupations or activities. Through this process, the child’s physical and mental
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states are activated and he/she will also engage in his/her daily occupation with
greater motivation and satisfaction. After the child objectively improves his/her
participation in and adaptation to his/her daily life and living environment, the
subjective well-being and satisfaction can also be promoted. Therefore, QOL and
functional skill could be pictured as a circle with each influencing the other. If
there is a strong relationship between HRQOL and functional skill, then therapists
will be more confidence that occupation-centered practices focused on improving
the child’s functional skills will most likely influence the child’s QOL.
In contrast, if there is not a strong relationship between HRQOL and
functional skill, during the clinical decision making process, therapists may
consider HRQOL and functional skill as two separated issues, and perhaps,
develop individual treatment approaches to address both of these aspects of the
child and family’s needs.
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Chapter 3
Method
Participants
The participants in this study are the parents of children with developmental
delays as the main objective was to examine the association between parent reports
of their child’s health-related quality of life (HRQOL) and functional skill.
One parent of each child participated in the study. A total of twenty-nine
parents of children with developmental delays partook in this research. The
inclusion criteria for participants were: (a) a parent of a chronologically five to
seven year old child that was reported to have a developmental delay and was a
student in kindergarten or elementary school, (b) a parent living with the child, (c)
a parent having a basic English reading proficiency needed to complete the
inventories in this study or willing to use the skills of an interpreter. The various
definitions of parent used in this study included a biological or adoptive parent, a
stepparent, or a grandparent. The diagnosis of developmental delay or disorder for
the children of interest was obtained by parent or rehabilitation personnel report.
Recruitment
During July and October 2002, the investigator contacted the therapists,
treatment centers, and parent support associations that provide services for
children with developmental delays. Five treatment settings and one parent
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association participated in locating parents that were eligible for this study:
Therapy West, Therapy in Action, Pediatric Therapy Center of Glendale Adventist
Medical Center, Child Development Center, Pediatric Therapy Network, and
Chinese Parents Association for the Disabled around Los Angeles County Area
(see Table 1).
Table 1 . Strategies for Recruiting Participants
Recruitment
strategies
Clinic/ Association Location in
California
No. of
participants
recruited
Therapist
Recommendation
Therapy West Los Angeles 2
Therapy in Action Tarzana 2
Child Development Center Simi Valley 6
Personal contact Pediatric Therapy Center of
Glendale Adventist Medical
Center
Glendale 14
Chinese Parents
Association for the
Disabled
Southern
California
5
Mailing fliers Pediatric Therapy Network Torrance 19*
* Ninety fliers and letters were mailed to parents from the clinic.
From July to October 2002, 48 packages were sent out to parents directly or
by mail. Out of these 48, 30 packages (62.5%) with finished inventories were
returned. The data of 26 participants were completed in four inventory forms. In
the three packages with several data missing, the investigator contacted the parents
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through electronic mail or by telephone to complete the items missed. Therefore,
29 participants with filled out inventory forms were used.
Demographics
To understand the sample of this study, demographic data was gathered and
recorded in demographic data form (see Appendix A). The demographic data
included information about the sample, such as the parent’s gender, age, ethnic
group, grade placement, child’s gender, age, ethnic group, employment, and years
of education.
Demographics data o f family and parent
Family. Among the families who participated in the study, data showed that
six were single-parent families; six parents had only one child without sibling; and
six parents had family members including other children with chronic health
conditions, such as autism spectrum disorder, asthma, and attention deficits, etc.
Parents. In this study, 26 (89.7%) mothers and three (10.3%) fathers were
included. The parents belong to the age bracket from 26 to 47 years (Mean = 39.59,
SD - 5.487). In terms of educational attainment, three (10.3%) parents were senior
high school graduates, 18 (62.1%) parents had several years’ college or university
coursework or a college degree, and eight (27.6%) had a graduate degree. Most
parents were well educated and are English speaking, except for one parent’s
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English was second language. This parent preferred an interpreter to help her to
read the inventories.
Children. There were 26 (89.7%) boys and three (10.3%) girls included in
this study. Children aged from five to seven years and nine months old (7.75 years).
The average age of the sample was 6.46 years (SD = .933). For children’s
educational level, nine (31.0%) were kindergartners, eight (27.6%) were first grade
students and 12 (41.4%) were second grade students.
Ethnicity o f participants
Figure 1 showed frequency of ethnicity of children and parents. The sample
included parents and children of different races, including Caucasian, Asian/
Pacific Islander, African and Hispanic, American, and the mixed-ethnicity children.
The Caucasian was the majority ethnicity group in this study, followed by the
Asian/ Pacific Islander. In addition, seven parents had a child with mixed-blood.
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American
Mixed
Hispanic and
•'S African
■ Child
S Parent
W
Asian/ Pacific
Islander
White,
Caucasian L
0 10 20 30 40 50 60
Percentage (%)
Figure 1 . Ethnicity of Parents and Children (n = 29)
Diagnosis o f children. For children’s diagnosis, four types of major diagnosis
were reported, including autism spectrum disorder, dysfunction in sensory
integration, speech and language delay, and other diagnoses (Down’s syndrome,
seizure, cerebral palsy, FG syndrome, optic atrophy, myotonic dystrophy, partial
7q disorder) (see Fig 2). The autism spectrum disorder was the primary diagnosis
in this study. In this sample, 22 out of 29 children were reported with one
diagnosis, and seven out of 29 children were reported with mixed diagnosis. Out
of these seven children, five had a diagnosis of autism spectrum disorder and other
types of developmental delay, and two had problems in multiple sensory or
perceptual systems.
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In this sample, most children recruited were from clinics providing
rehabilitation services. Twenty-eight of the 29 children were received occupational
therapy service. Most children received more than one type of rehabilitation
service, such as physical therapy, speech and language therapy, music therapy, or
behavioral therapy.
Other diagnosis (Down's syndrome, seizure,
cerebral palsy, FG syndrome, optic atrophy,
myotonic dystrophy, partial 7q disorder)
Speech and language delay
Sensory integration issues
~2
Autistic disorder
_ ! _ _ _ _ _ _ _ _ _ _ _ _ _ 1 _ _ _ _ _ _ _ _ _ _ _ _ _ J
0 10 20 30 40 50 60 70
Percentage (%)
Figure 2. Types of Children’s Diagnosis (all that apply)
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Measurement Tools
Two tools were used in this study: the Pediatric Quality of Life Inventory™
(PedsQL™, Version 4.0) (Vami et al., 1999) and the Pediatric Evaluation of
Disability Inventory (PEDI) (Haley et al., 1992).
Pediatric Quality o f Life Inventory ™ (PedsQL ™ , Version 4.0)
The PedsQL™ was used to measure the parents’ reports of children’s
HRQOL. The PedsQL™ can be used for healthy school and community
populations, as well as pediatrics populations with acute and chronic health
conditions. The PedsQL™ measurement model includes both generic core scales
and disease-specific modules in one measurement system (Vami et al., 1999).
Disease-specific modules are available for several health conditions, such as
asthma, rheumatology, diabetes, cancer, and cardiac disease. Some of these
additional modules are in the planning stages. (Vami et al., 1999).
The PedsQL™ consists of developmentally appropriate forms for children at
ages two to four, five to seven, eight to 12, and 13 to 18 years. Pediatric self-report
is measured in children and adolescents at ages five to 18, and parent proxy-report
of child HRQOL is measured for children and adolescents at ages two to 18 (Vami
et al., 1999). This study used the parent-proxy report form for children ages five to
seven.
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This study made use of the generic core scales, because there was no
disease-specific module for developmental delays in this system. The 23-item
PedsQL™ 4.0 Generic Core Scales were designed to measure physical, mental, and
social dimensions of health, as well as school functioning. This tool encompasses
the following subscales: (a) physical functioning (eight items), (b) emotional
functioning (five items), (c) social functioning (five items), and (d) school
functioning (five items). The three summary scores are total scale score (including
four subscales, 23 items), physical health summary score (physical functioning,
eight items), and psychosocial health summary (including emotional, social, and
school functioning subscales, 15 items) (Vami et al., 1999) (see Table 2, Appendix
B).
The scales of PedsQL™ are easy to score. For example, there is a zero to
four scale in the parent proxy-report form, which asks the parents about the
frequencies of a problem the child has. Parents can take five to 10 minutes to fill
out the form independently. The raw scores are transformed into a zero to 100
scaled score, with the higher scaled score indicating the better HRQOL (Vami et
al., 1999). In this study, the researcher used the scaled score as the data for
statistical analysis.
The PedsQL™ 4.0 has been translated into Spanish and Arabic while
translations in German and Dutch are still in progress (Vami et al., 1999). The
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researcher used the original English version in this study due to the English
literacy of the parent-proxy participants. Reviewing the answers on the inventories
to determine if parents could comprehend the meaning of the inventories identified
the English literacy of parents.
A field trial to assess the reliability, validity, responsiveness, and practicality
of the PedsQL™ Generic Core Scales (Vami et al., 1999) found out that the tool’s
reliability was sound, with the alpha value of the total scale score reported at 0.88
for the child self-report and 0.90 for the parent proxy-report. The PedsQL™ has
been used to distinguish healthy children and children from acute and chronic
health conditions and is responsive to the change over time (Vami et al., 1999).
Table 2. The Scales o f PedsQL ™
Summary Scores (No. of items) Subscale (No. of items)
Physical Health Summary Score (8) Physical functioning (8)
Psychosocial Health Summary Score (15) Emotional functioning (5)
Social functioning (5)
School functioning (5)
Total Scale Score (23)
The Pediatric Evaluation o f Disability Inventory (PEDI, Version 1.0)
In this study, the Pediatric Evaluation of Disability Inventory (PEDI, Version
1.0) (Haley et al., 1992) was used to measure children’s functional independence.
It is a comprehensive clinical assessment of key functional capabilities and
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performances in children age six months to seven years. Capability can be
operationalized by the children’s mastery and competence of functional skills. The
three parts of this assessment are functional skills, caregiver assistance, and
modifications, each of which consists of functional activities in three domains:
self-care, mobility, and social function (Haley et al., 1992) (see Table 3).
The Functional Skill Scale of PEDI (see Appendix C) was used in this study,
because the information in this subscale is more capable to answer the question
about child’s functional skill and his/her capability in daily living that would be
explored further in this study. The parents filled out the form independently which
could take about 30 minutes. The raw score of each domain in the functional skills
assessment can be transformed to a zero to 100 scaled score and the normative
standard score (Haley et al., 1992). The scaled score was used in the statistical
analysis of this study.
The authors of the PEDI reported good psychometric properties (Haley et al.,
1992). For example, the alpha values of the internal consistency in each domain
are higher than 0.95. Take note that the correlation between the PEDI and the Wee-
Functional Independence Measure (WeeFIM) were high (r = 0.80 - 0.97) in similar
domains. Moreover, the PEDI can also distinguish the results between the
normative and the clinical sample. Thus, the PEDI was standardized and the norm
was established (Haley et al., 1992).
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The PEDI has been translated to many different languages, however only
the English version was used in this study.
Table 3. The Scales ofPEDI
Domain (No. of items) Subscale (No. of items)
Functional Skills (197) Self-care (63)
Mobility (59)
Social Function (65)
Caregiver Assistance (20) Self-care (8)
Mobility (7)
Social Function (5)
Modification Frequencies (20) Self-care (8)
Mobility (7)
Social Function (5)
Open-ended Questionnaire
A simple researcher-designed open-ended questionnaire was used in this
study (see Appendix D). The questionnaire consisted of four open-ended
questions:
1. What are the five most important concerns perceived by your child in
his/her daily life?
2. In your opinion, how would you describe your child’s health?
3. In your opinion, how would you describe your child’s satisfaction in
his/her daily life?
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4. When does your child feel happy? Please list one or two examples.
Since the PedsQL Generic Core Scale measures the children’s QOL and asks
about the frequency where parents do feel their children’s burden in doing such
daily activities, this open-ended questionnaire was designed to understand the
parents’ perceptions of children’s important concerns, health, and life satisfaction
in their daily lives. Although the items and activities contained in the PedsQL were
the generic and universal activities for most typical and untypical children, there
was no assurance whether those items correspond to the important concerns and
problems as perceived by the children in this study. To capture the life satisfaction
and important concerns of children in this study, the researcher designed the
questionnaire with four open-ended questions to ask parents about children’s daily
lives. The difference between the reports in this questionnaire and the contents of
the PedsQL were compared and analyzed to explore which domains and items had
already been contained in the scale and which domains were also important and
need to be mentioned and be included.
Procedure
Procedure and strategies
Several strategies were applied to contact and to recruit parents in different
clinics, ranging from recommendation from therapists in fields to personal contact
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in clinics to mailing fliers and postcards to parents (See Table 3). The steps
employed to send out and to finish the inventories including:
1. When parents agreed to participate in the study, the informed consent form, the
inventory forms, the questionnaire, the printed instruction, the postage-paid
envelope, the thank card and small gifts were mailed or sent out.
2. The informed consent forms (see Appendix E), together with the statement of
the purpose of the study, the risks and the benefits in this study, signed by the
investigator, were read by parents and signed by the parent and a witness.
3. A printed instruction was used to inform the parents about the step-by-step
procedure of filling the inventories. The English proficiency was assumed for
these participants based upon their education level in English speaking school,
as reported by the parents. In addition, answers on the inventories were
reviewed to determine whether the parents could comprehend the meaning of
the inventories.
4. When the investigator personally met the parents in the clinic setting, the
investigator would read, word for word, the contents of the informed consent
form and its instructions. The investigator also discussed with parent whether
the inventories were completed directly at one time or were taken home and
returned by mail.
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5. The parents independently filled out the demographic data form, followed by
the PedsQL and the functional skill scale of PEDI. Then, they were asked to
complete the open-ended questionnaire. Afterwards, whenever there were
inquires, the parents were instructed to ask the researcher questions directly or
reach the researcher through electronic mail or by telephone. The inventories
were returned to the investigator after they were completed.
Data Analysis
Descriptive Statistics
The total scale score, the physical health summary score, and the
psychosocial summary score of PedsQL of each child were recorded and
summarized. The mean value, the standard deviation, and the distribution range of
these scores were recorded. On the other hand, the total scaled score of the
functional skill scale and the scores of three subscales (self-care, mobility, and
social function) of the functional skill domain of PEDI were recorded and
summarized. The mean value, the standard deviation, and the distribution range of
these scores in the sample were estimated and reported.
Quantitative data analysis
Examining the association between parents’ reports of their children’s
HRQOL and functional skill, the researcher attempted to determine how children’s
mastery and capabilities are related to the generic HRQOL. This question was
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examined using the correlation between the total score of functional skill domain
in PEDI and PedsQL. The Pearson correlation coefficient with an alpha level
of .01 was used for statistics.
The five sub-questions of this study are:
1. What is the association between the children’s functional capabilities as
measured by PEDI functional skill scale and their psychosocial HRQOL as
measured by PedsQL psychosocial health subscale? In answering this question,
the correlation between the total score of the functional skill scale and the
psychosocial health subscale of PedsQL was analyzed. A Pearson correlation
coefficient with an alpha level of .01 was used for statistical decisions.
2. What is the relationship between the capabilities of physical functional skill
(self-care and mobility skills) and the physical HRQOL of children? To answer
this question, the correlation between the physical health subscale of PedsQL
and the summary score of self-care and mobility scales in PEDI functional skill
scale was analyzed. The Pearson correlation coefficient with an alpha level
of .01 was used for statistics decisions.
3. What is the correlation between the children’s social function and psychosocial
HRQOL? For this question, the relationship between social function subscale
of PEDI functional skill scale and the psychosocial health subscale in PedsQL
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was analyzed. The Pearson correlation coefficient with an alpha level of .01
was used for statistics decisions.
4. What is the connection between the physical health summary score and the
psychosocial health summary score within the PedsQL? With this question, the
correlation between the scores of these two scales was analyzed. The Pearson
correlation coefficient with an alpha level of .01 was used for statistics
decisions.
5. What is the association between the physical functional skill as measured by
self-care and mobility subscale of PEDI functional skill scale and psychosocial
HRQOL? For this question, the correlation between self-care and mobility
subscale of PEDI functional skill scale and the psychosocial health summary
score in PedsQL was analyzed. The Pearson correlation coefficient with an
alpha level of .01 was used for statistics decisions.
The scores were summarized and the data were analyzed using statistic
software SPSS Version 11.0 for Windows.
Qualitative data analysis — content analysis
1. What are children’s important life concerns as reported by their parents? Here,
all concerns reported were summarized and placed into categorized in table.
2. Does PedsQL Generic Core Scale capture most important concerns in
children’s daily life as identified by their parents? For this question, parent’s
43
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reports of four open-ended questions in the questionnaire were summarized
and categorized. All answers reported in the survey were transcribed,
contrasted and categorized with each domain and item in PedsQL Generic
Core Scale to determine how the content of the survey and the PedsQL were
matched to each other. The important issues and concerns mentioned by
parents, which did not appear in the PedsQL Generic Core Scale were put into
categories or were listed as new categories and items.
3. How do parents describe their children’s health and satisfaction of daily life?
To explore the meaning and nature of health and life satisfaction in parents’
subjective perspectives, the responses to the question were summarized. The
relevant information reported by the parents was reviewed to determine the
parents’ perception of their children’s health and QOL and the difference
between the two.
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Chapter 4
Result
Descriptive Statistics
Score results o f PedsQL scales
PedsQL encompasses one total scale score and two subscale scores (physical
health summary score and psychosocial health summary score). The inventory
asked the parents how much of a problem each item has affected the child. Each
item was transformed and presented through a zero to 100 scale score (0: almost
always be a problem, 25: often be a problem, 50: sometimes a problem, 75: almost
never a problem, 100: never a problem) (Vami et a!., 1999). Table 4 shows the
score summaries of subscale for PedsQL, and the frequencies of scales are shown
by Figure 3, 4, and 5.
Total scale score. The mean score of the PedsQL total scale score for these
29 children was 58.1 (n = 29, SD = 17.78), with a range from 21.7 to 97.8 (see
Figure 2). Most life domains and items in this inventory were reported almost
never or sometimes regarded as a problem. Although there were a wide
distribution range in this scale, most population in this study were located in
middle score range. It still appeared quite near a normal distribution of the total
PedsQL score. Compared to the total PedsQL scale score (Mean - 80.87, SD =
16.73) of the normative sample of 1622 children with and without health
45
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conditions aged between two and 18 years (Vemi et al., 2001), the children’s
HRQOL scores in this study seemed to be lower than the larger population.
12
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■ ■ Std. Dev = 17.78
Mean = 58.1
N = 29.00
20.0 30.0 40.0 50.0 60.0 70.0 80.0 90.0 100.0
PedsQL total score
Figure 3. Frequency of PedsQL total scale score.
The physical health subscale score o f the PedsQL. The mean score was 64.0
(n = 29, SD = 25.04). There was a wide distribution range with score from 6.25 to
100 (see Figure 3). Its score distribution was skewed and tended to the moderate to
high score level (over 50) and also appeared a bimodal distribution in this study. It
meant that one group of children in this study with higher score around 90 had
very little problems on physical activities and the other group of children with
46
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lower score range around 50 usually had some problems on physical activities.
Compared to the physical health summary score (Mean = 81.38, SD = 23.18) of
normative sample of 1613 children with and without health conditions aged 2 to
18 years old (Vemi et al., 2001), the children’s physical health summary scores in
this study were also lower than the larger normative population.
Std. Dev = 25.04
Mean = 64.0
N = 29.00
— « -------------^paaaam e a a g i i i iii m i............„ i
10.0 30.0 50.0 70.0 90.0
20.0 40.0 60.0 80.0 100.0
Physical subscale score of PedsQL
Figure 4 . Frequency of physical health subscale score of PedsQL.
The psychosocial health subscale score o f the PedsQL. The mean score of
the psychosocial health summary score was 54.78 (n = 29, SD = 16.85), with a
range from 21.67 to 98.33 (see Figure 5). Most population in this study were
47
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located in a middle score level (from 40 to 80), and the score range curve tended
to be a normal distribution. The children’s psychosocial health summary scores in
this sample were lower than the scores of a larger normative population (Mean =
80.58, SD = 16.52, n = 1621) (Vami et al„ 2001).
10 1 --------------------------------------------------------------------------------
8 *
20.0 30.0 40.0 50.0 60.0 70.0 80.0 90.0 100.0
Psychosocial subscale score of PedsQL
Figure 5. Frequency of psychosocial health subscale score of PedsQL.
In this study, the children’s psychosocial health subscale mean score was
about 10 points lower than the physical health summary score, which was greater
than the difference between the mean scores of physical health subscale (Mean =
81.38) and psychosocial health subscale (Mean = 80.58) in the normative sample.
48
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This means the parents reported that their children experience a better life
quality and more satisfaction on physical functioning, rather than on emotional
functioning and social functioning of their children in this study.
Scores o f PEDI Functional Skill Scale
PEDI Functional Skill Scale encompasses self-care subscale, mobility
subscale, and social function subscale, and is presented in a zero-to-100 scaled
score. The scaled scores describe the child’s performance related to the maximum
possible score on the PEDI (Haley et al., 1992). The PEDI is designed for the
functional evaluation of young children with ages from six months to 7.5 years,
which means that 7.5-year-old children with no disabilities are expected to
perform most items and have the highest scaled score (100) in each subscale.
Table 4 shows the score summaries for scales of PEDI, and the frequencies
of scales of PEDI are presented by Figures 6, 7, 8, 9, and 10.
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Table 4. Score summaries for subscale o f PedsQL and PEDI (n ~ 29)
Mean SD Minimum Maximum
PedsQL
Total score 58.06 17.78 21.74 97.83
Physical health subscale score 64.01 25.04 6.35 100
Psychosocial health subscale 54.78 16.85 21.76 98.33
score
PEDI
Functional skill mean score 68.44 9.88 33.23 85.30
Physical functional skill 75.07 11.15 31.35 92.55
(self-care and mobility)
Social function scaled score 55.12 10.79 36.10 77.30
Scaled score o f functional skill scale. In this study, the functional skills score
were reported as the average score of three subscales (self-care, mobility, and
social function subscale). The mean of this functional skills score was 68.44 (n =
29, SD = 9.88), with a score range from 33.23 to 85.3 (see Figure 6). It means that
these children showed the capabilities to perform on 68.44% items of PEDI
functional skill scale in average. Most children in this study had scores located
within a range between 65 to 75 skewed from middle to higher level, however
only one child had very low functional skill score.
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Std. Dev = 9.88
Mean = 68.4
N = 29.00
35.0 45.0 55.0 65.0 75.0 85.0
40.0 50.0 60.0 70.0 80.0
Scaled score of PEDI functional skill scale
Figure 6 . Distribution and frequency of PEDI functional skill scaled score.
Scaled score ofphysical functional skill subscale. With a range from 31.35 to
92.55, the mean of physical functional skill score was 75.07 (n = 29, SD =
11.15)(see Figure 7). In this study, the physical functional skill score was defined
as the average score of the self-care subscale and the mobility subscale. The mean
of self-care subscale score was 61.56 (n = 29, SD = 11.06) (see Figure 8), which
entailed that these children would perform 61.56% items on the self-care subscale
in average. The score ranged from 28.0 to 85.1 and the score distribution was
approaching a normal distribution. On the other hand, the 88.57 mean of mobility
subscale (n = 29, SD = 13.61), with a range from 34.7 to 100 (see Figure 9)
51
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indicated that children referred in this study were capable to meet the 88.57%
items in the mobility subscale. Most children had mobility subscale scores higher
than 80, with a score range skewed to a higher range level. The mean score of
mobility subscale was 27 points higher than self-care subscale.
10
8
6
4
2
Std. Dev = 11.15
Mean = 75.1
N = 29.00
0 LL
30.0 40.0 50.0 60.0 70.0 80.0 90.0
35.0 45.0 55.0 65.0 75.0 85.0 95.0
Physical functional skill score of PEDI functional skill scale*
Figure 7 . Frequency of physical functional skill subscale score of PEDI functional
skill scale.
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CD 1
3
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Mean = 61.6
N = 29.00
30.0 40.0 50.0 60.0 70.0 80.0
35.0 45.0 55.0 65.0 75.0 85.0
Self-care subscale score of PEDI functional skill scale
Figure 8. Frequency of self-care subscale score of PEDI functional skill scale.
53
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12.
1 0 .
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= J
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Std. Dev = 13.61
Mean = 88.6
N = 29.00
L l.
30.0 40.0 50.0 60.0 70.0 80.0 90.0 100.0
Mobility subscale score of PEDI functional skill scale
Figure 9. Frequency of mobility subscale score of PEDI functional skill scale.
Scaled score o f social function subscale. The mean scaled score of social
function subscale was 55.12 (n = 29, SD = 10.79), with a score ranging from 36.1
to 77.3 (see Figure 10). This meant that children performed 55.12% items of social
function subscale. The score range of this subscale was moving towards a normal
distribution.
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V
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Mean = 55.1
N = 29.00
35.0 40.0 45.0 50.0 55.0 60.0 65.0 70.0 75.0
Social function subscale score of PEDI functional skill scale
Figure 10. Frequency of social function subscale score of PEDI functional skill
scale.
The average score on the mobility subscale was 27 points higher than the
self-care subscale, indicating that the children referred in this study performed
better on mobility functioning than on self-care functioning. In contrast, the
average score of social function subscale (Mean = 55.12) was lower than the mean
score of mobility and self-care subscale (Mean = 75.07), which suggested that
these children have performed better on physical functional skill than on social
function.
55
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Considering that the PEDI functional skill scale score was designed for
measuring functional capabilities of children with ages ranging from six months to
7.5 years, children with the age range from five years to 7.7 years were expected to
perform most items in the scales. Conversely, children in this study had lower
scored range on several scales (such as the social function subscale and the self-
care subscale) than it was expected.
The raw score of each subscale can also be transformed to the standard score,
which compares child’s capability to peers in the same age range (Haley et al.,
1992). In this sample, 25 (86.21%) children were below negative (-) 2 standard
deviations of their age group on self-care subscale, which implied that most
children in this study had lower self-care function than the 95% children in the
normative population of their age group. On mobility scale, fifteen (51.72%)
children rested below negative (-) 2 standard deviations of their age group on
mobility subscale, indicating that the children’s mobility function was lower than
95% population in the same age group. Regarding the social function subscale,
twenty-three (79.31%) of the participants were below negative (-) 2 standards
deviations of their age group. This meant that the social function of 79.31%
children in this study was lower than the 95% population in the same age group.
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Statistical Analysis
Association between children’ s HRQOL and overall functional skill
Taking into consideration the primary objective of the study, which was to
examine the association between parent report of their child with developmental
delays’ HRQOL and functional skill, the correlation between the total score of
functional skills domain in PEDI and the total score of PedsQL were analyzed. In
this study, the strength of the correlation coefficient standard defined by Munro
(1997) was referred. Munro (1997) defined that a correlation is “little if any” as an
r of .00 to .25, a low correlation as an r of .26 to .49, a moderate correlation as an r
of .50 to .69, a high correlation as an r of .70 to .89, and a very high correlation as
an r of .90 to 1.00. Using the Pearson Correlation test (1-tailed), the correlation
between PEDI functional skill scale score and the PedsQL quality of life score
were moderately high (r = .684, (X = .01). This revealed that the parents’ responses
about their children on PedsQL and PEDI functional skill scale were moderately
correlated with each other. Results of Pearson Correlation Coefficient for each
research question are presented in Table 5.
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Table 5. Pearson correlation between subscales o f PEDI functional skill scale
and PedsQL
Pearson Correlation
(1-tailed)
n=29
Total Score
PedsQL
Physical Health
Summary Score
Psychosocial
Health Summary
Score
PEDI
Functional Skills Total .684** .737** .527**
Score
Physical Functional Skill .610** .750** .396*
Score (Self-care and
mobility)
Social Function .618** .477** .628**
**. Correlation is significant at the 0.01 level (1-tailed).
*. Correlation is significant at the 0.05 level (1-tailed).
What is the association between the children’ s functional capabilities and
their psychosocial HRQOL? The correlation between scores of PEDI functional
skill scale and the psychosocial health subscale of PedsQL were moderately high
(r = .527, o c = .01), indicating the moderate correlation of the parents’ reports of
children’s functional capabilities and psychosocial HRQOL.
What is the relationship between the children’ s physical functional skill (self-
care and mobility function) and physical HRQOL? The correlation between PEDI
physical functional skill score and PedsQL physical health summary score were
high (r = .75, (X = .01), signifying the high correlation of the parents’ reports on
children’s physical functional skill and physical HRQOL.
58
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What is the correlation between the children’ s social function and
psychosocial HRQOL? The relationship between the scores of PEDI social
function subscale and the PedsQL psychosocial health subscale were moderately
high (r = .628, (X = .01), showing the moderate correlation between the parents’
reports about children’s social function skill and psychosocial HRQOL.
What is the association between the children’ s physical functional skill (self-
care and mobility function) and overall HRQOL? The correlation between PEDI
physical functional skill score and PedsQL total summary score were moderately
high (r = .61, (X = .01), revealing that the children’s self-care and mobility skill are
moderately correlated to their overall HRQOL.
What is the connection between the physical health summary score and the
psychosocial health summary score within the PedsQL? The PedsQL physical
health summary score and PedsQL psychosocial health summary score were
moderately correlated (r = .629, (X = .01), indicating that, in this study, there
existed a correlation between the scores of two domains within PedsQL.
What is the association between the physical functional skill and
psychosocial HRQOL? The correlation between PEDI physical functional skill
score and PedsQL psychosocial health summary score were low (r = .396, (X
= .05), showing that the scores of self-care and mobility skills were less correlated
59
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to the psychosocial HRQOL. This meant the two subscales in PEDI and PedsQL
measured items of different domians.
Effects o f demographic variables
In this study, the demographic variables (such as parent race, educational
level, child’s diagnosis, etc.) had no significant effect in this study since this group
of children did not differ in their scores of functional skills and HRQOL based
upon family and parental demographic variables (p > .1).
Qualitative data analysis- content analysis
Content analysis o f the PedsQL and the open-ended questionnaire. The
important life concerns of children as reported by their parents and the content of
the PedsQL Generic Core Scale, its items and domains, were contrasted and
categorized (see Table 6, 7, 8, 9, and 10). In total, almost half of the items (12/23)
of the PedsQL were not mentioned by parents as important concerns of their
children.
On the PedsQL physical functioning subscale, more than half of items (5/8)
were not mentioned by parents as the important life concerns of their children.
Three items were mentioned by the parent in the open-ended questionnaire as
important concerns, which included participating in sports activity and exercise,
taking a bath or shower by him/ herself, and low energy level. Additionally, the
five items reported by parents as important concerns though not contained in
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PedsQL physical functioning subscale were somehow related to safety issues,
toiler training, health conditions, and nutrition (see Table 6).
Table 6. Contrasts o f the reports on the simple survey and the PedsQL physical
functioning subscale
Pediatrics Quality of Life Inventory (PedsQL) Survey
Which are the five most important
concerns perceived by your child in his
or her daily life?
When does your child feel happy? Please
list one or two examples.
Physical Functioning (P)
Pl. Walking more than one block N/A
P2. Running N/A
P3. Participating in sports activity and exercise Feeling happy when engaged in a
physical type of game with another child
Inability to do physical things others do
Feeling happy when dancing
P4. Lifting something heavy N/A
P5. Taking a bath or shower by him or herself Bathing issues
Difficulties to clean himself
Bath time
Unable to take care of personal needs,
such as button, shoe laces, teeth
brushing, bathing (self-help skills)
Being too cold (usually after bath)
P6. Doing chores, like picking up his or her toys N/A
P7. Having hurts or aches N/A
P8. Low energy level Becoming over tired
Increasing mobility
(Addition) Safety issues
P9. Having awareness of safety in his or her - Safety issues (about herself, about
surrounding others)
Needs to be more aware of himself and
his surrounding (spatial awareness)
Be independent without having to be
concerned for his safety
Be able to see obstacles when walking
Very clumsy (falls out of chairs, etc.)
6 1
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Table 6 (continued).
P10. Going to toilet Toilet training
Potty training
Not yet toilet-training
P ll. Cooperating with taking medicine Health conditions
P12. Keeping health and proper activity level Control his ADHD without medicine
without medicine Avoiding medicine
Overheats easily
P13. Problems with eating habits and proper Concerns of eating habits/ nutrition
nutrition - Eating
Decreasing caloric intake
How he can get his favorite food: like
candies
Food habits
Preferred foods
Getting something to drink
Poor diet and eating habits
Lunch
Happy when eating
Happy when giving him some cakes
Happy when he's eating something he
likes
Usually very happy at meal time
_____________________________________ Happy when eating favorite foods_____
On the PedsQL emotional functioning subscale, more than half of items (3/5)
were not reported by parents in this study as important concerns. Eight items were
reported by the parents as important concerns though not included in PedsQL,
such as expecting the routine, getting frustrated, getting irritated, exhibiting self-
confidence, sensory issues, making decision, and problems with motivation, and
other (see Table 7).
6 2
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Table 7. Contrasts o f the reports on the simple survey and the PedsQL emotional
functioning subscale
Pediatrics Quality of Life Inventory (PedsQL) Survey
Which are the five most important
concerns perceived by your child in
his or her daily life?
When does your child feel happy?
Please list one or two examples.
Emotional Functioning (E)
El. Feeling afraid or scared N/A
E2. Feeling sad or blue N/A
E3. Feeling angry N/A
E4. Trouble sleeping - sleeping
E5. Worrying about what will happen to him or her - general anxiety over new situations
(Addition) Self-regulation
Knowing what will happen or what are
E6. Expecting the routine/ knowing what are we going to do
going to do What we are doing today?
What are we going to see today?
Knowing what we are going to do
Having things the way he expects
them to be
Who is he spending time with if not
with mom
Predictable routine
Understanding directions
Ability to transition
E7. Getting frustrated Getting frustrated
If he "can do it" (he gets frustrated
if he answered or did something
incorrectly)
E8. Problems with getting irritated or keeping calm Getting irritated/ keeping calm
Decreasing stimulation
Stop having fits because he can't
find things
Maintaining calm when there are
loud noises
Road trips (long drives)
63
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Table 7 (continued).
Self-confidence
He feels happy when he found he
could do himself
When he accomplished something
Getting appreciated
If you "appreciate" of his behavior
or feel being loved
Getting praised for achievement
When he has a lot of attention from
adult_________________________
E ll. Seeking or avoiding sensory stimulation Sensory issues
Keeping hands clean (sensory
issues- doesn’t like glue or paint
etc., on fingers)
Uncomfortable sensory situations
(tunnel, very loud noises)
Fans (watching fans/ watching a
turning ceiling fan/ or playing with
toy version of fans, like spinning the
propeller of a toy helicopter)
Sensory stimulation, jumping,
swimming, etc.
Bumping on sofa
Feeling happy when being tickled
E9. Exhibiting self-confidence
E10. Seeking attention and appreciation
E12. Problems with motivation or participation in Motivation
activities - No motivate to do himself (doesn't
want to learn or know, how to do
such as self-help skills)
Avoiding "work” (like school,
therapy, etc.)
He feels happy when mom helps
him most
E13. Making own decision or choice Making decision
Being able to call the shots (choose)
on which videos to watch, what
snacks to eat, which route to take
driving, etc.
Have enough common sense to
________________________________________________ make own decisions_____________
On the social functioning subscale of PedsQL, the parents didn’t mention
only one item, that is “getting teased by other children”, as important concerns in
64
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the open-ended questionnaire. Moreover, the six items that were reported by
parents as important concerns though not contained in PedsQL were added, such
as meeting new people, acting out behavior, spending time with parents, spending
time with siblings or other family members, making him or her understood, and
communication skills (refer to Table 8). The most important concerns as perceived
by the parents for their children were related to emotional and social functioning
issues.
Table 8. Contrasts o f reports on the simple survey and the PedsQL social
functioning subscale
Pediatric Quality of Life Inventory (PedsQL) Survey
Which are the five most important concerns
perceived by your child in his or her daily
life?
When does your child feel happy? Please
list one or two examples.
Social Functioning (S)
SI. Getting along with other children Being able to join in with a group of
children
Being with his best friend
Happy when playing with friends
Happy when play with his best friend
(alone)
S2. Other kids not wanting to be his or her friend - Friends
S3. Getting teased by other children N/A
S4. Not able to do things that other children his or - That he is not like other kids
her age can do That he doesn't understand things like other
kids
- That he isn't able to do things like other
kids
S5. Keeping up when playing with other children - Play with others
- Unable to play or work with peers (social
skills)
- Playing with peers
65
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Table 8 (continued).
(Addition)
56. Meeting new people
57. Acting out behavior which is not social -
acceptable
Social interaction skills
Meeting new people
Getting to see and visit someone
Poor social skills and social interaction
Acting out some behavior suddenly which
are not social acceptable, such as hug
strangers, talk to people he doesn't know,
tap strangers' body part, etc.
Social interact (verbal interact,
inappropriate behaviors, bump his body to
others and make nonsense sounds)______
58. Spending time with mom and dad
59. Spending time with siblings or other far
members
Enjoys time with family
Share with sister
lily - Spending time with mom
Hugs and kisses when dad gets home
Happy when playing with his dad
Happy when being with his family
Happy when playing with mom (and other
family members)
Happy when playing outside with siblings
and friends
Happy when spending time with mom and
dad
Happy when he spends time with lots of
family (extended family)
Happy when mommy plays with her on the
floor
Happy when drinking a bottle in mom's
arms, in a rocking chair, with a blanket
around us
Happy when spending time with mom and
dad, especially giving for a walk together
Happy when reading with family
510. Problems with speech language
development and communication skills,
such as describing an event
511. Making him or herself understood/
expressing needs and thoughts to others
Concerns of communication skills
Communication/ lack of verbal
communication
That she's making herself understood/ How
he can communicate or express himself/
Being able to express needs and thoughts
Unable to describe a full event
(speech/language skills)
That he doesn't communicate like his peers
Communication in any form / Poor
communication skills
66
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On the school functioning subscale of PedsQL, more than half of items
were not mentioned by the parents as important concerns in the open-ended
questionnaire. The parents reported only one item as their children’s important
concern (“likes to go to school/ enjoys school life”) (see Table 9). The item
“keeping up with school activities” can be modified to “keeping up with school
work (such as academic achievement, learning activity, play)”. This would make
the item clearer and be understood easier by parents.
Table 9. Contrasts o f reports on the simple survey and the PedsQL school
functioning subscale
Pediatrics Quality of Life Inventory (PedsQL) Survey
Which are the five most important
concerns perceived by your child in his or
her daily life?
When does your child feel happy? Please
list one or two examples.
School Functioning (Sch)
Schl. Paying attention in class - Does not focus most of the time
Sch2. Forgetting things N/A
Sch3. Keeping up with school activities Academic achievements
Inability to learning something new
I
Educational capabilities
▼
School work
Sch3. Keeping up with school work (such as Cutting with scissors
academic achievement, learning activity, play) Color and writing
Doing well in school
Playing with kids at school
Sch4. Missing school because of not feeling well N/A
Sch5. Missing school to go to the doctor or hospital N/A
67
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Table 9 (continued).
(Addition)
Sch6. Likes to go to school/ Enjoys school life - School life
Going to school
No school
Feeling happy when the bus comes to take
her to school
In the point of the open-ended questionnaire, most parents reported ‘playing’
as an important concern of their children. Based on the report, most children felt
happy when they were engaging in different types of ‘play’ activities or games.
Therefore, ‘playing’ was coined as an additional category consisting of seven
items, including problems with play skills, outdoor and indoor playing activities,
and many others (see Table 10).
Table 10. Contrasts of reports on the simple survey related to play activities
Survey
Category Which are the five most important concerns
perceived by your child in his or her daily life?
When does your child feel happy? Please list one
or two examples.
Play (PL)
PL1. Problems with play skills Playing concerns
( playing toys, drawing If he can play and what to play/ When he can play
pictures, talking on pretend Playing time
phone, etc) Poor play skills
Drawing pictures
When he plays with his favorite toys
Talking on pretend phone
PL2. Playing indoors (reading books, Feeling happy when playing indoor
listening music, etc.) If he can watch TV/ Watching TV
PL3. Watching TV/ cartoon/ video When his favorite cartoon is playing
PL4. Playing with the computer/ Preferred toys and videos/ Watching a favorite
video games video
Playing or watching video games
Listening music
Reading books/ Flipping through books alone
Playing computer/ Playing games on computer
Playing games
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Table 10 (continued).
PL5. Playing outdoors (park, Feeling happy when playing outdoors
playground, playing the swing) - Playing the swing
PL6. Playing in water/ swimming in - To play water (beach, pool, water activity)
pool or ocean - Playing, talking, or looking at cars
PL7. Riding bike or scooter - He likes to go to park, play on playground
Playing outside on his bike or razor scooter
At a parade with a lot of noise, music, movement,
lights, etc.
Parents ’ reports o f their children’ s health and life satisfaction. When
describing their children’s health, the parents reported more positive answers than
negative answers. More than half (17/29) of the parents reported simple yet
positive answers, such as “good”, “great”, or “excellent”. Eleven of the twenty-
nine parents thought their children were in good health, however they also
provided remarks about their children’s illness or disability, such as poor nutrition,
asthma, gastrointestinal issues, seizure disorder, croup, or “getting sick often”.
Few parents, around two out of 26, reported answers, such as “so so” and “below
average”.
According to the parent’s reports of children’s satisfaction of daily life (see
Table 11), more than half (15/29) of the parents reported positive short answers
followed by short comments. Seven parents reported positive short answers in one
sentence, such as “good”, “very good”, “usually happy”, and “extremely happy
and well adjusted”, and many others. Three parents responded negative shorts
answers in one sentence, such as “mildly dissatisfied”, “poor and he doesn't care”,
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and “I don’t think his is satisfied”. One parent reported “average”. Finally, one
parent stated “I'm not sure. I knew that he is happy but he does not express
satisfaction”. Most parents got and reported positive responses from their children,
and reported their children’s life satisfaction based on children’s happiness and
emotional feeling.
Table 11. Parents ’ reports o f their child’ s satisfaction in daily life
Type of reports No. of
parents
Parents’ reports
Positive short answer
in one sentence
3
2
1
1
“Good”, “very good”, “very good, because we love him”
“Extremely happy and well adjusted”; “He loves life and is a very
enthusiastic child”.
“We think he's happy”; “My child seems to be very satisfied”
“Usually happy”
Positive answer with
positive comments
3 “She seems pretty happy, when there is something she wants she
lets us know, and we try to give her what she wants if its within
reason (snacks, TV-viewing, hugs).”
“He seems like a happy person. He smiles and laughs a lot, likes
people, responds to familiar comforts.”
“He has simple needs and wants. He's happy with predictable
routine and preferred reinforces.”
Pretty content, with
comments
2 “He seems to be pretty content with his life. He seems a little
confused as why he is unable to play with some children”;
“1 think that overall his satisfaction is fairly high. He does get
frustrated by certain things (when he doesn't get his own way about
something or if he has to do something he doesn't want to do, like
go to school.) But he knows he is loved, and I believe that overall
he's pretty content.”
Good, with
comments
2 “Good, would like more close friends to play with”;
“Good- he is a happy person who doesn't even seem to take the
regular teasing he gets (new schools, etc.) Seriously- he understands
it well - but is very confident and happy!”
Satisfied, with
comments
2 “Satisfied as long as routine is maintained on a daily basis, does not
handle transition very well”
“He seems satisfied with his daily life. With the exception of
cutting and writing, he seems obvious to things he can't do that
others his age can”
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Table 1 1 (continued).
Happy most of the
time, with comments
2 “He does not know any other way or could not complain yet. In that
light, I can say he is happy most of the time. However, this joy fade
when he gets frustrated when does not have the language to express
himself’
“He is happy most of the time. But is frustrated of not been able to
communicate with more complicated language. His school works
are pretty difficult for him”
Basically happy, with 2 “He is frustrated by not being able to do some things but he is
comments basically happy”;
“Basically happy, but bored easily when at home and not in school
day routine”
Severally happy, with
comments
1 “Severally happy. I'm really not aware of his overall contentment”
Ok, with comments 1 “Ok, but frustrated because lean of language to express needs”
Short answer 1 “Average”
Not sure 1 “I'm not sure. I knew that he is happy but he does not express
satisfaction”
Negative short
answer
1 “Mildly dissatisfied”
2 “Poor and he doesn't care”; “I don’t think his is satisfied”
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Chapter 5
Discussion
The Purpose o f This Study
Improvement in health-related quality of life (HRQOL) has created a critical
thrust such that, researchers and practitioners have become more aware of the
importance of their clients’ life satisfaction and subjective feeling regarding their
health care. The occupation-centered pediatric therapist is also concerned with
how children perform meaningful occupations to acquire a better quality of life.
This study contributed to our understanding of the relationship between the ability
to perform daily functional occupations and the health related quality of life of
young children with developmental delays as reported by their parents. The
functional skill scale of the Pediatrics Evaluation of Disability Inventory (PEDI)
was used to evaluate the children’s functional skill, whereas the Generic Core
Scale of Pediatrics Quality of Life Inventory (PedsQL) measured the children’s
HRQOL.
According to the study results, the PEDI and PedsQL were moderately to
highly correlated on all aspects examined. An open-ended questionnaire was used
to sample the parents’ perception of their children’s health, life satisfaction, and
important life concerns. The questionnaire data was similar with some items of
PedsQL. However, the parents reported many important concerns which were
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specific for their child’s condition and were not captured by the PedsQL. These
included such as nutrition, safety, sensory integration dysfunction, self-regulation,
and communication skills. This information can be very useful in developing
HRQOL measurements for children with autism spectrum disorder and other
similar developmental delays.
Correlation Between PedsQL and PEDI in This Study
This study supports the hypothesis that children’s functional skill and
HRQOL are correlated. Two evaluation tools were used in this study. The Generic
Core Scale of PedsQL was utilized when evaluating children’s HRQOL. This scale
inquired regarding the frequency certain activities or occupations were perceived
as a problem or trouble in daily life. The functional skill scale of PEDI was
employed to assess how children carry out their functional performances and
everyday occupations. Based on the results, moderate to high Pearson Correlation
Coefficients (r = .53 - .75, a = .01) were found between scales for similar domains
in PedsQL and PEDI. This suggested that a relationship existed between children’s
functional skill and HRQOL. This implies that the pediatric practitioner can expect
the child’s health related quality of life to be similar in pattern as the child’s
functional skills, when using these two tests. This result reminds therapists that
children’s functional skill and quality of life are associated with each other. From a
practice perspective, quality of life measures, such as the PedsQL, can be useful
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for therapists as they seek to understand children’s perceptions about their
performance when engaged in daily occupations. This might help practitioners to
better capture the socio-emotional challenges children encounter in real living
situations.
However, this result requires more careful analysis. The high correlation
between the two measurements might be suspect. For instance, the two tools
contained similar domains and items; the question styles in the two inventories
were somewhat similar to each other. More to the point, the content of PedsQL
was functionally oriented even when it sought to determine the individual’s
perspective about the problem of the degree of to which a situation was problem.
While it is most likely that there is a correlation between these two tests, the
strength of the correlations reported could be due to similarity in the content of the
test items, rather than a high degree of agreement between the two different
concepts, quality of life and functional skills.
Major Diagnostic Population in This Study: Children with Autism Spectrum
Disorder
More than 60 percent of the children examined in this study had a diagnosis
of autism spectrum disorder. This was not intended as the inclusion criteria only
specified children with developmental delays. The high percentage of children
with autism spectrum disorder is consistent with current studies and records
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reporting the prevalence of autism in the United States. It is estimated that the
rates of autism spectrum disorder are about ten times higher than those reported
during 1980s or early 1990s (Yeargin-Allsopp et al., 2003). In a recent study about
autism prevalence in 1998, 6.7 per 1000 children were within entire autism
spectrum disorder (Bertrand et al, 2001). Based on these findings, children with
autism spectrum disorder are predicted to become an increasing population in the
future social context. This means information about the special needs of children
with autism spectrum disorder can be valuable to the practitioners.
The Generic Core Scale of the PedsQL was designed for healthy children
and children with chronic health conditions. This tool contains items related to the
general and universal daily occupations of most children (Vami et al, 2001). Based
on the results of this study, children with autism spectrum disorder demonstrated
poorer scores on the psychosocial HRQOL than physical HRQOL. However, when
comparing the generic core scale of PedsQL with the open-ended questionnaire in
this study, it was observed that the PedsQL did not really capture the important
occupations and life concerns of many children in this study. For instance, the
parents mentioned less than half of the items in the PedsQL as important life
concerns in the open-ended questionnaire. The social and emotional subscale of
the PedsQL did include a number of items as parents cited in the questionnaire as
important concerns for their child. However, many items pertaining to emotional
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and social aspects reported by parents were not listed in the PedsQL. These
concerns include items such as self-regulation, self-confidence, unacceptable
behavior, communication skills and social interaction skills. These disease-specific
concerns were consistent with the symptoms and characteristics of children with
autism spectrum disorder.
Therefore, based on this result, it could be deduced that some important
indicators of children’s quality of life might vary for children with different
disorder and diagnosis. The autistic children may have some general life concerns
similar with most children. In addition, they might have special needs and
challenges in daily life, especially on social and emotional domains of daily
occupations. The parents’ reports in the open-ended questionnaire in this study
could be the useful in developing an advanced disease-specific QOL measure for
children with autism spectrum disorder. By using the generic core scale of PedsQL
and the autistic-specific quality of life measure on autistic children, the
practitioners could acquire an in-depth and profound understanding of the impact
of QOL on both general daily occupations and matters pertaining to children with
autism spectrum disorder. This information might be also helpful to identify
children’s needs and concerns in family, school and community.
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Demographic Variables: Ethnicity
The participants of this study belonged to various ethnic backgrounds.
Approximately 50 per cent of the parents and children were Caucasian. The Asian/
Pacific Islander comprised the second majority block among the participants,
while the remaining seven children were of mixed ethnicity. However, based on
the reports provided by the parents, ethnicity made no significant difference in
parents rating of their child’s HRQOL or functional skills. Perhaps, this was due to
the similar conditions of the children under study. Most children were
experiencing developmental delays and diagnosed with autism spectrum disorder.
Thus, in this study, the diagnosis could have been the vital factor, providing critical
implications for the children’s behavior and lifestyle. Children with the same
diagnosis may experience similar challenges and may have similar needs and
concerns. As a consequence, the parents may also have similar concerns and
expectations from their children. In addition, the lifestyle and life concerns of
these participants may be shaped and influenced primarily by the American culture.
Most of these children were served in an education system and healthcare system
of the state of California. Indeed, the parents and children with developmental
delays could access many healthcare resources and supports in community. The
availability of resource could have contributed to the lack of negative report of
child’s HRQOL that appeared in the PedsQL and in the open-ended questionnaire.
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Parent Proxy Rating
In this study, the parents of the children under studied were the critical
informants for the information needed about their children’s functional skills and
HRQOL. It has been discussed in some literature that “parent can rate their child’s
HRQOL”. Generally, the reports of parent and child agreement is greater for
observable functioning, such as physical HRQOL; and less for non-observable
functioning, such as emotional and social HRQOL (Eiser and Morse, 2001).
However, in this study, the parents provided essential information not only about
their children’s physical domains, but also emotional and social domains. Based
on the parents’ reports, these children enjoyed spending time with family. Most
parents talked about their child’s happiness and frustration as manifested in their
child’s daily occupations. It is clear that, parents’ reports of their children’s
perception was valuable in understanding the functional skill and HRQOL of these
young children, especially as many of the children exhibited speech and language
delays. However, it could be interesting to explore the agreement between parents’
report and result of observation on the children’s daily occupation in future study.
For example, parents may think that children enjoy spending time with their
family but perhaps the child would report or act otherwise.
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Relationship between the Study Implication, Occupational science, and
Occupational Therapy Practice
Based on occupational science, occupational therapists are concerned with
children’s performance and occupation in their family, school, and community.
The study results can promote the occupation-centered practice in pediatric fields.
It may help therapists to have better understanding of children’s functional skill
while appreciating its links to quality of life. Therapists can capture children’s
special needs and challenges through evaluating their functional skill and QOL.
Having a holistic view of the child’s daily occupation and life satisfaction, the
therapist can work and collaborate with child, parent, and teacher to improve the
child’s daily occupation, lifestyle, and QOL in a clearly and effective direction.
In clinical practice, therapists can take the HRQOL into account while doing
the evaluation process and setting the treatment plan and goal. For example, the
PEDI used in this study can assist therapists to understand child’s strengths and
weakness on functional capability. The PedsQL can help to determine child’s
major problem and challenge in daily life. As the open-ended questionnaire was
employed in this study, parents can provide therapist the information of child’s
participation and engagement in his or her daily occupation in detail, such as the
different patterns of play activities, and the interaction style of children with peers
or family members in real living context. Therapists may understand the child’s
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meaningful activities and how the child is shaped by his or her daily occupation.
The screening, evaluation process in this way will be occupation-centered and
embedded with the purpose of improving the life satisfaction and life quality.
Furthermore, based on the occupational science perspective, we understand
human occupation is not equal to the functional skill. In this study, some important
concerns and meaningful occupations of children with autism spectrum disorder
reported in open-ended questionnaire were not listed on the PedsQL and PEDI.
For example, many important social occupations and emotional concerns were not
contained in the generic core scale of PedsQL. Although children’s performance
capability and functional skill are related to their life quality, functional
performances are just parts of occupation but not everything of occupation.
However, functional skill and occupation did contribute to children quality of life.
This study suggested information to therapists about what kinds of occupations
make different to children. The results can assist therapists to capture a multiple
picture of children’s meaningful occupations in clinical practice. Having a holistic
view of child’s daily occupation and life quality, the therapist can help the child to
explore the meaningful and happy way for engaging in daily life and playing
various roles in school, family, and community. Thus, the child can better engage
in his or her living environment to have a more enriched lifestyle and development.
The holistic view of human occupation and quality of life points that meaningful
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occupations are important to and embedded in human life. We can better figure
the whole picture of human quality of life through understanding the meaning and
style of human occupation. This study may provide an inspiration to occupational
scientists and researchers for developing an occupation-centered quality of life
measurement in the future.
Limitation o f This Study
A limitation of the study is the collection of a small sample of developmental
delayed children aged five to seven and their parents. These parents and children
all lived in the Los Angeles County area and received healthcare services of the
state of California. Children who lived in other states or children in other age
range were not included. This may cause somewhat overestimation or
underestimation of the perspectives of children’s HRQOL through parents’
reports.
This study found that there is a need for a better and more comprehensive
way to assess children’s quality of life. In this study, we surveyed parents’ reports
of their children’s quality of life by using PedsQL generic core scale and an open-
ended simple questionnaire. It was limited to capture the more accurate and detail
children’s quality of life. However, this can be a pilot study for exploring the way
to measure children’s quality of life and provide some valuable data to improving
the understanding in this field.
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Future Areas o f Study
In future study, researcher may extend the age range of the target population
to see the relationship between functional skill and HRQOL of children with
developmental delays in various age ranges. Researcher can also recruit
participants in more geographic regions to determine the role of culture variation
on the perception of quality of life of the child with developmental delays. This
inquiry might be expanded by also examining children in other countries. The
information reported in the open-ended questionnaire can provide valuable pilot
data to develop a disease-specific scale for children with developmental delays in
the ages of five to seven years. Base on the occupational-oriented perspective,
researchers can also develop an occupation-centered quality of life measurement
for specific populations. Future studies in these directions can assist researchers to
establish the more comprehensive understanding and knowledge base of children’s
HRQOL.
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Survey (SF-36). I. Conceptual framework and item selection. Medical Care,
30, 473-483.
Williams, L. S., Weinberger, M., Harris, L. E., Clark, D. O., & Biller, J. (1999).
Development of a stroke-specific quality of life scale. Stroke, 30, 1362-
1369.
Yeargin-Allsopp, M., Rice, C., Karapurkar, T., Doemberg, N., Boyle, C., Murphy,
C. (2003). Prevalence of autism in a US metropolitan area. Journal of
American Medical Association, 289, 49-55.
Yerxa, E., Clark, F., Frank, G., Jackson, J., Parham, D., Pierce, D., Stein, C., &
Zemke, R. (1990). An introduction to occupational science. A Foundation
for occupational therapy in the 21s t century. Occupational Therapy in Health
Care, 6, 1-17.
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Appendix A
Demographic Data Form Date:
Code:
Gender 1 .1 |Male 2.| iFemale
Aae:
About the Child
Gender: 1 .1 [Male 2 .1 [Fem ale
Birth Date;
Relationship to Child: Diagnosis (if any):
Level of E ducation:
I.Qjunior high 2 .1 [Senior high
3 .1 [College 4 .1 [University
5 .1 1 Master/ PhD 6. Other
Ethnic Group or Race:
A re you employed? 1 .Q fes 2-ONo
If Yes. type of employment:
Grade:
Ethnic Group or Race:
Rehabilitation Received Currently:
1 .1 [Occupational Therapy
2.| [Physical Therapy
3.| ISpeech and Language Therapy
4.0ther:
About the Home
Who lives at home (relationship w ith the child, for example, grandmother, mother, elder brother,
younaer sister or others.. .etc.):
Anybody in the home w ith the chronic health condition or disabilities:
90
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Appendix B
PedsQL TM (Pediatric Quality of Life Inventory TM)
A txuiC
C htfo-SsJ^ppfr-
A ttr 3-!2 '*,
* : * * - m t S - W * * J k *
?arwti-Pn^83j^tLb<^*:
'
Acvn*ni5fr«i7Hjft,
o . ^ V .
* *
S c u ^ . n g
* " « j M ^ C K r r s
■ ■ * ' • ■ . - . W
TtrunbUSaontf-
C o n t a c t U s
The PedsQlT* 4.0 Scoring Algorithm
Scoring the Pediatric Quality of Life Inventory™
Scoting instructions
" t ne PeasQL™ 4.0 Generic Core Scales are easy to score. The
items of the four Scales (Physical Functioning, Emotional
Functioning, Social Functioning, and School Functioning) are
grouped together on the actual questionnaire, so it is easy to
create Scale Scores.
1. On the PedsQL1 * 14.0 Generic Core Scales, for ease of
interpretability, items are reversed scored and linearly
transformed to a 0-100 scale, so that higher scores indicate
better HRQOL (Health-Related Quality of Life).
2. To reverse score, transform the 0-4 scale items to 0-100 as
follows: 0=100, 1=75, 2=50, 3=25, 4=0.
3. To create Scale Scores, the mean is computed as the sum
of the items over the number of items answered (this
accounts for missing data). If more than 50% of the items in
the scale are missing, the Scale Score should not be
computed. Imputing the mean of the completed items in a
scale when 50% or more are completed is generally the most
unbiased and precise method. To do this, count the number
of missing values in the scale (call it nmiss). Next, sum the
item scores and divide by the number of items in the scale
minus nmiss. Alternatively, use the Compute command in
SPSS to compute the MEAN.
4. To create the Psychosocial Health Summary Score, the
mean is computed as the sum of the items over the number
of items answered in the Emotional, Social, and School
Functioning Scales. The Physical Health Summary Score
is the same as the Physical Functioning Scale Score.
5. To create the Total Scale Score, the mean is computed as
the sum of all the items over the number of items answered
on all the Scales.
CMfeiN!«ir*Seaffti9
Response Choices Never Almost
Never
Some
times
Often j Almost
Always
Raw Scores
o 1
2
3 !
4
0-100 Scale Scores
100 75 50 25
o
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PedsQL
P edlatrie Quality o f life
Version 4.0
PARENT REPORT for YOUNG CHILDREN (ages 5-7)
■ /DIRECTIONS'' . .
(Qn the following page is a list of things that might be;a: problem fofyour child.
(Please tell us how much of a problem each one has been for your child
during the past ONE month by circling:
Ojfif is never a problem
1 if if is almost never a problem;
2 if if is som etim es a problem
3 if it is often a problem
4 if it is almost always a problem
There are no right or wrong answers.
If you do not understand a question, please ask for help.
P ed sQ L 4 .0 - P aren t (5-7) Not to .b e reprod u ced w ithout p e r m issio n C o p y rig h t© 1 9 9 8 JW Varnt, Ph.Q . Ail rights r esa w ed
01/00
92
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PedsQL 2
In the past ONE month, how much of a problem has your child had with ...
P h y s i c a l F u n ction in g (problems with...)
Never Almost
Never
Some
times
Often Almost
Always
1. Walking more than one block 0 1 2 3 4
2. Running 0 1 2 3 4
3. Participating in sports activity or exercise 0 1 2 3 4
4. Lifting something heavy Q 1 2 3 4
5. Taking a bath or shower by him or herself 0 1 2 3 4
6. Doing chores, like picking up his or her toys 0 1 2 3 4
7: Having hurts or aches 0 1 2 3 4
3. Low energy level 0 . 1 2 3 4
E m otion al F u nctioning (problems with...)
Never Almost
Never
Some
times
Often Almost
Always
1. Feeling afraid or scared 0 1 2 3 4
2. Feeling sad or blue 0 1 2 3 4
3. Feeling angry 0 1 2 3 4
4. Trouble sleeping 0 1 2 3 4
5. Worrying about what will happen to him or her 0 1 2 3 4
S ocial Functioning (pmbiems with...)
Never Almost
Never
Some
times
Often Almost
Always
1. Getting along with other children 0 1 2 3 4
2. Other kids not wanting to be his or her friend 0 1 2 3 4
3. Getting teased by other children 0 1 2 3 4
4. Not able to do things that other children his or
her age can do
0 1 2 3 4
5. Keeping up when playing with other children 0 1 2 3 ■ 4
S c h o o l F u n ction in g (problems with...)
Never Almost
Never
Some
times
Often Almost
Always
1. Paying attention in class 0 1 2 3 4
2. Forgetting things 0 1 2 3 4
3. Keeping up with school activities 0 1 2 3 4
4. Missing school because of not feeling well 0 1 2 3 4
5. Missing school to go to the doctor or hospital 0 1 2 3 4
P e d sQ L 4 .0 - P a ren t (5 -7 ) Nat to b e rep ro d u ced w ithout p erm issio n C opyright ® 1 9 9 8 JW V am i, P h.D . All rights r e serv ed
0 1 /0 0
93
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Appendix C Pediatric Evaluation of Disability Inventory- Functional
Skills Scale
P art 1 : Functional Skills
S elf-C a r e d o m a i n
P l a c e a d i e e k r w t t s p u n d i n g t o u a c h i t -
l U i i n s c o r e s : 0 = u n a b l e ; ] » c a p a b l e
A. Food Textures
5 > * &
^ Jr
s ' ( T
J. Fasteners
1. Eats p u reed /b len d ed /stra in ed foods
2. Eats g ro u n d /lu m p y foods
3. Eats cut u p /c h u n k y /d ic ed foods
4. Eats ail textures o f table food
B. Use of Utensils
5. Finger feeds
6. Scoops w ith a sp oon and brings to m outh
7. U ses a sp oon well
8 . U s e s a f o r k w e ll
9. U ses a knife to butter bread, cut soft foods
C. Use of Drinking Containers
10. H old s bottle or spout cup
11. Lifts cup to drink, but cup may tip
12. Lifts open cup securely with tw o hands
13. Lifts o p en cup secu rely with one hand
14. Pours liquid from carton or pitcher
D. Toothbrushing I
15. O pens m outh for teeth to be brushed
16. H old s toothbrush
17. Brushes teeth; but n ot a thorough job
18. T horoughly brushes teeth
19. Prepares toothbrush w ith toothpaste
i E. Hairbrushing
20. H old s head in position w h ile hair is com bed
21. Brings brush or com b to hair
22. Brushes or com bs hair
23. M anages tangles and parts hair
F. Nose Care
. 24. A llo w s nose to b e w iped
25- Blows nose into held tissue
26. W ipes nose usin g tissue on request
27. W ipes nose usin g tissue w ithout request
28. B low s and w ipes nose w ith out request
I G- Handwashing
29. H olds hands ou t to be w ashed
30. Rubs hands together to clean
31. Turns w ater on and off, obtains soap
32. W ashes hand s thoroughly
33. Dries hands thoroughly
H. W ashing Body & Face
34. Tries to w ash parts o f body
35. W ashes b ody thoroughly, not including face
36. O btains soap (and soaps w ashcloth, if used)
37. Dries b ody thoroughly
38. W ashes and dries face thoroughly
1 . Puilover/Front-Qpening Garments
39. A ssists, such as pushing arms through shirt
40. Rem oves T-shirt, dress or sweater
(pullover garm ent w ithout fasteners)
41. Puts on T-shirt, dress or sw eater
42. Puts on and rem oves front-opening shirt,
not including fasteners
43. Puts on and rem oves front-opening shirt,
including fasteners
Tries to assist with fasteners
Zips and unzips, doesn’t separate or hook zipper
Snaps and unsnaps
Buttons and unbuttons
Zips and unzips, separates and hooks, zipper
K. Pants
49. Assists, such as pushing legs through pants
50. Rem oves pants with elastic waist
51. Puts on pants with elastic w aist
52. Rem oves pants, including unfastening
53. Puts on pants, including fastening
L . Shoes/Socks
54. Rem oves socks and unfastened shoes
55. Puts on unfastened shoes
56. Puts on socks
57. Puts shoes on correct feet; m anages velcro fasteners
58. Ties shoelaces
M. Toileting Tasks (clothes, toilet
u I
59. A ssists with clothing m anagem ent
60. Tries to w ipe self after toileting
61. M anages toilet seat, gets toilet paper a nd flushes toilet
62. M anages clothes before and after toileting
63. W ipes self thoroughly after bow el m ovem ents
N. M anagem ent of Bladder ( S c o r e »
i f ch ild h a s p r e v io u sly m a ste r e d skill)
64. Indicates w h en w et in diapers o r training pants
65. O ccasionally indicates need to urinate (daytim e)
66. C onsistently indicates need to urinate w ith tim e to
g et to toilet (daytim e)
67. Takes self into bathroom to urinate (daytim e)
C onsistently stays dry d ay and night 68 .
O. M anagem ent o f Bowel (S c o re =
if c h ild h a t p r e v io u sly m o sta r ed skill)
69. Indicates need to be changed
70. O ccasionally indicates n eed to u se toilet (daytim e)
71. C onsistently indicates need to u se toilet with tim e to
get to toilet (daytim e)
72. D istinguishes betw een need for urination and bowel
m ovem ents
. 73. Takes self into bathroom for b ow el m ovem ents, has
no bow el accidents
S elf-c a r e Do m a i n S u m
PLEASE BE SURE YOU HAVE A NSW ERED ALL ITEMS.
Comments
PEDI — 2
94
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M O B I L I T Y D O M A I N P l a s e o t l ^ k c o n e s p O f t d u v ^ t o e d e h itc m t
h e m s c o r e s : 0 = u n a b l e ; I = c a p a b l e ^
O utdoor Locomotion: M ethods j o
A. Toilet Transfers
1. S.its it supported by eq u ip m en t or caregiver
2. Sits unsupported on toilet or potty chair
3. Gets on and off low toilet or pottv
4. Gets on and off adult-sized toilet
5. Gets on and off toilet, n ot needing o w n arms
B . C hair/W heelchair Transfers
6. Sits if supported by equ ipm en t or caregiver
7. Sits unsupported on chair or bench
8. Gets on and off low chair or furniture
9. G ets in and out of ad u lt-sized ch air/w h eelchair
10. Gets in and out of chair, not n eed in g o w n arms
C. C ar Transfers
11. M oves m car; scoots on scat or gets in and ou t of
car seat
12. G ets in and ou t of car w ith little assistance or
instruction
13. G ets in and out of car w ith no assistance or
instruction
14. M anages seat belt or chair restraint
15. G ets in and ou t of car and o p en s and closes car door
D. Bed Mobility/Transfers
E. Tub Transfers
20. Sits if supported by equ ip m en t or caregiver in a
tub or sink
21. Sits unsup ported and m oves in tub
22. Climbs or scoots in and out o f tub
23. Sits d o w n and stands up from inside tub
24. Steps/transfers into and out o f an ad u lt-sized tub
F. Indoor locomotion Methods
(5core a I ilmasteredl
25. Rolls, scoots, crawls, or creeps on floor
26. W alks, but holds onto furniture, w alls, caregivers or
uses d evices for support
27. Walks w ithout support
G. Indoor locomotion: Distance/
Speed (S core = 1 if m astered}
28. M oves w ith in a room but w ith difficulty
(falls; slo w for age)
29. M oves w ithin a room w ith no difficulty
M oves b etw een room s but with difficulty
(falls; slo w for age)
M oves betw een room s with no difficulty
M oves indoors 50 feet; op ens and closes inside and
outside doors
30.
H. Indoor Locomotion: Pulls/
Carries Objects ________
33. C h arges physical location purposefully
34.' M oves objects along floor
35. Carries objects sm all enou gh to be held in one hand
36. Carries objects large en ou gh to require tw o hands
37. Carries fragile or spiilable objects
16. Raises to sitting position in bed or crib
17. C om es to sit at ed ge o f bed; lies d ow n from sitting at
edge o f bed
IS. G ets in and out of o w n bed
19. Gets in and out o f o w n bed, n ot needing o w n arms
W alks, b u t h o ld s on to objects, caregiver, o r devices
tor su p p o rt
W alks w ith o u t su p p o rt
J. O utdoor locomotion: Distance/
Speed ( S c o r e = 1 i l m a s t e r e d }
40.
41.
42.
43.
M oves 10-50 feet (1-5 car lengths)
M oves 50-100 feet (5-10 car lengths)
M oves 100-150 feet (35-50 yards)
M oves 150 feet and longer, but w ith difficulty
(stum bles; sio w for age)
M oves 150 feet and longer w ith no difficulty
K. Outdoor Locomotion: Surfaces
45. Level surfaces (sm ooth sid ew alks, drivew ays)
46. Slightly uneven surfaces (cracked pavem ent)
47. R ough, uneven surfaces (law ns, gravel drivew ay)
48. Up and d o w n incline or ramps
49. Up and d o w n curbs
L. Upsfoirs (Score = 1 if child has
previously m astered skill)
50. Scoots or craw ls up partial flight (1-11 steps)
51. Scoots or craw ls up full flight (12-15 steps)
52. W alks up partial flight
53. W alks up full flight, but w ith difficulty
(slo w for age)
W alks up entire flight with no difficulty 54.
M. Downstairs (S care ~ 1 if child has
previously m astered skill)_____________
55. Scoots or craw ls d o w n partial flight (1-11 steps)
56. Scoots or crawls d ow n full flight (12-15 steps)
57. W alks d o w n partial flight
58. W alks d o w n full flight, but w ith difficulty
(slow for age)
59. W alks d ow n full flight w ith no difficulty
M o b il it y d o m a i n s u m
P l e a s e b e s u r e y o u h a v e a n s w e r e d a l l i t e m s .
So c ia l f u n c t io n d o m a i n
Place a check corresponding to each
item: Item scores: 0 = unable;
1 = capable
A . Comprehension W ord Meanings
1. O rients to sound
2. R esponds to "no"; recognizes o w n nam e or that
of familiar p eop le
3. Understands 10 w ords
4. U n derstands w h en you talk about relationships am ong
p eop le a n d /o r things that are visible
5. Understands w h en you talk about tim e and sequence
o f events
0 1
I k Comprehens»on of Sentence
Complexity
P E D I — 3
6. U nderstands short sentences about familiar objects
and people
7. U nderstands 1-step com m ands w ith w ords that
describe p eop le or things
8. Understands directions that describe w here
som ething is
9. U nderstands 2-step com m ands, usin g if/th en ,
b efore/after, first/secon d , etc.
10. Understands tw o sentences that are about the sam e
subject but have a different form
95
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| C. Functional U se o f Communication 0 1
11. N am es things
12. U ses sp ecific w ords or gestures to direct or request
action by another person
13. Seeks inform ation by asking q uestions
14. Describes an object or action
15. Tells about o w n feelings or thoughts
D. Complexify of Expressive
Communication q i
16. U ses gestu res w ith clear m eaning ____
17. Uses sin gle w ord w ith m ean ing ____
18. U ses two w o rd s together w ith m ean ing ____ _
19. U ses 4-5 w o rd sen ten ces ____
20. Connects tw o or m ore thoughts to tell a sim p le story I
| E. Probienvresoiufion | 0 1
21. Tries to sh o w y o u the problem or com m unicate what
is needed to help the problem
22. If upset because o f a problem , child m ust b e helped
im m ediately o r behavior deteriorates
23. If u pset b ecau se o f a problem , ch ild can seek help and
w ait if it is d ela y ed a short tim e
24. In ordinary situation s, child can describe the problem
and h is /h e r feelin gs w ith so m e detail (usually does .A
not act out) '
25. Faced w ith an ordinary problem , ch ild can join adult
in w orking ou t a solution
1 F. Social Interactive Play (Adults)
0 1
26. S how s aw aren ess and interest in others
27. Initiates a fam iliar play routine
28. Takes turn in sim p le p lay w h en cu ed for turn
29. Attem pts to im itate adult's previou s action during
a p lay activity
m
30. D uring p la y child m ay suggest, n e w o r different steps.
or resp ond to adult su ggestion w ith another idea
G. Peer Interactions; (Child of
similar age)
0 1
31. N otices p resen ce o f other children, m ay vocalize and
gesture tow ard peers Iff*
32. Interacts w ith other children in sim p le and
b rief ep isod es »• •
33. Tries to w ork ou t sim p le plans for a play activity
w ith another child *
34. Plans and carries ou t cooperative activity w ith other
children; p lay is su stained and com plex
35. Plays activities o r gam es that h ave rules
| H P lay w ith O b je c ts | q i
36. M anipulates toys, objects or b od y w ith intent ____
37. U ses real or substituted objects in sim p le pretend ____
sequences___________________________________________________
38. Puts together m aterials to make som eth in g __
39. M akes up exten d ed pretend p lay routines i n v o l v i n g ____
things the child k now s about :
40. M akes up elaborate pretend sequences from
im agination
• [ 1 . S e lf-In fo rm a tic n | q i
41.. Can state first nam e ____
42. Can state first and last nam e ____
43. Provides nam es and descriptive inform ation a b o u t ____
fam ily m em bers_______________________________________ ____
44. Can state full hom e address; if in hospital, nam e of _
hospital and room num ber __
45. Can direct an adult to help child return hom e or f
back to the hospital room
| J. T im e O rie n ta tio n j o )
46. H as a general aw areness o f tim e of m ealtim es a n d ____
routines during the day ’ ____
47. H as so m e aw areness o f sequence o f familiar e v e n t s _____
in a w eek ______________________________________________ _____
48. H as very sim ple tim e concepts_________________________ _____
49. A ssociates a specific tim e w ith action s/even ts _____
50. Regularly checks clock or asks for die tim e in order to 1
keep track o f schedule
I K, H o u se h o ld C h o re s j o I
51. B eginning to help care for o w n b elongings if g i v e n _____
constant direction and guidance __
52. B eginning to h elp w ith sim ple h ousehold chores i f ;
g iv en constant direction and guidance ___ ^
53. O ccasionally initiates sim p le routines to care for ow n __
belongings; m ay require physical heip or reminders to ^
com p lete v. " T
54. O ccasionally initiates sim p le h ousehold chores; _____
m ay require p hysical heip or reminders to complete / -
55. C onsistently initiates a nd carries ou t at least one j
h o u seh o ld task in v o lv in g several step s and decisions;
m a y require p h ysical help
| L Self-Protection | o i
56. S how s appropriate caution around stairs _____
57. Sh ow s appropriate caution around hot or „
sharp objects ^
58. W hen crossing the street w ith an adult present, child _ __
d oes n o t need p rom pting about safety rules
59. K now s n o t to accept rides, food or m on ey from ___ _
strangers ^
60. C rosses busy street safely w ithout an adult I
I M . C o m m u n iiy Fu n ctio n [ 0 l
61. C h ild m ay play safely at hom e w ithout bein g w a t c h e d ^
constantly ___
62. G oes about familiar environm ent ou tsid e o f hom e __
w ith only periodic m onitoring for safety ^
63. Follow s gu id elin es/exp ectation s o f sch ool and ___ _
com m unity setting ___ _
64. Explores and functions in familiar com m unity s e t t in g s _____
w ithout supervision
65. M akes transaction in neighborhood store w i t h o u t _____
assistance
S o c ia l f u n c t i o n d o m a i n s u m
Please be sure y o u h a v e a n s w e r e d all items.
C om m ents
PEDI — 4
96
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Appendix D
Simple Survey
Thank you very much for completing the PedsQL and the PEDI. Finally, I
will ask you to answer several questions.
1. Which are the 5 most important concerns perceived by your child in
his/her daily life?
1)_______________________________________
2)_________________________________
3 )_________________________________
4 )_________________________________
5 )_________________________________
2. In your opinion, how would you describe your child’s health?
3. In your opinion, how would you describe your child’s satisfaction in
his/her daily life?
4. When does your child feel happy? Please list 1 or 2 examples.
1) __________________________________________________________
2) _________________________________________________
5. (optional) I give the permission to the researcher to call me, if she has any
question about my answers in these inventories.
Name:______________________________
Telephone:_________________________ Email:__________________
Thank you very much!
97
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Appendix E
Revision date: 05/07/02
PARTICIPANT INFORMED CONSENT FORM
Title of Study: An examination of the health-related quality of life and functional skills
as reported by the parents of young children with developmental disability
Principle Investigator: Diane Kellegrew, Ph.D./ Tzu-Hua Ho, B.S., OT
Department: Occupational Science and Occupational Therapy, University of Southern
California
24-Hour Telephone Number: (213) 764-8536
Purpose Of The Study:
You and your child are invited to participate in a research study that will examine the
health-related quality of life and functional skills of young children with developmental
disability. The following information is provided in order to help you make an informed
decision whether or not to participate. We hope to gather the information about parents’
view of health-related quality of life and functional skill of their children. You are
invited as a possible participant in this study because you are the parent of the child
with a developmental disability between the ages of 5 to 7 years. About 30 participants
will take part in this study.
Procedure:
If you decide to participate, you will be asked to fill out 3 inventories: a demographic
data form, the Pediatrics Quality of Life Inventory (PedsQL), and the functional skills
: scale of Pediatric Evaluation of Disability Inventory (PEDI). The demographic data
form wilt take about 5 minutes to complete. This- form will- ask information, about your
age, employment and other demographic terms. Then, the Pediatrics Quality of Life
Inventory will be completed. It will take about 5. to IQ ; minutes. This tpventory wffi ask
for .information about your Child’s social life, emotions, and development. Finally, you
will fill out the functional skills scale of Pediatric Evaluation of Disability Inventory.
This should take about 30 minutes. This inventory will ask for information about your
child’s daily living skills. Total time of completing all forms will be about 40-50
minutes. If you cannot finish the inventories at one time, you can take them home and
return them after you finish by postage-paid envelope.
Risks:
There are no known risks associated with this research.
Benefits:
You may receive no direct benefit from your participation in this study. However your
participation may help us to learn about the parent reports of their child’s life quality
and functional skills. The information can help therapists to better understand the
needs of families and children related to health and disability.
Alternatives To Participation:
An alternative would be to not participate in this study.
Financial Responsibility:
- 1
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Revision date: 05/07/02
Neither you nor your insurance company will be billed for your participation in this
study.
Compensation:
There will be no financial compensation for participating in the study.
Offer To Answer Questions:
Your participation will be directed by Dr. Diane Kellegrew and Tzu-Hua Ho at the USC
Department of Occupational Science and Occupational Therapy at (323) 442-2882 or
(213) 764-8536 who you may contact with any questions or concerns regarding your
participation. If you have questions regarding your rights as a study subject, you may
contact the Institutional Review Board Office at (323) 223-2340. You will be given a
copy of this form to keep.
Injury Statement:
In the unlikely event that you should suffer an injury as a direct consequence of the
research procedures.
Confidentiality Statement:
Every effort will be made to keep your personal information confidential by the
investigator and the Institutional Review Board (IRB) to the extent provided by law.
The information from this study may be published in scientific journals or presented at
scientific meetings but your identity will be kept strictly confidential.
Voluntary Participation And W ithdrawal Statement:
Your participation in this research study is voluntary. Your decision .whether or not to
participate will not interfere with your right to health care or other services to which
you are otherwise entitled. You are not waiving any legal claims or rights because of
your participation in this study. If you do decide to participate, you are free to withdraw
your consent and discontinue participation at any time.
Termination From This Study Without Your Consent:
Your participation in the study may be terminated without your consent if you fail to
follow the investigator’s instructions.
California Law Requires That You Must Be Informed About:
1. The nature and purpose of the study.
2. The procedures in the study and any drug or device to be used.
3. Discomforts and risks to be expected from the study.
4. Benefits to be expected from the study.
5. Alternative procedures, drugs or devices that might be helpful and their risks and
benefits.
6. Availability of medical treatment should complications occur.
7. The opportunity to ask questions about the study or the procedure.
8. The opportunity to withdraw at any time without affecting your future care at this
institution.
9. A copy of the written consent form for the study.
10. The opportunity to consent freely to the study, without the use of coercion.
11. Statement regarding liability for research-related injury, if applicable.
- 2 -
99
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Revision date: 05/07/02
Agreement
I have read the information provide above. I have been given the opportunity to
ask questions and all of my questions have been answered to my satisfaction, My
signature below indicates that I and my child have decided' to participate having
read the information provided above.
Name of Subject Signature Date Signed
Name of Witness Signature Date Signed
I have personally explained the research to the subject or the subjects legally
authorized representative and answered any questions they posed. I believe that
he/she understands the information described in this informed consent and freely
consents to participate.
Name of Investigator Signature Date Signed
Form Valid For E nrolm en t From
M 1 2 2002 ,1 1 ) 1 1 1 1 2003 _
institutional R eview Board
-3 -
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.

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Asset Metadata

Creator Ho, Tzu-Hua (author)

Core Title An examination of the health-related quality of life and functional skills as reported by the parents of young children with developmental delays

School Graduate School

Degree Master of Arts

Degree Program Occupational Science and Occupational Therapy

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag health sciences, rehabilitation and therapy,OAI-PMH Harvest

Language English

Contributor Digitized by ProQuest (provenance)

Advisor Kellegrew, Diane H. (committee chair), Parham, Diane (committee member), Zemke, Ruth (committee member)

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c16-304958

Unique identifier UC11341051

Identifier 1416557.pdf (filename),usctheses-c16-304958 (legacy record id)

Legacy Identifier 1416557.pdf

Dmrecord 304958

Document Type Thesis

Rights Ho, Tzu-Hua

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the au...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus, Los Angeles, California 90089, USA