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A study of pediatric oncology nurses' attitudes to and knowledge of genetic testing
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A study of pediatric oncology nurses' attitudes to and knowledge of genetic testing
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A STUDY OF PEDIATRIC ONCOLOGY NURSES'
ATTITUDES TO AND KNOWLEDGE OF
GENETIC TESTING
by
Marleen J. M. Voortmans
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 SCIENCE
(Applied Biometry/Epidemiology)
May 1997
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UMI Number: 1384927
UMI Microform 1384927
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This microform edition is protected against unauthorized
copying under Title 17, United States Code.
UMI
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U N IV ERSITY O F SO U T H E R N C A LIFO R N IA
THE GRADUATE SCHOOL
UNIVERSITY RARK
LOS ANGELES. CALIFORNIA S0Q 07
This thesis, •written by
M ax.l Jfooxfmans______________
under the direction of hsx.— Thesis C om m ittee,
and approved by a ll its members, has been pre -
sented to and accepted by the D ean of The
Graduate School, in partial fulfillm ent of the
requirem ents fo r the degree of
Master of Science
D m
DateJ^SS^..lLi..l?JJ^
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TABLE OF CONTENTS
Page
UST OF TABLES ................................................................................... iii
LIST OF FIGURES.................................................................................. v
1
1. INTRODUCTION...............................................................................
6
2. MATERIAL AND METHODS .........................................................
3. RESULTS .......................................................................................... 10
4. DISSCUSSION .................................................................................. 15
TABLES ................................................................................................ 17
FIGURES ............................................................................................... 32
REFERENCES ...................................................................................... 35
APPENDIX ........................................................................................... 36
i i
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LIST OF TABLES
Table Page
1. Description of cohort at pre-lectures test.......................................... 17
2. Pre-lectures scores for the cohort...................................................... 18
3. Pre/post lectures scores for matched group (n= 70)......................... 18
4. Pre/post lectures scores for matched group (n=70) stratified by
level of education............................................................................... 19
5. Pre/post lectures scores for matched group (n=70) stratified by
religious preference........................................................................... 2 0
6 . Pre/post lectures scores for matched group (n=70) stratified by
marital status .................................................................................... 2 1
7. Pre/post lectures scores for matched group (n=70) stratified by
years of experience in pediatric oncology....................................... 2 2
8 . Pre/post lectures scores for matched group (n=70) stratified by
certified pediatric oncology nurse................................................... 23
9. Pre/post lectures scores for matched group (n=70) stratified by
number of children.......................................................................... 24
10. Percent distribution of subjects who believe the parents of the patient
should be tested if a reliable predictive test is made available which
would determine whether a person carried a gene that put them at
risk to develop cancer.................................................................... 25
11. Percent distribution of subjects who believe the patient should be
tested if a reliable predictive test is made available which would
determine whether a person carried a gene that put them at risk to
develop cancer................................................................................ 25
iii
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12. Percent distribution of subjects who believe the siblings of the
patient should be tested if a reliable predictive test is made available
which would determine whether a person carried a gene that put
them at risk to develop cancer............................................. 25
13. Percent distribution of subjects who believe that if an individual was
told that he | she had a high probability of developing cancer in the
future, with whom they should have an opportunity to discuss the
implications of these results
A. In a support group of others with cancer................................... 26
B. With a social worker.................................................................. 26
C. With a genetic counselor............................................................ 26
D. With a psychologist.................................................................... 27
E. With a religious leader.............................................................. 27
F. With a physician........................................................................ 27
G. With a nurse............................................................................. 28
14. Percent distribution of subjects who believe that someone with a
genetically determined high risk of cancer might face the following
problems if other people were to find out
A. Trouble getting a jo b ............................................................... 2 9
B. Trouble getting health insurance............................................ 2 9
C. Trouble getting life insurance................................................ 2 9
D. Trouble adopting a child........................................................
E. Trouble finding a m ate............................................................
F. Trouble getting loans or financing.........................................
G. People might treat you differently.................................. _
iv
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LIST OF FIGURES
Figure Page
1. Test scores (in %) pre and post nurses workshop.............................. 32
2. Test scores (in %) pre and post nurses workshop by
level of education................................................................................ 33
3. Test scores (in %) pre and post nurses workshop by
years of experience in pediatric oncology ...................................... 34
v
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1. INTRODUCTION
As is widely acknowledged, inheritance plays a role in the development of all
human cancers. If people who are at increased risk for cancer because of their genes
can be identified, efforts toward prevention can be effectively targeted. In general,
some of the approaches to prevention that can be directed to the portion of cancer
cases attributed to genetic factors are: (a) genetic counseling of individuals/parents of
children at increased risk for specific cancers because of a congenital or genetic
disease in themselves or their relatives, or because of their familial pattern of cancer
occurrence; (b) prenatal diagnosis for the, although yet, few genetic conditions that
predispose to cancer and are amendable to prenatal testing; (c) surveillance of high
risk individuals to detect early manifestation of new recurrent cancer; (d) prophylactic
surgery on the target organ or tissue in appropriate cases; and (e) limiting exposure of
high risk individuals to known carcinogens (1 ).
Cancer prevention will come into its own as developing knowledge of the
human genome (i.e. the human chromosomal blueprint) allows us to accurately predict
who is at risk for which cancers. Although they currently have varying and mostly
primitive clinical applicability, in the not-so-distant future, genetic markers will permit
the relatively accurate subcathegorization of individuals at high risk. Genetic
subgrouping is likely to change cancer prevention practices by increasing the
acceptability of the "addition" method of cancer prevention. This approach entails the
1
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use of agents or interventions designed to prevent cancer initiation or to inhibit cancer
promotion. In contrast, the "subtraction" method of cancer prevention involves the
implementation of regulations of measures to eliminate public exposure to
carcinogens. Currently, the addition method is controversial because of uncertainty
about risk versus benefit in the absence of disease. And currently, subgrouping of
patients according to newer biologic and genetic markers is in its formative stages, but
by the twenty first century, prognostic indexes will become the new "gold standard"
for treatment decision making. When this occurs, patients and family members will be
faced with large amounts of complex information and will need help to process and
interpret it. Oncology nurses knowledgeable about these new developments will be in
a strategic position to provide that service (2 ).
Oncology nursing began in the 1950's, less than forty five years ago. It grew
out in the pace of scientific developments in treating cancer and because of changing
social attitudes about the disease. (3) No nurses are more important than those who
care for mothers, children, and their families (4).
Genetic counseling is a communication process between health professionals
and family members that begins as soon as a genetic problem is identified. Genetic
counseling comprises four phases: diagnosis, information, support, and follow-up
counseling. Genetic counseling attempts to help the individual or family: (a)
comprehend the medical facts, including the diagnosis, probable course of the disease,
and available management options; (b) understand how heredity contributes to the to
2
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disease and life recurrence risks; (c) understand the options for dealing with the
recurrence risks; (d) choose the best course of action for the family; and (e) learn to
cope with an affected child's disease and the recurrence risks.
Nurses have a responsibility to understand the significance of information they gather
and may be held accounTable for damage resulting from failure to give accurate
information. Mothers look to nurses when they are overwhelmed by medical
terminology. While parents are learning about the diagnosis, they experience various
stages of grief and may have difficulty remembering information they received after
diagnosis. Periodically reviewing information with parents can help increase their
understanding (5).
Nurses have a unique potential to contribute to the effective delivery of genetic
services. First, they are the largest single group of health care providers in the U.S.
Second, they are employed in settings throughout the health care system. Third, nurses
are accustomed to both providing and promoting a broad range of health and related
services for the individuals and families they serve. Implementation of federal
legislation in 1978 mandated both accessibility to genetic services for all segments of
the population and the dissemination of education and information to health
professionals, teachers, students, and the public (6 ).
When a genetic disorder or cancer is identified early, associated conditions can
be anticipated. Preventative measures and therapy, when available, can be
implemented and potential complications avoided. Future health potentials can be
3
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actualized and/or enhanced. Early identification can be achieved by incorporating
genetic history-taking and assessment skills into routine pediatric nursing data
collection.
Rapid expansion of genetic knowledge and technological advances in genetic
diagnosis and gene therapy mandate that all nurses become genetically cognizant.
Genetic advances and related topics are frequently reported in lay media.
However, this type of genetic information can be incomplete, misinterpreted by the
reporter, reported with bias, or blatantly inaccurate. Therefore, nurses need to seek
genetic information in refereed professional journals for their own knowledge growth.
Journal clubs on individual nursing units or hospital-wide can be formed for the
purpose of reviewing and interpreting genetic articles. Properly informed nurses are
better equipped to clarify and correct any misinformation that patients and families
may have received through general media.
To obtain a broader scope of genetic knowledge, nurses need to attend genetic
conferences, workshops, and/or seminars provided by hospitals, genetic regional
centers or other organizations (7).
For those families with relatively infrequent cancers occurring primarily in
children, a host of factors come into play. Often these cancers are due to a change or
deletion in a single gene. For some, such as retinoblastoma, tests are available to
distinguish hereditary from sporadic types. The focus is largely on etiology and future
reproduction. These families need to be referred for genetic counseling at the earliest
4
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possible time. In addition to risks to future children, issues such as guilt and
responsibility for disease transmission must be addressed.
Oncology nurses are ideally suited to help those with a family history of cancer and
those identified at increased hereditary risk of cancer to deal with the uncertainty and
increased anxiety that may be associated with such a history of assessment (8 ).
The objective of this study was to find a way to better develop continuing
education and informational resources that can help in working with families affected
by cancer.
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2, MATERIAL AND METHODS
2.1. MATERIAL
During the Spring 1994 Children's Cancer Group (CCG) meeting in
Washington a nursing workshop was held about "genetics". A questionnaire, designed
to assess the knowledge and beliefs about cancer and genetics, was presented to the
participating nurses before and after lectures about cancer and genetics. The
questionnaire was exactly the same pre and post lectures, except for the color of the
sheets: pre lectures, the booklet was pink and post lectures, the booklet was green.
The purpose of this questionnaire was to better develop continuing education and
informational resources that can help in working with families affected by cancer.
All of the participating nurses worked in pediatric oncology settings. Pre
lectures, 176 nurses completed the test and post lectures, 126 nurses completed the
test.
The test/questionnaire consisted of 4 parts:
1) Genetic Concepts: 10 knowledge questions.
2) Genetics in Human Cancer; 10 knowledge questions.
3) Cancer Risk;
a) question about where the nurses find information about genetics;
b) attitude questions towards predictive genetic testing. Answers range from
‘strongly disagree' (score = 1) to 'strongly agree' (score = 5).
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c) questions about beliefs regarding predictive tests and availability, help, and
problems for the affected people. Possible answers were 'yes', 'no', and
'unsure'.
d) question about confidence regarding genetics. Possible answers range from
'not confident at all' (score = 1) to 'fully confident' (score = 5).
e) question about opinion on rights of the parents towards genetic testing for
their children.
41 About You: Demographic information about the participating nurses.
Of special interest were a) the changes between pre and post lectures test
scores and the changes in attitudes and beliefs pre and post lectures, and b) the
association between test scores and attitudes and beliefs and demographic information
about the nurses.
2.2. STATISTICAL METHODS
Because no unique identification number was given to the participating nurses,
the test scores data were at first analyzed within the pre lectures group (n=176) and
within the post lectures group (n= 126).
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Several attempts were made to overcome the problem with the missing unique
identification numbers in order to compare test results between the two groups (pre
lectures and post lectures). By looking at the demographic information we found that
70 nurses filled out this part, both pre and post lectures. We matched them by date of
birth and excluded all the others for further comparisons and used this group (n=70)
for the paired analyses between the two groups.
For all statistical tests, the significance level was set at 0.05.
For the pre lectures test scores (total n= 176), the chi-square test was used to
compare matched group (n=70) with unmatched group (n=126) on demographic
information to ascertain potential bias.
The genetics test was divided in Part one: genetic concepts and Part two:
genetics in human cancer. Paired t-tests were used to calculate the differences between
pre and post lectures test scores for the matched group (n=70). To evaluate the pre
and post lectures differences within strata defined by level of education, religious
preference, marital status, years of experience in pediatric oncology, certified pediatric
oncology nurse, and having children, one-way anova and paired t-tests were used.
For statistical analyses, the following groups were recategorized:
level of education (baccalaureate, diploma and masters/doctoral); marital status (not
married, married/been married); years worked in pediatric oncology (less than five
8
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years, six to twelve years, more than 13 years); number of children (none, one, more
than one child).
For the analyses of cancer risk, the Mantel-Haenszel chi-square test (or
Fisher's Exact Test when some of the cells had expected counts less than 5), two
tailed, was used to evaluate the changes in attitudes and beliefs about cancer risk
between matched pre and post lectures groups.
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RESULTS
Table 1 presents the characteristics of the cohort at pre-lectures test. A total of
176 nurses completed the test pre-lectures and 126 nurses completed the test post
lectures. Of all 176 nurses, 20% had a diploma, 43% had a bachelor degree and 37%
had a masters or doctoral degree.
Of all 176 nurses, 44% were Catholic, 37% were Protestant, 4% were Jewish
and 15% had other religious preference. Looking at the marital status, 22% of the
nurses were never married and 78% were married or had ever been married.
Regarding the years of experience in pediatric oncology, 40% of the nurses had
worked less than five years, 26% had worked between six and twelve years and 34%
had worked more than thirteen years. 30% of the nurses had were certified pediatric
oncology nurses and 70% were not. Of all 176 nurses, 28% had no children, 32% had
one child and 40% had more than one child. Because no statistically significant
difference was found between the matched and the unmatched group for all of these
strata, there was no evidence for bias in the selection of the matched subsample.
Table 2 shows the pre-lectures test scores for the cohort. For neither Part one
(genetic concepts) nor Part two (genetics in human cancer), was a statistically
significant difference found between the matched and the unmatched group. Again, the
matched group appeared to be representative of the full sample.
10
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Table 3 shows a statistically significant improvement (p < 0.001) in test
scores post lectures compared to pre-lectures for Part one (genetic concepts) and for
Part two (genetics in human cancer).
Table 4 shows no statistically significant difference in test scores for the
different levels of education within the pre lectures group, but within the post lectures
group, a statistically significant difference was observed for both Part one (p= 0.05)
and Part two (p= 0.004) of the test. The higher the level of education, the higher test
scores were obtained. For the nurses with a diploma, no statistically significant
improvement was observed for Part one of the test. Nurses with a bachelor’s degree
(p= 0 .0 2 ) and nurses with a masters/doctoral degree (p= 0 .0 0 2 ) showed a statistically
significant improvement in test scores after the lectures. For Part two of the test,
highly statistically significant improvements were observed for all three levels of
education (p < 0 .0 0 1 ).
Table 5 shows no statistically significant difference in test scores for the
different levels of education within the pre lectures and within the post lectures group.
For the Catholic nurses a statistically significant improvement was observed for Part
one of the test (p= 0.004) and for Part two of the test (p< 0.001). Also for Protestant
nurses, a statistically significant improvement was observed for Part one of the test
(p= 0.02) and for Part two of the test (p< 0.001). For Jewish nurses and nurses with
11
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other religious preferences, no statistically significant difference in test scores pre and
post lectures was observed.
Table 6 shows no statistically significant difference in test scores for the
marital status within the pre lectures and within the post lectures group. For the never
married as well for the married/been married nurses a statistically significant
improvement was observed for Part one of the test (p= 0.01 and p < 0.001
respectively) and for Part two of the test (p < 0.001 for both).
Table 7 shows no statistically significant difference in test scores for the years
of experience in pediatric oncology within the pre lectures and within the post lectures
group. Except for nurses who worked more than thirteen years in Part one of the test,
all other groups of nurses showed a statistically significant improvement after the
lectures. For nurses who worked less than five years, Part one (p= 0.02) and Part two
(p< 0.001); for nurses who worked six to twelve years, Part one (p= 0.007) and Part
two (p< 0.001); for nurses who worked more than 13 years, Part two (p= 0.001).
Table 8 shows no statistically significant difference in test scores for the
certified pediatric oncology nurses within the pre lectures and within the post lectures
group. Between pre and post lectures scores a statistically significant improvement was
observed the certified group in Part one (p= 0.04) and Part two (p= 0.007); for the
non certified group in Part one (p= 0.002) and in Part two (p < 0.001).
Table 9 shows no statistically significant difference in test scores for how many
children the oncology nurses have within the pre lectures and within the post lectures
12
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test Part one, but for Part two of the test, a statistically significant difference was
observed within the pre lectures scores (p= 0.04) and within the post lectures scores
(p= 0.008). For the overall test, statistically significant improvement was shown after
the lectures: Part one, nurses without children (p= 0.05), nurses with one child (p=
0.006) and nurses with more the one child (p= 0.02); Part two showed highly
significant changes for all three groups of nurses (p< 0 .0 0 1 ).
Looking at the percent distribution of nurses who believe the parents of the
patient, the patient or the siblings of the patient should be tested if a reliable predictive
test is made available which would determine whether a person carried a gene that put
them at risk to develop cancer, Table 10, Table 11 and Table 12 respectively, show no
statistically significant changes in beliefs pre and post lectures.
Table 13 B shows a statistically significant change in the percent distribution of
nurses who believe that if an individual was told that he | she had he high probability of
developing cancer in the future, they should have an opportunity to discuss the
implications of these results with a social worker. More nurses responded yes instead
of no or unknown after the lectures (p= 0.02). No statistically significant difference
was observed for nurses who believe that these individuals should have an opportunity
to discuss the implications of these results in a support group of others with cancer
(Table 13 A), with a genetic counselor (Table 13 C), with a psychologist (Table 13
D), with a religious leader (Table 13 E), with a physician (Table 13 F) or with a nurse
(Table 13 G).
13
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Table 14 shows no statistically significant changes in the percent distribution of
nurses pre and post lectures who believe that someone with a genetically determined
high risk of cancer might face the following problems if other people were to find out:
Table 14 A: trouble getting a job; Table 14 B: trouble getting health insurance; Table
14 C: trouble getting life insurance; Table 14 D: trouble adopting a child; Table 14 E:
trouble finding a mate; Table 14 F: trouble getting loans or financing; Table 14 G:
people might treat you differently.
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DISCUSSION
Currently, subgrouping of patients according to newer biologic and genetic
markers is in its formative stages, but by the 21st century, prognostic indexes will
become the new "gold standard" for treatment decision making. Patients and family
members will be faced by large amounts of complex information and will need help to
process and interpret it. Oncology nurses knowledgeable about these new
developments will be in a strategic position to provide that service. Genetic counseling
attempts to help the individual or family: the nurses need to comprehend the medical
facts, must understand how heredity contributes to the disease, must understand the
options for dealing with the recurrence risks and must be able to choose the best
course of action for the family. This is what continuing education hopes to achieve.
One part of the test was to determine if some groups of pediatric oncology nurses are
more adapt than others. Some topics were transmitted reasonably well, other topics
need more intense training. Another goal of the test was to work out which nurses and
which areas need to be targeted.
Based on the results of this test, all groups benefit from the lectures. All test
scores improved after the lectures, without any exception. Some concepts seem to be
better understood, because the scores of Part two of the test: genetics in human cancer
were overall lower than the scores of Part one of the test: genetic concepts.
15
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Attitudes and beliefs of the nurses are not really based on facts, so it is hard to
set a specific goal to obtain. People have strong opinions about how to deal with
cancer and genetic knowledge does usually not change these opinions. It is not
surprising that the nurses showed a range of opinions about these things. Feelings have
more to do with society than with science. Most of the nurses react positively towards
genetic testing for parents of the patient, for the patient and for the siblings of the
patient if a reliable predictive test is made available. They are also in favor of a broad
choice of professional assistance for the patients as well as for the family. Cancer is
still a very dark field for most people and most nurses associate social and
psychological problems with cancer. Although the pediatric oncology nurse is and will
always be one of the key persons in a cancer patient's life, the final decisions will be
made by the oncologist and geneticist. This study shows that continuing education
should be encouraged, because the scores improved clearly after the lectures; but one
goal is to achieve higher scores from the beginning. Not giving the participating
nurses a unique identification number was a major flaw in this study and should
definitely be avoided in the future.
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Table 1. Description of Cohort at Pre-Lectures Test
Characteristics
All
(N=176)
Unmatched
(N=106)
Matched
(N=70)
p-value
Education
Diploma 34 (20% ) 24 10 > 0.1
Bachelor 72(43%) 41 31
Graduate 61 (37% ) 35 26
Religious Preference
Catholic 71 (44% ) 37 34 > 0.1
Protestant 61 (37% ) 38 23
Jewish 6(4%) 4 2
Other 24 (15% ) 16 8
Marital Status
Never married 39 (22% ) 22 17 > 0.1
Been married 137 (78% ) 84 53
Experience
0 - 5 years 63 (40% ) 38 25 > 0.1
6-12 years 40 (26% ) 24 16
13 years + 53 (34% ) 29 24
Certified
Yes 46 (30% ) 62 47 > 0.1
No 109 (70% ) 28 18
Children
0 46(28% ) 25 21 > 0.1
1 53 (32% ) 34 19
more than 1 67 (40% ) 40 27
Note: Some subjects did not respond to all questions.
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Table 2. Pre-Lectures Scores1 for the Cohort
All Unmatched Matched p-Value
Variables (N=176) (N=106)
3
I I
o
Genetic Concepts 60.5 ± 10.9 59.7 ±11.6 61.6 ± 9.7 > 0.1
Genetics in Human Cancer 44.4 ± 14.7 45.0 ± 12.5 43.5 ± 10.4 > 0.1
1. Score = percent correct (mean ± SD)
Table 3. Pre/Post Lecture Scores 1 for Matched Goup (n = 70)
Pre Post Post - Pre p-value
Genetic concepts 61.6 ± 9.7 68.8 ± 10.5 7.2 < 0.001
Genetics in human cancer 43.5 ± 10.4 61.6 ± 14.5 18.1 < 0.001
1. Score = percent correct (mean ± SD)
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Table 4. Pre/Post Lectures Scores1 for Matched Group(n = 70)2
Stratified by Level of Education
Test Education N Pre Post Post - Pre p-value
Genetic concepts
Diploma 1 1 59.4 ± 7.3 64.8 ± 6.5 5.4 ± 7.0 0.02
Bachelor 32 60.8 ± 9.6 66.7 ± 10.7 5.9 ± 9.8 0.0006
Graduate 25 63.4 ± 9.9 72.5 ± 10.5 9.1 ± 9.0 0.0002
p-value > 0.1 0.05
Genetics in hum an
cancer
Diploma 1 1 41.8 ± 12.6 64.5 ± 13.0 22.7 ± 15.5 0.0008
Bachelor 32 41.8 ± 6.8 55.8 ± 14.7 14.0 ± 14.0 0.0001
Graduate 25 47.6 ± 10.7 68.2 ± 12.5 20.6 ± 14.0 0.0001
p-value 0.06 0.004
1. Score = percent correct (mean ± SD)
2. Some subjects have missing values.
19
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Table 5. Pre/Post Lectures Scores1 for Matched Group (n = 70)2
Stratified by Religious Preference
Test Religion N Pre Post Post - Pre p-value
Genetic concepts
Catholic 35 62.1 ± 8.4 68.7 ± 9.6 6.6 ± 8.4 0.0001
Protestant 22 61.1 ± 10.6 69.1 ± 11.1 8.0 ± 10.1 0.002
Jewish 3 54.8 ±9.1 65.6 ± 17.8 10.8 ± 11.2 > 0.1
Other 7 62.1 ± 10.9 68.7 ±11.4 6.6 ± 9.9 > 0.1
p-value > 0.1 > 0.1
Genetics in hum an
cancer
Catholic 35 44.4 ± 10.1 60.6 ± 14.1 16.2 ± 14.9 0.0001
Protestant 22 45.1 ± 9.6 64.7 ± 14.6 19.6 ± 19.4 0.0001
Jewish 3 38.6 ± 9.6 57.6 ± 25.8 19.0 ± 20.8 >0.1
Other 7 40.9 ± 8.8 60.4 ± 15.0 19.5 ± 19.5 0.004
p-value > 0.1 > 0.1
1. Score = percent correct (mean ± SD)
2. Some subjects have missing values.
20
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Table 6. Pre/Post Lectures Scores1 for Matched Group (n = 70)
Stratified by Marital Status
Test Marital Status N Pre Post Post - Pre p-value
Genetic
concepts
Never m arried 18 64.5 ± 8.1 72.6 ± 9.5 8.1 ± 8.0 0.0007
Been m arried 52 60.6 ± 10.0 67.5 ± 10.6 6.9 ± 9.4 0.0001
p-value > 0.1 0.07
Genetics in
hum an cancer
Never m arried 18 45.2 ± 10.9 65.9 ± 14.2 20.7 ± 12.6 0.0001
Been married 52 42.9 ± 10.2 60.1 ± 14.4 17.2 ± 14.8 0.0001
p-value > 0.1 > 0.1
1. Score = percent correct (mean ± SD)
21
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Table 7. Pre/Post Lectures Scores1 for Matched Group (u = 7 0 )2
Stratified by Years of Experience in Pediatric Oncology
Test Experience N Pre Post Post - Pre p-value
Genetic concepts
0 - 5 years 21 60.0 ± 10.5 68.3 ± 12.3 8.3 ± 10.3 0.0006
6-12 years 15 63.3 ± 8.2 72.0 ± 8.5 8.7 ± 9.5 0.002
13 years + 21 61.8 ± 10.5 66.1 ± 9.8 4.3 ± 6.5 0.002
p-value > 0.1 > 0.1
Genetics in human
cancer
0 - 5 years 21 41.8 ± 10.1 61.5 ± 14.3 19.7 ± 13.9 0.0001
6-12 years 15 39.5 ± 8.2 62.4 ± 15.4 22.9 ± 13.1 0.0001
13 years + 21 46.6 ±11.1 58.8 ± 13.1 12.2 ± 14.4 0.0004
p-value 0.08 > 0.1
1. Score = percent correct (mean ± SD)
2. Some subjects have missing values.
22
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Table 8. Pre/Post Lectures Scores1 for Matched Group (n = 7 0 )2
Stratified by Certified Pediatric Oncology Nurse
Test Certificate N Pre Post Post - Pre p-value
Genetic concepts
Yes
No
40
17
64.9 ± 7.6
60.2 ± 10.5
70.6 ± 8.4
67.6 ±11.3
7.4 ± 9.1
5.7 ± 9.0
0.0001
0.007
p-value 0.09 > 0.1
Genetics in human
cancer
Yes
No
40
17
46.5 ± 10.5
41.7 ± 10.1
59.3 ± 15.5
61.4 ± 13.4
19.7 ± 12.0
12.7 ± 14.9
0.0001
0.0003
p-value > 0.1 > 0.1
1. Score = percent correct (mean ± SD)
2. Some subjects have missing values.
23
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Table 9. Pre/Post Lectures Scores1 for Matched Group(n = 70)2
Stratified by Number of Children
Test Children N Pre Post Post - Pre p-value
Genetic concepts
None 21 65.4 ± 10.2 71.5 ± 9.9 6.1 ±9.1 0.0001
1 19 59.4 ± 7.9 66.5 ± 6.9 7.1 ±9.2 0.003
more than 1 27 60.1 ±9.1 67.5 ± 12.4 7.4 ±9.1 0.0003
p-value > 0.1 > 0.1
Genetics in
hum an cancer
none 21 47.8 ± 8.8 70.0 ± 12.2 22.2 ± 12.9 0.0001
1 19 42.3 ± 9.5 56.5 ± 12.1 14.2 ± 10.5 0.0001
more than 1 27 42.2 ± 9.9 58.7 ± 15.5 16.5 ± 17.1 0.0001
p-value 0.04 0.008
1. Score = percent correct (mean ± SD)
2. Some subjects have missing values.
24
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Table 10. Percent Distribution of Subjects who Believe: “the parents of the
patient should be tested if a reliable predictive test is made available
which would determine whether a person carried a gene that put them
at risk to develop cancer”
Attitude/Beliefs Pre Post p-value
No 13.4 2.9 0.08
Yes 61.2 67.7
Unknown 25.4 29.4
Table 11. Percent Distribution of Subjects who Believe: “the patient should be
tested if a reliable predictive test is made available which would
determine whether a person carried a gene that put them at risk to
develop cancer”
Attitude/Beliefs Pre Post p-value
No 9.1 2.9 > 0.1
Yes 72.7 75.0
Unknown 18.2 22.1
Table 12. Percent Distribution of Subjects who Believe: “the siblings of the
patient should be tested if a reliable predictive test is made available
which would determine whether a person carried a gene that put them
at risk to develop cancer”
Attitude/Beliefs Pre Post p-value
No 4.4 7.4 > 0.1
Yes 64.7 63.2
Unknown 30.9 29.4
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Table 13. Percent Distribution of Subjects who Believe: “that if an individual was
told that he | she had a high probability of developing cancer in the
future, with whom they should have an opportunity to discuss the
implications of these results”
A. In a support group of others with cancer
Attitude/Beliefs Pre Post p-value
No 38.5 33.9 > 0.1
Yes 38.5 43.5
Unknown 23 22.6
B. With a social worker
Attitude/Beliefs Pre Post p-value
No 18.8 6.4 0.02
Yes 68.8 88.9
Unknown 12.4 4.7
C. With a genetic counselor
Attitude/Beliefs Pre Post p-value
No 1.4 0 0.06*
Yes 92.9 100
Unknown 5.7 0
* Fisher Exact Test is used due to the small cell.
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Table 13(Continued)
D „ -W ith a psychologist
Attitude/Beliefs Pre Post p-value
No 9.0 7.6 0.06
Yes 79.1 87.9
Unknown 11.9 4.5
E. With aieligious leader
Attitude/Beliefs Pre Post p-value
No 10.9 7.9 > 0.1
Yes 71.9 85.7
Unknown 17.2 6.4
F, With a physician
Attitude/Beliefs Pre Post p-value
No 1.4 2.9 . > 0.1*
Yes 95.7 97.1
Unknown 2.9 0
* Fisher Exact Test is used due to the small cell.
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Table 13(Continued)
G. With a nurse
Attitude/Beliefs Pre Post p-value
No 4.5 0 > 0.1*
Yes 88.1 100
Unknown 7.4 0
* Fisher Exact Test is used due to the small cell.
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Table 14. Percent Distribution of Subjects who Believe: “that someone with a
genetically determined high risk of cancer might face the following
problems if other people were to find out”
A. Trouble getting a job
Attitude/Beliefs Pre Post p-value
No 1.5 1.4 > 0.1*
Yes 88.4 89.9
Unknown 10.1 8.7
* Fisher Exact Test is used due to the small cell.
B. Trouble getting health insurance
Attitude/Beliefs Pre Post p-value
No 0 1.4 > 0.1*
Yes 97.1 95.7
Unknown 2.9 2.9
* Fisher Exact Test is used due to the small cell.
C. Trouble getting life insurance
Attitude/Beliefs Pre Post p-value
No 0 0 > 0.1*
Yes 97.1 95.7
Unknown 2.9 4.3
* Fisher Exact Test is used due to the small cell.
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Table 14(Contimied)
P . Trouble adopting a child
Attitude/Beliefs Pre Post p-value
No 0 1.4 > 0.1*
Yes 91.4 92.8
Unknown 8.6 5.8
* Fisher Exact Test is used due to the small cell.
E. Trouble finding a mate
Attitude/Beliefs Pre Post p-value
No 8.8 13.0 > 0.1
Yes 54.4 66.7
Unknown 36.8 20.3
F. Trouble getting loans or financing
Attitude/Beliefs Pre Post p-value
No 11.8 8.7 0.10
Yes 75.0 76.8
Unknown 13.2 14.5
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
D. Trouble adopting a child
G. People might treat you differently
Attitude/Beliefs Pre Post p-value
No 7.5 5.8 > 0.1
Yes 77.6 76.8
Unknown 14.9 17.4
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Test Scores (in % ) Pre an d Post Nurses W orkshop
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< 1 y e a r 1 - 5 years 6 - 1 0 y ears > 1 0 years
KEKEREN-CES
(1) Parry Dilys M., (1987). Strategies for Controlling Cancer through Genetics.
Cancer Research, 47, 6814-6817.
(2) Engelking Constance, (1994). New Approaches: Innovations in Cancer
Prevention, Diagnosis, Treatment, and Support
Oncology Nursing Forum, 21(1), 62-71.
(3) Miaskowski Christine, (1990). The Future of Oncology Nursing.
Nursing Clinics of North America, 25(2), 461-469.
(4) Williams Janet K., (1993). New Genetic Discoveries Increase Counseling
Opportunities.
MCN, 18,218-222.
(5) Williams Janet K., (1986). Genetic Counseling in Pediatric Nursing Care.
Pediatric Nursing, 12(4), 287-290.
(6) Foreman Irene, (1988). Education of Nurses in Genetics.
American Journal of Human Genetics, 43,552-558.
(7) Prows Cynthia A., (1992). Utilization of Genetic Knowledge in Pediatric
Nursing Practice.
Journal of Pediatric Nursing, 7(1), 58-61.
(8) Kelly Patricia T., (1992). Informational Needs of Individuals and Families with
Hereditary Cancers.
Seminars in Oncology Nursing, 8(4), 288-292.
Reproduced with permission of the copyright owner. Further reproduction prohibited without permission.
Due:_____
Participant #:
CCG NURSING WORKSHOP
SPRING 1994
POST-WORKSHOP PARTICIPANT ASSESSMENT: GENETICS
This questionnaire is designed to assess your knowledge and beliefs about cancer and genetics. By during
this information, you will be helping the CCG Nursing Committee and Genetic Epidemiology Committee be
better prepared to develop continuing education and informational resources that can help in working with
families affected by cancer. We greatly appreciate your help. All information from this questionnaire will
be kept confidential and if questionnaire results are published, they will not be identifiable individually.
GENETIC CONCEPTS:
1. What percenUge of pediatric inpatients have a disorder with a genetic component?
5*
25%
50%
95%
2. Number the following from the smallest part (1) to the largest (6):
human body
gene
nucleus
chromosome
cell
DNA
3. Which of the following are the chemical bases that make up DNA, that is the 'alphabet* that makes up
the genetic code? Check each correct answer.
adenine
tyrosine
guanine
thymine
cytosine
4. Which of the following statements are true of an error in a chemical base? Check any that are correct.
it will not affect cell function
it can alter the production of necessary proteins
it can result in a faulty protein
5. Check any statement below which is correct:
human beings have 23 pairs of chromosomes
as a safety mechanism, there are two copies of each gene
distinct copies of genes are called alleles
the genetic code for people is called the human genome
there are 50,000 - 100,000 human genes
36
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CCG Nursing Workshop
Participant Assessment
6. Which of the following best describes hereditary mutations:
somatic mutations which can occur spontaneously any time in life in any tissue in which there is
cell division
gennlinc mutations or deletions of specific genes which are present in every cell of the body
7. A . karyotype is:
the number of chromosomes per cell
the ordered arrangement of chromosomes
the physical expression of genotype
the genetic constitution of an individual
8. Genetic disorders can be inherited if:
the affected parent has a single defective gene which dominates its normal counterpart
both parents carry a single defective gene
a mother has a defective gene on one of her X chromosomes
9. Gene therapy may involve:
replacing defective genes
administering proteins to restore normal function
adding genes to bolster body functions like immunity
10. Which of the following apply to the concept of gene penetrance? Check any that are correct
gene penetrance varies with different hereditary diseases
gene penetrance refers to the proportion of individuals who have the mutant gene and show
manifestations of the mutant gene
in a family where the paternal grandfather and grandson have a hereditary disease, but the father
of the child does not, the defective gene was not penetrant in the father.
GENETICS IN HUMAN CANCER
1. If a patient had bilateral retinoblastoma as an intint, the risk of retinoblastoma to each of his/her
offspring is approximately:
556
25%
50%
95%
2. How does the above risk change if one of the original patient's parents also had bilateral
retinoblastoma?
no significant change
increases the risk significantly
decreases the risk significantly
37
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CCG Nursing Wo r k s ho p
Participant Assessment
3. Which factors) increases) the risk of a second malignant neoplasm in a retinoblastoma patient?
unilateral retinoblastoma
bilateral retinoblastoma
treatment with radiation therapy
a family history of retinoblastoma
4. For a childhood cancer patient, when is it important to take a detailed family history of cancer and
other possible genetic disorders?
at new patient registration
annually
at the five year disease-free date
at the time the long-term survivor of childhood cancer indicates his/her intent to start a fam ily
For the next question the choice of answers is:
a. never
b. rarely
c. sometimes
d. nearly always
e. always
5. Should cancer be considered a genetic disease?
at the level of the individual cell?
at the level of the family, that is transmitted horn generation to generation?
6. The father of a childhood leukemia patient brings in a newspaper article regarding identification of a
new genetic change in cancer. The article is about a specific chromosomal translocation that is
frequent in a specific B-cell childhood leukemia, and involves identification of the genes at the break
point of the translocation. The parent wants to know what this information means for his child.
1. Most likely this new find represents:
a tumor specific genetic change
an inherited predisposition or germline genetic change
2. The genetic find is likely to be most useful in:
diagnosis and classification of the leukemia
identification of those at high risk of leukemia
7. If a parent of a childhood cancer patient asks, 'what is the risk of childhood cancer in my other
children?* and the family history does not reveal any distinct cancer predisposition or unusual pattern
of cancer, the appropriate answer would be that the risk for another sibling is:
2 to 3 fold increase over that of children who do not have siblings with childhood cancer
1 in 200 to 300
1 in 1000
1 in 50
10 fold increase over the children who do not have a sibling with cancer
38
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CCG Nursing Workshop
Participant Assessment
8. For a childhood cancer patient successfully treated with alkylating agent therapy and pelvic radiation,
and no family history of a cancer predisposition or personal history of a cancer predisposing syndrome,
die ride of cancer in the offspring is:
1 in 500 to 1 in 1000
not increased over the general population
increased 10 fold over the general population
highly dependent on the dose of radiation and chemotherapy
9. Inherited mutations in the p53 tumor suppressor gene define individuals at nearly a 100% risk of cancer
by the age of:
10 years
20 years
40 years
60 years
80 years
10. The childhood cancer patient for whom a constitutional karyotype is highly indicated is the patient with
childhood cancer and:
developmental delay
aniridia
genitourinary anomalies
bilateral or multiple primary tumors
a family history of cancer
CANCER RISK:
For the nett questions, fill in the blank or circle the answer you choose.
1. What percentage of the general population, on a scale of 0 to 100%, is expected to develop
cancer?__________________
2. Where have you learned about genetic factors in cancer? Please circle yes or no for the following
sources:
1. Basic nursing education yes no
2. Continuing education lectures
or seminars yes no
3. Scientific or professional
journals yes no
4. Oncologists yes no
5. Geneticists yes no
6. Media (newspapers, magazines.
TV news, radio) yes no
7. Other
39
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CCG Nursing Works hop
Participant Assessment
3. Have you ever beard of a genetic test that could tell if a person carried a gene that put them at risk for
any generic disease and/or cancer?
yes
no
For the following seven statements, please circle a number from 1 • 5, where 1 means Strongly Disagree
and 5 means Strongly Agree.
4. If a predictive test was safe, simple, and 100% certain to detect a cancer predisposing gene, it should
be made available to those who want it.
1..........................2..........................3.........................4...........................5
Strongly disagree Strongly agTee
5. If a predictive test was very accurate in identifying a cancer predisposing gene, but the test could not
predict the type of cancer or when it might occur, it should be available to those who want it
1.........................2..........................3...........................4......................... 5
Strongly disagree Strongly agree
6. Not all cancers are equally curable. If a particular cancer was curable if detected early, the predictive
test should be available to those who want it
1..........................2..........................3.........................4....... .\..................5
Strongly disagree Strongly agree
7. If a particular cancer was not likely to be cured, the predictive test should be available to those who
want it
1......................... 2..........................3......................... 4.......................... 5
Strongly disagree Strongly agree
8. Counseling should be given to people before they have a predictive genetic test (for example, to explain
what the test does, and what strengths, weaknesses, and risks the test has).
1......................... 2..........................3......................... 4..........................5
Strongly disagree Strongly agree
9. Counseling should be given to people alter they receive generic test results.
1..........................2..........................3......................... 4..........................5
Strongly disagree Strongly agree
10. Testing and counseling probably will only be available in special centers. Therefore, counseling before
and after testing will probably require several trips to a special center. Counseling should still be
required for those having testing.
1..........................2..........................3......................... 4..........................5
Strongly disagree Strongly agree
40
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C C G Nursing Works hop
Participant Assessment
11. Which of the following do you think should be tested if a reliable predictive test is made available
which would determine whether a person carried a gene that put them at risk to develop cancer?
Ba re n ts of y o u r p a tie n t (c h ild y e s no u n s u r e
w ith p e d ia tric m a lig n a n c y )
your patient yes no unsure
siblings of your patient yes no unsure
12. If an individual was told that be/she had a high probability of developing cancer in the future, with
whom do you think they should have an opportunity to discuss the implications of these results:
13.
1. in a support group of others with cancer yes no unsure
2. with a social worker yes no unsure
3. with a generic counselor yes no unsure
4. with a psychologist yes no unsure
5. with a religious leader yes no unsure
6. with a physician yes no unsure
7. with a nurse yes no unsure
8. other
Which of the following problems do you think someone with a genetically determined
cancer might face if other people were to find out?
1. trouble getting a job yes no unsure
2. trouble getting health insurance yes no unsure
3. trouble getting life insurance yes no unsure
4. trouble adopting a child yes no unsure
5. trouble finding a mate yes no unsure
6. trouble gening loans or financing yes no unsure
7. people might treat you differently yes no unsure
8. other problems:
9. no problems
14. On a scale of 1 to 5, with 1 meaning not confident at all and S meaning fully confident, please rate
how confident you feel about answering a parent's questions regarding genetics:
1.........................2......................... 3..........................4......................... 5
Not confident at all Fully confident
15. If there was a lot of cancer in a family, do you think that parents should have the right to have their
minor children tested to see if the children are carriers of a gene that puts the child at increased risk to
develop cancer?
yes
no
uncertain
depends on child’s age
ABOUT YOU: For these questions, please check the best response about yourself.
I. Are you Female o r Male.
2- What is your date of birth? month/_day/19__
41
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CCG Nursing Works hop
Participant Assessment
3. What is your work setting:
Hospital - inpatient
Hospital - outpatient
Home care
Nursing education
Other_______________________ ___________
4. If you work in a hospital, is it a
CCG member hospital
CCG affiliate hospital
PPG member hospital
not applicable
5. If you work in a hospital, what is its name and location:
6. What is your marital status?
never married
married, or living with domestic partner
separated
divorced
widowed
7. What level of nursing education have you completed?
Diploma
Baccalaureate
Master’s
Doctoral
8. What is your religious preference?
Catholic
Protestant
Jewish
Other_____________________________ ____
9. How many children do you have:
0 - 5 years of age
6 - 12 years of age
13-18 years of age
>18 years of age
42
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C CG Nursing Workshop
Participant Assessment
10. How many yean have you worked in pediatric oncology?
Le g than I year
1 to 5 yean
6-10 yean
More than 10 yean
11. Are you a Certified Pediatric Oncology Nurse?
ye*
no
TRANK YOU FOR YOUR HELP. WE HOPE YOU ENJOY THE WORKSHOP!
3/94
43
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Asset Metadata
Creator
Voortmans, Marleen J. M. (author)
Core Title
A study of pediatric oncology nurses' attitudes to and knowledge of genetic testing
School
Graduate School
Degree
Master of Science
Degree Program
Applied Biometry
Publisher
University of Southern California
(original),
University of Southern California. Libraries
(digital)
Tag
biology, biostatistics,Health Sciences, Education,health sciences, nursing,health sciences, oncology,OAI-PMH Harvest
Language
English
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Digitized by ProQuest
(provenance)
Advisor
[illegible] (
committee chair
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Document Type
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Voortmans, Marleen J. M.
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Tags
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Health Sciences, Education
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