Journal of Pediatric Psychology, Vol. 28, No. 4, 2003, pp. 233-241
© 2003 Society of Pediatric Psychology
Quality of Life of Adolescents With Perceived Disabilities
University of Washington
All correspondence should be sent to Todd C. Edwards, University of Washington, Center for Disability Policy and Research, Box 358852, Seattle, Washington 98103-8652. E-mail: toddce{at}u.washington.edu. Anne Kazak, PhD, ABPP, former Editor, served as accepting editor on this article.
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Abstract |
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Objective To compare the self-perceived quality of life (QoL) of adolescents with and without disabilities. Method A school-based survey was conducted with 2,801 7th to 12th grade students in a rural area of the United States. The Youth Quality of Life Instrument-Surveillance Module and the Youth Quality of Life Group-Disability Screener were completed. Results Twenty-one percent of all students surveyed reported having one or more physical, emotional, or learning disabilities. Adolescents with disabilities reported lower QoL than adolescent without disabilities. However, self-rated health, depressive symptoms, and contextual variables were significant covariates in the relationship between disability and QoL. Conclusions These findings suggest channels to improve the QoL of adolescents with disabilities. Specifically, reducing social and environmental barriers to promote inclusion of adolescents with disabilities in school, family, and community activities is one practical avenue for reducing disparities in QoL.
Key words: adolescent; disability; quality of life; self perception; depression..
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Introduction |
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Improving quality of life (QoL) of adolescents with disabilities is a major policy goal (Healthy People 2010
). QoL can refer to aspects of a person's well-being
(physical, psychological, social), as well as aspects of the environment and a
person's standard of living (Harding,
2001). Considerable confusion ensues, however, when the term
quality of life is used both as a general organizing concept
referring to widely different aspects and a construct with specific meaning
and unified theoretical underpinning
(Patrick & Chiang, 2000).
Most studies assessing QoL among adolescents with chronic health conditions
and disabilities use a narrow definition focused on aspects attributable to a
particular condition (Wallander &
Varni, 1998). These more focused measures are important for
detecting small or disease-specific changes
(Levi & Drotar, 1998), but
they cannot be used to compare across different conditions.
The World Health Organization Quality of Life (WHOQOL) Group
(Bonomi, Patrick, Bushnell, & Martin,
2000; WHOQOL Group,
1994,
1995) defined QoL as
"individuals' perceptions of their position in life in the context of
the culture and value systems in which they live and in relation to their
goals, expectations, standards and concerns" (1995, p. 1403). This broad
definition locates the QoL concept within the culture and social structure of
the individual and focuses on her or his perceptions. The objective of this
study was to use this broader definition to compare the perceived QoL of
adolescents with and without disabilities.
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Quality of Life and Disability |
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Over 4.7 million youths under age 18 in the United States are estimated to have activity limitations (6.7% of all under age 18; National Institute on Disability and Rehabilitation Research, 1996
), resulting in 66 million restricted
activity days annually, including 24 million days lost from school
(Newacheck et al., 1998).
People with disabilities often experience lack of access to health services
and medical care and are considered to be at increased risk for secondary
conditions, such as musculoskeletal or mental health problems consequent to
the primary disabling condition (Healthy
People 2010; Pope,
1992). As members of a medically underserved minority group,
individuals with disabilities might be expected to experience lower health
status.
QoL is related but not equivalent to other constructs used in adolescent
research, such as psychological well-being, self-esteem, adjustment, and
happiness. The pre-ponderance of the adolescent disability literature has
addressed mental and social adjustment and has shown that adolescents with
disabilities are at greater risk for psychosocial maladjustment than
adolescents without disabilities (Lavigne
& Faier-Routman, 1992;
Wallander & Varni, 1998).
Studies of QoL and depression have shown that these two constructs are
inversely related (Patrick, Edwards, &
Topolski, 2002; Goldney,
Fisher, Wilson, & Cheok, 2000). Symptoms of depression such as
low energy, poor concentration, feelings of fatigue, a loss of interest in
daily activities, social isolation, and a sense of worthlessness
(Centers for Disease Control and
Prevention, 1989) are potentially highly related to the QoL
concept.
Evidence from the literature suggests that a positive self-appraisal of
health may mitigate the deleterious effect of illness or disability on life
satisfaction (Diener, Suh, Lucas, &
Smith, 1999; Wallander &
Varni, 1998). Diener et al.
(1999) reported that
"Life satisfaction was predicted by subjectively interpreted health,
which was influenced by both negative affect and objective health. If people
can find a way to appraise their health positively, the adverse impact of
illness or disability on life satisfaction can be mitigated" (p. 17).
Self-rating of health has been significantly related to a plethora of social
and psychological variables in adolescents, including school achievement,
participation in sports and exercise, psychological well-being, family income,
parent-child relationship, self-esteem, and quality of life, though not
related to physical symptoms (Raphael,
Rukholm, Brown, Hill-Bailey, & Donato, 1996;
Vingilis, Wade, & Adlaf,
1998).
Considering the intrinsic and extrinsic determinants of QoL, Patrick
(1997) proposed a conceptual
model for promoting QoL of people with disabilities that emphasizes
environmental modification, increased opportunity, independence, and autonomy
as key goals for improvement. Clinical interventions can target individuals
and community interventions can target schools and whole communities
(Patrick, Richardson, Starks, Rose, &
Kinne, 1997). These modifiable determinants are important to
include in studies of persons with disabilities.
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Measuring Disability and Quality of Life |
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The medical model and the social model are the two main approaches for classifying and measuring disability (World Health Organization, 2001
). In the medical model, disability is viewed as a problem of
the individual, directly caused by disease, trauma, or other health
conditions, for which professional help is needed. From the perspective of the
social model, disability is primarily attributable to characteristics of
society that exclude participation by individuals affected by disease, injury,
and so on. How disability is measured depends on the needs and worldview of
those doing the measuring. In the medical model, disability is measured
primarily by health professionals and in terms of disorder and functional
level, while in the social model it is measured primarily by self-report and
in terms of the characteristics of the person's environment. Ultimately, these
two models can be considered dialectical and should both be considered when
measuring disability (i.e., the biopsychosocial model).
We and our colleagues developed the Youth Quality of Life Instruments
(YQOL) (Patrick et al., 2002;
Edwards, Huebner, Connell, & Patrick,
2002). The WHOQOL Group definition of QoL was adopted as a guide,
and the grounded theory method (Glaser
& Strauss, 1967) was used in YQOL development. Adolescents'
perspectives were considered primary, supplemented by the views of parents,
health professionals, and youth advocates.
The YQOL Instruments are designed for all youths ages 11–18, including those with and without chronic health conditions or disabilities: easy-to-understand, self-administered, and readable at a U.S. fourth grade reading level (age 9). Two types of items were constructed, perceptual and contextual. Perceptual items measure those aspects of QoL known only to the adolescent and, by definition, cannot be observed by others. These items tap into the key aspect of QoL as articulated in the conceptual definition. Contextual items are self-reported but potentially verifiable or observable by others. These items assess environmental aspects of QoL and adolescents' position in life for assessing differences between population subgroups.
The YQOL Instruments were developed via a modular approach: (a) a long version designed for research and evaluation (YQOL-Research Version [YQOL-R], 15 contextual and 41 perceptual items), and (b) a short version designed for population surveillance (Youth Quality of Life Instrument-Surveillance Version [YQOL-S], 5 contextual and 5 perceptual items). YQOL-S items are a subset of the YQOL-R but are not intended to be representative of the YQOL-R. Rather, the YQOL-S is a collection of individual social indicators considered potentially interesting to policy makers.
In this study, we assess the QoL of adolescents with and without disabilities in relationship to their assessment of self-rated health, depressive symptomatology, and contextual variables. Additionally, we assess the practice and policy implications of the study's findings. Based on the literature review, we formulated the following hypotheses: (a) adolescents with disabilities would report a significantly lower perceived QoL than adolescents without disabilities, before controlling for hypothesized covariates; and (b) self-rating of health, depressive symptoms, and contextual variables would explain a significant amount of variance and narrow the gap in perceived QoL between adolescents with and without disabilities.
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Methods |
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Participants
Data were collected from 2,801 students from March to May, 1998, as a part of the community-based Teen Assessment Project (TAP) Project survey (Small, 1995
), conducted in a
rural southern Oregon county and two schools in northern California. Nine
hundred fifty-seven students reported being in seventh and eighth grade
(across eight schools), 1,809 reported being in ninth to twelfth grade (across
nine schools), and 35 students did not provide information on grade in school.
Student age was collected in categories and distributed as follows: age 10 or
younger = 0.1%, 11 to 12 years = 3.2%, 13 to 14 years = 26.7%, 15 to 16 years
= 38.1%, 17 to 18 years = 30.1%, and 19 years or older = 1.7%. This area is
predominantly lower-middle class, with 37% of the population residing in rural
areas (U.S. Census Bureau,
2000). This research was conducted with approval of the University
of Washington Institutional Review Board and with passive parental consent.
Parents were sent a letter informing them of the survey and were instructed to
contact the school if they did not want their son or daughter to
participate.
Instruments
Youth Quality of Life Group Disability Screener (YQOL-DS 1.0)
(Topolski, Edwards, & Patrick,
2002). The YQOL-DS is a 4-item disability screener based
on the 1994 National Health Interview Survey on Disability
(National Center for Health Statistics,
1994), and the Questionnaire for Identifying Children with Chronic
Conditions (Stein, Westbrook, &
Bauman, 1997), both of which are parent report. We developed the
YQOL-DS because at the time a self-report disability screener
suitable for adolescents could not be located in the literature. For this
study, disability was measured from a biopsychosocial perspective,
incorporating elements of both the medical and social models of
disability.
The items of the YQOL-DS are as follows, all with the response options of No/Yes/I Don't Know: (a) "Do you have any physical disabilities or long-term health problems?" [physical disability]; (b) "Do you have any long-term emotional problems or learning disabilities?" [emotional/learning disability]; (c) "Would other people consider you to have any disabilities or long-term health problems, including physical health, emotional, or learning problems?" [other people consider to have a disability]; and (d) "Are you limited in any activities because of any disabilities or long-term health problems, including physical health, emotional, or learning problems?" [activity limitation]. Item 3, taken from the National Health Interview Survey on Disability, was included to capture individuals who do not consider themselves to have a disability, but may be considered by outside observers to have a disability. This approach may be particularly salient for adolescents who may be less likely to admit certain types of disability, such as learning disability, but may be considered by health professionals or others to have one. Respondents who affirm at least one of these four items are considered to have a disability. A validation analysis of the YQOL-DS was conducted in a previous study where screener assignment was compared with physician diagnosis. The YQOL-DS identified 98% of the adolescents with mobility disability, 62% of those with attention deficit/hyperactivity disorder, and 100% of those with a diagnosis of depression.
Health Condition Checklist. Respondents were instructed to mark "yes" next to any of the following conditions that were causing long-term limitations in their functioning or activities: allergies of any kind; asthma/breathing problems; vision/problem seeing; hearing problem; birth defect or other developmental problem (spina bifida, cerebral palsy, etc.); injury; mental retardation; behavioral or emotional problem; learning disability; epilepsy; arthritis or bone, joint, or muscle problem; or other condition.
YQOL-S (Topolski et al.,
2001). The YQOL-S was added to the TAP survey to assess
adolescent quality of life. This instrument assesses important areas of young
people's lives as previously defined by adolescents themselves, their parents,
and health care providers (Edwards et al.,
2002). The YQOL-S contains five perceptual and five
contextual items (Table
I). The perceptual items were combined into a total score and used
as the dependent variable in the analyses. Although the YQOL-S items were not
selected for their representativeness of the full YQOL-R, the Pearson
correlation between the total perceptual scores of the YQOL-R and the YQOL-S
is r = .86, suggesting that both instruments tap the same construct
(Topolski et al., 2001).
Because of this high degree of statistical association, and the common manner
in which the items were constructed, we consider the YQOL-S total perceptual
score to be a measure of perceived QoL.
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TAP (Small,
1995). The TAP was developed to help communities
identify, prevent, and ameliorate youth problems. It involves administering a
survey questionnaire to local teens about their concerns, behaviors, and
perceptions regarding school, work, family, friends, risk behaviors, and so
forth (Nelson, 1997). Three
depression-related items in the TAP survey were used to define depressive
symptoms in the analyses: (a) "How often would you say that you feel
very sad or depressed?" [Never/Once in a While/Most of the Time/All of
the Time]; (b) "Have you ever felt so sad or depressed that you thought
about committing suicide?" [No/Yes/Yes, More Than Once]; and (c)
"Have you ever attempted suicide?" [No/Yes/Yes, More Than Once].
For the purpose of this analysis, adolescents were considered to have
depressive symptoms if they responded Most of the Time or All of the Time to
the first question, or Yes, More Than Once to the second question, or Yes,
More Than Once to the third question.
Other Variables. A standard question for assessing self-rated health was included: "In general, how would you rate your health?" [poor/fair/good/very good/excellent]. Demographic data were also collected: gender, ethnicity, age, grade in school, and with whom they lived.
Data Management
Unreliable respondents were identified as those who endorsed all items in
the chronic condition checklist, a highly improbable response set, and thus
were excluded from the analysis (n = 27). Because of survey
formatting constraints, the perceptual items were reformatted from 11-point to
10-point scales. All items were transformed to T scores so that the scores
reflected the percentage based on a 100-point scale. Technical problems in
administration resulted in YQOL-S perceptual items being available from only
40% of the sample. Chi-square tests for students with and without complete
YQOL-S perceptual data did not reveal any significant differences by gender or
ethnicity between these groups. Complete data, however, were obtained from a
significantly higher proportion of 9th to 12th grade students (46%) than 7th
and 8th grade students (33%). Additionally, some students did not answer all
the TAP or demographic questions. Data in the analyses presented here are
based on 960 youths with complete information on the variables of
interest.
Statistical Analysis
Descriptive statistics were first computed on the sample to provide a
general description of the sample composition by ethnicity, gender, and type
of chronic conditions reported by the adolescents with disabilities. A
hierarchical general linear model approach was taken. The first hypothesis,
that adolescents with disabilities would report significantly lower perceived
QoL scores than adolescents without disabilities, was addressed with an
analysis of variance (ANOVA). To test the second hypothesis, an analysis of
covariance (ANCOVA) was conducted with depressive symptoms and self-rating
health entered as covariates first, and then with contextual variables
included in the model. To adjust for the experiment-wise error rate, we set
alpha at .01.
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Results |
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Demographics
Respondents were 47% female, 72.3% white, 8.4% Hispanic, 6.9% Native American, and 10% other ethnic groups (2.4% were missing). This is roughly equal to the intercensal estimate of the county where the survey was conducted: 86.9% white, 7.0% Hispanic, and 6.1% other, including 4% Native American (U.S. Census Bureau, 2000
). Chi-square tests revealed no significant differences in the
proportion of boys to girls or ethnic groups between 7th and 8th and 9th to
12th grade students (a common breakdown between junior and senior high
school). Fifty-seven percent of all respondents lived with both biological
parents.
Disability Status
Twenty-one percent of all respondents (23% of those with complete data)
screened with at least one element of disability, creating the disability
group for these analyses (n = 220). The elements defining disability
in descending order were physical disability (11.1%, n = 107), other
people considered them to have a disability (10.1%, n = 97),
emotional or learning disability (10.0%, n = 96), and limitation in
activity (8.3%, n = 80). One-hundred percent of the adolescents who
responded that other people considered them to have a disability also endorsed
one of the other three screener items indicating that they also considered
themselves to have a disability. Of those screening with any of the elements
of disability, 9.5% (n = 21) did not report any conditions, 21.4%
(n = 47) reported one condition, 51.9% (n = 114) reported
two to four conditions, 14.5% (n = 32) reported five to seven
conditions, and 2.8% (n = 6) reported eight to ten conditions. The
most common conditions reported by those in the disability group were
allergies (43.0%, n = 92), vision problems (36.6%, n = 78),
injury (35.3%, n = 77), asthma (33.2%, n = 71), and
musculoskeletal problems (31.6%, n = 68). The proportion of the
adolescents endorsing each condition by disability status is presented in
Table II.
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Quality of Life
The first hypothesis, that adolescents with disabilities would report a
lower QoL than adolescents without disabilities, was supported. The mean
YQOL-S total perceptual score for the disability group was 66.2, compared to a
mean of 79.1 for the no disability group. This difference was statistically
significant, F(1, 958) = 79.5, p = .00, and disability
status accounted for approximately 8% of the variation in QoL scores.
The second hypothesis, that self-rating of health, depressive symptoms, and
contextual variables would predict a significant proportion of the variance in
perceived QoL between adolescents with and without disabilities, was also
supported. With the covariates, self-rated health and depressive symptoms,
entered into the model with disability status, 30% of the variation in mean
YQOL-S total perceptual score between groups was explained. The proportion of
variation attributed to depressive symptoms was 15%, self-rated health 9%, and
disability status 1.5%. Perceptual mean YQOL-S scores and standard deviations
by disability, depressive symptoms, and self-rated health are given in
Table III. Age was included in
the model initially, as it has been shown to be associated with adolescent QoL
(Raphael et al., 1996;
Ravens-Sieberer & Bullinger,
1998), and gender was examined as well, but both variables were
excluded from the analysis because they were not significant predictors with
depressive symptoms and self-rated health in the equation.
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When the five YQOL-S contextual items were added to the final model with self-rated health and depressive symptoms, 38% of the observed variation in mean YQOL-S total perceptual scores between adolescents with and without disabilities was accounted for by the model, and the observed difference in mean YQOL-S total perceptual score was no longer significantly different between the groups. In this final model, the variance attributable to depressive symptoms and self-rated health was reduced to 6% each, and disability status accounted for less than 1%. The YQOL-S contextual items accounted for 13% of the variation, with the largest contributions coming from the items "conversation with an adult" (6%) and "serious family arguments" (3%).
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Discussion |
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In this study, 21% of students in grades 7 through 12 reported having a physical, emotional, or learning disability. This figure compares to data collected in 1994 using parent or guardian report, which indicated that 18% of U.S. youths younger than 18 years of age had a chronic physical, developmental, behavioral, or emotional condition and required health and related services of a type or amount beyond that required by children and adolescents generally (Newacheck & Halfon, 1998
). The disability screener used in this investigation
included adolescent self-report of disability as well as the report that
others considered them (the respondents) to have a disability, but special
needs for services were not included in the definition. Although there is
overlap among the many different screeners used for identifying adolescents
with disabilities, additional work is needed on the cognitive aspects of
adolescent self-report, as well as the comparability of prevalence estimates
based on different sources of report, different populations, and different
definitions of disability. Students with disabilities reported a lower QoL than those without. Controlling for hypothesized correlates of QoL (first, depressive symptoms and self-rating of health and, second, the set of contextual items) eliminated the statistically significant observed mean difference in QoL. In the absence of longitudinal data to establish causality, the findings from this study suggest areas that may lend themselves to interventions for improving the perceived QoL of adolescents with disabilities.
One key intervention for people with disabilities is the prevention of
secondary conditions, a major initiative of the Centers for Disease Control
and Prevention in its Healthy People campaign
(Healthy People 2010).
Secondary conditions often increase the severity of an individual's disability
and are considered highly preventable
(Marge, 1988;
Pope, 1992). Adolescents with
disabilities and depressive symptoms are a particular target population.
Depressive symptoms and self-rating of health can be viewed as indicators of
mental and physical well-being that may be consequent to the primary impairing
condition, and thus considered secondary conditions. Treatments for adolescent
depression also applicable to adolescents with disabilities include individual
psychotherapy, group or supportive therapy, and pharmacotherapy. Specialized
treatments for adolescents with disabilities are yet to be evaluated
(Shemesh, Bartell, & Newcorn,
2002).
Forty-six percent of adolescents with disabilities in this study reported
missing out on activities they wanted to do fairly or very often versus 16% of
those without disabilities. Increasing social participation of children and
adolescents with disabilities is a major goal of two federal laws, the
Individuals with Disabilities Education Act of 1997 and Section 504 of the
Rehabilitation Act of 1973. Neither law requires inclusion of students with
disabilities in regular classrooms, but both require that a significant effort
be made to find an inclusive placement. While there are no comprehensive or
national data available, two meta-analyses have confirmed a small to moderate
beneficial effect of inclusion education on the academic and social outcomes
of some types of special needs students
(Baker, Wang, & Walberg,
1994–1995; Carlberg &
Kavale, 1980).
Educational and social policies promoting inclusion may enhance the
opportunities for participation of adolescents with disabilities, but these
policies will be hard pressed to completely eliminate the stigma and negative
social reactions of others to disability and to people with disability
(Goffman, 1963;
Hahn, 1988). Nineteen percent
of adolescents with disabilities in our sample reported being made to feel
unwelcome by others their age because of their looks "fairly
often" or "very often," compared to 6% of adolescents
without disabilities. Strain that often occurs during interactions between
people with and without disabilities may derive more from misunderstandings of
one another's expectations than from negative intentions
(Makas, 1988), suggesting a
conflict of values, perspective, and identity
(Gill, 2001). These values and
perspectives are culturally based and, as such, resistant to change. However,
positive effects of inclusion on students without disabilities include greater
acceptance of human differences, more awareness of other youths' needs, less
discomfort with people with disabilities, less prejudice and fewer
stereotypes, and more responsiveness and helpfulness to other students
(Peck, Carlson, & Helmstetter,
1992).
Having important conversations with adults and serious family arguments
explained sizable proportions of the variance in QoL. These findings suggest
the importance of social connectedness for adolescents with disabilities,
regardless of their mainstreaming or inclusion. Social support, whether from
the family or significant others outside the home, can be an important
influence on the QoL of adolescents with disabilities
(Emond, Fortin, & Picard,
1998; Wallander & Varni,
1998).
There were three limitations of this study. First, the data collected were cross-sectional, making any assertions about causality provisional. Second, because of technical problems in survey administration, only a subset of the data from the YQOL-S perceptual items was available for analysis. Although chi-square tests showed that there were no significant differences between those with and without perceptual data by gender or ethnicity, there was a significant difference by grade, in that more 9th to 12th grade students than 7th and 8th students had complete data. A third limitation was that the sample in this study was from a largely rural area in the West, and its generalizability to adolescents with disabilities living in urban or suburban settings, or in rural areas in other parts of the country, is an open question.
These sample and design limitations do not affect the major assumption in this article that disparities in QoL reflect inequalities in opportunity because of health conditions and disability. Many determinants—individual, social, and cultural—affect perceived QoL, ranging from genetic predisposition and lifestyle to values and preferences. Equalizing opportunity may or may not be associated with elimination of the QoL disparities between adolescents with and without disabilities. Nonetheless, perceived QoL may be a barometer for opportunity and a useful social indicator in surveillance studies of adolescents.
In conclusion, depressive symptoms, self-perceived health status, and contextual variables are important correlates of QoL. Efforts to empower and include adolescents with disabilities in school, family, and community activities and working on ways to develop more peer support for adolescents with disabilities seem to be practical avenues of action that could make a positive difference in the lives of adolescents with disabilities.
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Acknowledgments |
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This research was supported in part by a cooperative agreement with the Centers for Disease Control and Prevention (#U48/CCU009654). We thank Frank Mondeaux and RMC Research Corporation of Portland, Oregon, for their data collection support, Fred Connell for early data analyses, and Susan Kinne for comments. These findings were presented in part at the 1999 American Public Health Association Meeting in Chicago, Illinois.
Received December 20, 2001; revision received April 23, 2002; revision received August 27, 2002; accepted September 4, 2002
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