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Quality of Life in Adolescent Girls With Polycystic Ovary Syndrome
Maria E. Trent, MD, MPH;
Michael Rich, MD, MPH;
S. Bryn Austin, ScD;
Catherine M. Gordon, MD, MSc
Arch Pediatr Adolesc Med. 2002;156:556-560.
ABSTRACT
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Objectives To examine health-related quality of life (HRQL) in adolescents with
polycystic ovary syndrome (PCOS), compared with healthy adolescents, and to
determine whether clinically observed or self-perceived severity of illness
affects their HRQL.
Design and Setting Cross-sectional study of female adolescents conducted at an urban, hospital-based
adolescent medicine clinical practice.
Participants Ninety-seven adolescent patients with PCOS and 186 healthy patients
who were seen for care between October 15, 1999, and March 2, 2001.
Main Outcome Measures Health-related quality-of-life scores as determined by the Child Health
Questionnaire–Child Self-Report Form.
Results Adolescents with PCOS scored lower on subscales measuring general health
perceptions, physical functioning, general behavior, and limitations in family
activities because of illness. Patients scored higher on the change in health
in the last year subscale, and most had been diagnosed and initiated treatment
for PCOS in the last year. Patients who had higher self-perceived severity
of illness also scored lower on the general health perceptions subscale, but
clinical severity was not associated with differences in HRQL.
Conclusions Adolescents with PCOS experience lower HRQL compared with healthy adolescents.
Polycystic ovary syndrome and perceived severity of illness negatively affect
HRQL in adolescents. This study suggests a need to develop interventions to
reduce the distress that patients with PCOS may face as adolescents and young
adults.
INTRODUCTION
POLYCYSTIC OVARY syndrome (PCOS) occurs in 5% to 10% of women, making
it one of the most common endocrine disorders.1-2
The syndrome represents a range of clinical presentations, with variable degrees
of severity and physical findings. Common clinical findings of the disorder
include irregular menstrual cycles, hirsutism, acne, acanthosis nigricans,
obesity, and infertility.3
Polycystic ovary syndrome has a significant effect on adult women, resulting
in diminished quality of life, altered feminine identity, and dysfunction
in the family and work environment.4-6
Adolescent patients with PCOS, who are at the height of identity development
and awareness of body image, may have a more significant disturbance in quality
of life. However, no research to date, to our knowledge, has examined the
relationship of PCOS to health-related quality of life (HRQL) in adolescent
girls. Anecdotal evidence from clinical practice with this age group suggests
that the disorder can disrupt their quality of life. The aims of this study
were to examine HRQL in adolescents with PCOS, compared with healthy adolescents,
and to determine whether clinically assessed or self-perceived severity of
illness affects HRQL.
PARTICIPANTS AND METHODS
Participants were recruited from an urban, hospital-based adolescent
medicine practice providing primary and specialty health care, including reproductive
endocrinology and pediatric and adolescent gynecology. This cross-sectional
study used a confidential, 30-minute HRQL instrument and a general health
history questionnaire, administered at the end of a clinic visit. Data collection
occurred between October 15, 1999, and March 2, 2001. Each adolescent provided
informed consent to participate in the study. The Committee on Clinical Investigation
at Children's Hospital Boston approved the study protocol. Parental consent
was waived because of the confidential nature of many of the visits. Participants
were mailed $10 in compensation for their time.
Inclusion criteria for PCOS participants were age 13 to 22 years, with
a diagnosis of PCOS as exemplified by hyperandrogenism (clinical or laboratory
diagnosis) and menstrual irregularity.7 Adolescents
with PCOS were recruited from the primary care practice and referral base.
Healthy female adolescents presenting for routine or sports physicals, routine
gynecologic care, contraceptive management, or follow-up of a minor medical
issue were recruited as comparisons, if they were age 13 to 22 years and did
not meet the exclusion criteria outlined in the next paragraph. Although most
healthy participants were from the primary care practice, young women referred
for routine gynecologic care and contraception were also recruited for the
study.
Exclusion criteria for all participants included: (1) a diagnosis of
hyperprolactinemia, nonclassical 21-hydroxylase deficiency, or evidence of
an androgen-secreting tumor or intersex state; (2) language or cognitive difficulties
preventing reliable completion of the questionnaire; or (3) a chronic or acute
illness unrelated to PCOS that could potentially affect the participant's
quality of life. Patients who were pregnant or were having a medical or mental
health crisis at the time of the visit were also excluded from participation.
Demographic factors, such as race/ethnicity, insurance status as a proxy for
socioeconomic status, and age, were considered to ensure that participants
in both groups were representative of our adolescent medicine practice. Blocking
was used to oversample certain race/ethnicity groups and to increase statistical
power to compare across race/ethnicity groups.
DEMOGRAPHIC VARIABLES
Data were collected on demographic variables, including age, grade in
school, and self-defined race/ethnicity. Insurance status was obtained from
the computerized scheduling system after patients had been recruited for the
study. Clinical variables obtained from the health care provider at the time
of the visit included Ferriman-Gallwey8 (FG)
score as a measure of hirsutism, global acne (GA) score,9
weight, and height. Body mass index (BMI) was calculated as weight in kilograms
divided by the square of height in meters.10
Pretreatment hormonal values for dehydroepiandrosterone sulfate and free and
total testosterone were collected on PCOS participants. As a part of the general
health–history questionnaire, information was collected on timing and
irregularity of menstrual cycles; perceived acne, body hair, and weight status;
medications and procedures used; and behavior risks.
HRQL MEASURES
The Child Health Questionnaire–Child Self-Report Form (CHQ-CF87)
is a self-report questionnaire that was developed and validated at the Health
Institute of the New England Medical Center, Boston.11
The tool consists of 12 summated subscales and is designed to measure the
physical and psychosocial health of adolescents. The subscales include the
following summary measures: (1) change in health in the last year, (2) role/social
emotional, (3) role/social behavioral, (4) bodily pain, (5) behavior, (6)
mental health, (7) self-esteem, (8) general health perceptions, (9) family
activities, (10) family cohesion, (11) physical functioning, and (12) role/social
physical.
The items on the CHQ-CF87 are scored from 0 to 100, except for the change
in health in the last year and family cohesion variables, which are scored
from 1 to 5. Higher scores on these variables indicate health improvement
in the last year and better family cohesion, respectively. Higher scores on
all other variables indicate better quality of life. This instrument has a
record of reliability and validity for evaluating aspects of health that are
pertinent across age, gender, health condition, and socioeconomic status in
adolescents.12
SEVERITY OF ILLNESS
Clinical severity of illness was a composite of the FG and GA scores
and BMI. An FG score of 8 or higher,8 a GA
score greater than 0,9 and a BMI of 30 or higher13-14 were used as diagnostic criteria
for the clinical factors. Each participant was given 1 point for each clinical
factor present and a score of 0 to 3 based on the presence or absence of each
of the clinical factors, creating mild (0-1 point), moderate (2 points), and
severe (3 points) categories. All patients had a history of menstrual irregularity,
as it was one of the inclusion criteria for this arm of the study.
Scores for perceived severity of illness were generated from the participants'
answers to the following questions: (1) Do you have acne? (2) How much body
hair do you think you have compared with other girls your age (much less,
slightly less, no more, slightly more, or much more)? and (3) How do you think
of yourself with regard to weight (very underweight, slightly underweight,
about the right weight, slightly overweight, very overweight)? A yes response
to the acne question, "slightly overweight" or "very overweight" responses
about weight, and "slightly more" or "much more" responses to the body hair
questions were considered affirmative. Each participant was given 1 point
for each factor perceived to be present and a score of 0 to 3 based on the
presence or absence of each of these factors, creating mild (0-1 point), moderate
(2 points), and severe (3 points) categories.
DATA ANALYSIS
Syntax and technical assistance for tabulating CHQ-CF87 scores were
obtained from the author of the instrument. Linear regression analysis was
used to determine the mean differences for each quality-of-life subscale and
to assess disease severity (clinically observed or self-perceived) as a primary
predictor of HRQL. Using the change in estimate method, the roles of race/ethnicity,
age, and insurance status were evaluated as potential confounders or effect
modifiers, as these factors are beyond the control of the adolescent and theoretically
may affect quality of life.
RESULTS
DESCRIPTION OF THE SAMPLE
Four hundred thirteen adolescents who had scheduled medical appointments
were asked if they would be willing to participate in the study. The refusal
rate among all girls asked to participate in the study was 7.3% (n = 8) among
the PCOS group and 26.4% (n = 69) among the healthy comparison group. The
most common reason for refusal was lack of time.
Two hundred ninety-three patients were recruited, of whom 283 met all
eligibility criteria for inclusion in the study. The mean ± SD age
of all participants was 16.9 ± 2.3 years. There were no significant
differences between the PCOS and healthy groups with regard to race/ethnicity,
age, or insurance status (Table 1).
One hundred one patients with PCOS were enrolled in the study, and 4 were
later excluded because they did not meet all eligibility criteria. One hundred
ninety-two healthy patients were enrolled in the study, and 6 were later excluded
because they did not meet all eligibility criteria.
CLINICAL VARIABLES
The mean BMI and FG and GA scrores were higher for the patient group
(Table 2). The mean age at diagnosis
of PCOS was 15.1 years, and 51 (60%) of the 85 patients had been diagnosed
within the last year. Eighty-three percent (70/84) of the patients had elevated
free testosterone, 47% (42/89) had elevated total testosterone, and 29% (24/84)
had elevated dehydroepiandrosterone sulfate levels before initiation of treatment.
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Table 2. Differences in Clinical Variables and Age Between Patients
With Polycystic Ovary Syndrome (PCOS) and Healthy Peers*
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PCOS STATUS AS A PREDICTOR OF QUALITY OF LIFE
Compared with healthy adolescents, participants with PCOS scored 0.3
points higher on the change in health in the last year subscale, 7.7 points
lower on the general health perceptions subscale, 2.9 points lower on the
behavior subscale, 4.1 points lower on the physical functioning subscale,
and 6.0 points lower on the family activities subscale. The patients showed
a trend toward lower mean scores on the mental health subscale, but this difference
was marginally significant (Table 3).
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Table 3. Mean Quality-of-Life Scores on Child Health Questionnaire–Child
Form 87 and Differences as Determined by Linear Regression Models*
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SEVERITY OF ILLNESS
The mean FG and GA scores, BMI, and free testosterone among the PCOS
group increased in a stepwise fashion with mild, moderate, and severe PCOS,
supporting the rationale of the summary measure for clinical severity (Figure 1). There were, however, no significant
differences in HRQL outcomes among patients in the mild, moderate, and severe
clinical severity categories.
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Stepwise increase in mean body mass index (BMI), Ferriman-Gallwey
(FG) score, global acne (GA) score, and free testosterone (FT) (in picograms
per milliliter) for mild, moderate, and severe clinical severity levels among
patients with polycystic ovary syndrome.
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Patient scores for perceived severity of PCOS ranged only in the mild
to moderate categories. Controlling for race/ethnicity, patients with perceived
moderate severity scored 7.9 points lower on general health perceptions than
those with mild disease (ß, 7.9; SE ß, 3.6; P<.03).
COMMENT
This study demonstrates that adolescents with PCOS had lower HRQL scores
on the CHQ-CF87 than healthy comparisons in the areas of general health perceptions,
physical functioning, behavior, and family activities. Most participants in
this study perceived their illness to be mild, despite the finding that 69%
(67/97) had moderate (n = 35) to severe (n = 32) clinical severity scores.
In terms of patients' ability to cope with PCOS, it was encouraging that they
perceived their severity of illness as mild or moderate. Compared with the
clinical assessment, their perception of illness severity correlated more
directly with their quality of life with PCOS.
The absence of a direct relationship between clinical severity of illness
and quality of life may be explained by several reasons: (1) clinical severity
of illness may not be associated with quality of life, (2) there may be an
unmeasured confounder, or (3) there was not enough power to detect a difference
between groups.
These results must be interpreted in light of acknowledged limitations.
Not every patient who was eligible participated in the study, and there were
different rates of participation between the PCOS (93%) and healthy (74%)
samples. It is unknown whether patients who did not return for their appointments
or who were not asked to participate by health care providers were comparable
to those who were enrolled. It is possible that participants who had PCOS
but did not have menstrual abnormality significant enough to merit clinical
evaluation may have been included in the healthy group. However, this would
bias the study results toward the null hypothesis. Finally, this is a cross-sectional
study, and causality cannot be inferred from the associations found.
Health-related quality of life is a critical outcome measure for any
patient, but it may be particularly important for adolescents and young adults
with chronic conditions who must cope with and manage their condition for
extended periods. It has been used as a key outcome measure in pediatric studies
of chronic renal disease,12 asthma,15 allergic rhinitis,16
cystic fibrosis,17 and childhood cancers.18-19 Although clinical criteria measure
the magnitude of physiologic dysfunction, they do not capture the physical,
emotional, and social effects on the lives of those who live with the disease.
This is supported by our finding that the patient's perception rather than
the clinician's assessment of PCOS is more relevant to HRQL. Clinicians who
serve adolescents and young adults should know that factors other than treatment
of disease affect HRQL. As a result, HRQL is an increasingly important outcome
measure in child, adolescent, and young adult health.
The social predicaments and developmental tasks that all adolescents
face may mediate a patient's ability to cope with PCOS, as adolescent girls
look to their peers for validation.20 For example,
although a girl may have acne secondary to her PCOS, she may not perceive
herself as being different from her peers, given that acne is common in adolescence.21 Obesity is also increasingly common among adolescent
girls without PCOS.13-14 Individual
factors or a combination of factors, including the milieu of adolescence,
may therefore mediate the quality-of-life experience of patients with PCOS
in this age group.
CONCLUSIONS
This study supports the hypothesis that adolescents with PCOS experience
lower quality of life compared with healthy adolescents. Most important, it
is the patient's perceived rather than the clinician's assessed severity of
illness that negatively affects quality of life. This study suggests potential
areas of investigation and intervention in the field of adolescent PCOS. Patients
noted a greater change in their overall health in the last year compared with
their healthy peers, which suggests a positive role of medical intervention
in their lives. Health services research that examines the timing of diagnosis
and initiation of treatment, variability in treatment approaches, and patient–health
care provider communication may also be instrumental in understanding the
long-term health and quality-of-life outcomes in adolescents with PCOS. This
study also suggests the need to develop supportive interventions that address
quality-of-life issues to reduce the distress that patients with PCOS may
face as adolescents and young adults.
| What This Study Adds
Polycystic ovary syndrome has considerable effects on the lives of adult
women; however, to our knowledge, research has not previously investigated
the potential effects on the health-related quality of life of adolescents
with this illness. This study examined health-related quality of life in patients
in this age group with PCOS compared with healthy peers. It demonstrates that
PCOS and higher self-perceived severity of illness negatively affect quality
of life in these patients. This study also provides direction toward potential
areas of investigation and intervention in the field of adolescent PCOS, aimed
at reduction of the significant quality-of-life disturbance these patients
may face as adolescents and young adults.
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AUTHOR INFORMATION
Accepted for publication February 7, 2002.
This study was supported by project 6T71MC00009-09S1R0 from the Maternal
and Child Health Bureau (Title V, Social Security Act), Health Resources and
Services Administration, US Department of Health and Human Services, Rockville,
Md, and by an unrestricted educational grant from Aventis Pharmaceuticals,
Inc, Bridgewater, NJ.
We thank the members of the Divisions of Adolescent/Young Adult Medicine
and Gynecology at Children's Hospital Boston for their role in patient recruitment.
In addition, we thank S. Jean Emans, MD, for her input on this project, Jeanne
Landgraf, MA, for her guidance in analyzing the CHQ-CF87, Kelly Becker, BA,
for her role as research assistant, and Wendy Yang, BS, for SPSS technical
expertise.
Corresponding author and reprints: Maria E. Trent, MD, MPH, Division
of Pediatrics and Adolescent Medicine, Department of Pediatrics, The Johns
Hopkins University School of Medicine, Park 307, 600 N Wolfe St, Baltimore,
MD 21287 (e-mail: mtrent2{at}jhmi.edu).
From the Division of General Pediatrics and Adolescent Medicine, Department
of Pediatrics, The Johns Hopkins University School of Medicine, Baltimore,
Md (Dr Trent); and Division of Adolescent/Young Adult Medicine, Children's
Hospital Boston, Harvard Medical School, Boston, Mass (Drs Rich, Austin, and
Gordon).
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