Measures of health-related quality of life in PCOS women: a systematic review

Introduction

Polycystic ovary syndrome (PCOS) is the most common hormonal disturbance that, depending on the population studied and diagnostic criteria, affects up to 15%–20% of women at reproductive age.^1,2 The pathophysiology of this heterogeneous disease has not been clearly determined, but it is believed that it results from complex interactions between genetic, metabolic, and environmental factors.³ It is characterized by hyperandrogenism, ovulatory dysfunction, and polycystic ovarian morphology.⁴ PCOS is associated with adverse clinical complications including reproductive (menstrual irregularity and infertility),^2,3 metabolic (insulin resistance, diabetes, and cardiovascular risk),⁵ and psychological disabilities (anxiety and depression).⁶ All have been mentioned as factors responsible for the reduction of life quality.⁷

Health-related quality of life (HRQoL) is a multidimensional concept used to describe physical, emotional, and social aspects of particular diseases or their treatment.⁸ Chronic disorders such as PCOS may have major effects on the QoL that need to be precisely assessed.⁹

HRQoL can be assessed using both general and specific tools. General tools have generally no questions for specific conditions and diseases.¹⁰ Therefore, specific tools are generally preferable for each condition assessed, and PCOS is no exception. However, both tool types have been used for measuring QoL in the literature. The aims of this study were to identify 1) studies that have used standard instruments to measure HRQoL in women with PCOS; 2) general and specific instruments that have been used for assessing HRQoL in PCOS women; and 3) the effects of PCOS on different aspects of women’s QoL.

Methods

Search engines

The electronic databases searched included MEDLINE (January 1950–March 2017), ISI Web of Knowledge (January 1945–26 July 2017), Scopus (May 2000–January 2017), and Google Scholar (March 1996–January 2017). More data were collected from the reference lists and databases related to scientific conference, and we contacted the authors of the publications to know they had any other studies which had remained unpublished.

Search strategy

In the current systematic review article, we managed to find general and specific instruments that assessed QoL, and we further delineated the factors relevant to QoL in women suffering from PCOS using key words: (questionnaire OR scale OR inventory) AND (“Quality of life” OR “Health-related quality of life” OR “Patient-Reported Outcome”) AND (“Polycystic ovary syndrome” OR “PCOS”).

Inclusion criteria

The following criteria were used to decide which relevant resources to be included:

1. Document type: article;
2. Article type: original, review, and theoretical;
3. Language: English;
4. Study design: qualitative, quantitative, and mixed methods;
5. Species: humans;
6. Subject: health and medicine;
7. Documents’ subjects: QoL and its related factors in PCOS women; and
8. Questionnaire used for HRQoL: measured more than one dimension.

Data synthesis

Two authors were asked to go through the title and abstract of the studies obtained and to read the full texts finally to decide which studies had met the criteria to be included in the current systematic review. The variables of interest were the first author’s name, year, country, study design, and study results. The two authors negotiated any disagreements to reach consensus.

In order to assess HRQoL measures, the Consensus-based Standards for the Selection of Health Status Measurement Instruments checklist was employed. Specifically, we assessed measures for the following criteria: internal consistency, reliability, content validity, construct validity, and factor analysis.¹¹

Results

Statistics

In all, 4,269 citations were identified. After removing duplicates (n=486), the remaining 3,783 citations were assessed, and an additional 3,161 irrelevant records were excluded. Of the remaining 622 papers, 570 articles were also removed because they were not eligible, and finally 52 full-text articles were included in the analysis (Figure 1). Of these, 9 studies were qualitative and had focused upon the impact of PCOS on patients’ HRQoL.^12–20 The remaining 43 studies were quantitative which are summarized in Table 1. The frequency of studies on QoL in PCOS women from various countries (n=52) was as follows: USA (n=13), UK (n=9), Iran (n=7), Australia (n=3), Germany (n=5), Sweden (n=2), Italy (n=2), Canada (n=2), the Netherlands (n=2), and Brazil (n=2). In addition, there was one article from each of the following countries: Belgium, Turkey, Austria, Taiwan, and Greece. Table 2 displays and summarizes different components of QoL in PCOS women.

Figure 1 The flow diagram of the review.

Table 1 Quantitative studies that measured HRQoL of women with PCOS (n=43) Abbreviations: AES, Androgen Excess Society; BMI, body mass index; CHQ-CF87, Child Health Questionnaire-Child Form; FSH, follicle-stimulating hormone; GHQ-28, General Health Questionnaire-28; HRQoL, health-related quality of life; MPCOSQ, Modified PCOSQ; NIH, National Institutes of Health; PCOS, polycystic ovary syndrome; PCOSQ, Polycystic Ovary Syndrome Health-Related Quality of Life Questionnaire; PCOSQ-50, Polycystic Ovary Syndrome Questionnaire; QoL, quality of life; SCL-90-R, Symptom Checklist-90-Revised; SF-36, 36-Item Short Form Health Survey; WHOQOL-BREF, World Health Organization Quality-of-Life-BREF.

Table 2 Different components of quality of life in PCOS women Abbreviation: PCOS, polycystic ovary syndrome.

Instruments used

Various general and specific questionnaires were used to assess QoL in PCOS women. Overall, three specific and 5 general measures were used to assess the QoL in PCOS women. Of these, one general instrument (36-Item Short Form Health Survey [SF-36]) and one specific instrument (Polycystic Ovary Syndrome Health-Related Quality of Life Questionnaire [PCOSQ]) were used most frequently (Table 3). The generic questionnaires were the following: the SF-36 (n=17), Symptom Checklist-90-Revised (SCL-90-R; n=5), World Health Organization Quality-of-Life-BREF (WHOQOL-BREF; n=4), Child Health Questionnaire-Child Form (CHQ-CF87; n=3), and General Health Questionnaire-28 (n=1). The PCOS disease-specific instruments were the PCOSQ (n=20), the Modified PCOSQ (MPCOSQ; n=3), and the Polycystic Ovary Syndrome Questionnaire (PCOSQ-50; n=1). In the following sections, a short description for each of these is presented.

Table 3 Most general and specific instruments for assessing HRQoL in women with PCOS Abbreviations: CHQ-CF87, Child Health Questionnaire-Child Form; GHQ-28, General Health Questionnaire-28; HRQoL, health-related quality of life; MPCOSQ, Modified PCOSQ; PCOS, polycystic ovary syndrome; PCOSQ, Polycystic Ovary Syndrome Health-Related Quality of Life Questionnaire; PCOSQ-50, Polycystic Ovary Syndrome Questionnaire; SCL-90-R, Symptom Checklist-90-Revised; SF-36, 36-Item Short Form Health Survey; WHOQOL-BREF, World Health Organization Quality-of-Life-BREF.

PCOSQ/MPCOSQ

The PCOSQ is an instrument that was specifically designed and validated to evaluate HRQoL in PCOS.^21–23 In the first stage of the instrument development, 182 items were incorporated which belonged to 8 areas chosen as a result of running semi-structured interviews with 10 patients suffering from PCOS and an extensive literature review.²¹ In item reduction phase, 100 women with PCOS completed the instrument, and they identified the items of highest impact on their daily lives. By considering the factors influencing women and identifying the items that clinicians take as important, a factor analysis was performed, and the final questionnaire containing 26 items was provided. The PCOSQ contains the following domains: emotions (8 items), hirsutism (5 items), weight (5 items), infertility (4 items), and menstrual disorders (4 items). Each item can be answered by choosing from a Likert scale with 7 options from 1 (always) to 7 (never). Higher scores are indicative of better function. Studies that incorporated the PCOSQ revealed that women with PCOS had functioning impairments pertinent to some measured domains.^24–29 However, the relative degree of impairment caused by each domain varied in societies depending on the religious, racial, cultural, and social factors.²⁴ Excess body weight has been widely reported as an important concern to women with PCOS, especially in adolescents.^27,30–32 In two more studies that were carried out in Australia and Germany, body weight domain was found to have the strongest association with lower QoL.^33,34 The psychometric properties of PCOSQ are well documented in several studies indicating that it is a reliable and valid measure for assessing QoL in PCOS women.^22,23,25,35 However, the PCOSQ was modified by Barnard et al, and 4 questions were added to it in order to evaluate issues associated with acne.³³ Thus, the MPCOSQ includes 30 questions from 6 HRQoL domains: emotional disturbance (8 items), weight concerns (5 items), infertility (4 items), acne (4 items), menstrual symptoms and predictability (4 items), and hirsutism (5 items). Each item was rated on a 7-point Likert scale where higher scores represent better function. The psychometric properties of the MPCOSQ were promising.³³ Using this instrument, Bazarganipour et al in a cross-sectional study of 300 women with PCOS found that infertility and menstrual domains were the most affected areas of HRQoL.³⁶

PCOSQ-50

The PCOSQ-50 was specifically developed by Nasiri-Amiri et al for measuring QoL in PCOS women.³⁷ They used a mixed-method, sequential, exploratory design to define the components of health-related QoL questionnaire and assessed the psychometric properties of instrument. A rudimentary questionnaire composed of 147 items was designed drawing on the findings of a qualitative study that was carried out with 23 Iranian women who suffered from PCOS. Exploratory factor analysis helped to reduce the number of items from 147 to 50. The ultimate draft of the questionnaire incorporated 50 items representing 6 areas, namely emotion, obesity and menstrual disorders, fertility, sexual function, hirsutism, and coping. Each item could be answered by selecting from options on a 5-point Likert scale with higher scores meaning better condition. The analysis of the psychometric properties of the questionnaire revealed promising results.

SF-36

The SF-36 is one of the most acknowledged and most frequently used instruments to measure QoL. The SF-36 is used in all types of patients and has been validated in many countries. This instrument has been proved to be reliable and widely validated and has been employed in the assessment of HRQoL in various medical conditions. It consists of 36 items tapping into 8 subscales, namely physical functioning, role physical, bodily pain, general health, vitality, social functioning, role emotional, and mental health.³⁸ The scores on each domain range from 0 to 100 where the higher scores indicate better conditions. Several studies used the SF-36 in order to assess HRQoL in PCOS patients.^30,39–42 Findings have been rather consistent in revealing lower HRQoL in women suffering from PCOS. However, evidence suggests that poor QoL in these women might be due to obesity. In some studies, it has been shown that body mass index (BMI) was a predictor of physical functioning as measured by the SF-36.^43,44 Furthermore, by using a multivariable regression model, Panico et al in a recent study indicated that BMI is a predictor of physical functioning score.⁴⁴ Jones et al found that the role emotional was the poorest area of health, with mean scores of 50.4 on the SF-36 questionnaire, which had the greatest negative impact on HRQoL in women with PCOS.²³ In a study by Coffey et al, the psychological dimension was more affected than the physical dimension as measured by the SF-36.²⁵ Bazarganipour et al found that PCOS affected all domains in the SF-36, and psychological domains were most affected by PCOS.⁴⁵

SCL-90-R

The SCL-90 has also been widely used and extensively validated. It includes 90 items grouped into 10 main domains, namely somatization, obsessive–compulsive, interpersonal sensitivity, depression, anxiety, aggression, phobia, paranoid ideation, psychoticism, and sleep disorders.⁴⁶ Three global areas are measured, including the Global Severity Index, Positive Symptom Distress Index, and Positive Symptom Total. For each item related to a single domain, a score ranging from 0 (not at all) to 4 (very much) can be selected. Higher scores represent less favorable conditions.⁴⁴ Some studies targeting adult women suffering from PCOS have employed the SCL-90 to measure life quality.^{30,40,44,47,48} By using this tool, Elsenbruch et al showed that emotional distress and obesity in PCOS women are associated with significant decrease in HRQoL.⁴⁰

WHOQOL-BREF

WHOQOL-BREF instrument is comprised of 26 items, which measure broad domains consisting of physical health, psychological health, social relationships, and environment. The WHOQOL-BREF is a shorter version of the original instrument and can be used for assessing the QoL in different cultures and populations. In a study on 146 women having PCOS and 170 controls who were assessed by the WHOQOL-BREF questionnaire, it was discovered that the hirsutism scores were a major predictor of psychological distress and showed correlation with the emotion domain.⁴⁹ In Benetti-Pinto et al’s study, the BMI was inversely correlated to the QoL in women suffering from PCOS, mainly with the physical, psychological, and environmental aspects of QoL.⁵⁰

CHQ-CF87

The CHQ-CF87 is a self-report questionnaire that was developed and validated at the Health Institute of the New England Medical Center in Boston.⁵¹ It has been used to measure HRQoL in general populations of youth. It consists of 12 summated scales and is designed to measure both the physical and psychosocial HRQoL of adolescents. The items on the CHQ-CF87 are scored from 0 to 100 except for the change in health in the last year, and the items on family cohesion subscales are scored from 1 to 5 as single-item measures. A higher score on each subscale indicates better QoL in a specific area or health improvement in the last year.

Trent et al in their study used the CHQ-CF87 and revealed that HRQoL scores of adolescents suffering from PCOS were significantly lower in 4 areas of physical functioning, general health perceptions, behavior, and family activities as measured by the questionnaire.⁵² These authors also carried out another study in this area and evaluated the influence of BMI on QoL disturbances in adolescent patients. PCOS adolescents had higher BMI than those of the controls and a significantly lower HRQoL. Similarly, PCOS girls scored lower on the general health perceptions, physical functioning, family activities, and the general behavior subscales of CHQ-CF87.⁵³

Discussion

The studies identified in this review have shown that PCOS is a major cause of psychological morbidity and has a negative impact on women’s HRQoL. This feature has also been demonstrated in some qualitative studies.^13,14,16,19 In all the studies reviewed, different aspects of the QoL in PCOS women were evaluated including physical, psychological, social, sexual as well as medical ones.

The impact of PCOS on the HRQoL may be more specifically seen in the perception of values and culture;²⁴ therefore, the major contributing factors of reductions of life quality in PCOS were discovered to be different in a variety of population. However, physical aspects of QoL may be best predicted by obesity and hirsutism.^29,49 Excess body weight has been widely reported as an important concern to women with PCOS, especially in adolescents.^27,30–32 Obesity is believed to be a primary source for poor HRQoL and contributes substantially to negative psychological symptoms in women with PCOS.⁵⁴ The findings of an Italian study that was recently performed yielded a significant aggravation of HRQoL in PCOS patients with obesity compared with controls.⁴⁴

Hirsutism can be found in nearly 70% of women suffering from PCOS,² and patients take it as one of the most annoying aspects of PCOS.^29,55 Women suffering from PCOS who experience hirsutism have often complained that they feel “unfeminine.”^12,30,56,57

The comparison of psychological well-beings between women suffering from PCOS and control groups showed an increased risk for emotional distress in those with PCOS.⁶ Recent meta-analysis in PCOS women has yielded a raise in the prevalence of both depressive and anxiety symptoms in women suffering from PCOS in comparison with controls.⁵⁸ Loss of femininity, body image concerns, and coping with these conditions may all contribute to poorer mental health outcomes.⁵⁹

Moreover, changes in body dimensions and physical beauty as well as imbalance of sexual hormones could lead to reduction in QoL and sexual performance. Psychological distress from long-term health risks, infertility, and changes in appearance (obesity, acne, and hirsutism) can influence sexual function among PCOS women.^50,60 These women often complain that they feel less attractive and being less sexually satisfied in comparison with non-PCOS women.³⁰

PCOS can also affect patients’ QoL socially. Based on the results of qualitative studies, other factors that affected QoL were the reduction of interpersonal and social relationships.^61,62 Accordingly, Ekbäck et al in their qualitative study showed that hirsutism causes severe psychological burden and negatively affected patients’ HRQoL and social interactions.¹⁴ A few studies explored the impact of treatment on HRQoL. In 2009, Rofey et al showed that an enhanced cognitive behavioral therapy was practical and encouraging for adolescents suffering from PCOS.⁴¹

One of the major findings of the current research was the high frequency of application of specific and general instruments such as PCOSQ and SF-36. In our review, 24 studies had used specific tools for this purpose, and general questionnaires had been applied in other studies. PCOS affects women both psychologically and physically according to the SF-36. A recent meta-analysis showed that women with PCOS score lower in each dimension of the SF-36, mostly in the “Role Emotional” subscale.⁷ General tools are designed to measure HRQoL in a wide range of diseases and therefore may not be sensitive enough to be used in specific conditions.⁶³ However, specific tools such as PCOSQ include some certain questions for these conditions. Obesity, hirsutism, irregular menses, and infertility are different aspects of PCOS exerting negative impacts on HRQoL that would not easily be detected by employing only a generic questionnaire. By using PCOSQ, it was demonstrated that clinical symptoms of PCOS, especially excess body weight^{22,23,25–27} and hirsutism,²⁹ could compromise women’s QoL. Ideally, employing both general and specific disease instruments in measuring HRQoL is recommended in order to make comparisons possible at a generic level and especially in the case of the disease under focus.⁶⁴

Conclusion

PCOS symptoms can result in remarkable worsening of life quality and may be highly stressful, adversely affecting psychological, social well-being and sexuality. This study revealed that the specific questionnaire PCOSQ and the SF-36 were mainly used for measuring life quality in women having PCOS. Perhaps using either a specific questionnaire solely or a specific questionnaire in conjunction with a generic measure would be more appropriate when measuring QoL in PCOS women. However, both questionnaires showed that they are able to capture different aspects of QoL in PCOS women and to identify areas that can help to improve QoL in these women.

Acknowledgments

We would like to thank the Tehran University’s vice-chancellor of education and vice-chancellor of research and technology for their financial support to carry out the study. This article is a part of the PhD thesis of Bita Feridoni supported by Tehran University of Medical Sciences (the ethics code: IR.TUMS.FNM.REC.1395.781).

Disclosure

The authors report no conflicts of interest in this work.

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