Health‐Related Quality of Life Among Adolescents with Polycystic Ovary Syndrome

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Health-Related Quality of Life Among Adolescents with Polycystic Ovary Syndrome Georgina L. Jones, Jennie M. Hall, Hany L. Lashen, Adam H. Balen, and William L. Ledger

Correspondence Georgina L. Jones, MA, DPhil, Health Services Research Section, ScHARR, Regent Court, 30, Regent Street, Sheffield, S1 4DA [email protected] Keywords polycystic ovary syndrome adolescents health-related quality of life qualitative study obesity

ABSTRACT Objective: To explore health-related quality of life (HRQoL) among adolescents with polycystic ovary syndrome (PCOS). Design: Qualitative study. Setting: Two out-patient gynecology clinics in Yorkshire, England. Participants: Fifteen young women diagnosed with PCOS were recruited. Methods: Semistructured interviews were carried out, transcribed verbatim, and subjected to thematic analysis using NVivo software version 2.0. Results: A few areas were identified where PCOS had a positive impact upon HRQoL (e.g., improved relationships). However, overall the condition had a negative impact upon HRQoL. Weight problems (in particular the difficulties associated with managing/maintaining weight) and body perceptions appeared to be the most significant contributors to a reduced HRQoL. Menstrual dysfunction, fertility issues, and hirsutism also had adverse affects on emotional well-being, self-perception (including poor body image, self-consciousness, & low self-esteem), social functioning, and sexual behavior. A number of participants described receiving insufficient information from health care professionals (HCPs) and negative experiences in relation to the diagnosis and management of their condition. Conclusion: Overall, PCOS has a negative impact on the HR QoL of adolescent girls with the condition. Emotional and social functioning appeared to be most affected rather than areas of physical functioning. Future research is needed to identify ways to improve communication between adolescents with PCOS and their HCPs, particularly around the diagnosis and potential for infertility. Finally, HCPs need to be more aware of the emotional impact of PCOS upon adolescents’ HRQoL and of the potential for poor sexual health through risk-taking behaviors that may occur due to the potential loss of fertility.

JOGNN, 40, 577-588; 2011. DOI: 10.1111/j.1552-6909.2011.01279.x Accepted June 2011

Georgina L. Jones, MA, DPhil, is a senior lecturer in social science, University of Sheffield, Sheffield, UK. Jennie M. Hall, MBChB, BMedSci (Hons), is a foundation year 2 doctor in the School of Medicine & Biomedical Sciences, University of Sheffield, Sheffield, UK.

(Continued)

olycystic ovary syndrome (PCOS) is the most common endocrine disorder (Hart et al., 2004) affecting between 4% and 25% of women (Balen & Michelmore, 2002; Homberg, 2002). The two main sets of symptoms typically associated with PCOS include disruption to fertility resulting from irregular menses (oligomenorrhoea) or absence of menstruation (anovulation) and clinical signs of hyperandrogenism (including hirsutism, acne, and alopecia). There may be secondary metabolic problems related to obesity and insulin resistance (Fratantonio, Vicari, Pafumi, & Calogero, 2005).

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with a specific disease or its treatment (Fayers & Machin, 2000). Historically, there have been a paucity of studies addressing this issue in women with PCOS (Jones, Kennedy, & Jenkinson, 2002). More recently, however, Jones, Hall, Ledger, and Balen, (2008) reviewed 18 studies and concluded that the symptoms of PCOS have a highly detrimental effect on HRQoL. Only two qualitative studies addressed the impact of PCOS upon a woman’s daily well-being and functioning (Kitzinger & Willmott, 2002; Snyder, 2006), and these showed that adult women with PCOS are challenged in their perceptions of their femininity. Kitzinger and Willmott (2002) identified three core themes of hair, menstruation, and infertility as having the most significant effect on HRQoL, with women describing themselves as different, abnormal, or freaks.

The authors report no conflict of interest or relevant financial relationships.

Health-related quality of life (HRQoL) is a multidimensional concept that encompasses the physical, emotional, and social aspects associated

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 C 2011 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses

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Health-related Quality of Life Among Adolescents with Polycystic Ovary Syndrome

Polycystic ovary syndrome occurs in approximately 4% to 25% of women of reproductive age and may have a negative effect on quality of life.

Although the symptoms of PCOS typically begin around menarche (Vuguin, 2010), no qualitative studies and only four quantitative studies (HarrisGlocker, Davidson, Kochman, Guzick, & Hoeger, 2010; Trent, Austin, Rich, & Gordon, 2005; Trent, Rich, Austin, & Gordon, 2002; Trent, Rich, Austin, & Gordon, 2003) have focused on the impact of PCOS on the HRQoL of adolescents with the condition. However, three of these studies present data from the same cohort (Trent et al., 2002, 2003, 2005), and Harris-Glocker et al. (2009) were narrowly focused on assessing the impact of metformin versus placebo in a lifestyle modification program combined with oral contraceptives in obese adolescents with PCOS. The results of these quantitative studies indicate that multiple areas of HRQoL are affected by PCOS, but weight and infertility issues appear most problematic. Trent et al. (2002) carried out a cross sectional study to examine HRQoL in 97 American adolescents with PCOS compared to healthy adolescents. The results of the Child Health Questionnaire (CHQ-CF87) indicated that HRQoL in the domains of general health perception, behavior, physical function, and family activities were significantly lower in the PCOS adolescents than the healthy adolescents (p < 0.05). Hany L. Lashen, MB, BCh, MD, FRCOG, is a clinical senior lecturer in obstetrics and gynaecology in the Academic Unit of Reproductive and Developmental Medicine, University of Sheffield, Sheffield, UK. Adam H. Balen, MB, BS, MD, DSc, FRCOG, is a professor of reproductive medicine and surgery at Leeds General Infirmary, Leeds, UK. William L. Ledger, MA, DPhil, BM, BCh, MRCOG, FRCOG, is a professor of obstetrics and gynaecology and head of the department, University of Sheffield Academic Unit of Reproductive and Developmental Medicine, Sheffield, UK.

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Later analyses on the same cohorts, which focused specifically on fertility concerns and sexual behaviour (Trent et al., 2003) and weight issues (Trent et al., 2005), also found significant differences between these groups. Adolescents with PCOS were more than 3 times more likely than their healthy age matched counterparts to be concerned about their future ability to conceive. Those PCOS participants with fertility concerns scored significantly lower on 10 of the 12 domains of the generic CHQ-CF87 (the exceptions being physical functioning and change in health). They also observed that an elevated body mass index (BMI) contributed significantly to the differences in HRQoL observed between the two groups, particularly on the domains of general health perceptions, physical functioning, and family activities (Trent et al., 2005). Despite these findings, there has previously been neither research of adolescents with PCOS in the

United Kingdom nor any qualitative research to investigate more deeply the issues reported from the quantitative studies. The gap in this knowledge base is important. The existing literature shows that the symptoms of PCOS are profoundly negative in this age group, and in fact recent research has explicitly called for qualitative work in this area (Snyder, 2006). Consequently, this study addresses that gap by qualitatively exploring the HRQoL of adolescents with PCOS. In particular, our aim was to explore the various effects PCOS has had on the physical, social, and psychological/emotional aspects of the lives of adolescents.

Methods Ethics committee approval for this research was obtained from South Sheffield and Leeds West. Forty adolescent patients diagnosed with PCOS (as per 2003 Rotterdam consensus workshop) (The Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group, 2004) who attended the out-patient gynecology clinics in Sheffield and Leeds were approached by their clinician during their routine clinical consultation to participate. Adolescents who were interested in participating were given the opportunity to discuss the study in more detail with two of the researchers and given the patient information sheet and consent form to take home. Only those adolescents who returned a signed consent form were contacted by telephone to arrange a convenient time for the interview by one of the researchers. Exclusion criteria for this study included the presence of a coexisting illness that may have a contributory effect on HRQoL; inability to read and speak English, because this study was conducted in English; and conditions similar in presentation to PCOS, such as congenital adrenal hyperplasia. Demographic details, BMI, presenting symptoms of PCOS, concentrations of biochemical indicators of hyperandrogenaemia (testosterone, luteinizing hormone/follicle stimulating hormone, and sex hormone-binding globulin), evidence of polycystic ovaries (PCO) on ultrasound, ethnicity, and details of the general practitioner (GP) were recorded. In accordance with current practice, obesity was defined as BMI > 29.5 kg/m2 (World Health Organization [WHO], 2000). Adolescence was defined here as ages inclusive of 17 years to 21 years. Ethical constraints forbid the recruitment of anyone younger than age 17.

JOGNN, 40, 577-588; 2011. DOI: 10.1111/j.1552-6909.2011.01279.x

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Jones, G. L., Hall, J. M., Lashen, H. L., Balen, A. H. and Ledger, W. L.

The interviews were conducted with just the participant and the interviewee in a quiet meeting room within the university unit of one of the Yorkshire hospitals. Semistructured interviews were conducted. These enabled participants to describe their personal experiences and feelings in their own words yet enabled HR QoL issues that had been identified from the existing literature to be covered (Britten, 1995). Each interview started with the same question: “We’re trying to find out what it’s been like for you living with PCOS. So what does having PCOS mean to you?” The questions applied to the participants were primarily open ended, although preprepared prompts and more specific follow-up questions were used to ensure breadth and depth in the responses obtained. For each subsequent interview, further prompt questions were elicited from themes identified from the transcripts. A summary of the semistructured interview schedule is shown in Table 1. All the interviews were audio-taped and transcribed verbatim. Thematic analysis was used to analyze the data. This widely used generic approach to qualitative data analysis enables data sources to be analyzed in terms of the principal themes (Braun & Clarke, 2006). Marshall and Rossman (1999) reported six key stages in the thematic analysis of qualitative data which were also followed in this study (a) Organize/familarize, (b) Generate categories or themes, (c) Code the data, (d) Test emergent understandings of the data, (e) Search for alternative explanations of the data, and (f) Write up the data analysis. To assist with the coding of the data and identification of emergent themes, NVivo software was used. Using NVivo involved the following steps: importing the paper-based, interview transcript files onto the software and working through the first interview to identify and code themes within each of the 14 preidentified a priori categories present in the interview schedule. In NVivo these themes are called nodes. Each subsequent interview was then coded in the same way, adding new nodes or branching off existing nodes as required. As necessary, interviews were revisited and recoded to take account of the new nodes emerging. Once coding was completed, the data in each of the 14 categories were reviewed. The nodes were refined or subdivided where appropriate and then the main themes found were summarized. Conclusions were induced from the most prominent

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themes and presented in a rational way for description. To minimize potential interviewer bias and to confirm that the nodes were an accurate reflection of the emerging HRQoL areas and interpretation of interviewee dialogue, a member of the research team reviewed a number of the transcripts.

Results From the 40 adolescent women approached to participate in the study, 15 (37.5%) provided informed consent and attended an interview. Theoretical saturation of the data was reached after 15 interviews, with no new data emerging. The interviews ranged between 55 minutes and 2 hours and 30 minutes (mean = 1 hour and 25 minutes) in duration. The mean age of the sample was 20.1 years (range: 17–21 years). Seven of the adolescents were single, whereas eight were in long-term relationships (including two cohabiting with their partner). All of the adolescents were nulliparous. Nine of the participants were students, and six were in full-time employment. Clinically, six of the participants had a BMI ≥ 29.5 kg/m2 , nine experienced hirsutism, all participants experienced menstrual problems, four experienced acne, and 12 had evidence of PCO on ultrasound. Biochemically, the mean testosterone concentration of the participants was 2.7nmol/L (Range: 1.3–4.3 nmol/L) (Table 2). The NVivo transcript analysis yielded a total of 214 nodes. The concepts within these nodes were summarized into 78 descriptive themes and are described below within the context of the 14 main categories derived from the semistructured interview schedule.

Experience of the Diagnosis Diagnosis of PCOS had been between 3 months and 8 years prior to interview. At diagnosis, a range of emotions were expressed, however, these were all negative, including “worry,” “shock,” and “disbelief,” whereas others felt “gutted,” “disturbed,” and “panicked.” Many of the young women explained that their initial reaction to the diagnosis was influenced by uncertainty about the nature of the illness, particularly the prospect of infertility. Inadequate provision of information by the clinician, particularly at the primary care level, the use of complex terminology, or direction of discussion

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Table 1: Semistructured Interview Schedule General starting questions Impact of having PCOS, details of diagnosis, understanding and implications of having PCOS, changes in physical appearance Experience of symptoms Hirsutism, weight, acne, menstrual irregularities, any others Impact on fertility Knowledge of fertility issues, concerns, how been affected Impact on emotional well-being Impact on relationships Home, work, personal life, impact on sex life, contraception Impact upon social life Activities, Friendships Support Sources of support, experiences of support, main source of support for PCOS issues, enough support Work Time off work, enthusiasm and efficiency at work Experiences with the medical profession/health care system Reactions to diagnosis, experiences and impact of tests, medications, other treatments Diet & Exercise If any changes made to diet, who initiated the changes, experiences of diets Physical exercise Type, specific activities, who advised exercise, whether changed since diagnosis Perceptions of themselves Attractiveness, body image, femininity, other Any general positive aspects Any general negative aspects Any additional comments

toward their parents were issues shared by many participants. In the majority of cases, the clinician had either recommended a website to peruse and/or had offered the patient a leaflet explaining the main aspects of PCOS. However, this failed to meet the satisfaction of most participants. Some participants felt that aspects of their syndrome had been “brushed over” and inadequately explained to them.

knowledge of the illness. These participants cited viewing of the wider literature (including via Internet) as the main source of their knowledge. The majority of the participants identified PCOS as a chronic problem, acknowledging that it was probable that PCOS would have future health and/or lifestyle implications including diabetes. With regard to future concerns, all participants except one discussed the prospect of infertility. Other concerns included exacerbation of symptoms, including hirsutism and weight gain.

Knowledge of PCOS Most participants exhibited a very basic understanding of the etiology of PCOS, although a small number demonstrated a well-developed in-depth

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A few adolescents reported experiencing pain (including frequent headaches, pelvic and abdominal pain) and tiredness, which they felt

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LTR

LTR

LTR

LTR

LTR

Single

LTR

Single

Single

LTR

LTR

Single

Single

Single

Status

Marital

Note. LTR = long term relationship; FT = full time.

21

15

21

9

21

17

8

14

21

7

20

21

6

13

21

5

21

20

4

12

21

3

20

17

2

21

18

1

11

(Years)

Number

10

Age

Participant

Student

FT Work

FT Work

Student

FT Work

FT Work

Student

Student

FT Work

Student

FT Work

Student

Student

Student

Student

Occupation

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Nulliparous

Status

Reproductive

White

Mixed

White

White

White

White

White

White

White

White

White

White

White

White

White

Origin

Ethnic

Table 2: Sociodemographic, Clinical, and Biochemical Data for Participants

Yes

No

No

Yes

No

Yes

No

No

No

Yes

No

No

No

Yes

Yes

Yes

Yes

No

No

No

No

Yes

Yes

No

Yes

Yes

Yes

No

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Problems

Yes

Menstrual Hirsutism

29.5 (kg/m2 )

BMI ≥

No

Yes

No

No

No

Yes

No

No

No

No

No

Yes

Yes

No

No

Acne

Unknown

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

Yes

No

No

Yes

Ultrasound

Ovary on

Polycystic

2.5

3.4

3.4

2.2

1.3

2.0

2.8

2.5

2.5

2.9

2.9

2.9

4.3

2.4

2.4

(nmol/L)

Testosterone

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were related to their PCOS or associated treatments and negatively affected their physical functioning. However, the majority of the adolescents felt that it was the main symptoms associated with the condition that had the most negative impact on quality of life, that is, weight, acne, hirsutism, infertility, and menstrual problems. These particularly affected emotional and social functioning and are described below.

stumpy,” “pot belly,” “little squidgy one,” and “wide.” Participants reported feeling “upset,” “worried,” “horrible,” “depressed,” “unattractive,” and “not very feminine” because of their weight and/or body shape. Many felt self-conscious and lacked self-confidence, feelings that were enhanced in certain social situations due to the fear of being judged, such as shopping for clothes, going to pubs or nightclubs, lying on the beach, or swimming:

Hirsutism Eight of the participants reported varying degrees of hirsutism, describing excess hair growth as “horrible,” “annoying,” and “irritating.” Locations affected included the cheeks, upper lip, chin, neck, chest, arms, lower back, posterior thigh, bikini line, feet, and lower abdomen. Hair removal methods used included plucking, bleaching, shaving, waxing, and hair removal creams. None of the young women had undergone permanent hair removal methods such as electrolysis or laser therapy, having been deterred by cost or associated pain. Terms adopted by participants to describe hirsutism included “fuzziness,” and “hairiness,” with one girl describing herself as a “monkey.” “Moustache” and “tash” were used to denote excessive hair growth on the upper lip. Hirsutism affected the adolescents with respect to clothing choices (choosing clothes that concealed the areas of excess hair growth), the inconvenience and expense of hair removal, self-perception, and confidence in social situations: You know, people, when they’re looking at your face you think “Oh God, are they looking at the hair? Are they looking at my moustache?” And you’re covering your face and, trying to hide it and you’re actually drawing more attention to it.

My friend asked me if I wanted to go swimming a couple of weeks ago, and I didn’t even let her finish the sentence. I just said no. I won’t let anybody see me in my swimming costume, well practically naked. I just don’t like it. If I don’t like it then nobody else is going to like it. Finding suitable clothes in which they felt comfortable and confident was identified as a problem for many of the girls. Wearing oversized clothing and/or jackets, obscuring perceived problematic areas, and “holding my stomach in a lot more” were methods used by a number of girls in an attempt to conceal their body shapes. Media influence and the projection of the proverbial “body beautiful” was recognized as being a contributory factor to girls affected by central adiposity being unsatisfied with their body shape, as this is not perceived as being consistent with the cultural ideal.

Acne Only four participants reported suffering with acne, three of whom reported improvements with age and treatment. The most significant impact acne had on them was in relation to its management. Only one participant described acne as having had adverse affects on emotional well-being and social functioning:

Weight

They would be all like “pizza face” and that kind of stuff like young lads do. I suppose it makes you quite quiet and shy. Like you are not one of those who is in the class who knows the answers in class but not want to shout out in case anyone turns around to look at you.

Although six of the adolescents had a BMI ≥ 29.5 kg/m2 , all except one participant experienced weight-related problems, including difficulty losing weight, constantly fluctuating weight, and unexplained weight gain. Weight problems were described as having the most negative impact on HRQoL, particularly on social and emotional well-being. Discourses used to describe body shape were all negative and included “apple on string,” “chubby,” “short and

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Menstrual Problems Irregular and absent periods caused great emotional distress amongst participants, particularly

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due to the prospect of infertility. Participants described feeling “depressed,” “disappointed,” “embarrassed,” “different,” “upset,” “frustrated,” “not normal,” and “distressed.” Some participants felt irregular or absent menstruation affected their femininity and identity as a woman. In some cases, period pains and premenstrual syndrome served as an indication of an impending menstrual bleed. However, some adolescents reported no such warning prior to onset and therefore had to carry sanitary protection around with them at all times. This was described as a “faff and a hassle” and “inconvenient.” Sexually active adolescents were concerned about the prospect of unknowingly becoming pregnant due to the absence or infrequent nature of their periods, “I’ve had unprotected sex or whatever in the past and been sort of like oh, I could get pregnant and I might not even know.”

ever, several adolescents explained that they were keen to begin trying to conceive at an earlier age than that which would be considered “ideal,” in an attempt to avoid contributory adverse effects of increasing age on fertility.

Infertility

Inability to predict and control mood swings and emotions were reported to have profound negative effects on personal relationships with family, friends, and especially partners: “I think it affects other people more than it affects me . . . like my friends. They don’t know what mood I’m going to be in or whether I am going to snap or whether I am going to be relaxed or what.”

The prospect of infertility was a concern for all participants despite being nulliparous. However, two were attempting to conceive, and the remainder expressed a desire to have children in the future. The adolescents described the prospect of infertility as “upsetting,” “worrying,” and “scary.” Participants also reported feeling “low,” “gutted,” “concerned,” “depressed,” and “panic” when considering fertility. Some participants felt that the prospect of an inability to conceive affected their femininity and identity as a woman: “It depresses me a bit because my boyfriend has got a young son from a previous relationship and you know, when we look after him and stuff like that I sometimes think to myself what if I can’t have children?” Some adolescents described feeling “reassured” about potential infertility by their physicians or through reading about available fertility treatments. Participants with family members or friends and/or familiarity with celebrities with PCOS who had successfully conceived explained feeling more reassured about their own chances of conceiving. However, a number of adolescents wanted information directly from their physicians as a form of reassurance and to ease their anxieties. Despite the apprehension, the majority of adolescents were not hoping to conceive in the imminent future and thus were not overly anxious about fertility preferring to “cross that bridge when I come to it.” They reported instead being generally more concerned with issues such as career development before considering starting a family. How-

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Emotions Most participants reported mood swings and/or emotional fluctuations. Discourses used to describe moods included “up and down,” “here, there and everywhere,” “moody,” and “one extreme or the other.” The majority of adolescents reported problems with their emotional well-being, describing themselves as “not balanced,” “highly strung,” “depressed,” “pessimistic,” “upset,” “irritable,” and “anxious.” They assigned these emotional effects to PCOS and its associated symptomatic profile.

Personal Relationships and Support The majority of participants revealed that PCOS had not affected their personal relationships. Participants divulged their diagnosis to members of the immediate family, partners, close friends, and selected individuals in the workplace. Some adolescents were not ashamed about people knowing they suffered from PCOS, others were more selective, often due to feeling “embarrassed.” Some revealed that sharing their diagnosis had strengthened their friendships because they were “letting them into my life” and exposing “vulnerabilities.” Likewise, with regard to family, some participants reported that revealing the diagnosis of PCOS strengthened their relationships, particularly through the desire of the parent(s) to “help.”

Sexual Relationships and Contraception The majority of sexually active participants thought that PCOS had no effect on their sex lives. Some participants speculated that their libido was higher in comparison with other women’s, whereas others reported that their libido had been adversely affected. A number of participants reported that

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This qualitative study explored the health-related quality of life of adolescents with polycystic ovary syndrome.

body image and hirsutism had contributed to anxieties about participating in sexual activity for the first time or with a new partner: “I’ve never been sexually active at all. It’s a physical thing, and you know, it involves elements of nakedness. And noone touches my stomach. What if the hair’s a bit out of control that day and I haven’t, you know.” Sexually active participants were either using condoms or the contraceptive pill as their main method of contraception (although this was often prescribed for another clinical purpose, i.e., regulating menstruation). Two participants reported using no contraception due to a desire to conceive. Many participants reported that they had engaged in “unprotected sex” or had not sought the morning after pill after an “accident” because they felt that the probability of conceiving through such acts was remote. “I knew that I wouldn’t get pregnant, even if I didn’t use contraception . . . like previous relationships when I’ve had unprotected sex, I’ve never got pregnant.”

Experiences with Health Care Professionals Experiences with the medical profession and health care system varied broadly. Although many participants expressed great affection toward the medical professionals encountered, others recounted negative experiences with health care professionals (HCPs). Issues raised included a poor understanding of the difficulties associated with weight loss, with adolescents feeling “judged,” “unsupported,” and “upset.” A number of adolescents felt that HCPs were more concerned with the clinical issues associated with PCOS, neglecting the psychological impacts of the syndrome. Some adolescents reported feeling like a “burden,” and a number explained feeling inhibited and unable to be completely candid in consultations. This was often due to an inability to build a “rapport” with a clinician due to inconsistency of care, resulting in adolescents feeling “angry,” “dismissed,” and “unhappy.” Experiences with GPs were particularly implicated as being a cause of frustration for a number of adolescents. Some participants described GPs as being “dismissive” of their symptoms, and lacking of “empathy.” Many adolescents reported “frus-

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tration” in having to complain about symptoms on multiple occasions before the GP initiated any action. Adolescents found the referral processes to be “frustrating” and slow; hospital consultations were too infrequent and brief, and thus many of the women felt “rushed” and unable to discuss their concerns.

Diet and Exercise The majority of adolescents reported that their diet was poor, reporting consumption of too much “junk” food, failure to incorporate fruit and vegetables, not eating enough, and “snacking.” Reasons for this included the expense associated with purchasing healthier foods, poor culinary skills, and lack of time and energy to prepare and plan meals. With regard to exercise, “walking” and physical activities associated with daily routine (e.g. cleaning, working, etc.) were most commonly described. Reasons for lack of exercise included lack of time, fatigue, expense associated with attending the gym/swimming/exercise classes, and lack of motivation. Participants also reported “not enjoying” exercise, and being intimidated and/or feeling self-conscious by exercising in a public environment. Most participants aspired to do more exercise, and some were actively taking steps to do so. The main motivation for wanting to do more exercise was weight loss and maintenance rather than to improve fitness levels.

Self-Perceptions Adolescents described feeling “unattractive” compared with female peers and sexually. The main reasons for this were associated with the symptomatic profile of PCOS. The adolescents explained that feeling unattractive had connotations with regard to forming relationships, their social lives, and their moods and emotions: I’ve had more hair than I know that most people have, even though it’s not by a lot, that’s always bothered me. I’ve always kind of been a bit self-conscious about that, so obviously that affects you feeling sexy and things like that. A number of adolescents had experienced altered self-perception with regard to their femininity and identity as a woman, due to the physical and reproductive symptoms associated with PCOS, and “misunderstanding” of the hormone testosterone. Hirsutism, and increased libido were considered

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Jones, G. L., Hall, J. M., Lashen, H. L., Balen, A. H. and Ledger, W. L.

to be “male characteristics” and irregular/absent menstruation, and the prospect of infertility were associated with not feeling very womanly: “Lack of periods and because the fact that you’re getting hairy is such a man thing.” One participant said, Oh yes, that word testosterone. The doctor said that it was what the blood tests would show if I had it [PCOS]. I had got high testosterone . . . and I thought “Oh god I am turning into a man.” It bothers me because just that word, testosterone, is associated with a man.

Positive Aspects In addition to positive comments which have been described above, some of the adolescents also reported the relief of a diagnosis of PCOS. It was an explanation for the symptoms they had been experiencing, and they were able to find the appropriate treatment and sources of support. Some other positive aspects reported by the adolescents included infrequent menstruation (and associated dysmenorrhoea and menorrhagia), being more appreciative of a healthy health status, and giving more consideration to leading a healthy lifestyle. One participant reported being different from other adolescents as being a positive aspect of PCOS. “I am different from other people and I like being different. So it is like, I have got PCOS you haven’t.” However, the majority of adolescents were unable to determine any positive aspects associated with PCOS. One adolescent described PCOS as being “the biggest disadvantage ever given to a woman.”

Discussion The aim of this study was to explore the impact of PCOS on the HR QoL of adolescents. For some adolescents, PCOS had some identifiable positive impacts. However, consistent with the existing literature in this area (Trent et al., 2002, 2003, 2005), overall the symptoms of PCOS had a profoundly negative impact upon HRQoL, particularly in the emotional and social areas of their lives. Weight problems and body perceptions were the most significant contributors to reduced HRQoL and they had adverse effects on adolescents’ emotional well-being, social functioning (including work/college life), self-confidence, and sexual relationships. This result is perhaps not surprising given that between 50% and 60% of women with

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PCOS are thought to be obese (Gambineri, Pelusi, Vicennati, Pagotto, & Pasquali, 2002). Our findings are consistent with those of Trent et al. (2005) who found that weight status is an important mediator in the relationship between PCOS and HRQoL in adolescent girls affected with the syndrome. Dramusic et al. (1997) found that 87.5% of 150 adolescents with PCOS in Singapore reported being “unhappy about their body weight.” High “drive for thinness” and “body dissatisfaction” scores were also observed in PCOS adolescents compared with their normative counterparts. There was no evidence of eating disorders among the participants in this study. However, daily struggles with foods and diets were commonplace. Although two studies which have investigated the relationship between a clinical eating disorder (i.e., bulimia nervosa) and PCOS in a U.K. sample have reached different conclusions (Michelmore, Balen, & Dunger, 2001; Morgan, McCluskey, Brunton, & Hubert Lacey, 2002), the psychological consequences of weight concerns for young women with PCOS is evident and suggests that more psychological support in this area is needed. Fourteen of the 15 adolescents reported experiencing weight-related problems, including difficulty losing weight, fluctuating weight, and unexplained weight gain. This supports the hypothesis suggested by Coffey, Bano, and Mason (2006) that all women with PCOS, regardless of BMI, experience weight concerns. It also suggests that an elevated BMI is not an accurate clinical indicator of reduced HRQoL, as it disregards the difficulties experienced by normal weight women with PCOS in trying to maintain their weight. The majority of adolescents also identified their distribution of body mass to be a cause of significant distress. The presence of central adiposity was found to be associated with selfconsciousness and reduction in self-confidence, particularly in social situations. As alteration in body composition, particularly central adiposity, is a common consequence of PCOS (Kirchengast & Huber, 2004; Zborowski, Talbott, & Cauley, 2001) and has been associated with impairments in QoL (Han, Tijhuis, Lean, & Seidell, 1998), it is unsurprising that many of the adolescents identified this feature as having a considerable impact upon their emotional well-being and social functioning. Our sample of adolescents expressed a desire to eat a more healthy diet and found it difficult to

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Improved communication between health care providers and adolescents is needed about the diagnosis of polycystic ovary syndrome, future implications for fertility, and sexual behavior.

follow certain diets. Multidisciplinary management of young women with this condition, for example, referral to dieticians, may prove beneficial here. Consistent with qualitative research on adult women with PCOS (Kitzinger & Wilmott, 2002), we found that the other overt visible symptoms of PCOS, including hirsutism and acne lead to feelings of low self-esteem, self-consciousness, and poor self-image among adolescents girls with the condition. Being predominantly considered a masculine characteristic amongst members of society, the presence of hirsutism is associated with social and psychological difficulties (Sonino, Fava, Mani, Belluardo, & Boscaro, 1993). The social stigma associated with acne (i.e., attribution of the cause of acne to poor hygiene or diet) can contribute to psychological morbidity, particularly emotional distress and behavioral disorders, in young people (Smithard, Glazebrook, & Williams, 2001), and thus it is not surprising that a reduced emotional wellbeing was observed in the adolescents in this study. The majority of the adolescents (80%) reported being sexually active. This was consistent with the findings from Trent et al. (2003) who found that more than one third of the adolescents with PCOS in their study were sexually active. However, our research also identified that some had engaged in unprotected sex as a consequence of having PCOS because they felt the probability of conceiving was diminished. The United Kingdom is cited as having the highest teenage pregnancy rate in Europe, second only to the United States in the developed world (UNICEF, 2001). In addition, the prevalence of sexually transmitted infections (STI) is reported to be increasing significantly within U.K. adolescents (Viner & Booy, 2005; Wald, 2006). This emphasizes the need for education and counseling regarding fertility issues, contraception, and STI prevention as part of the management program of adolescent women with PCOS. At diagnosis we found that the majority of participants reported a range of negative emotions and described a lack of information provided by their HCPs. If it was provided, it was often in terminology that was beyond their comprehension or

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directed more toward their parents. Similarly, Dramusic et al. (1997) found that 75% of adolescents in his study were distressed at receiving a diagnosis of PCOS and in the United States, Trent et al. (2003) found that only 20% of adolescents with PCOS understood the condition well. Concerns and anxieties surrounding possible future infertility and the role of testosterone in PCOS were also very evident among the adolescents. Indeed, in research on adult women with the condition these concerns and anxieties have also been identified (Kitzinger & Wilmott, 2002). This suggests that in clinical practice, these particular issues need communicating with more care when giving a diagnosis of PCOS.

Limitations Difficulty recruiting adolescent participants was the main limitation encountered. The presence of archetypal PCOS symptoms within members of this age group is commonly dismissed by physicians as natural changes and phenomena of adolescence (Adams-Hillard, 2005; Homberg & Lambalk, 2004). From a total of 40 adolescents approached to participate in the study, only 15 provided informed consent and attended an interview. It is unknown whether the nonparticipating adolescents were comparable with those recruited. This low recruitment rate may have been due to a reluctance to discuss and divulge information regarding such intimate and personal issues as those discussed here. In addition, no form of reimbursement, beyond travel expenses, was available for participants. Lack of compensation for the time and effort required for participation in the study may have served as a deterrent for many of the adolescents. A number of the established symptoms of PCOS, for example, weight problems, acne, hirsutism, and mood swings are associated with the normal hormonal and biochemical changes instigated during puberty and may persist through adolescence and young adulthood (Barth & Clark, 2003; Nicholls & Viner, 2005; Susman et al., 1987). Thus, a comparative study is needed with an agematched normative control group of adolescent girls without PCOS to ascertain whether the affects of these symptoms on HRQoL reported in this study are exclusively linked with PCOS or are of importance to the health and well-being of other adolescent girls without the condition.

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Jones, G. L., Hall, J. M., Lashen, H. L., Balen, A. H. and Ledger, W. L.

Conclusions We used qualitative methodology to investigate the HRQoL of adolescents with PCOS. This highlighted the diverse areas of HRQoL that are affected in young women with the condition, particularly their emotional and social functioning, which occur largely as a result of the visible symptomatic manifestations of the syndrome. However, fears and concerns about future infertility also contribute to a reduced emotional HRQoL.

Dramusic, V., Rajan, U., Chan, P., Ratnam, S, & Wong, Y. C. (1997). Adolescent polycystic ovary syndrome. Annals of the New York Academy of Sciences, 816, 194–208. Fayers, P. & Machin, D. (2000). Quality of life: assessment, analysis and interpretation. Chichester, UK: Wiley. Fratantonio, E., Vicari, E., Pafumi, C., & Calogero, A. E. (2005). Genetics of polycystic ovarian syndrome. Reproductive Biomedicine Online, 10, 713–720. Gambineri, A., Pelusi, C., Vicennati, V., Pagotto, U., & Pasquali, R. (2002). Obesity and the polycystic ovary syndrome. International Journal of Obesity and Related Metabolic Disorders, 26, 883– 896. Han, T. S., Tijhuis, M., Lean, M. E. J., & Seidell, J. C. (1998). Quality of

The emotional well-being of adolescents presenting with the syndrome needs to be recognized more fully, particularly in relation to the low selfesteem, evident self-consciousness, poor body image, struggles with weight, and prospect of infertility expressed by many of the adolescents. The results of this study raise implications for clinical practice and suggest that a multidisciplinary approach to the management of young women with PCOS, including referral to specialist dieticians and counseling may be of benefit as well as improvements in the continuity of care of adolescents with PCOS.

life in relation to overweight and body fat distribution. American Journal of Public Health, 88, 1840–1820. Harris-Glocker, M., Davidson, K., Kochman, L., Guzick, D., & Hoeger, K. (2010). Improvement in quality-of-life questionnaire measures in obese adolescent females with polycystic ovary syndrome treated with lifestyle changes and oral contraceptives, with or without metformin. Fertility and Sterility, 93, 1016–1019. Hart, R., Hickey, M., & Franks, S. (2004). Definitions, prevalence and symptoms of polycystic ovaries and polycystic ovary syndrome. Best Practice & Research Clinical Obstetrics & Gynaecology, 18, 671–683. Homberg, R. (2002). What is polycystic ovarian syndrome? – a proposal for a consensus on the definition and diagnosis of polycystic ovarian syndrome. Human Reproduction, 17, 2495– 2499. Homberg, R. & Lambalk, C. B. (2004). Polycystic ovary syndrome in

The participants in this study reported feeling frustrated due to the lack of explanation and information provided regarding their illness. This is an important area to be addressed in the management of adolescents with PCOS. Future research is needed to identify ways to improve communication between adolescents with PCOS and their HCPs, particularly around the diagnosis and potential for infertility. Finally, HCPs need to be more aware of the potential for poor sexual health in adolescents with PCOS through risk taking behaviours that may occur due to the potential loss of fertility.

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