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Josephine G Paterson

Raising awareness of polycystic ovary syndrome Tomlinson J et al (2013) Raising awareness of polycystic ovary syndrome. Nursing Standard. 27, 40, 35-39. Date of submission: January 10 2013; date of acceptance: February 22 2013.

Abstract Aim To identify women’s experience of receiving information about polycystic ovary syndrome (PCOS), and develop an information booklet. Method Women from Cornwall with a diagnosis of PCOS participated in focus groups to discuss their experiences of the condition. Findings Participants described difficulties in sourcing credible and helpful information about PCOS. Conclusion A booklet was produced for women with PCOS to improve their knowledge of the condition.

Authors Julie Tomlinson Associate professor and honorary nurse consultant, Plymouth University Peninsula Schools of Medicine and Dentistry (PUPSMD), and Pool Health Centre, Redruth. Gayle Letherby Professor of sociology, Plymouth University. Jonathan Pinkney Professor of medicine, honorary consultant physician, PUPSMD, Plymouth University and Plymouth Hospitals NHS Trust Ann Millward Associate professor of clinical diabetes, consultant in diabetes, PUPSMD and Plymouth University. Elizabeth Stenhouse Associate professor of midwifery research, Plymouth University. Correspondence to: [email protected]

Polycystic ovary syndrome (Pcos) is the most common endocrine condition in women of reproductive age, with prevalence rates of between 6-10% (Knochenhauer et al 1998, diamanti-Kandarakis et al 1999, asunción et al 2000). However, evidence suggests that this may be an underestimate as a result of under-diagnosis (march et al 2010). the reasons for variation in prevalence rates are complex, as previous studies have recruited women from different populations, including from secondary and primary care, and from different ethnic backgrounds. However, one factor that may help to explain this variation, is that the United states (Us) and europe define the syndrome using different diagnostic criteria (march et al 2010). Box 1 illustrates differences between the national institutes of Health diagnostic criteria for Pcos used in the Us (Zawadski 1992) and the rotterdam diagnostic criteria for Pcos used in europe (rotterdam esHre/asrm-sponsored Pcos consensus Workshop Group 2004).

Polycystic ovary syndrome

Keywords Endocrine conditions, polycystic ovary syndrome, women’s health

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Pcos is a heterogeneous condition occurring in women of reproductive age. it is associated with a wide range of signs and symptoms, including excessive hair growth (hirsutism) or hair loss (alopecia), acne, obesity – especially with abdominal fat distribution, irregular menses and infertility. Women with Pcos may be affected by some or all of these features and to a greater or lesser degree. Pcos may be perceived as a cosmetic issue because of hirsutism and acne, or as a gynaecological concern that causes irregular menses and reduced fertility. Pcos may also be associated with insulin resistance (dunaif 1997)

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Art & science research and type 2 diabetes (tomlinson et al 2010). it is often not acknowledged that Pcos is linked to increased cardiovascular risk, such as raised blood lipids and blood pressure, and carotid intimal medial thickness (Wild et al 1985, talbott et al 1995, alexander et al 2009). diabetes UK (2006) and the american diabetes association (2012) recommend that women with Pcos should be screened for type 2 diabetes. However, there is a lack of evidence to inform the clinician when to commence or cease screening for type 2 diabetes according to the age of the woman. there is also a lack of evidence to specify an optimal screening method for Pcos, for example a fasting glucose or two-hour oral glucose tolerance test, or any recommendations that justify an appropriate screening interval (tomlinson et al 2010). despite the lack of agreed, standardised screening guidelines, it has been suggested that women with symptoms of Pcos, such as irregular menses, hirsutism, alopecia, hyperandrogenaemia (raised blood androgens) and obesity, should be screened for insulin resistance and cardiovascular risk by conducting fasting lipid profiles and glucose tests (alexander et al 2009). Further research will be necessary, however, to determine the optimal glucose test, frequency of testing and whether it is cost-effective to perform regular cardiovascular risk assessment in this patient group.

BOX 1 Criteria for diagnosing polycystic ovary syndrome (PCOS) Europe Rotterdam criteria for diagnosing PCOS Requiring any two of the following three symptoms: Clinical and/or biochemical hyperandrogenism, such as hirsutism and/or acne. Oligomenorrhea and/or anovulation. Polycystic ovaries diagnosed by ultrasound scan. Other endocrine disorders, such as congenital adrenal hyperplasia, androgen-secreting tumours, Cushing’s syndrome and hyperprolactinaemia, should be excluded. United States National Institutes of Health criteria for diagnosing PCOS Requiring both of the following symptoms: Clinical and/or biochemical signs of hyperandrogenism, such as hirsutism, acne or male pattern baldness. Chronic menstrual irregularity as a result of oligomenorrhea and/or amenorrhoea. Other endocrine disorders, such as congenital adrenal hyperplasia, androgen-secreting tumours, Cushing’s syndrome and hyperprolactinaemia, should be excluded. (Zawadski 1992, Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group 2004)

Background the first author’s (Jt) clinical experience in primary care, and anecdotal evidence, has demonstrated that there is limited information available for women with Pcos about the condition, associated risks of type 2 diabetes and cardiovascular events, and management of symptoms. Pcos is commonly diagnosed in primary and secondary care after the woman presents with symptoms of oligomenorrhoea, infertility or obesity, and subsequently undergoes biochemical testing of androgen levels to confirm diagnosis. diagnosis may also be confirmed with transvaginal ultrasound of the ovaries, although this is not always necessary. in primary care settings, general practice disease registers often have few recorded cases of Pcos. Unpublished audit work by Jt found Pcos prevalence rates of less than 2% in the female general practice population. this is likely to be an underestimate as a result of low detection rates or poor recording of read codes (a code applied in primary care to clinical diagnoses, enabling the user to perform efficient computer searches for research and audit purposes). these findings highlight two areas of concern: a possible lack of knowledge about Pcos among healthcare professionals, contributing to under-diagnosis; and limited information available to women with Pcos, particularly in relation to the need for diabetes screening and assessment of cardiovascular risk. it is, therefore, important to establish from women with Pcos if they feel they have received adequate and appropriate information from healthcare professionals. this is important following initial diagnosis and should include ascertaining the format of information received, who provided it and if patients were made aware of the potential risk of type 2 diabetes and cardiovascular events. as there is limited evidence exploring this aspect of Pcos, this article describes a qualitative study that explored women’s understanding of Pcos, and associated risks of type 2 diabetes and cardiovascular events.

Aim the study aimed to identify women’s experience of receiving information about Pcos following diagnosis, particularly in relation to the need for type 2 diabetes and cardiovascular risk screening. information gathered would then be used to develop a booklet for women with Pcos.

Method the study used a purposive sample, targeting women aged 18-45 with a diagnosis of Pcos

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during 2011 in cornwall. Participants were recruited by poster advert or through an invitation from the GP or hospital consultant to participate in focus groups to discuss their experience of living with Pcos. Participants were from diverse socioeconomic backgrounds and were all white British. ethical approval for the study was gained via cornwall and Plymouth nHs ethics committee. Before participation in the focus groups, participants were given a brief description of the aim of the study, and were informed that confidentiality would be maintained at all times, and that data would be anonymised. Participants were asked to complete a consent form. the focus groups were conducted in a local educational centre linked to Plymouth University and adjacent to the royal cornwall Hospitals nHs trust. Participants completed a short questionnaire to ascertain their knowledge of the comorbidities associated with Pcos and how to reduce their health risks through self-management. there were between three and six women in each of the three focus groups (n=18). the study approach was semi-structured, with focus group participants being asked some open-ended questions, which led to discussion of issues of interest. conversations were digitally-recorded with participants’ consent, and transcribed verbatim to ensure accuracy (strauss and corbin 2008). analysis was undertaken by sub-groups of the research team, with at least two members working together at one time. each sub-group identified themes and topics, which were discussed and debated until consensus was reached. although the findings may not be generalisable to all women with Pcos, it is likely that the experiences reflected in this study will have meaning for others in a similar situation (mitchell 1983).

Findings Value of Information a key theme that arose from the data was that of availability and usefulness of information about Pcos. Participants described difficulties sourcing credible and helpful information when they were initially diagnosed with Pcos. some stated that healthcare professionals appeared to lack knowledge of the condition and others spoke of receiving conflicting advice. the main complaint was the perceived lack of professional expertise in relation to Pcos. most participants resorted to searching for information on the internet because of a lack of professional and written information. However, the available material was itself varied, ranging from ‘excellent’ patient support groups such as the charity verity, to information on commercial websites that frequently advertised

the organisation’s products. although many of the participants in the focus groups had become ‘expert patients’ (donaldson 2003), their knowledge was often acquired by chance and dependent on their own efforts to investigate their condition. Without exception, participants felt that they did not know enough about Pcos: ‘… there’s just no information... there’s nothing out there’ (Participant 1). ‘I want to help myself, by the time you see everybody it’s such big gaps so I went on the internet and researched myself’ (Participant 2). ‘One thing that really really helped me in terms of research on the internet was that I watched lots of video diaries of the females’ (Participant 3).

Knowledge of type 2 diabetes risk

most participants were aware of the risk of type 2 diabetes and that this could be reduced through diet and exercise. nevertheless, participants’ concerns about developing type 2 diabetes and experiencing cardiovascular events in the future were deemed to be less significant than their current lived experience: ‘I don’t know of any family with it, but my mum was slightly annoying when I got diagnosed, because I was pretty cool about it, and – the baby thing was an issue, but, she was like “you’re going to get diabetes”. And I was like “well actually, I’m keeping up on my weight, so I kind of think as long as I keep control of it, then I probably won’t… out of the two of us, the person more likely to get diabetes out of me and you mum, right now, is you”… I obviously wouldn’t want diabetes, I know people do get it and stuff, but I like to be in control (Participant 3). ‘The link to things like type 2 diabetes and the lack of information of the different types or different ways in which PCOS presents itself in different people is the big confusion point I think. Because you feel like you’re grouped into one category and that those rules don’t always apply to you so that’s the most challenging part of living with it. I know that you know I’m okay in terms of fertility and children, but there are other issues that come, like diabetes or heart disease. So I feel like I need to take control and do something about it’ (Participant 4).

Identity problems

Participants expressed concerns about their identity and fertility. some described problems conceiving and the struggles they had encountered in obtaining

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Art & science research consistent information about how to improve their chances of getting pregnant: ‘I don’t think my body was designed to carry children, which is why I didn’t fall pregnant on my own’ (Participant 6). several participants commented that they wanted more information on hair removal, acne treatment and weight loss, and often described how they had gone to great lengths to address these issues: ‘I was very hairy… I think I became more aware of it obviously while I was going through school, but I think sort of… after leaving school, because I didn’t have to then strip off for those showers and everything like that, it was one of those things that I could kind of hide from myself. I do everything from kickboxing to weights to belly dancing to dancing, you know, step aerobics. And we were doing weights and the teacher said to the girls “oh, you know, don’t worry because you can’t build the muscles like men can”. And I’m thinking “ah, can I?” Because obviously with having testosterone and probably having more testosterone than most women, can I build muscles like men do?’ (Participant 7). While some participants were aware that weight loss could improve symptoms of Pcos, most participants who already felt they were a healthy weight and exercised regularly, expressed frustration that information was aimed at overweight and obese women with Pcos. the needs of women with a healthy body mass index who have Pcos were not being met.

Developing the information booklet information gathered from the focus group discussions led to the development of an information booklet for women with Pcos. a first draft was produced, collating key themes from the focus groups and additional information provided by the authors’ combined clinical knowledge. the information was sent to the graphics officer of the royal cornwall Hospitals nHs trust so that an attractive, user-friendly booklet could be developed that would comply with trust guidelines for publication. the first draft was then circulated to doctors, nurses and midwives with expertise in Pcos, and to the participants who attended the focus groups. the content of the booklet was assessed to ensure it contained the information deemed necessary by the participants with Pcos and the various healthcare professionals. it was also checked for

readability to ensure there were no ambiguities, technical jargon or factual errors. acceptability was assessed through feedback from the individual focus group participants. one participant requested that the wording in the section on hirsutism was altered slightly so that it was more sensitive to women with this problem. these changes were subsequently made to the booklet. after several revisions to incorporate changes the booklet design and content was sent for trust approval. Permission to publish the booklet was given once information was added about the booklet being translated into other languages, and being made available in braille or larger print if requested. Permission was then secured from the sponsoring organisations, the Queen’s nursing institute (Qni) and the Burdett trust for nursing, to incorporate their logos into the final design. the booklet Polycystic Ovary Syndrome: Signs, Symptoms and Associated Risks – A Guide for Women is available at:

Dissemination of the booklet Following the development and validation of the information booklet, copies were printed and distributed in the following ways: a  copy was sent to each general practice in the county, with a supporting letter from cornwall and isles of scilly public health department highlighting the increased risk of type 2 diabetes and the need to offer screening for this condition. cornwall  and isles of scilly health promotion staff distributed booklets free to healthcare professionals and clinical areas on request. a  pdf file of the booklet was produced and made available for free download from the cornwall and isles of scilly health promotion website and Qni website. Press officers at the Qni and the now-disbanded cornwall and isles of scilly Primary care trust were contacted and press releases were distributed to the media to ensure the Pcos booklet and related health messages gained maximum publicity.

Discussion the participants in the study were diverse in terms of age and socioeconomic background. However, there was no ethnic diversity as all participants classified themselves as white British. all participants were self-selected, which is likely to have affected the issues discussed and may have led to recruitment of women who were better informed about Pcos than most. Furthermore, the number of participants was relatively small and findings might not be

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generalisable to all women with Pcos. However, the study illustrated some important findings. of significance is the issue of under-diagnosis of women with Pcos. march et al (2010) found that 70% of women in australia with Pcos were undiagnosed. Under-diagnosis, or at least the failure to record a diagnosis with an appropriate read code on patient records in primary care, was highlighted by the first author (Jt). it is important to determine whether this finding was typical by undertaking a larger Pcos prevalence study in the community setting. Unless women with Pcos are appropriately diagnosed they are likely to seek advice about risk reduction and symptom management. Furthermore, if they are not identified by read codes on a general practice database, they are unlikely to be invited to participate in screening for type 2 diabetes or cardiovascular risk. the study demonstrates that there is a need to provide women with evidence-based advice during and following diagnosis of Pcos. the educational booklet was produced primarily with the intention of providing an overview of Pcos to women at diagnosis, and to highlight the risk of developing type 2 diabetes and experiencing cardiovascular events. it is hoped that by being widely available, the booklet might also remind healthcare professionals to consider a diagnosis of Pcos during consultation with women experiencing symptoms such as hirsutism, acne or menstrual

irregularity, and to ensure women have access to appropriate screening.

Conclusion this study has demonstrated the need for improved information for women with Pcos, especially in relation to the development of type 2 diabetes and risk of cardiovascular events. it has highlighted that there may also be a requirement for healthcare professionals to increase their knowledge of the condition to ensure women are supported during and following diagnosis NS This project was supported by a Queen’s Nurse Institute Leadership and Innovation Award and the former Cornwall and Isles of Scilly Primary Care Trust

IMPLICATIONS FOR PRACTICE Polycystic ovary syndrome (PCOS) is a common, heterogeneous condition that can have wide-ranging implications on women’s health, including obesity, reduced fertility, and increased cardiovascular and type 2 diabetes risk. Healthcare professionals should be aware of the diagnostic criteria for PCOS so women with the condition can be identified, and offered appropriate advice and support. Women diagnosed with PCOS should be added to a general practice ‘disease register’, using a read code to enable diabetes screening recalls.

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Diamanti-Kandarakis E, Kouli CR, Bergiele AT et al (1999) A survey of the polycystic ovary syndrome in the Greek island of Lesbos: hormonal and metabolic profile. Journal of Clinical Endocrinology and Metabolism. 84, 11, 4006-4011.

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Rotterdam ESHRE/ASRMSponsored PCOS Consensus Workshop Group (2004) Revised 2003 consensus on diagnostic criteria and long-term health risks related to polycystic ovary syndrome (PCOS). Human Reproduction. 19, 1, 41-47. Strauss A, Corbin J (2008) Basics of Qualitative Research: Grounded Theory. Procedures and Techniques. Third edition. Sage, London. Talbott E, Guzick D, Clerici A et al (1995) Coronary heart disease risk

factors in women with polycystic ovary syndrome. Arteriosclerosis, Thrombosis, and Vascular Biology. 15, 7, 821-826. Tomlinson J, Millward A, Stenhouse E, Pinkney J (2010) Type 2 diabetes and cardiovascular disease in polycystic ovary syndrome: what are the risks and can they be reduced? Diabetic Medicine. 27, 5, 498-515. Wild RA, Painter PC, Coulson PB, Carruth KB, Ranney GB (1985) Lipoprotein lipid concentrations and cardiovascular risk in women with polycystic ovary syndrome. Journal of Clinical Endocrinology and Metabolism. 61, 5, 946-951. Zawadski JDA (1992) Diagnostic criteria for polycystic ovary syndrome: towards a rational approach. In Dunaif AG Jr, Haseltine FP, Merriam GR (Eds) Polycystic Ovary Syndrome. Blackwell Science, Boston MA, 377-384.

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Raising awareness of polycystic ovary syndrome.

To identify women's experience of receiving information about polycystic ovary syndrome (PCOS), and develop an information booklet...
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