The information needs of women diagnosed with Polycystic Ovarian Syndrome – implications for treatment and health outcomes

Polycystic Ovarian Syndrome (PCOS), the most common endocrine disorder in women [1], generates numerous health problems, usually commencing at puberty. PCOS affects approximately 5 to 10% of women of reproductive age in Australia [2].

The aetiology of PCOS is unclear: however, genetic inheritance may be implicated [3], and both insulin and androgen production are affected. Women diagnosed with PCOS have an increased risk of menstrual disorders, hirsutism, infertility, miscarriage, obesity, cardiovascular complications, endometrial cancer, and a seven fold greater risk of Type II diabetes [4].

The symptoms of PCOS may appear at any age during the reproductive life, and manifest in some groups of women differently to others. Women with PCOS may not seek assistance until they attempt to conceive, as this may be the first time they have not been under the influence of contraception, which may have masked the symptoms [5]. Symptoms such as obesity and hirsutism which were previously just annoying may get worse, and infertility may be a problem. Studies suggest symptoms vary by ethnicity. A 1999 study of Greek Caucasian women aged 17 to 45 years with PCOS (6.8% overall prevalence, n = 192), reported the prevalence of obesity at 38%, 29% experienced hirsutism with no menstrual disorders and 9.2% had menstrual disorders with moderate to severe hirsutism [6]. In Spanish Caucasian pre-menopausal women aged 18 and over, a study undertaken in 2000 found those with PCOS (6.5% overall prevalence, n = 154) had a prevalence of obesity of 36%, 40% had hirsutism, and 100% had menstrual disorders [7]. However, another 2000 study concerning women in the USA aged 18 to 45 years, white and black with PCOS (overall prevalence of 6.6%, n = 400) had a prevalence of 66% with menstrual disorders only, 19% with hirsutism only, and 14.7% experiencing both [8]. In Iranian girls aged 14 to 18 years, there was an overall prevalence of 3% with PCOS, and of these 6% had hirsutism, 7.4% had menstrual dysfunction, and 4.7% had severe acne [9].

In order to manage its impact, women with PCOS have a great need for information [10]. The physical and psychological problems associated with obesity and infertility, in particular, significantly affect quality of life [11]. Despite the huge increase in the availability of health information concerning PCOS, such as PCOS related books and websites, there has been little research in this area, particularly qualitative research. One of the few studies concerned with general health status of PCOS women examined questions important to women with PCOS. This 1998 study developed a tool to assess the quality of life of women with PCOS, in order to evaluate treatment outcomes [12]. Kitzinger & Willmott concentrated on women's own experience of PCOS within a feminist framework [13]. They found PCOS to be deeply stigmatising, and associated with considerable stress.

There is much consumer information available for many different aspects of health and disease, including PCOS. This information includes that developed by health professionals, advertising disguised as education, and also resources developed by support groups and individuals. The amount of information has increased and has recently become far more accessible with the advent of the Internet. The 1999 South Australian Health Omnibus Survey (n = 3013), a representative survey of people age fifteen years and above [14], found that the sources used to answer health related question in the last twelve months included mostly Doctors (83.6%), with Internet (12.3%) ranked seventh out of ten categories. The same survey found that 77.5% of respondents only sought health information when they had a problem.

Another group specialising in research considering how people use the internet for health research, found that the users appreciated the convenience of being able to seek information at any hour, that they could get a wealth of information online, and that they could do research anonymously.[15]

However, this paucity of research around specific conditions is disappointing. Women with PCOS often deal with their symptoms for a long time, without a specific diagnosis [13]. Many of these women do not know where to look for information. Such women have both a right to more information about their condition and are likely to benefit considerably if information is available. Given questions regarding the reliability, adequacy and agenda behind various sources of potential health information, our hopes are that guidelines can be formulated which assist health care providers in assuring the highest quality of information for the greatest benefit to health consumers.

This study used in-depth qualitative interviews to explore the complexity and in-process nature of meanings, attached to PCOS [16]. Women were recruited for the study from two major sources. Initially, seven women were recruited from a previous nutritional study of PCOS, undertaken jointly by the Commonwealth Scientific Industrial Research Organisation's Division of Health Sciences and Nutrition (CSIRO HSN), and the University of Adelaide's Department of Obstetrics and Gynaecology [17]. These women had previously been diagnosed in accordance with the National Institute of Health (NIH) consensus criteria for clinical diagnosis of PCOS [18]. A second group of women were recruited from the Polycystic Ovarian Syndrome Association of Australia (POSAA), a support group for women with PCOS. All women recruited to the study had previously obtained a diagnosis, which provided them with a reference point in their life from which to build their stories.

Intensity sampling, a sampling technique aiming to select cases that manifest the experience being examined intensely, was used to identify potential recruits [19] The characteristics of participants are discussed below.

The interviews were carried out by the first author. The first author had previously been involved with a nutrition study, as both a subject and a study coordinator [17] and many of the women were recruited from this same study. Thus, the subjects knew that the author had PCOS, and camaraderie had been established prior to interview. The interviews were reflexive; as the first author had her own experience of the condition, she had been part of the experience of the women in the past, and this experience was the basis of the relationship formed through the interviews such that the subjects and the interviewer were willing to openly exchange their experiences. This also provided the first author with insights during the analysis that may have not otherwise occurred [16].

Each of the interviews was transcribed and reviewed by the first author, which enabled further familiarity with the emerging themes of the interviews. 'Framework' content analysis, an analytical process involving a number of distinct yet highly interconnected stages [20], was used to categorise themes for discussion. This method was chosen because of its ability to facilitate systematic analysis. After transcription, data was managed using QSR N6 Student software [21].

Women with PCOS in this study, in addition to routinely using other information sources, preferred using the Internet. The Internet had the advantages that other sources provided, and a number of extra strengths. The Internet opened a world of information to these women, not just that which the doctor provided. It was convenient, private and highly accessible to most, and the information was available at a number of different levels. The women were also aware of the problems with the Internet. They knew that there was some skill involved in searching for and critically assessing information. Often the women would share the information with their doctors, in order to become involved with managing their health. They began to ask the "right" questions, that led to appropriate and efficient answers [31]. The age group of the women in this study reflects the beginning of the Internet literate generation; these women often had training and access to the Internet via their post school education, or at work. However, similar findings have been reported in other health information seeking groups such as older men with prostate cancer, now embracing the Internet also, such that online information provided empowerment, anonymity, but may upset the doctor-patient relationship [24].

There are some limitations to this study. The participants in this study present a group of women with PCOS who were already relatively confident with taking charge of their health care, via being involved in a clinical trial, and/or being involved in a PCOS support group. Other women, not in this environment, or even unaware of the implications of PCOS on their future health, may not be so assured in seeking information. The women in this group also represent a narrow age group, reflecting the age where fertility, rather than the other symptoms of PCOS, may be a major focus. The finding may not be representative of younger women, closer to their primary diagnosis, who may be even more Internet literate. These limitations to the study, particularly the characteristics of the participant group, mean that when discussing information needs, we can only generalise to a similar group of women. Other limitations of this study include the small sample size, and that only one form of data collection was used. The study could be strengthened using triangulation methods, extending to perhaps a questionnaire, and including the women in further discussions of the themes through focus groups. The results of the have also been reported back to participants and members of a PCOS support group.

How then should information be provided to women with PCOS? The medical practitioners may need to be provided with a "sample bag" of information to give to PCOS women at their diagnosis, and follow this information with a review session where the women can ask considered questions about their syndrome. The "sample bag" would need to have pamphlets for a quick run down of the condition and terminology, lifestyle information, support group contact information and a list of reputable web sites; so that further research can be carried out by the woman as her lifestyle and information needs changes over time.

Women with PCOS need to be consulted and involved with creating the design, and assessment of quality of information about their condition, so that this is relevant to their lifestyle. PCOS provides an ideal opportunity for directed health promotion, particularly in terms of diabetes and cardiovascular illnesses, as well as an opportunity for consumer involvement in decision-making, and development of clinical guidelines. The most important treatment that we know of for PCOS is promoting healthy lifestyle as early as possible. Women with PCOS need information and guidance about how to do this to enable them to take control of their own health.