Worldwide Dissatisfaction With the Diagnostic Process and Initial Treatment of PCOS

Abstract

Commentary on the importance of the findings in “Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovarian Syndrome.”

A notable article in this issue is “Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovary Syndrome” by Drs Gibson-Helm, Teede, Dunaif, and Dokras(1). The authors present their results from an Internet survey of 1385 women with a diagnosis of polycystic ovarian syndrome (PCOS) from around the globe. The survey assessed women’s overall satisfaction with their diagnosis process and initial treatment recommendations for PCOS, using a previously validated assessment tool (2). The authors found that more than a third of women surveyed spent >2 years seeking a diagnosis to explain their symptoms and saw at least 3 separate medical providers. Furthermore, only 25% of women were satisfied with the information provided regarding treatment options, in particular lifestyle change. This work is a follow-up of a smaller study conducted within Australia, which also found similar results (2). This study is unique for PCOS because it includes participants from 32 countries (albeit limited to English-speaking women). The authors are leading clinicians and researchers in this field, who with this project have collaborated to advance worldwide PCOS care. The authors were able to find subtle differences in those treated within a single-payer system compared with multiple insurance coverage options, but these were small. There were also small differences between those receiving care in North America as compared with Europe. Women’s concerns changed with age, as one may anticipate, with diagnosis and fertility being primary for younger women, and lifestyle and comorbidities more of a focus for older women. The primary request from the survey participants in response to multiple-choice options of “How can we best support women with PCOS?” was to “provide broadly available educational materials.” The most common response in the “other category” for areas in need of improvement was to support “health professional education regarding PCOS.” Similar assessments in women with PCOS who speak languages other than English are ongoing. Because the survey was conducted from a support group Web site, results may be biased toward those women who were seeking additional information owing to perceived inadequate education from their provider. Patients also self-identified as being diagnosed with PCOS, and medical records were not accessed as part of the study. Regardless, the results are clear: our patients with PCOS are not receiving adequate or satisfactory care.

What becomes apparent is that our patients are confused in part because health care providers continue to struggle with making a diagnosis of PCOS. The first guidelines for PCOS diagnosis were released following a National Institutes of Health conference in 1990 (2). Since then, a plethora of differing guidelines have been released, including those from the Endocrine Society, Androgen Excess and PCOS Society, and multiple regional organizations (4–12). All of these guidelines have slight nuances to diagnostic testing that can be challenging to interpret. The most controversial part of these recommendations is the use of ovarian ultrasound to make a diagnosis. As ultrasound findings relate more to fertility outcomes than metabolic outcomes, the perceived importance of the test varies with the specialty of the medical provider and presenting complaint of the patient (13). Also, as discussed by the authors, PCOS presentation can vary based on age, ethnicity, and environmental factors. Additionally, laboratory testing for testosterone is challenging owing to diurnal rhythms with a peak in the morning, sex hormone–binding globulin effects on total testosterone concentrations, and variability in free testosterone assay methods (14). Additionally, if women present initially for dermatologic or psychiatric evaluation, PCOS may not be initially considered as a contributing disease. Likely due to the divergent diagnostic guidelines, multiple medical specialties of providers, and varied types of primary patient complaints, differences in the diagnostic and treatment approaches between specialties have been documented (15, 16). With such varied approaches, it is not surprising that women who see multiple providers initially had more visits and a longer time to confirmation of PCOS diagnosis. Unfortunately, there is no single solution to making diagnosing PCOS easier, but improved provider education and awareness could impact diagnosis and treatment.

One of the primary patient complaints was lack of patient education and materials, and the authors wrote that their results “suggest these (currently available resources) are underutilized by health professionals.” The relationship between PCOS education and corresponding improved quality of life was documented in women with PCOS 10 years ago (17). Despite the rapid rise of patient information now available on the Internet, the authors found that educational satisfaction has not improved. Several organizations have created informative handouts for different aspects of PCOS. Providers need to use these educational resources more, choosing which materials match their individual practice style and patient population the best. Some are listed here for ease of reference, but many others are available. The Androgen Excess and PCOS Society has several links regarding diagnosis, with a few on treatment (http://www.ae-society.org/). The Hormone Health Network, supported by the Endocrine Society and many national societies such as the Australian Endocrine Society, has translated their pages into Spanish and primarily covers diagnosis and questions of fertility, although they do include a section specifically on recommended dietary changes (http://www.hormone.org/diseases-and-conditions/womens-health/polycystic-ovary-syndrome). The National Institutes of Health has put together a list of links to several organizational and nonprofit pages that cover not only diagnosis, but also information on links for comorbid diseases such as diabetes and heart disease (https://www.nichd.nih.gov/health/topics/PCOS/resources/Pages/default.aspx). The American College of Obstetrics and Gynecology’s information concentrates on diagnosis and some limited treatment options (http://www.acog.org/Patients/FAQs/Polycystic-Ovary-Syndrome-PCOS). For adolescent PCOS, the Pediatric Endocrine Society has created patient handouts regarding diagnosis and treatment (http://www.lwpes.org/patients_families/Educational_Materials/index.cfm). There are also several nonprofit organizations, including PCOS awareness society (http://www.pcosaa.org/), as well as patient education sheets from UpToDate for those with subscription access, or the Mayo Clinic’s Web site. The survey in the article was conducted using the United Kingdom Verity patient support site, which contains information on diagnosis and treatment (http://www.verity-pcos.org.uk/). However, in reading through the various Web sites that appear with an Internet search, there are also many nonmedical sites, often with incorrect information. This underlies the importance of directing our patients toward reputable sites ourselves or providing them paper handouts covering relevant information.

The difficulties of tailoring patient education to lifestyle modifications are not unique to PCOS and apply to many diseases affected by diet and activity such as type 2 diabetes and cardiovascular disease. “Difficulty losing weight” was the leading concern of women in the survey, yet “less than one quarter were satisfied with PCOS related information given at diagnosis about lifestyle management.” Numerous studies have demonstrated that lifestyle intervention can help with all symptoms of PCOS, although effecting change in dietary and activity habits can be incredibly difficult (10, 11, 18). The recommendations for specific lifestyle changes again vary among the consensus statements, as do recommendations for screening for related metabolic comorbidities. Unfortunately, there is not an obvious scientifically supported dietary approach that is best for PCOS. Strategies studied include reduced calories regardless of macronutrient content, low carbohydrate, low fat, or high protein (18). Furthermore, the dietary recommendations may change based on the patients personalized goals and comorbidity risk factors. As an initial intervention, most nutritionists would agree that eliminating excess calories, especially calories from sugar-sweetened beverages, is a good starting goal. In terms of exercise, the intensity, duration, and type that is best for weight loss in women with PCOS is not clear, and again may vary based on the individual. In most cases, the best strategy is to understand the patient’s baseline activity and to guide the woman to devise a personalized strategy to increase her activity/exercise through a realistic approach (18). In terms of vitamin or herbal supplementation, a large body of confusing literature exists. For example, there is no clear evidence that vitamin D supplementation mitigates diabetes risk (19). Thus, the individual nature of lifestyle changes and lack of clear strategies do make it hard to make the concrete recommendations that our patients may be seeking. As the authors point out, “clinicians need to ensure that personalized histories elicit individual concerns to guide comprehensive care,” and following this can help inform the best lifestyle changes for each individual.

Armed with this information about our global diagnostic deficiencies, the challenge to all practitioners is to effect improvements in our own clinics. Within our own institution, we are implementing an across-division quality improvement project, encompassing pediatric endocrinology, adolescent medicine, adolescent gynecology, and our obesity clinics. This will ensure that regardless of which clinic a girl with PCOS presents, she will initially receive a comprehensive, individual, and efficient diagnostic work-up. We have not yet expanded our efforts into our dermatology and psychology clinics, but need to make this next step. Similar efforts for adult women could include family medicine, internal medicine, gynecology, and endocrinology specialties. These efforts take time and coordination, but as evidenced by the data presented in this paper, they are sorely needed worldwide.

We have created a multidisciplinary PCOS clinic to better provide patient education, once the diagnosis of PCOS has been made. This clinic brings together pediatric endocrinology, adolescent gynecology, dermatology, psychology, exercise physiology, and nutrition providers for one appointment, to provide coordinated and comprehensive care. This type of multidisciplinary clinic is increasing across the globe, offers a true patient-centered care approach, and is also used by the authors in the clinical care that they provide to their patients. Within our multidisciplinary PCOS clinic, we provide a group class to patients with PCOS that includes information on PCOS basic pathology and strategies to adopt lifestyle changes. We have each patient set a personal dietary and activity goal at every appointment to highlight the importance of making lifestyle changes, and they are taught how to do this within the class. We have developed an institutional handout covering the diagnosis and treatment of PCOS in adolescence and also a handout of external references to look up on the Internet, including many of those listed previously. These handouts are given to the patients at every appointment, as their needs may change over time. Some of these strategies are simple to implement, and some are more complex, but they should be explored by all providers who treat women with PCOS.

Women presenting with symptoms of PCOS deserve appropriate, efficient, and comprehensive diagnostic testing. Once these women are diagnosed, they deserve accurate and useful information to enable them to effect healthy lifestyle changes. As clearly documented in “Delayed Diagnosis and a Lack of Information Associated With Dissatisfaction in Women With Polycystic Ovarian Syndrome,” we are not doing very well in diagnosing this disorder and not supporting women adequately in learning how to make lifestyle changes. As this syndrome affects 10%–15% of the female population, this is a serious global health concern. Now that we know that there is a problem, we can focus on strategies to fix these deficiencies. It is our responsibility.