Friday, 29 March, 2024
HomeEndocrinologyMajor gaps in education and support for women with PCOS

Major gaps in education and support for women with PCOS

Despite the prevalence of the complex and chronic condition, one-third of women diagnosed with polycystic ovary syndrome (PCOS)  saw at least three health professionals over the course of two years before receiving a diagnosis, according to a study from the University of Pennsylvania.

PCOS is the most common endocrine disorder – and the most common cause of infertility – affecting 9% to 18% of women around the world.  The study is the largest to date examining time to diagnosis, and reveals what the authors say are "major gaps" in education and support for women with the condition.

"Women with PCOS have an increased risk of type 2 diabetes, metabolic syndrome and anxiety and depression, and studies have shown that the longer it takes for the condition to be diagnosed, the greater the patient dissatisfaction," said senior author Dr Anuja Dokras, a professor of obstetrics and gynaecology and director of the Penn Polycystic Ovary Syndrome Programme. "These new results are concerning for both women who are, or may be, affected by PCOS, and health care providers. Not only do women often wait several months or even years before care providers are able to diagnose the condition, but even after diagnosis, patients are often unsatisfied with the information and support they receive."

PCOS primarily affects women of reproductive age – most often between the ages of 18 to 35. Inconsistent menstrual periods, excess hair growth, acne, and obesity are the most common symptoms, but the authors caution against placing too much emphasis on only one of these symptoms.

In the study, researchers surveyed 1,385 women from 48 different countries who had been diagnosed with PCOS to learn more about their diagnosis experience and the information they were provided about PCOS. More than one-third (33.6%) of women surveyed reported that it took more than two years before receiving a diagnosis, and nearly half (47.1%) saw three or more health professionals before receiving a diagnosis. Additional results showed that only 15.6% of women said they were satisfied with the information they received.

When asked "how can we best support women with PCOS?" more than 90% of participants said providing broadly available educational materials would be helpful, while 70% expressed an interest in support and presentations at patient workshops. The authors suggest that greater community and clinician awareness about the full range of PCOS features is needed internationally to enable early diagnosis.

"Women with PCOS who responded to the survey were most concerned about trouble losing weight, irregular menstrual cycles, and infertility. Health care providers have an obligation to provide these patients with better support and information at the time of diagnosis to help them understand and manage their condition," Dokras said, noting that the absence of a targeted diagnostic test likely contributes to delays in diagnosis. "The delays in diagnosis reported in the new study suggest a significant missed opportunity to improve treatment and quality of life for these patients. Diagnosing women with PCOS earlier will allow providers to intervene in a more proactive manner, treating symptoms of the condition – such as obesity, acne, excess body hair, anxiety, and depression – more effectively."

Based on the study findings, the authors are calling for the development of international evidence-based guidelines, co-designed consumer and health professional resources and international dissemination to improve diagnosis experience, education, management and health outcomes.

Abstract
Context: Polycystic ovary syndrome (PCOS) is a complex, chronic and under-recognized disorder. Diagnosis experience may have lasting effects on wellbeing and self-management.
Objective: To investigate PCOS diagnosis experiences, information provided and concerns about PCOS.
Design: Cross-sectional study using an online questionnaire.
Setting: Recruitment via support group websites in 2015-2016.Participants:1385 women with a reported diagnosis of PCOS, living in North America (53.0%), Europe (42.2%) or other world regions (4.9%), 64.8% of whom were 18-35 years old.
Main Outcome Measures: Satisfaction with PCOS diagnosis experience, satisfaction with PCOS information received at the time of diagnosis, and current concerns about PCOS.
Results: One third or more of women reported more than two years (33.6%) and three or more health professionals (47.1%) before a diagnosis was established. The minority were satisfied with their diagnosis experience (35.2%) or with the information they received (15.6%). Satisfaction with PCOS information received was positively associated with diagnosis satisfaction (odds ratio (OR): 7.0 95% confidence interval (CI): 4.9 to 9.9); seeing ≥5 health professionals (OR: 0.5 95%CI: 0.3 to 0.8) and longer time to diagnosis (>2 years OR: 0.4 95%CI: 0.3 to 0.6) were negatively associated with diagnosis satisfaction (independent of time since diagnosis, age and world region). Women’s most common concerns were difficulty losing weight (53.6%), irregular menstrual cycles (50.8%) and infertility (44.5%).
Conclusions: In the largest study of PCOS diagnosis experiences, many women reported delayed diagnosis and inadequate information. These major gaps in early diagnosis, education and support are clear opportunities for improving patient experience.

Authors
Melanie Gibson-Helm, Helena Teede, Andrea Dunaif, Anuja Dokras

[link url="https://www.sciencedaily.com/releases/2017/01/170109191555.htm"]Perelman School of Medicine material[/link]
[link url="http://press.endocrine.org/doi/10.1210/jc.2016-2963"]Journal of Clinical Endocrinology abstract[/link]

MedicalBrief — our free weekly e-newsletter

We'd appreciate as much information as possible, however only an email address is required.