In a large, international survey of women with polycystic ovary syndrome (PCOS), nearly 2 in 3 were dissatisfied with how long they waited for a diagnosis and how many health care professionals they visited before receiving a formal diagnosis.1
“Given the prevalence of PCOS, it is important for women and health care professionals to be more aware of the condition,” study researcher Helena Teede, FRACP, PhD, of Monash University in Melbourne, Australia, said in a press release.2 “Despite the misleading name, PCOS is not primarily an ovarian condition, but instead is a hormonal disturbance with diverse health effects that is largely inherited. The process of diagnosing PCOS needs to be improved, and the diverse set of metabolic, reproductive, and psychological features need to be understood and addressed.”
In the cross-sectional study, published in the Journal of Clinical Endocrinology & Metabolism, women completed an online questionnaire from 2015 to 2016 that was disseminated with the help of 2 PCOS patient support groups: PCOS Challenge, based in the United States, and Verity, based in the United Kingdom. They distributed the questionnaire to their website visitors, mailing lists, and social media followers with an international reach.
“We were interested in women’s diagnosis experience and satisfaction with information and educational materials they received at the time of diagnosis,” Dr Teede said.2
Of 1550 respondents, 1385 met eligibility criteria and had completed more than half of the survey questions. Respondents lived in 32 countries.
According to the study results, at least one-third (33.6%) of women waited more than 2 years before receiving a diagnosis of PCOS, with 47.1% visiting at least 3 health professionals in the diagnostic workup process.1
Only slightly more than one-third of respondents (35.2%) were satisfied with the diagnosis experience. Even fewer respondents (15.6%) were satisfied with the PCOS information they received, with less than a quarter reporting satisfaction with the information they received about common PCOS treatments like lifestyle management and medications. More than half reported they did not receive any information about long-term PCOS complications or emotional counseling and support.
The researchers found a positive association between satisfaction with information received and satisfaction with the diagnosis (odds ratio [OR]: 7.0; 95% confidence interval [CI], 4.9-9.9). There was also a negative association between diagnosis satisfaction and seeing 5 or more health professionals (OR: 0.5; 95% CI, 0.3-0.8) and waiting longer than 2 years for a diagnosis (OR: 0.4; 95% CI, 0.3-0.6). These associations were independent of time since diagnosis, age, and world region.
Difficulty with weight loss (53.6%), irregular menstrual cycle (50.8%), and infertility (44.5%) were the most commonly reported concerns about PCOS, according to the survey results.
“Our findings show women are dissatisfied with the diagnosis experience and that there are clear opportunities to improve awareness, diagnosis, and health outcomes for women with PCOS,” Dr Teede said. “The survey results, along with a new international guideline and awareness ad education initiative, will be used to inform international efforts to improve PCOS education and care.”
- Information on medical diagnosis of PCOS was based on self-report only and not validated with medical records.
- There is a potential for both recall bias and selection bias.
- The questionnaire was only available in English and on 2 English language websites.
Disclosures: The researchers report no conflicts of interest.
- Gibson-Helm M, Teede H, Dunaif A, Dokras A. Delayed diagnosis and a lack of information associated with dissatisfaction in women with polycystic ovary syndrome. J Clin Endocrinol Metab. 2016 Dec 1. doi:10.1210/jc.2016-2963 [Epub ahead of print].
- Women dissatisfied with long process to diagnose polycystic ovary syndrome [press release]. Washington, DC: Endocrine Society News Room; December 1, 2016. Accessed December 6, 2016.