Understanding Health Care in PCOS

 

Background

Women with PCOS can face multiple health risks including obesity, metabolic syndrome, type 2 diabetes, and heart disease. Due to the high prevalence of PCOS, it’s important that these women are identified within the healthcare system and support is provided in managing health risks throughout their lives. Currently, we have limited health care information related to health care experience, professional health services and the healthcare system that supports women with PCOS.

Aim

The aim of this research is to find out more about the diagnosis of PCOS, patient experiences in the healthcare system, and the healthcare needs of women with PCOS.  Our goal is to use this knowledge to inform us about the perceptions of health care and if we can improve the health care services currently available and provided to women with PCOS.

Objective

The aim of this study is to determine the patient-centred and clinical health care needs of women with PCOS and access to diet-lifestyle counselling using a population based questionnaire.

We are working with the Alberta Strategy for Patient-Oriented Research Unit (AbSPORU; Patient Engagement platform) and Alberta Health Services to implement a questionnaire, conduct focus and discussion groups, and determine strategies for including patients as partners and participants in research. Using this valuable lived-experience, we are assessing the patient-centered healthcare experience, perceptions and needs to develop better healthcare, intervention, preventative and support strategies in women with PCOS.

This study is looking for both research participants and patient partners in research. Patient partners help advise and inform the development of research studies, participant recruitment strategies and dissemination of findings.

Expected Outcomes and Significance of Research

The expected outcomes of this study is that it will provide valuable data on health care in women with PCOS in Alberta Canada. Outcomes will include information on  PCOS diagnosis,  follow-up care after PCOS diagnosis, referrals to other health professionals and access to nutrition services, overall healthcare history and concerns, and health and healthcare experience with having PCOS during the COVID19 pandemic lockdown.

The significance of the study is that it is the first study to survey women with PCOS and their health care and nutrition services related to their disease. The data gathered from this study will help us to determine the scope of health care  provided and available to women with PCOS and any gaps in these services.  We can then use this evidence to develop a framework to review and improve health care in women with PCOS, and to physicians and health care providers who care for women with PCOS. The framework can then be used to develop  guidelines in collaboration with stakeholders (patients, clinicians, health care providers) to optimize health care and patient-centred health care in women with PCOS.


Preliminary Data and Abstract Accepted at
Canadian Nutrition Society (CNS)-Annual Conference, May 5-7, 2022
American Society for Nutrition (ASN)-Nutrition 2022, June 14-16, 2022

 

Challenges in health care, diet and nutrition in Polycystic Ovarian Syndrome
Wilke MS, Ghosh M, Vine D.

Objectives

Polycystic Ovarian Syndrome (PCOS), the most common endocrine-metabolic disorder in women, is associated with a higher incidence of obesity, metabolic syndrome, Type 2 Diabetes and Cardiovascular Disease. The recommended first line targets are diet, lifestyle and behaviour in managing body weight and adverse health outcomes. The objective of this study was to assess the health status, health care experience and supports related to nutrition and lifestyle in people with PCOS.

Methods

Respondents completed a retrospective survey online between Jan 2021- Jan 2022 and included Alberta (Canada) residents who self-reported a diagnosis of PCOS (n=145). The survey was based on previous validated health and quality of life surveys in PCOS, expanded, and re-validated in PCOS patients and health care providers in Alberta. Themes of questions on diagnosis, referral to health care providers, health concerns, diet and nutrition were analyzed.

Results

The majority of respondents were aged 26 to 45 yrs of age (84%), self-reported overweight or obesity (96%) and were residents of Alberta for >10 years (85%). In 34% of respondents a diagnosis of PCOS took >2 years, and 60% reported visiting more than one healthcare provider before a final PCOS diagnosis. Many respondents (75%) were not informed of the health risks associated with PCOS. Following a PCOS diagnosis, 23% were diagnosed with high blood cholesterol and 25% with prediabetes or diabetes. Most respondents ( > 80%) were not referred to a Registered Dietitian or other health care provider to manage PCOS symptoms and cardiometabolic risk factors. A lack of nutrition knowledge was reported as a major barrier to losing weight (38%), however the most common barriers cited were stress (75%) and negative feelings (60%). A priority recommendation by respondents to improve their health care included better education in diet-nutrition.

Conclusions

This data provides evidence for the need to develop preventative health care strategies to improve overall health, referral and access to diet-nutrition counselling in this high-risk PCOS population in Alberta, Canada.

Funding Sources

Women and Children's Health Research Institute


Update:

A big thank you to everyone who has already taken the time to be involved in this study!

We are no longer recruiting for this study.