By Dr China Harrison, Research Fellow in Qualitative and Behavioural Science, Health Protection Research Unit in Behavioural Science and Evaluation at the University of Bristol
Polycystic Ovary Syndrome (PCOS) is a common hormonal condition that affects over 10% of women. However, it often goes undiagnosed for a long time. Many women experience problems with their fertility, weight, and mental health for years before finding out they have PCOS and how to manage it.
There is a lack of clarity about what causes PCOS which adds to the challenge of diagnosing and treating it effectively. This blog looks at how important the relationship between patients and healthcare providers is in PCOS care and what barriers need to be overcome to improve this connection.
The importance of patient-practitioner relationships
The relationship between healthcare professionals and patients is very important for several reasons. It helps both parties make decisions together, encourages patients to take control of their care, supports treatment plans and ensures patient safety, all of which lead to better health outcomes.
However, research shows that many women with PCOS face difficulties when interacting with healthcare professionals. These challenges arise because PCOS is complex, its symptoms vary, and it is often not given enough attention by health care providers.
With the release of the 2023 international PCOS guidelines, which stress the importance of better patient-healthcare professional interactions, our team aimed to find the key issues patients face when interacting with healthcare professions and propose ways to improve care.
What we did
We conducted a detailed review of 28 studies that discussed the challenges patients face when talking to health care professionals about PCOS. The studies were found from searching five databases and were reviewed and analysed to identify the common issues or barriers patients face when seeking PCOS care.
What we found: four key barriers to effective PCOS care
1. Poor communication of medical information
One common problem was that important information about PCOS, its treatment and management weren’t clearly explained to patients. Many women felt that healthcare providers provided information in an insensitive or dismissive way, leaving them unsure about their health choices. Additionally, patients often felt that healthcare professionals didn’t know enough about PCOS, causing delays in diagnosis and leaving them without answers for their symptoms.
2. Limited chances for discussion
Another challenge was the lack of opportunities to talk with healthcare professionals about their concerns. Women with PCOS felt that health care professionals didn’t involve them enough in decisions, leading to treatments that didn’t fit their needs. Factors like system restrictions or patient characteristics, such as weight or age, also reduced treatment options, adding strain to the patient-healthcare professional relationship.
3. Lack of support for self-management
Managing PCOS often requires patients to take an active role, but many women felt they were left to manage their condition on their own due to gaps in care. This led to frustration and some women even felt they had to diagnose themselves. Many women also felt that doctors didn’t recognise their efforts to self-manage their own health, which further strained the patient-healthcare professional relationship.
4. System-level barriers
Lastly, larger issues in the healthcare system, like outdated policies and inefficient guidelines, were major barriers. These system problems, combined with unhelpful and dismissive behaviour from professionals, made patients feel unsupported in managing their PCOS.
How can these findings be used?
To overcome these barriers, health care providers need to focus on clear communication, empathy, and working together with patients when making decisions. Staying up to date with the latest PCOS guidelines and treatments is also important to ensure patients get the best care. Additionally, healthcare systems should provide more resources for PCOS patients, such as access to specialists and educational tools.
Strategies for improvement
1. Patient-centered communication
Improving interactions starts with patient-centered communication: this means listening carefully, asking open-ended questions, and acknowledging patient concerns. Healthcare providers should also use simple language, avoiding medical terms that might confuse patients
2. Shared decision-making
Involving patients in their care decisions helps build trust: healthcare professionals should explain different treatments options, discuss the benefits and risks, and respect patient preferences. Empowering women to take control of their PCOS care can lead to more personalised and effective treatment.
3. Investing in support resources
Healthcare systems need to offer better support for PCOS patients by expanding access to specialists like endocrinologists (medical practitioners specialising in the diagnosis and treatment of disorders of the endocrine glands) and fertility experts, as well as providing educational materials and support groups. Fixing the larger system issues will help improve the patient experience.
A Path Forward for PCOS Care
Breaking down barriers in PCOS care requires effort from healthcare providers, patients, and policymakers alike. By focusing on open communication, shared decision-making, and addressing system-wide problems, we can create a better healthcare environment for women with PCOS. This will lead to better diagnosis, care and empower women to manage their condition with confidence.
Paper
Challenges experienced by those with polycystic ovary syndrome in healthcare interactions: a qualitative evidence synthesis, by China Harrison et al., in Reproductive BioMedicine Online.
