Shared decision-making critical for managing polycystic ovary syndrome
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Key takeaways:
- Consider patient preference when treating manifestations of polycystic ovary syndrome.
- The management approach needs to be lifelong and factor in cardiometabolic and mental health concerns.
Polycystic ovary syndrome presents in many forms with many manifestations, which is why providers must work with patients to treat the condition while factoring in their preferences and top concerns.
“We need to start thinking about PCOS not just as a gynecologic condition, but as a chronic, lifetime condition that has reproductive issues, could have cardiometabolic comorbidities, as well as psychologic challenges,” Anuja Dokras, MD, MHCI, PhD, professor of obstetrics and gynecology at the Hospital of the University of Pennsylvania and director of the Penn Polycystic Ovary Syndrome Center, said during an educational webinar hosted by the Society for Women’s Health Research. “The models of care delivery can include a multidisciplinary approach where the gynecologist may address the irregular periods, risk for hyperplasia in the uterus and infertility. [A patient] might need to see a dermatologist for excessive hair growth or acne, or a psychologist for the mental health issues. In pregnancy, PCOS is regarded as a high-risk condition and there is long-term risk for CVD.”
Dokras said shared decision-making is “critical” for a heterogeneous condition like PCOS, noting that not every patient is going to meet all three of the international guideline criteria for adults: oligo- or anovulation; clinical and/or biochemical hyperandrogenism; or polycystic ovaries or elevated anti-Mullerian hormone levels.
“[Patients] may have very regular periods but check off the other two boxes,” Dokras said. “Or they may have normal androgens but the first and third criteria. One size does not fit all, and because one size does not fit all, then we need shared decision-making.”
Benefits of targeted management
Dokras said management that incorporates shared decision-making could mean not treating a symptom if a patient does not consider it a concern, as long as it does not increase a person’s risk for an adverse outcome.
“Sometimes, hirsutism or acne may not be bothersome to a person,” Dokras said. “We are not going to prescribe treatment to improve those issues if they are not concerns. If the patient’s focus instead is on their long-term metabolic health, then that is where shared decision-making and management needs to be targeted.”
Dokras cautioned that some aspects of PCOS must be managed.
“For example, if a patient reports getting one period a year ... there is increased risk for hyperplasia or increased risk for cancer in the lining of the uterus,” Dokras said. “You are at increased risk if you are only getting one period a year and we need to help [the patient] manage that. Other presentations might be about preference from the patient perspective. You can lay out the palette of options available and address them one at a time, sequentially, all at one time or prioritize them.”
Women with PCOS are also at higher risk for depression as well as negative body image, low self-esteem and disordered eating, Dokras said, adding that data show a high prevalence of depressive and anxiety symptoms in young women with PCOS.
“Findings from our prior studies have informed the guidelines, such that we are recommending screening for both depression and anxiety right at the time of diagnosis during the first visit,” Dokras said. “The approach to PCOS needs to be lifelong and the focus should not just be on reproductive and gynecologic issues, but on cardiometabolic as well as mental health issues.”
Addressing PCOS ‘gaps in care’
Ali Chappell, PhD, MS, RD, the CEO and founder of Lilli Health, a nutrition education and wellness company for women with PCOS and a patient advocate living with PCOS, said there is a lack of understanding about the many manifestations of PCOS among health care providers that can frustrate many patients.
“Many patients do not have access to a reproductive endocrinologist who truly understands PCOS,” Chappell said. “They see a pediatrician or a family medicine provider, and these providers are often not fully comfortable with diagnosis and treatment.”
An absence of clear lifestyle guidance and conflicting information can also complicate treatment, Chappell said.
“It is not about taking a million supplements. It is not about going on crazy diets,” Chappell said. “It is really about understanding your metabolism and how it differs from other people and what you can do about it.”
Chappell said patients, too, must prepare for appointments with their health care providers in advance.
“Patients need to not feel scared to ask questions,” Chappell said during a Q&A after the webinar. “Sadly, I have seen a movement on social media about birth control pills ‘causing’ PCOS. They are prescribed often for patients because they are not having a period and they need something that is going to help them to shed that [uterine] lining and reduce risk for endometrial cancer. If providers do a better job of explaining, ‘this is why,’ that would provide a lot more understanding from patients about the role birth control pills have in PCOS. What are the medications being prescribed and why are they being prescribed?”
Chappell had similar advice for dietitians.
“For dietitians, if you are giving me these recommendations and I am following them and not finding success, why am I not finding success? What could I do differently?” Chappell said. “[Patients], make sure you are coming to conversations prepared to ask questions. Challenge your health care providers.”
As Healio previously reported, an updated evidence-based guideline for the assessment and management of PCOS includes new recommendations for a timelier diagnosis and evidence that firmly supports PCOS is a risk factor for CVD. The 2023 updates to the International Evidence-based Guideline for the Assessment and Management of Polycystic Ovary Syndrome support the Rotterdam criteria for diagnosis, which are now evidence-based. Additionally, an updated algorithm recommends women with PCOS receive screenings for all cardiometabolic risk factors, including cholesterol, with follow-up based on individualized risk level. There is also a renewed emphasis on preconception counseling, as well as other recommendations for women seeking pregnancy.
Reference:
- Lilli Health. https://lillihealth.com/. Accessed July 5, 2024.
For more information:
Ali Chappell, PhD, MS, RD, can be reached at achappell@lillihealth.com.
Anuja Dokras, MD, MHCI, PhD, can be reached at adokras@pennmedicine.upenn.edu.