Qualitative study of self-reported experiences of infertile women with polycystic ovary syndrome through on-line discussion forums

Authier, Magali; Normand, Caroline; Jego, Maéva; Gaborit, Bénédicte; Boubli, L.; Courbière, Blandine

doi:10.1016/j.ando.2020.07.1110

Cited by 15 publications

(12 citation statements)

References 27 publications

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“…They experienced pessimistic, mocking behavior during treatment, which made them stressed and more discouraged. Even if they did not get enough support from their family members and they might be isolated from their families [ 18 ]. Therefore, they experience humiliation from society.…”

Section: Introductionmentioning

confidence: 99%

Prevalence and associated risk factors for mental health problems among patients with polycystic ovary syndrome in Bangladesh: A nationwide cross—Sectional study

et al. 2022

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Background Polycystic ovary syndrome (PCOS) is a common female reproductive endocrine problem worldwide. The prevalence of mental disorder is increasing among PCOS patients due to various physical, psychological, and social issues. Here we aimed to evaluate the mental health and associated factors among women suffering from PCOS in Bangladesh. Methods We performed an online cross-sectional survey among 409 participants with PCOS using Google Forms. We used structured questionnaires to collect socio-demographic information and lifestyle-related factors. Also, we applied patient health questionnaire (PHQ-9), generalized anxiety disorder (GAD-7) scale, and UCLA loneliness (UCLA-3) scale for psychometric assessment of the participants. Finally, we applied several statistical tools and performed data interpretations to evaluate the prevalence of mental health disorders and associated factors among patients with PCOS in Bangladesh. Results Prevalence of loneliness, generalized anxiety disorder and depressive illness among the women with PCOS were 71%, 88%, and 60%, respectively. Among the mental illness, mild, moderate, and severe cases were 39%, 18%, and 14% for loneliness; 39%, 23% and 26% for generalized anxiety disorder; and 35%, 18%, and 7% for depressive disorder. According to the present findings, obesity, financial condition, physical exercise, mealtime, food habit, daily water consumption, birth control method, and long-term oral contraceptive pills contribute to developing mental health disorders among females with PCOS in Bangladesh. Conclusion According to present study results, high proportion of women suffering from PCOS experience several mental disorders in Bangladesh. Although several socio-demographic and lifestyle-related factors were found to be associated with the poor mental health of women with PCOS; however, PCOS itself is a condition that favors poor physical and psychological health. Therefore, we recommend proper treatment, public awareness, and a healthy lifestyle to promote the good mental health of women suffering from PCOS.

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Section: Introductionmentioning

confidence: 99%

Prevalence and associated risk factors for mental health problems among patients with polycystic ovary syndrome in Bangladesh: A nationwide cross—Sectional study

et al. 2022

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“…Participants also stressed that the general community needed to be made more aware of conditions like PCOS so that they can be of support; the most common descriptors used by participants to describe their lives with PCOS were “isolating” and “alone.” Several other studies have also found women feeling isolated and alone having PCOS [ 29 , 31 , 33 , 53 , 61 ].…”

Section: Discussionmentioning

confidence: 97%

“…A recent qualitative study has recommended for PCPs to be more involved with PCOS management [ 31 ]. Little is known about levels of knowledge of PCOS in primary care.…”

Section: Discussionmentioning

confidence: 99%

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What can be done to improve polycystic ovary syndrome (PCOS) healthcare? Insights from semi-structured interviews with women in Canada

Ismayilova

Yaya

2022

BMC Women's Health

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Background Polycystic ovary syndrome (PCOS) is a common and perplexing condition affecting metabolic, reproductive, cardiovascular, and psychological health in women. Previous studies point to widespread dissatisfaction and frustration in women with the information and care they receive. Studies have found delays with the diagnosis of PCOS and gaps in knowledge in physicians regarding the diagnosis and management of PCOS. Little has been heard from women on what they think can be improved with PCOS care, especially in Canada. This qualitative study explores women’s experiences navigating the healthcare system and their insights on what could be improved based on their lived experiences. Methods Twenty-five participants were interviewed remotely over the phone by the first author between October and December 2018.Interviews were semi-structured and in-depth. Data were analyzed using thematic analysis and interpretive description methodology. Results Twenty-five in-depth interviews conducted with participants across Canada (ages 18–63) revealed three overall areas in need of improvement. First, women emphasized a need for greater knowledge and awareness of PCOS in primary care physicians (PCPs) as well as the need for the medical community to prioritize women’s health. Second, participants advocated for greater PCOS awareness and de-stigmatization in the general community and in women and girls, and any individuals with female reproductive systems. Third, participants brought up several needed resources, such as the need for more PCOS research to be funded and undertaken, more PCOS specialists and experts to be available, credible doctor-provided information (e.g., pamphlets, websites), and age-specific support groups and mental health supports to be available. Participants were generally unaware of existing PCOS organizations and brought up the need for established PCOS organizations to aid in the training and retraining of doctors and local awareness-building in communities. Conclusions Participants believed that PCPs in Canada needed to be well-versed on how to diagnose and manage PCOS to prevent delays in diagnosis and provide easier access to care. Further, greater awareness and de-stigmatization in the general community are needed so women can identify symptoms early and have access to support from those around them. Overall, PCOS may be an overlooked and under-prioritized condition, both in the Canadian healthcare system and general community.

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“…25 A recent, post-2018 International PCOS Guideline survey and semistructured interview from the United Kingdom of 323 participants noted that lag time to diagnosis of PCOS was only 6 to 12 months 26 as opposed to previous reports of more than 2 years. 7 However, despite the 2018 International PCOS Guideline recommendations, patients continue to miss comprehensive discussion of comorbidities, 26 weight loss recommendations, 23,26 and enquiry about their mental health. 23,26 In a semistructured interview study from Canada, patients felt PCOS to be stigmatizing, as weight gain, acne, and hirsutism were highly visible, undesirable attributes that separated them from the female ideal of today's society.…”

Section: Current Communication Needs In Individuals With Pcosmentioning

confidence: 99%

Bridging the Information Gap in Polycystic Ovary Syndrome: A Narrative Review with Systematic Approach

Tay,

Williams,

Mousa

et al. 2023

Semin Reprod Med

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Polycystic ovary syndrome (PCOS) is a complex endocrinopathy with wide-ranging implications for affected individuals. Literature has shown that patients with PCOS are dissatisfied with the health information provided to them and that healthcare professionals lack adequate knowledge. In this narrative review with systematic approach, we explored the unmet information needs in PCOS care for both patients and healthcare professionals. A comprehensive search of databases yielded 41 relevant studies, predominantly of observational and qualitative design. Adults and adolescents with PCOS desire wide ranging health information and express a keen desire for weight management guidance. Importantly, discussions surrounding weight should be addressed knowledgeably and without weight bias. Therefore, healthcare professionals should facilitate access to comprehensive evidence-based resources. Lack of information drives PCOS-related online searches. Referral to support groups that promote individual agency in the self-management aspects of PCOS can furthermore guide patient resource acquisition. Patients prefer guidance from professionals that understand the psychosocial complexity of PCOS and can empathize with experiences of stigmatization or even marginalization depending on the cultural context of the individual. The findings informed the 2023 International Evidence-Based PCOS Guideline, recommending patient-centered communication, evidence-based information resources, and culturally sensitive approaches to optimize PCOS care.

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Qualitative study of self-reported experiences of infertile women with polycystic ovary syndrome through on-line discussion forums

Cited by 15 publications

References 27 publications

Prevalence and associated risk factors for mental health problems among patients with polycystic ovary syndrome in Bangladesh: A nationwide cross—Sectional study

Prevalence and associated risk factors for mental health problems among patients with polycystic ovary syndrome in Bangladesh: A nationwide cross—Sectional study

What can be done to improve polycystic ovary syndrome (PCOS) healthcare? Insights from semi-structured interviews with women in Canada

Bridging the Information Gap in Polycystic Ovary Syndrome: A Narrative Review with Systematic Approach

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