Patient Perspectives on Diagnostic Delay and Inadequate Treatment: A Qualitative Research of Endometriosis in India

Aims and background: Endometriosis, a disease affecting 1 in every 10 women of reproductive age, dates as far back as 1690.Despite its prevalence, endometriosis is often underdiagnosed or misdiagnosed, thus earning itself the name of "missed disease".This leads to detrimental effects such as significant financial burden, increased healthcare utilization, and decreased quality of life in low and middle income countries with a high out-of-pocket expenditure.This study aims to explore the complexities surrounding endometriosis, focusing on factors contributing to diagnostic delays and inadequate treatment from the perspective of patients.Materials and methods: A literature review was conducted by running searches using predefined keywords.However, the absence of substantial patient-centered data within existing literature raised concerns regarding the authenticity and completeness of the research, prompting our team to organize a semi-structured qualitative study (SSQS) by conducting 24 online Focus Group Discussions (FGDs) over the span of 2 years, from 2022 to 2024.A total of 202 women with surgical and histological confirmation of endometriosis were included.Their discussions were recorded, converted to transcripts using the hand-code technique, analyzed via the ATLAS.titool, and interpreted using a grounded theory approach.Results: Two themes emerged from the analysis: Delayed diagnosis and poor disease management.The study further revealed gaps in awareness and societal stigma exacerbating the disease's burden, affecting patients physically and mentally, imposing financial strain, and harming personal and professional relationships. Conclusion:The identified themes were interrelated and highly affected by inadequate awareness and stigma, lack of specialized healthcare professionals, medical malpractice, and misinformation.Going forward, it is crucial to develop tailored, patient-centered strategies for endometriosis care that address both the physical symptoms and the complex psychosocial impacts.Clinical significance: This study highlights the need for improved medical protocols and healthcare policies to enhance the quality of life for women suffering from endometriosis in India.