Treatment pathways traversed by polycystic ovary syndrome (PCOS) patients: A mixed-method study

Abstract

Background This study was undertaken to explore the treatment-seeking pathways traversed by women with PCOS and elicit their behavior, experiences and perspectives regarding it. Methods This concurrent mixed-method study was conducted on 18–40 years old women diagnosed with PCOS at the Gynecology outpatient department, PGIMER, Chandigarh, India. Of the 275 women, who were administered a questionnaire to elicit their treatment-seeking behavior, 62 willing participants were subjected to in-depth interviews. Quantitative responses were descriptively analyzed and presented as count, proportion, mean or median. Framework analysis was performed for the qualitative data. The findings of both types of data were triangulated to construct the pathways to treatment traversed by PCOS patients. Findings Many (~45%) respondents had no information regarding PCOS. Only 9.1% received some information from their doctors. Though the internet was the primary source of information for 37.5% of respondents, they expressed dissatisfaction with the quality of information. Multiple health care agencies were consulted by most (85.8%) of the respondents. Allopathy was the preferred choice of treatment. The average delay in initiating the treatment was 3 months. The major reasons for this were ignorance, the concept of ‘normality’ and ‘endurance’. Deviations from the normal self (like irregular-menstruation, obesity, hirsutism, infertility) were the concern that led them to consult a doctor. They were also dissatisfied with the treatment due to a late diagnosis, lack of relief, taboo, side-effects, expenses involved and the need for repeated laboratory tests. Participants’ course of treatment was influenced by the interplay of individual, distress, health-system, and social-economic factors. Conclusions Women with PCOS were dissatisfied with the quality of the information and treatment received. There were treatment delays. The patients consulted multiple health agencies, including indigenous therapies, in the hope of relief. The findings provide an empirical basis on points to focus on for building better coping strategies for managing the condition.