Dataset Information

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.

SUBMITTER: Kaur I

PROVIDER: S-EPMC8351971 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:PCOS is a complex genetic disease reflecting the interplay of susceptibility genes and environmental factors. The cardinal reproductive feature of the syndrome, hyperandrogenemia, appears to play a direct role in the pathogenesis of the associated metabolic abnormalities. Male as well as female first-degree relatives have reproductive and metabolic phenotypes including increased prevalence rates of type 2 diabetes (T2D), metabolic syndrome (MBS) and other risk factors for cardiovascular disease (CVD). Northwestern University (NU) investigators lead a team that has extensive experience in phenotyping PCOS and in the genetic analysis of complex diseases including genome-wide association study (GWAS). Together with an expert group of collaborators from the Hershey Medical Center, and The University of Chicago, we have conducted a GWAS to identify PCOS susceptibility alleles using a large cohort of extensively and consistently phenotyped PCOS cases. Population controls for this study come from the NUgene project described below. NUgene project: In 2002, Northwestern committed to the development of a DNA repository to serve as a platform for the identification and validation of genotype-phenotype associations that will impact healthcare. The NUgene Project is a repository with longitudinal medical information from participating patients at affiliated hospitals and outpatient clinics from the Northwestern University Medical Center. Participants' DNA samples are coupled with data from a questionnaire (2 versions were used, 1 before and 1 after February 2006, both are included) and continuously updated data from our Electronic Medical Record (EMR) representing actual clinical care events. Northwestern has a state-of-the art, comprehensive inpatient and outpatient EMR system of over 2 million patients. NUgene has broad access to participant data for all outpatient visits as well as inpatient data via a consolidated data warehouse. NUgene participants consent to distribution and use of their coded DNA samples and data for a broad range of genetic research by third-party investigators.