Endometriosis is a serious yet understudied medical condition impacting hundreds of millions of women around the world. We used a mixed methods approach to better understand provider’s perceptions of the disease, as well as patient’s experiences with the disease. The study consisted of two parts. The first was a quantitative analysis of providers, in which participants completed a brief survey to assess their perception of the prevalence of endometriosis. Fifty-three providers completed surveys. Analysis of the survey data included calculating means and frequencies of each item, as well as determining providers’ prevalence estimates of endometriosis and whether this estimate varied by sub-specialty, number of years in practice, and gender. All quantitative analyses were conducted using SPSS. Survey results indicated that only six of the 53 providers accurately identified the prevalence of endometriosis. The second part of the study involved in-depth, qualitative interviews with both providers and patients. Four providers and 12 patients participated in the interview process. For the provider and patient interviews, code books were created and used to analyze the responses to identify recurring themes. Emergent themes in the provider interviews included, limited training about endometriosis, the difficulty of making a diagnosis, referral process, patient-provider dynamic, and the importance of multidisciplinary collaboration. Emergent themes from patients included, the mental aspect of the disease, lack of confidence in the healthcare system, concerns about fertility, self-advocacy, quality of life, being adverse to hormonal therapies, feelings of dismissiveness by providers, the financial impact of the disease, limited treatment options, and lack of awareness. Findings of this study highlighted some of the major issues which currently contribute to its public health burden, and can allow clinicians to foster change in their current practice with the aim of increasing awareness, issuing more timely and accurate diagnoses, and a call to action for investment and funding for research that will move the field forward and ultimately improve patient outcomes.
Zale, MPHc, Madalene; Leader, PhD, Amy; LaNoue, PhD, Marianna; and Russo, MD, Stefani, "A Mixed Methods Study of Endometriosis: Patient Experience and Provider Awareness" (2018). Master of Public Health Capstone Presentations. Presentation 254.