Unmet Needs of Endometriosis Patients with Respect to Health Care Services: A Qualitative Study Using a Patient Training Workshop

Abstract

Background/Objectives: Nowadays, endometriosis is considered a chronic inflammatory disease and has a very high impact on women who suffer from it due to the symptoms of pain and infertility, as well as the delay in diagnosis. The objective of our study was to identify the unmet needs of endometriosis patients and to explore opportunities for improvement with respect to health care services for endometriosis patients using a patient training workshop. Methods: A qualitative study with a participatory action research method was performed. A two-day training workshop for patients was designed to allow them to develop the confidence and skills necessary to participate in the identification of unmet needs in their healthcare. Eighteen patients were selected by purposive sampling. After each training session, a debate on a topic of interest was also organized among all the participants. Data collection involved the nominal group technique with triangulation of data for their analysis. Results: The suggestions brought up during the sessions were divided into four areas of work: improvement of patient care, information and communication, training of professionals/patients, and encouragement of patients to participate. This study is a successful novel example of co-production with endometriosis patients and health care professionals and provides valuable information for future improvements in the care of these patients. Conclusions: Co-production between endometriosis patients and healthcare professionals allowed us to identify unmet needs in their healthcare.

Keywords: endometriosis; healthcare; patients’ experiences; training program; training workshop; unmet needs.