Feelings and expectations in endometriosis: Analysis of open comments from a cohort of endometriosis patients.

Introduction: Endometriosis symptoms may have a negative effect on health-related quality of life (HRQoL). Analyses of open comments are known to be a key source of information and support. The authors aimed to analyse open comments associated with a validation scale study, in order to ascertain whether the questionnaires allowed an adequate exploration of patient preoccupations and in so doing define important quality of life themes not assessed in HRQoL scales.

Material And Methods: Analysis of open comments, following two questionnaires (SF-36 and EHP-30) as part of a national study evaluating the EHP-30, was performed. Questionnaires were distributed online, via a link to the RedCap Internet platform. The association EndoFrance, a support group for endometriosis patients, notified women of the launching of the study. Women were asked to complete the questionnaire and had the opportunity to comment. Comments were gathered, coded systematically, and categorised by theme.

Results: Of the 1156 women who responded to the questionnaire, 913 (79.0%) declared having a confirmed surgical diagnosis of endometriosis, and 265 comments were analysed. Comments were classified in 20 themes. Correspondence between the themes and items for both questionnaires and the open comments was investigated for all topics, including those non-addressed by the questionnaires. 8 themes are not mentioned in both questionnaires, 9 themes are covered by EHP-30, two by SF-36 and only one by both.

Conclusion: Anonymous data collection and subsequent analysis proves to be an effective and practical way of obtaining patient opinion on their pathology. Analysis of comments may provide additional and useful information to the classical HRQoL Scale.