Abstract
BackgroundEndometriosis is a chronic disease impacting on many aspects of a woman’s life. Because of the chronic and recurring nature, many of the impacts of endometriosis could be missed using existing questionnaires which focus on recent events. Therefore, a questionnaire with a long-term perspective is necessary. This study aimed to develop and evaluate a questionnaire to measure the long-term impact of endometriosis on different aspects of women’s lives.MethodsThrough a methodological design, phase 1 was qualitative and phase 2 was a cross-sectional study. The original 100 EIQ items were developed based on results from an earlier qualitative study and literature review. Through a process of assessing face and content validity this was reduced to 66 items. The psychometric properties of the final 63 item EIQ were evaluated through a web-based survey with data from 423 responders with a self-reported surgically-diagnosed endometriosis.ResultsParticipants were aged 16-58 years. Exploratory factor analysis of a 66-item EIQ was established with 423 responders. The final 63-item EIQ contained six dimensions including: 33-item physical-psychosocial; 3-item fertility; 7-item sexual; 11-item employment; 6-item educational; and 3-item lifestyle. Cronbach’s alpha of 0.99 for the whole 63-item EIQ, and 0.84 to 0.98 for the dimensions suggests a very good reliability. High positive correlations between the EIQ and the EHP-5 (altered recall period) indicated good evidence of concurrent validity. High intra-class correlations indicated very good test-retest reliability.ConclusionsThe EIQ, as a disease-specific questionnaire, could be used to provide a better understanding of the impact of endometriosis on different aspects of life, to better meet the needs of women. We recommend additional studies to establish validity evidence for the EIQ, including studies in other countries and languages.
Highlights
Endometriosis is a chronic disease impacting on many aspects of a woman’s life
Moradi et al BMC Women's Health (2019) 19:64 (EHP-30) [10] and its subset, the EHP-5 [11], Endometriosis Treatment Satisfaction Questionnaire (ETSQ) [12], daily electronic Endometriosis Pain and Bleeding Diary (EPBD) [13], and ‘Patient-Centred Endometriosis’ questionnaire of Endo Care Questionnaire (ECQ) [14] but the EHP-30 is currently the disease-specific questionnaire to measure the Health-Related Quality of Life (HRQoL) with the strongest validity evidence [9]
Data from the remaining 423 responders were used to assess the psychometric properties of the Endometriosis Impact Questionnaire (EIQ)
Summary
Endometriosis is a chronic disease impacting on many aspects of a woman’s life. Because of the chronic and recurring nature, many of the impacts of endometriosis could be missed using existing questionnaires which focus on recent events. This study aimed to develop and evaluate a questionnaire to measure the long-term impact of endometriosis on different aspects of women’s lives. Due to the chronic, recurring nature of endometriosis, many disease impacts could be missed, so a multi-dimensional questionnaire with a longer-term perspective is necessary to provide a better understanding. We have developed and evaluated the psychometric properties of a questionnaire to measure the longer-term impact of endometriosis on different aspects of women’s lives
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