The construction and validation of a health-related quality of life measure for women with endometriosis

Rizwana Roomaney
2017 · W2616458360
dissertation OA: green CC0 ⤵ 1 in-corpus citation
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⚙ AI-generated summary by claude@2026-06, 2026-06-07 ⓘ

This study developed and validated the Endometriosis Health Profile 30, a 64-item measure of health-related quality of life derived from qualitative interviews with endometriosis patients.

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⚙ AI-generated deep summary by claude@2026-06, 2026-06-07 ⓘ

This study constructed and validated a health-related quality of life (HRQoL) measure specifically for women with endometriosis using an exploratory sequential mixed-methods design. In the qualitative phase, in-depth semi-structured interviews were conducted with 25 diagnosed women, and thematic analysis identified 11 HRQoL-related themes; in the quantitative phase, item reduction via psychometry expert review, relevance review by five endometriosis experts, and readability piloting led to a 64-item instrument, with item analysis removing 16 low-performing items and exploratory factor analysis yielding an eight-dimension structure. The resulting Stellenbosch Endometriosis Quality of Life (SEQOL) measure showed excellent internal consistency (Cronbach’s α = .92; subscales .72–.88) and “promising validity” based on correlations with other questionnaires. A limitation explicitly implied by the initial validation is that it is described as initial, with the main psychometric work relying on factor structure and internal consistency rather than broader external validation. This paper is centrally about endometriosis — it develops and validates the SEQOL HRQoL measurement instrument for women with endometriosis.

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Abstract

The purpose of this study was to construct and validate a health-related quality of life (HRQOL) measure for patients with endometriosis.The study employed an exploratory, sequential mixed methods research design, consisting of a qualitative phase, followed by a quantitative phase.The study consisted of three aims.The first aim was to describe and understand the QOL-related experiences of women with endometriosis.This qualitative phase of the study involved in-depth, semi-structured interviews with 25 women diagnosed with endometriosis.I recorded and transcribed the interviews.I used thematic analysis to code the data and identify themes.Eleven themes emerged from the data, namely psychological functioning, sexual functioning, financial impact and considerations, healthcare and medical treatment, reproductive functioning, information and knowledge, interpersonal functioning, menstrual characteristics, occupational functioning, somatic features and physical functioning.The second aim of the study was to construct items for the instrument based on data collected during the first phase.The initial item pool consisted of 314 items.I then consulted with two experts in psychometry, who provided feedback relating to the clarity, conciseness, wording and ambiguity of items.This process resulted a reduced pool of 184 items.I asked five endometriosis experts to review the items in terms of relevance.Items that the experts regarded as highly relevant were retained in the measure and items that were not regarded as highly relevant were removed from the measure.The review resulted in the retention of 64 items.I piloted these items among seven women with endometriosis in order to assess the readability of the items.The final aim of the study was to determine the test reliability, validity and factor structure of the measure.This formed the quantitative component of the study.I administered the 64-item HRQOL measure, Endometriosis Health Profile 30, Short Form Health Survey,

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Outcome instruments

EHP-30

Condition tags

endometriosis

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