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UBC Theses and Dissertations

Developing a patient-reported outcome measure for genito-pelvic dyspareunia Marshall, Nisha

Abstract

Dyspareunia affects between 8-22% of women worldwide and is an important contributor to decreased psychosexual health and quality of life. Dyspareunia is commonly categorized into deep and superficial subtypes due to well-established associations between pain location and underlying etiology. However, current dyspareunia assessment tools do not have sufficient validity evidence to differentiate between deep versus superficial location of pain. The objective of this study is to develop a patient-reported outcome measure (PROM) that independently assesses deep and superficial dyspareunia, as well as assesses psychosocial correlates of dyspareunia: the Deep and Superficial Dyspareunia Questionnaire (DSDQ). The DSDQ development consisted of 5 stages: item pool construction, item categorization, item review and revision, focus groups and cognitive interviews, and a final review. In the item pool construction stage, 59 pre-existing measures were referenced to develop 163 PROM items. In the item categorization stage, items were sorted within a conceptual framework which outlined domains for characteristics of pain (quality, timing, location, intensity) and psychosocial correlates of pain (how pain affects one’s behaviour, cognitions, affect, and sexuality). The item review and revision stage utilized a modified eDelphi process where 4 patient partners, 2 gynecologists, and 1 psychiatrist provided iterative and anonymous feedback on items. Upon completion of 2 eDelphi rounds, 23 items were added, 40 were modified, and 10 were excluded. Fifteen patient cognitive interviews, three patient focus groups (n=5, n=3, n=4), and one clinician focus group (n=2) were conducted in two rounds of interviews. Analysis of interviews followed a qualitative descriptive approach, which was assisted by NVivo. Analysis of cognitive interviews and focus groups provided a basis to inform modifications to the DSDQ and generated evidence for its construct and content validity. The final revision functioned as a final check of the DSDQ and was completed by 4 clinician-researchers and 2 patient partners. The DSDQ consists of 175 items that assess the characteristics and psychosocial correlates of dyspareunia. It will be used as a patient-centered and accessible way to describe dyspareunia in research and clinical settings to better inform diagnosis and treatment, as well as quantify changes in dyspareunia over time.

Item Citations and Data

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Attribution-NonCommercial-NoDerivatives 4.0 International