What should we be studying? Research priorities according to women and gender-diverse individuals with sexual interest/arousal disorder and their partners

Abstract

Background Sexual interest/arousal disorder (SIAD) is one of the most common sexual problems for women. In clinical research, there are often misalignments between the research priorities of patients and researchers, which can negatively impact care, and gender-diverse individuals are often excluded from research. Inclusion of patient perspectives when establishing research priorities may help to reduce these gaps; however, the research priorities of couples coping with SIAD remain unclear. Aim Identify the research priorities of women and gender-diverse individuals with SIAD and their partners. Methods In an online survey, couples coping with SIAD provided consent and responded to an open-ended question asking them to list the top 3 things they think are important for researchers to focus on related to couples coping with low sexual desire. A team-based content analysis was conducted to identify themes and their frequency of endorsement. Outcomes An author-developed open-ended question. Results Analysis of 1279 responses (n = 667 from women and gender-diverse individuals with SIAD, n = 612 from partners) resulted in our identification of 6 main themes: general causes, general treatment and coping, biophysiological, relationship, psychological, and environmental/contextual. Additionally, we identified 4 sub-themes within each of the latter 4 main themes: general, cause, treatment, and impact. For women and gender-diverse individuals with SIAD, their partners, and specifically gender-diverse participants, the 3 most endorsed themes were psychological general factors (24.3%, 21.2%, 24.3%; eg, stress and the link between SIAD and anxiety), relationship general factors (15.7%, 13.2%, 18.6%; eg, relationship length and communication on sexual desire), and biophysiological general factors (12.3%, 12.4%, 14.3%; eg, research on medications and hormones). Clinical Implications Clinical researchers should consider the research priorities of couples coping with SIAD to ensure their work aligns with the needs of the affected population. Strengths and Limitations This study is the first to identify the research priorities of both women and gender-diverse individuals with SIAD and their partners. Most participants identified as heterosexual, North American, and of middle to high socioeconomic status; results may not generalize. Responses were sometimes brief and/or vague; interpretation of these responses was therefore limited and may have required more contextual information. Conclusion Findings suggest that women and gender-diverse individuals with SIAD, their partners, and gender-diverse participants have similar research priorities that are consistent with a biopsychosocial approach to research. Heterogeneity of responses across themes supports a multidisciplinary, patient-oriented approach to SIAD research.