A Qualitative Study of Women's Experiences with Hypoactive Sexual Desire Disorder in the United States

Abstract

ABSTRACT Introduction Hypoactive Sexual Desire Disorder (HSDD) significantly impacts a woman's daily functioning and well-being (health-related quality of life, HRQoL) and is often undetected by the medical profession and dismissed by society. As a result, the profound and extensive impact of HSDD on the lives of women and their partners is underappreciated. Objective This qualitative study was conducted to identify defining symptoms and HRQoL impacts among women with HSDD. Methods Six virtual focus groups (90-minutes each) were conducted with 30 adult women to understand HSDD symptoms and HRQoL impacts. Two trained focus group moderators utilized a semi-structured interview guide to capture spontaneous and stated symptoms and impacts. All focus groups were transcribed verbatim, anonymized, coded by two independent researchers using Atlas.ti 9, and then analyzed employing a combination of semi-quantitative and qualitative data analytic methods to evaluate saturation. Elicited content was used to further refine a literature-derived HRQoL conceptual model of HSDD. Results A total of 15 pre-menopausal and 15 post-menopausal women participated in the focus groups between October 14 and 21, 2020. Participants reported a total of 10 symptom concepts during the focus group, including loss of spontaneous desire, sexual distress, disinterest in initiating sex, disinterest in engaging in sex, absence of pleasure, little to no sexy feelings, feeling asexual, sexual avolition, vaginal pain, and insomnia. The most frequently reported symptoms were loss of spontaneous desire (n=30, 100%) and sexual distress (n=23, 77%). A total of 41 impact concepts associated with HSDD across 9 domains were reported: partner impact, mental well-being, role functioning, social functioning, familial relationships, appearance, concentration, and overall quality of life and satisfaction with life. Women reported impairment to their mental well-being (n=30, 100%), partner relationship (n=29, 97%), overall quality of life (n=29, 97%), and life satisfaction (n=29, 97%), as well as described feeling stigmatized by healthcare providers, friends, and society as a whole (n=27, 90%). A literature-based conceptual model for HSDD was updated to reflect focus group results. Conclusions Women with HSDD report many relevant, important, and meaningful concepts that are inadequately evaluated in research and drug trials. HSDD profoundly and negatively impacts women's HRQoL. Greater awareness of these concepts, and the availability of HRQoL measures that accurately reflect symptoms and impacts are needed to “destigmatize” and improve medical care for women with HSDD. Disclosure Any of the authors act as a consultant, employee or shareholder of an industry for: AMAG Pharmaceuticals, Inc., Astellas, Dare, Duchesnay, Ovoca, Field Trip, Palatin Technologies, Pfizer, Materna, Maddora, TherapeuticsMD, Strategic Science Technologies, and Lupin.