Patient satisfaction and experiences with menopause care for people with autoimmune diseases: an international mixed-methods study from the Menopause MATTERs Project

Abstract

Objectives: To understand the experiences and satisfaction with menopause care for women with autoimmune diseases. Study design: Exploratory, mixed-methods study (between December 2024 and March 2025) using an online survey for peri-, menopausal, and postmenopausal individuals (≥18 years), with and without confirmed autoimmune diagnoses. Survey participants were purposively selected for semi-structured interviews. Main outcome measures: Satisfaction with menopause care as measured across nine (co-designed) domains of: availability and access to clinicians, clinicians' knowledge, involvement in decision-making, consideration of primary disease, clinicians' empathy for physical and mental health symptoms, continuity and follow-up support, information received, flexibility in treatment. Other outcomes included qualitative themes from interviews with patients, types of clinicians consulted for menopause and reasons for seeking private menopause care and process measures of access to care. Results: Satisfaction was significantly lower amongst women with autoimmune diseases (n = 3754) than those without autoimmune diseases (n = 480) across the nine metrics studied (p < 0·001). Qualitative analysis identified three themes: (1) menopause care was reactive and dependent on patients advocating for themselves; (2) there was fragmented and siloed care between specialties, with limited integration of the intersection between autoimmune diseases and menopause; and (3) mental health concerns often overshadowed menopause and autoimmune disease symptoms. Conclusion: The menopausal transition must be recognised as a unique stage in the management of autoimmune diseases. Our study suggests that menopause advice and care would benefit from increased clinician proactivity, empathy and knowledge. Greater evidence to inform clinical guidance and interdisciplinary training and integration is required