Understanding the Menopause Transition in Sickle Cell Disease: An Interim Analysis of the Implementation of the Adapted Menopause Transition Questionnaire

Women with sickle cell disease (SCD) face significant health challenges, and menopause can further impact their quality of life. Additionally, women with SCD are at risk for early menopause, which can have a profound physical, emotional, and psychological consequences. Despite this, little research has explored menopause symptoms, healthcare utilization, and potential for early menopause in this population. To address the lack of research in this area, we adapted the existing menopause questionnaire (MQ6) for use in SCD patients. This adapted tool aims to capture the unique experiences of women with SCD during the menopause transition. The objective of this study was to pilot implementation of the menopause transition questionnaire (MTQ) in a sickle cell center and conduct a 3-month interim analysis implementation and clinical outcomes.

Implementation of the MTQ was piloted at the University of Illinois Sickle Cell Center in April 2024. The adapted MTQ was administered to females aged 30-65 years who had a routine clinic visit with the sickle cell specialist. A chart review was done for each patient to determine Hb subtype. Additional data points were collected for the twelve months prior to MTQ administration to assess healthcare utilization [emergency room visits, acute care visit, and hospitalization], chronic opioid use, and sickle cell disease modifying therapy. Patients who were pregnant or with a history of hematopoietic stem cell transplant were excluded from the study.

Over the 3-month period, 87 patients were eligible for the study. We enrolled 57 females and administered the MTQ at baseline (65.5% of the eligible participants enrolled). Due to space and time constraints, the MTQ was administered in-person to 24 patients, using a paper form available during the triage waiting period of their clinic visit. It took an average of 3-5 minutes for participants to complete the questionnaire. An additional 33 patients were reached by phone later in the same week of their clinic appointment. Unfortunately, we could not reach 30 eligible patients for in-person or remote completion. The remote administration allowed patients to discuss additional menstrual health issues voluntarily with the interviewer.

Analysis of the MTQ indicated that prevalent symptoms among our patients were comparable to those reported by Black women in the Study of Women’s Health Across the Nation (SWAN): hot flashes (51% vs. 46% in SWAN), sleep disturbances (37% vs. 35% in SWAN), changes in menstrual periods (35% vs. 33% in SWAN), joint pain (33%), mood disturbances (23% vs. 27% in SWAN), bladder issues (23%), and vaginal health issues (12%). Older patients had a higher likelihood of experiencing hot flashes (46.5 years vs. 41.3 years, p<0.05). Fewer symptoms were reported among patients using hormonal birth control, as expected. There were no significant differences in healthcare utilization, hydroxyurea use, or chronic opioid use between those with and without vasomotor symptoms of menopause.

The interim results of this study highlight the experiences of a unique population with a chronic disease often with high healthcare utilization and chronic pain which worsens with aging. Implemented at the University of Illinois Sickle Cell Center, the MTQ identified prevalent symptoms such as hot flashes, sleep disturbances, changes in menstrual periods, joint pain, mood disturbances, bladder issues, and some vaginal health issues. These findings underscore the need for targeted interventions and support for women with SCD during menopause, highlighting the MTQ's utility in clinical settings and the importance of continued research in this area. The overlap of sickle cell disease and menopause symptoms can be a unique experience as the vasoocclusive symptoms, chronic pain and opioid withdrawal mimic menopausal symptoms. The overlap can cause confusion and delay care, and years of patient anxiety. We plan to continue recruiting additional patients for the next 9 months and hope to implement the MTQ as a standard of care at our center to improve peri-menopausal management in this population.