Adaptation of the MQ6 Menopause Assessment Tool for Women With Sickle Cell Disease: A Preliminary Study

ABSTRACT Background Women with sickle cell disease (SCD) face unique health challenges, including earlier onset of menopause and difficulty distinguishing menopausal symptoms from those related to SCD. Despite increasing life expectancy in this population, menopause screening remains largely absent from routine care. Objective This study aimed to adapt an existing menopause screening tool for women with SCD, addressing the need for clinical relevance and symptom overlap, using Participatory Action Research (PAR) combined with the ADAPT‐ITT implementation framework as a foundational step toward future validation. Methods The study was conducted at a single comprehensive Sickle Cell Center in the United States. Using the PAR approach, patients, healthcare providers, and a community advisory board were engaged throughout the adaptation process. The ADAPT‐ITT model guided the systematic modification of the Menopause Quick 6 (MQ6) tool to incorporate SCD‐specific considerations. Adaptation was informed by literature and chart reviews, cognitive interviews, pilot testing, and stakeholder feedback. Iterative revisions were made over three drafts. Results The final SCD‐adapted MQ6 included added items addressing birth control, surgical menopause, and SCD‐symptom overlap. Cognitive interviews with 20 patients revealed nine major themes informing revisions. In pilot testing ( n = 37), 86.25% of patients reported high satisfaction, with most finding the tool easy to complete and relevant to their experiences‐‐though further refinement is needed before formal psychometric validation. Conclusion This study demonstrates the effectiveness of combining PAR with the ADAPT‐ITT model to tailor health assessment tools for specific populations. The preliminary SCD‐adapted MQ6 screener is a promising tool for menopause symptom screening in women with SCD, with potential to improve clinical care and inform broader implementation efforts.