Shared decision-making in central centrifugal cicatricial alopecia

Central centrifugal cicatricial alopecia (CCCA) is a primary lymphocytic scarring alopecia, which predominantly occurs in middle-aged Black women. The benefits and use of shared decision-making (SDM) models in patients with CCCA have yet to be studied. We conducted a cross-sectional survey to investigate the role of SDM in the management of CCCA. SDM processes were evaluated using the nine-item Shared Decision-Making Questionnaire (SDM-Q-9), the Decisional Regret Scale (DRS) and the Control Preferences Scale (CPS). Between June and August 2023, members of the Scarring Alopecia Foundation were emailed and invited to participate; n = 87/1192 members responded. The CPS responses suggested that most patients (48%, n = 41/87) preferred to share responsibility with their doctor for treatment decisions. The SDM-Q-9 (scored 0-45) and DRS (scored 0-100) demonstrated mean (SD) scores of 27.5 (11.5) and 38.4 (19.4), with higher and lower scores, respectively, demonstrating greater patient satisfaction with SDM. SDM is useful for patients involved in complex decision-making when several medically reasonable treatment alternatives are available. Patients with CCCA may benefit from this model, and investment in resources such as patient decision aids and SDM training for dermatologists will aid integration into clinical practice. Together, the CPS, DRS and SDM-Q-9 results suggested that patients with CCCA preferred to be involved in their treatment management decisions, regardless of their sociodemographic characteristics.