Background: Central centrifugal cicatricial alopecia (CCCA) is a primary lymphocytic scarring alopecia which occurs predominantly in Black middle-aged women.1,2 The benefits and prevalence of shared decision-making (SDM) models for CCCA patients have yet to be studied. Our study investigates the role of SDM in the management of CCCA.
Methods: SDM processes were measured by the SDM-Q9, the Decisional Regret Scale (DRS), and the Patient Control Preferences Scale (CPS). Members of the Scarring Alopecia Foundation (n=1192) were recruited between June and August of 2023 via a one-time email sent via the Scarring Alopecia Foundation listserv.
Results: 87 respondents were documented. The CPS (n=87) suggested that most patients (47.6% ; n=41) prefer to share responsibility with their doctor for treatment decisions. The SDM Q-9 (Scored 0-45) and DRS [scored 0-100] demonstrated mean scores of 27.5 (11.5) and 38.4 (19.4), with higher and lesser scores, respectively, demonstrating patient satisfaction with SDM.
Discussion: SDM is useful in complex decision-making when there are several medically reasonable alternatives available for treatment. Patients with CCCA may benefit from this model, and investments in resources such as patient decision aids and SDM training for further dermatologists will aid integration into clinical practice.
Limitation: There was no method of verifying the CCCA diagnosis for respondents. Additionally, most respondents had tertiary education, which limits generalizability to the wider population. Lastly, the low survey response rate (9.7%) predisposes to nonresponse bias.
Conclusion: The CPS, SDM-Q-9, and DRS suggest that patients with CCCA prefer to be involved in management decisions.
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