Development of a shared decision-making tool in vitiligo: an international study.

BACKGROUND Shared Decision-Making tools (SDMt) are visual tools developed to promote joint medical decision-making between physician and patient. In dermatology, there is a paucity of such tools. OBJECTIVE To develop and validate a SDMt in non-segmental vitiligo to be used in specialized consultation for vitiligo. METHODS Prospective, cross-sectional study (March, 2019 to March, 2020). We first conducted a qualitative study of topics discussed by patients and clinicians during therapeutic decision in the setting of a specialized consultation for vitiligo using an anchored-theory method, which allowed us to conceptualize the SDMt. The pertinence of the SDMt was evaluated by a working group of multidisciplinary health workers and patients with vitiligo and consensus on the final tool was obtained through an e-Delphi method. RESULTS We recruited 30 vitiligo patients for the qualitative study which identified 91 topics related to the therapeutic decision. The hierarchical clustering analysis confirmed the distribution of these topics in two subgroups (treatment goals and priorities in general and topics specific to each treatment). A consensus (e-Delphi) form a multidisciplinary group was used to develop the SDMt. The tool comprised eight A5 cards which addressed: 1/ Face repigmentation 2/ Body repigmentation (limited area), 3/ Body repigmentation (extended area), 4/ Partial or complete depigmentation, 5/ Coping with the disease, 6/ Stabilisation of the disease, 7/ Maintaining Repigmentation and 8/ Disease Information. Cognitive interviews confirmed satisfaction, readability and usefulness of the SDMt. The SDMt was then translated and culturally validated in English. CONCLUSION We have developed a tool for shared decision making in non-segmental vitiligo which we translated and cross-culturally validated in a US vitiligo patient population to ensure its generalizability.