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

Summary Background Shared decision‐making tools (SDMt) are visual tools developed to promote joint medical decisions between physicians and patients. There is a paucity of such tools in dermatology. Objectives To develop and validate a SDMt for use in specialized consultation for vitiligo. Methods A prospective cross‐sectional study was carried out from March 2019 to March 2020. We first conducted a qualitative study of topics discussed by patients and clinicians during therapeutic decision‐making in the setting of a specialized consultation for vitiligo using an anchored‐theory method, which allowed conceptualization of the SDMt. The usefulness of the SDMt was evaluated by a working group of multidisciplinary health workers and patients with vitiligo. Consensus on the final tool was obtained through an e‐Delphi method. Results We recruited 30 patients with vitiligo for the qualitative study, which identified 91 topics related to therapeutic decision‐making. Hierarchical clustering analysis confirmed the distribution of these topics in two subgroups (general treatment goals and priorities, and topics specific to each treatment). The consensus of a multidisciplinary group was used to develop the SDMt. The tool was comprised of eight A5 cards, which addressed face repigmentation; body repigmentation (limited area); body repigmentation (extended area); partial or complete depigmentation; coping with the disease; stabilization of disease; maintaining repigmentation; and disease information. Cognitive interviews confirmed the satisfaction, readability and usefulness of the SDMt. The SDMt was then translated and culturally validated in English. Conclusions We developed a tool for shared decision‐making in nonsegmental vitiligo, which we translated and cross‐culturally validated in a US patient population with vitiligo to ensure its generalizability. What is already known about this topic? Therapeutic management in vitiligo is often challenging and requires long‐term adherence. Shared decision‐making tools (SDMt) are visual aids that may help patients better define what they would like to achieve in terms of treatment. In dermatology, there have been various decision support tools developed but none for vitiligo. What does this study add? We developed a SDMt that was tested in 30 French and 10 US adult patients with vitiligo who reported high satisfaction rates with the use of this tool during consultation. This SDMt for vitiligo may help patients better define h