Background: Surgical registries are valuable tools for tracking outcomes. Incorporating patient input allows registries to address the interests of this important stakeholder group.
Objective: The aim of this study was to identify a list of "patient-selected complications" and to explore the relevance to patients of previously published physician-identified complications.
Methods: Delphi process with 2 rounds using patients to identify complications that are highly relevant for tracking by the proposed American College of Mohs Surgery (ACMS) National Registry.
Results: Complications that physicians identified as highly relevant (death from any cause, hospitalization related to the procedure, functional loss attributable to surgery, bleeding requiring a second procedure, and surgical site infection) were each rated as highly relevant by patients. Patients also identified scarring, recurrence, and wound dehiscence as highly relevant outcomes for registry tracking.
Conclusion: Incorporating patient input into the ACMS registry design process identified 2 additional complication outcomes to be considered for inclusion within the registry-wound dehiscence and scarring. Patient input also corroborated the relevance of complications previously identified by ACMS physicians for inclusion in the registry. Furthermore, the importance of tracking local recurrence was confirmed from a patient-centered perspective.