Development of a New Care Pathway for Depression and Anxiety in Adult‐Onset Isolated Dystonia

Abstract

ABSTRACTBackgroundRecently, we identified barriers and facilitators to the screening and treatment of depressive and anxiety symptoms in adult‐onset isolated dystonia (AOID). These symptoms are common, functionally impairing, and often underdetected and undertreated.ObjectivesTo develop a care pathway for mood symptoms in AOID.MethodsWe used a multistep modified Delphi approach to seek consensus among healthcare professionals with experience of AOID on the screening, diagnosis, and treatment of mood symptoms. A combination of face‐to‐face meetings and online surveys was performed from 2019 to 2020. We created the survey and then reviewed with stakeholders before 2 rounds of Delphi surveys, all of which was finally reviewed in a consensus meeting. A purposive sample of 41 expert stakeholders from 4 Canadian provinces, including neurologists, nurses, psychiatrists, psychologists, and family physicians, was identified by the research team.ResultsThe Delphi process led to consensus on 12 statements that operationalized a pathway of care to screen for and manage depression and anxiety in people with AOID. Key actions of the pathway included yearly screening with self‐rated instruments, multidisciplinary involvement in management involving local networks of providers coordinated by movement disorders neurologists, and access to educational resources. The Delphi panel indicated the 2 core steps as the documentation of the most recent screening outcome and the documentation of a management plan for patients who were positive at the last screening.ConclusionsThis new care pathway represents a potentially useful intervention that can be used to build an integrated model of care for AOID.