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

Abstract

Background: Recently, 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.

Objectives: To develop a care pathway for mood symptoms in AOID.

Methods: We 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.

Results: The 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.

Conclusions: This new care pathway represents a potentially useful intervention that can be used to build an integrated model of care for AOID.

Keywords: anxiety; care pathway; depression; dystonia; management; screening.

FIG. 1

Visual description of the care pathway for depressive symptoms in adult‐onset isolated dystonia (AOID). Patients with AOID will be screened at least every 6 months in the day(s) before the clinic visit using self‐rated scales (or clinician administered if preferred by the local neurologist and feasible). The illustrated flowchart refers to the use of the Patient Health Questionnaire–9 (PHQ‐9), 1 of a few self‐administered depression rating scales validated in the general population and suggested here for use as a screening instrument for depression in patients with AOID. Patients screening positive and expressing active suicidal behavior (or ideation) will undergo suicide risk triaging with a validated procedure (see Supplementary Material as example of approach) and referred, as appropriate, to acute mental health and/or the nearest emergency department (ED) or on‐call psychiatrist; local policies and procedures should be followed as dictated by the health authority and physician level of expertise. Patients screening positive are advised to fill out an additional self‐rating instrument measuring impairment or disability related to emotional problems (suggested instruments are the World Health Organization Disability Assessment Schedule 2.0 [WHODAS 2.0] and the Sheehan Disability Scale ³⁹ ). The grading of severity and impact of depression or anxiety (mild, moderate, or high severity) will be established considering, as illustrated in the flowchart, the screening instrument score, the score on the scale measuring impairment or disability, and the clinician's interview. During the same visit, movement disorders nurses will facilitate patients' access to educational tools and local support groups. Before selecting active interventions, movement disorders neurologists will review ongoing pharmacotherapy and evaluate the presence of alcohol or other psychotropic substance use (see box at the bottom left corner of the figure and the checklist in Box 1 of the main text for guidance). Neurologists will also discuss the patients' perception of improvement of depressive and anxiety symptoms at the peak of botulinum neurotoxin (BoNT) effect and, if feasible and appropriate, consider rescreening at mid‐BoNT cycle. If this rescreening confirms a clinically relevant improvement of depressive/anxiety symptoms, then it is advisable to rediscuss the management plan with the patient at the light of this responsiveness to BoNT, particularly if there had been a previous agreement to proceed with a different active intervention for depressive/anxiety symptoms. Moreover, neurologists might consider performing a diagnostic interview—particularly for cases of intermediate or moderate severity—to evaluate whether the patient fulfills diagnostic criteria for a specific comorbidity. This might help further monitoring and aid in the decision to refer to a psychiatrist, especially in case of symptom worsening. The grade of severity and impact will be used as a guide by the neurologist to develop a management plan. After that management plan has been outlined, movement disorders neurologists or nurses will complement the plan scheduling, as appropriate, telephone or in‐person follow‐up visits to monitor compliance with and response to the selected active intervention(s). MDC, movement disorders clinic; PTSD, posttraumatic stress disorder.

FIG. 2

Visual description of the care pathway for anxiety symptoms in adult‐onset isolated dystonia (AOID). The pathway overlaps significantly with the algorithm presented in Figure 1 for depressive symptoms, and the reader is referred to Figure 1 for general principles. The flowchart illustrated in the figure refers to the use of the Beck Anxiety Inventory (BAI), 1 of a few self‐administered anxiety rating scales validated in the general population and suggested here for use as screening instrument for anxiety in patients with AOID. BoNT, botulinum neurotoxin; MDC, movement disorders clinic; PTSD, posttraumatic stress disorder; WHODAS 2.0, World Health Organization Disability Assessment Schedule 2.0.