Patient perspectives on transitioning to amyotrophic lateral sclerosis multidisciplinary clinics

Kerri Lynn Schellenberg,¹ Gregory Hansen<sup>2

1</sup>Department of Medicine, Division of Neurology, University of Saskatchewan, Saskatoon, SK, Canada; ²Department of Pediatrics, Division of Critical Care, University of Saskatchewan, Saskatoon, SK, Canada

Purpose: Multidisciplinary clinics (MDC) have become the standard of care for management of amyotrophic lateral sclerosis (ALS). No studies however, have captured patients’ perspectives during a transition to ALS MDCs. Recently, an ALS MDC emerged from a single-physician clinic in Saskatoon, Canada, providing patients with a unique exposure to two different models of care.
Patients and methods: Fifteen patients with ALS participated in semi-structured interviews that were digitally recorded and transcribed. Two independent researchers performed an inductive thematic analysis. Information was coded based on emerging and a priori themes. An iterative process followed involving discussion and reexamination of the themes until consensus was reached.
Results: All patients cited the convenience of integrated care as an advantage. Other advantages included clinical expertise and advocacy potential. Travel and reduced mobility were the most commonly discussed barriers/disadvantages of MDC attendance. The impact of geography and weather appeared to augment both the appreciation of an integrated approach and the impediment of travel, compared to the existing literature. The need for individualized care was demonstrated by the conflicting viewpoints obtained from participants. Most patients felt additional practitioners and supports for both patients and caregivers were required.
Conclusion: ALS patients transitioned to MDCs reported many of the advantages and disadvantages reported elsewhere. A novel perspective of a MDC’s advocacy potential was recognized, and the need for an innovative approach to meet demands for individualized care was highlighted.

Keywords: amyotrophic lateral sclerosis, motor neuron disease, multidisciplinary care, qualitative research