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Accessing and receiving SLP services at ALS clinic (Huynh et al., 2023)

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posted on 2023-09-07, 22:28 authored by Anna Huynh, Kerry Adams, Carolina Barnett-Tapia, Sanjay Kalra, Lorne Zinman, Yana Yunusova

Purpose: This study sought to explore how patients with amyotrophic lateral sclerosis (ALS) presenting with coexisting bulbar and cognitive impairments and their caregivers experienced the speech-language pathologist (SLP) services provided in multidisciplinary ALS clinics in Canada and identified their perceived needs for bulbar symptom management.

Method: This qualitative study was informed by interpretive description. Seven interviews were conducted with patients with severe bulbar dysfunction or severe bulbar and cognitive dysfunction due to ALS or ALS-frontotemporal dementia, respectively, and/or their caregivers. Purposive sampling was used to recruit individuals with severe bulbar or bulbar and cognitive disease. Thematic analysis was used to analyze interview data.

Results: Patients and caregivers reported difficulties with accessing and receiving SLP services at the multidisciplinary ALS clinic. These difficulties were further exacerbated in those with severe cognitive disease. Participants expressed a need for more specific (i.e., disease and service-related) information and personalized care to address their changing needs and preferences. Engaging caregivers earlier in SLP appointments was perceived as vital to support care planning and provide in-time caregiver education.

Conclusions: This study highlighted the challenges experienced by patients and caregivers in accessing and receiving SLP services. There is a pressing need for a more person-centered approach to ALS care and a continuing need for education of SLPs on care provision in cases of complex multisymptom diseases within a multidisciplinary ALS clinic.

Supplemental Material S1. Qualitative interview guide.

Huynh, A., Adams, K., Barnett-Tapia, C., Kalra, S., Zinman, L., & Yunusova, Y. (2023). Accessing and receiving speech-language pathology services at the multidisciplinary amyotrophic lateral sclerosis clinic: An exploratory qualitative study of patient experiences and needs. Journal of Speech, Language, and Hearing Research. Advance online publication.


This work was supported by the National Institutes of Health Grant R01DC017291, the ALS Society of Canada and Brain Canada (Hudson Translational Team Grant), and the TD Bank Financial Group (KITE—Toronto Rehab’s TD Graduate Scholarship for Students with Disabilities).