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

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. https://doi.org/10.1044/2023_JSLHR-23-00087