The Palliative Care Information Needs of Patients with Amyotrophic Lateral Sclerosis and their Informal Caregivers: A Scoping Review

Jacqueline Gillespie; Antoine Przybylak-Brouillard; Christine L Watt

doi:10.1016/j.jpainsymman.2021.03.008

The Palliative Care Information Needs of Patients with Amyotrophic Lateral Sclerosis and their Informal Caregivers: A Scoping Review

J Pain Symptom Manage. 2021 Oct;62(4):848-862. doi: 10.1016/j.jpainsymman.2021.03.008. Epub 2021 Mar 21.

Authors

Jacqueline Gillespie¹, Antoine Przybylak-Brouillard², Christine L Watt³

Affiliations

¹ Division of Palliative Care, Trillium Health Partners, Mississauga, Ontario, Canada.
² Institute of Health Sciences Education, McGill University, Montreal, Quebec, Canada.
³ Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Bruyere Research Institute, Ottawa, Ontario, Canada. Electronic address: cwatt@bruyere.org.

PMID: 33757892
DOI: 10.1016/j.jpainsymman.2021.03.008

Abstract

Context: Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease, associated with impaired quality of life for patients and caregivers. As treatment is largely supportive, early involvement of palliative care (PC) is recommended as standard of care. Despite this, literature surrounding PC information needs is limited.

Objectives: To explore the PC information needs of patients with ALS and their caregivers and identify gaps in the literature.

Methods: A scoping review using MEDLINE, EMBASE, CINAHL and PsycINFO databases (2000-2019) was conducted. Articles examining PC information needs as stated by ALS patients and/or current/bereaved caregivers were included. Studies examining other diagnoses and those focused on healthcare workers were excluded. Thematic synthesis was used to summarize and identify prevalent domains and themes in the literature.

Results: 581 articles underwent primary screening, with thirty-two ultimately included (26 original articles, six reviews). Fourteen examined information needs of both patients and caregivers, 13 caregivers only, 5 patients only. The most common PC information needs were as follows: for patients, disease course/prognosis (n = 10), general disease information (n = 9), decision-making (n = 7) and symptoms (n = 6); for caregivers, services and resources (n = 15), disease course/prognosis (n = 14), general disease information (n = 13) and skills (n = 10). There was substantial variability in information needs, both between patients and caregivers and among members of the same group.

Conclusion: ALS patients and caregivers have unique and varying PC information needs. Future research should better characterize these needs to improve patient and caregiver quality of life. The delivery of information must be tailored to individual patient or caregiver preferences.

Keywords: Amyotrophic lateral sclerosis; information needs; palliative care; thematic synthesis.

Publication types

Review

MeSH terms

Amyotrophic Lateral Sclerosis* / therapy
Caregivers
Humans
Neurodegenerative Diseases*
Palliative Care
Quality of Life