Qualitative Analysis of Initial Palliative Care Consultations in Amyotrophic Lateral Sclerosis

Christine L Watt; Ian C Smith; Jill Rice; Rebekah Murphy; Ari Breiner; Maria L V Duff; Danica Nogo; Shirley H Bush; Susan McNeely; Usha Buenger; Belinda Zehrt; Jocelyn Zwicker

doi:10.1016/j.jpainsymman.2024.03.024

Qualitative Analysis of Initial Palliative Care Consultations in Amyotrophic Lateral Sclerosis

J Pain Symptom Manage. 2024 Apr 2:S0885-3924(24)00679-1. doi: 10.1016/j.jpainsymman.2024.03.024. Online ahead of print.

Authors

Affiliations

¹ Department of Medicine, Division of Palliative Care (C.L.W., J.R., R.M., S.H.B.), University of Ottawa, 451 Smyth Road, Ottawa, Ontario K1H 8M5, Canada; The Ottawa Hospital (C.L.W., J.R., R.M., A.B., S.M., B.Z., J.Z.), 501 Smyth Rd, Ottawa, Ontario K1H 8L6, Canada; Bruyère Continuing Care (C.L.W., J.R., R.M., S.H.B.), 60 Cambridge St. N., Ottawa, Ontario K1R 7A5, Canada; Bruyère Research Institute (C.L.W., J.R., S.H.B.), 43 Bruyère St., Ottawa, Ontario K1N 5C8, Canada; Ottawa Hospital Research Institute (C.L.W., I.C.S., J.R., A.B., M.D., D.N., S.H.B., J.Z.), 1053 Carling Ave, Ottawa, Ontario K1Y 4E9, Canada. Electronic address: cwatt@bruyere.org.
² Ottawa Hospital Research Institute (C.L.W., I.C.S., J.R., A.B., M.D., D.N., S.H.B., J.Z.), 1053 Carling Ave, Ottawa, Ontario K1Y 4E9, Canada.
³ Department of Medicine, Division of Palliative Care (C.L.W., J.R., R.M., S.H.B.), University of Ottawa, 451 Smyth Road, Ottawa, Ontario K1H 8M5, Canada; The Ottawa Hospital (C.L.W., J.R., R.M., A.B., S.M., B.Z., J.Z.), 501 Smyth Rd, Ottawa, Ontario K1H 8L6, Canada; Bruyère Continuing Care (C.L.W., J.R., R.M., S.H.B.), 60 Cambridge St. N., Ottawa, Ontario K1R 7A5, Canada; Bruyère Research Institute (C.L.W., J.R., S.H.B.), 43 Bruyère St., Ottawa, Ontario K1N 5C8, Canada; Ottawa Hospital Research Institute (C.L.W., I.C.S., J.R., A.B., M.D., D.N., S.H.B., J.Z.), 1053 Carling Ave, Ottawa, Ontario K1Y 4E9, Canada.
⁴ Department of Medicine, Division of Palliative Care (C.L.W., J.R., R.M., S.H.B.), University of Ottawa, 451 Smyth Road, Ottawa, Ontario K1H 8M5, Canada; The Ottawa Hospital (C.L.W., J.R., R.M., A.B., S.M., B.Z., J.Z.), 501 Smyth Rd, Ottawa, Ontario K1H 8L6, Canada; Bruyère Continuing Care (C.L.W., J.R., R.M., S.H.B.), 60 Cambridge St. N., Ottawa, Ontario K1R 7A5, Canada; Queensway Carleton Hospital (R.M.), 3045 Baseline Road, Ottawa, Ontario K2H 8P4, Canada.
⁵ The Ottawa Hospital (C.L.W., J.R., R.M., A.B., S.M., B.Z., J.Z.), 501 Smyth Rd, Ottawa, Ontario K1H 8L6, Canada; Ottawa Hospital Research Institute (C.L.W., I.C.S., J.R., A.B., M.D., D.N., S.H.B., J.Z.), 1053 Carling Ave, Ottawa, Ontario K1Y 4E9, Canada; Department of Medicine (A.B.), Department of Neurology, University of Ottawa, 451 Smyth Road, Ottawa, Ontario K1H 8M5, Canada.
⁶ Department of Medicine, Division of Palliative Care (C.L.W., J.R., R.M., S.H.B.), University of Ottawa, 451 Smyth Road, Ottawa, Ontario K1H 8M5, Canada; Bruyère Continuing Care (C.L.W., J.R., R.M., S.H.B.), 60 Cambridge St. N., Ottawa, Ontario K1R 7A5, Canada; Bruyère Research Institute (C.L.W., J.R., S.H.B.), 43 Bruyère St., Ottawa, Ontario K1N 5C8, Canada; Ottawa Hospital Research Institute (C.L.W., I.C.S., J.R., A.B., M.D., D.N., S.H.B., J.Z.), 1053 Carling Ave, Ottawa, Ontario K1Y 4E9, Canada.
⁷ The Ottawa Hospital (C.L.W., J.R., R.M., A.B., S.M., B.Z., J.Z.), 501 Smyth Rd, Ottawa, Ontario K1H 8L6, Canada.
⁸ Faculty of Medicine (U.B.), Division of Physical Medicine and Rehabilitation, The Ottawa Hospital Rehabilitation Centre 505 Smyth Road, Ottawa, Ontario K1H 8M2, Canada.

PMID: 38574876
DOI: 10.1016/j.jpainsymman.2024.03.024

Abstract

Background: Palliative care (PC) benefits patients with amyotrophic lateral sclerosis (ALS), however the needs of patients and caregivers and the optimal timing of PC discussions remains unclear. This study reports the analysis of PC consult notes from a larger feasibility trial. The specific aims of this analysis were to i) identify the PC needs of patients with ALS via qualitative analysis and ii) identify characteristics of patients and caregivers that could predict specific PC needs.

Methods: This study was nested within a nonrandomized, prospective study of patients with ALS (and their caregivers) being treated at a multidisciplinary ALS clinic. Exclusion criteria of the main study were age <18 years, inability to complete questionnaires, and prior receipt of PC. All patients were offered a PC consultation (PCC); those who accepted were included in this nested study. Consultation notes were reviewed and thematic and content analyses were conducted. The occurrence of themes across patient and caregiver contextual variables were examined.

Results: Thirty-two PCCs were completed between October 2020 and April 2022. Six major themes were identified: PC roles (with subthemes encompassing the spectrum of specialist PC practice including symptom management and advance care planning), engagement with PC, patients' concerns for their caregivers, caregiver-specific concerns, finances, and COVID-19. An average of 12 topics were discussed per PCC (range = 3-22). Discussion of advance care planning, care coordination, and symptom management was common, and these topics were not discussed more frequently in PCCs with patients with lower functional status, more bulbar symptoms, or lower quality of life. Time from diagnosis did not impact topics of discussion. Patients reporting more symptoms of depression more frequently required psychological support, particularly regarding loss of independence, employment, and leisure activities.

Discussion: Patients with ALS and their caregivers have a wide range of PC needs. These needs vary irrespective of time from diagnosis, functional status, or quality of life, therefore PCC is recommended for all patients with ALS. PCC should be individualized based on patient and caregiver preferences.

Trial registration information: The study was registered with ClinicalTrials.gov (NCT04257760; https://clinicaltrials.gov/ct2/show/NCT04257760) on February 6, 2020. The first enrollment occurred on October 20, 2020.

Keywords: Amyotrophic lateral sclerosis; Consultation; Motor neuron disease; Palliative care; Qualitative analyses.

Associated data

ClinicalTrials.gov/NCT04257760