Palliative care at any stage of amyotrophic lateral sclerosis: a prospective feasibility study

Frontiers in Medicine

Medicine

Belinda Zehrt¹  Susan McNeely¹  Rebekah Murphy²  Jill Rice³  Ari Breiner⁴  Jocelyn Zwicker⁴  Christine L. Watt⁵  Usha Buenger⁶  Ian C. Smith⁷  Maria Duff⁷  Danica Nogo⁷ 

[1] Department of Medicine, The Ottawa Hospital, Ottawa, ON, Canada;Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada;Department of Medicine, The Ottawa Hospital, Ottawa, ON, Canada;Bruyère Continuing Care, Ottawa, ON, Canada;Queensway Carleton Hospital, Ottawa, ON, Canada;Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada;Department of Medicine, The Ottawa Hospital, Ottawa, ON, Canada;Bruyère Research Institute, Ottawa, ON, Canada;Bruyère Continuing Care, Ottawa, ON, Canada;Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada;Department of Medicine, The Ottawa Hospital, Ottawa, ON, Canada;Ottawa Hospital Research Institute, Ottawa, ON, Canada;Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada;Department of Medicine, The Ottawa Hospital, Ottawa, ON, Canada;Ottawa Hospital Research Institute, Ottawa, ON, Canada;Bruyère Research Institute, Ottawa, ON, Canada;Bruyère Continuing Care, Ottawa, ON, Canada;Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada;The Rehabilitation Centre, Ottawa, ON, Canada;Ottawa Hospital Research Institute, Ottawa, ON, Canada;

关键词: palliative care;    anxiety;    depression;    quality of life;    amyotrophic lateral scelerosis;    virtual consultations;   

DOI  :  10.3389/fmed.2023.1204816

 received in 2023-04-12, accepted in 2023-08-23,  发布年份 2023

来源: Frontiers

【 摘 要 】

IntroductionMany patients with amyotrophic lateral sclerosis (ALS) receive palliative care (PC) very late or not at all. The impact of PC on patients with ALS and caregivers has not been quantified. Study goals included (1) measuring the impact of early PC on quality of life and mood of patients/caregivers and (2) describing patient/caregiver satisfaction with PC.MethodsThe study was a non-randomized, prospective feasibility study of patients with ALS being treated at The Ottawa Hospital ALS Clinic and their caregivers. Exclusion criteria were age < 18 years, inability to complete questionnaires, and prior receipt of PC. The ALS Specific Quality of Life-Revised (ALSSQOL-R) questionnaire (patients only) and Hospital Anxiety and Depression Scale (HADS) were completed at regular intervals for up to 2 years. Patients accepting a PC consultation completed a post-PC satisfaction survey. Primary outcome measures included ALSSQOL-R and HADS scores compared before and after PC consultation, and between groups receiving and not receiving a PC consultation. Secondary outcome measures included responses on the post-PC satisfaction survey (1 = strongly disagree, 5 = strongly agree).Results39 patients with ALS (age 66 ± 10 years, median time from diagnosis = 6 months) and 22 caregivers were enrolled. 32 patients had a PC consultation (30 were virtual). Patients and caregivers agreed with statements that the PC consult was helpful (mean ± SD = 4.54 ± 0.60, range = 3–5) and they would recommend PC to others with ALS (4.59 ± 0.59, range = 3–5). Participants disagreed with statements that the consult would have been better later in disease course (1.87 ± 0.80, range = 1–4) and that it took too much time/energy (1.44 ± 0.85, range = 1–4). Average ALSSQOL-R scores worsened significantly over time. HADS and ALSSQOL-R scores did not significantly differ between groups receiving and not receiving PC.ConclusionPatients with ALS and their caregivers found virtual PC consultations beneficial irrespective of disease duration or severity. Offering routine PC to all patients with ALS is feasible and should be considered as part of standard care.Clinical trial registrationhttps://clinicaltrials.gov/ct2/show/NCT04257760, identifier NCT04257760.

【 授权许可】

Unknown   
Copyright © 2023 Zwicker, Smith, Rice, Murphy, Breiner, McNeely, Duff, Buenger, Zehrt, Nogo and Watt.