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

Abstract

Introduction: Many 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.

Methods: The 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).

Results: 39 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.

Conclusion: Patients 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 registration: https://clinicaltrials.gov/ct2/show/NCT04257760, identifier NCT04257760.

Keywords: amyotrophic lateral scelerosis; anxiety; depression; palliative care; quality of life; virtual consultations.

Figure 1

Enrollment and survey correspondence measures. The flow of patients and caregivers through the study (A). Participants actively enrolled on the date the study closed are stated to have completed the study. The active enrollment period for all participants (B) beginning on either the date of the initial PCC or the date of the introductory PC phone call if a PCC was not desired. “End of Study” corresponds to the pre-planned study close date (October 31, 2022). The numbers of ALSSQOL-R (C) and HADS (D) surveys sent and received, as well as the percentage of completed surveys returned to researchers. Lower numbers of surveys sent at later time points reflect both participant attrition and the study design (featuring rolling enrollment with a fixed end date).

Figure 2

Satisfaction with PCC survey scores. Individual values are shown for caregivers (red circles; n = 13) and patients with ALS (gray X’s; n = 26), along with means and standard deviations (lines and bars).

Figure 3

HADS and ALSSQOL-R scores. HADS-A and HADS-D scores at intake (A1) and changes in score from baseline to month 1, to month 3, and to final completed survey (A2). Average and domain scores of the ALSSQOL-R survey at intake (B1) and changes in scores from baseline to month 1, month 3, and to final completed survey (B2). Individual scores, group means, and standard deviation are shown. Increases in HADS scores correspond to worsening mood. With exception of religiosity, decreases in ALSSQOL-R scores correspond to worsening quality of life. High religiosity scores reflect high importance of, and involvement in, religious practices. * p < 0.05 vs. score at intake. † p < 0.05 vs. Patients with Consult.

Figure 4

Correlation matrix for caregivers. Correlations between (1) weeks since loved one’s diagnosis at enrollment, (2) caregiver’s baseline HADS scores, (3) satisfaction with PCC survey responses, (4) ALSFRS-R score of loved one at time of PCC, and (5) PCC duration.

Figure 5

Correlation matrix for patients. Correlations between (1) weeks since diagnosis at enrollment, (2) baseline HADS scores, (3) baseline ALSSQOL-R scores, (4) satisfaction with PCC survey results, (5) ALSFRS-R scores at the time of PCC, and (6) PCC duration.