Evidence map›Paper›PMID 37780560›Full record

ArticleFrontiers in medicine2023

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

Jocelyn Zwicker, Ian C Smith, Jill Rice, Rebekah Murphy, Ari Breiner, Susan McNeely, Maria Duff, Usha Buenger, Belinda Zehrt, Danica Nogo and 1 more

Registry-linked trialAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Frontiers in medicine, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT04257760 (Understanding Palliative Care and End of Life Needs in the ALS Population), which is not on this map. Cited by 5 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT04257760 nacompletednot on this map

Understanding Palliative Care and End of Life Needs in the ALS Population: The First Step to Improving Patient and Caregiver Quality of Life

TypeinterventionalSponsorOttawa Hospital Research InstituteRan2020 to 2022Enrolled66ConditionsAmyotrophic Lateral SclerosisArmsPalliative Care consultation outside standard of care
3 · Its place in the literature

Who cites it

5 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Palliative Care Involvement in Hospitalized Amyotrophic Lateral Sclerosis Patients.International journal of environmental research and public health · 2026
    Article
  3. Article
  4. Article
  5. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Jocelyn ZwickerFaculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
Ian C SmithOttawa Hospital Research Institute, Ottawa, ON, Canada.
Jill RiceFaculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
Rebekah MurphyFaculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
Ari BreinerFaculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
Susan McNeelyDepartment of Medicine, The Ottawa Hospital, Ottawa, ON, Canada.
Maria DuffOttawa Hospital Research Institute, Ottawa, ON, Canada.
Usha BuengerFaculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
Belinda ZehrtDepartment of Medicine, The Ottawa Hospital, Ottawa, ON, Canada.
Danica NogoOttawa Hospital Research Institute, Ottawa, ON, Canada.
Christine L WattFaculty of Medicine, University of Ottawa, Ottawa, ON, Canada.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

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.

Indexed as

amyotrophic lateral scelerosisanxietydepressionpalliative carequality of lifevirtual consultations

Identifiers

PMID37780560
PMCPMC10533918

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.