| Palliative Care | Rare Neurological Diseases  

Palliative care for ALS – acceptability and feasibility

Virtual palliative care consultation for people with ALS, and their caregivers, was found to be helpful and did not take too much energy or cause tiredness.

A non-randomized prospective feasibility study from Canada has looked at the acceptability of palliative care for people with amyotrophic lateral sclerosis (ALS). 39 patients and 22 caregivers were enrolled and 32 patients undertook virtual consultations with palliative care specialists initially, with the possibility of face-to face consultations later in the study, as this was during the time of COVID19. They rated the consultation as helpful and would recommend the service to other people with ALS. The commonest reasons for accepting the consultation were information seeking and future planning. Four people accepted consultations after meeting the team. The people with ALS assessed that the consultation did not take too much energy and disagreed with the statement that the consultation would be better later in the disease progression.

The quality of life was assessed using the ALSQOL -R and HADS over a period of up to 21 months. The average ALSQOL-R deteriorated during the assessment period and there were no differences between those who had received the palliative care consultation and those not receiving this support. This may reflect the small numbers of patients.

Comments:

This small pilot study has shown that palliative care consultation is acceptable and helpful for people with ALS and their families, without being a burden. Although no improvement in quality of life was seen other studies have suggested that this may occur (2, 3) and this pilot study aims to continue as a large multi-centre trial.

Key Points:

  1. Palliative care consultation, even online, was felt to be helpful by people with ALS
  2. Consultation was not tiring and did not take too much energy
  3. People with ALS agreed to an early palliative care consultation
  4. Quality of life measures did not show any improvement - but in a very small sample"

References:

  1. Zwicker J, Smith IC, Rice J et al. Palliative care at any stage of amyotrophic lateral sclerosis: a prospective feasibility study. Front Med 10:1204816. Doi: 10.3389/fmed.2023.1204816
  2. Veronese S, Gallo G, Valle A, Cugno C, Chio A, Calvo A, Rivoiro C, Oliver DJ. The palliative care needs of people severely affected by neurodegenerative disorders: a qualitative study. Prog Pall care 2015; 6: 331-342. DOI: dx.doi.org/10.1179/1743291X15Y.0000000007
  3. Oliver D, Veronese S. What is the role and evidence for palliative care for people with neurological disease? Rivista Italiana di Cure Palliative 2021; 23: 152-157.

Publish on behalf of the Scientific Panel Palliative care

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