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Psychological as well as illness factors influence acceptance of non-invasive ventilation (NIV) and gastrostomy in amyotrophic lateral sclerosis (ALS): a prospective population study.

journal contribution
posted on 2023-06-08, 20:55 authored by Naomi H Martin, Sabine Landau, Anna Janssen, Rebecca Lyall, Irene Higginson, Rachel Burman, Paul McCrone, Mohammed Sakel, Catherine M Ellis, Christopher E Shaw, Ammar Al-Chalabi, Nigel LeighNigel Leigh, Laura H Goldstein
Our objective was to identify factors associated with acceptance of non-invasive ventilation (NIV) and gastrostomy in an exploratory population-based study. Seventy-eight people with ALS at least six months post-diagnosis, and 50 caregivers, were recruited from the South-East ALS Register. Baseline physical, cognitive and psychological measures were obtained. Three-monthly follow-ups monitored whether patients had accepted or refused NIV or gastrostomy. Following an intervention decision, post-decision interviews repeated baseline measures and included further intervention-specific questionnaires. Results showed that 32 people with ALS made at least one intervention decision and of these 10 decided about both NIV and gastrostomy. While illness factors predicted those needing to make an intervention decision, cognitive and education status, and level of executive dysfunction were associated with decision-making and acceptance or refusal of interventions. Patients' understanding of their illness, their early approach to considering interventions and carer-related factors were also associated with treatment decisions. In conclusion, our findings highlight the complexity of decision-making and provide a platform for designing further studies. Cognitive and psychosocial factors may assume a greater role in palliative care decisions for people with ALS than has been explicitly recognized. Future work must clarify how to ensure patients are not inadvertently being denied suitable interventions.

History

Publication status

  • Published

Journal

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

ISSN

2167-9223

Publisher

Informa Healthcare

Issue

5-6

Volume

15

Page range

376-387

Department affiliated with

  • BSMS Neuroscience Publications

Full text available

  • No

Peer reviewed?

  • Yes

Legacy Posted Date

2015-06-16

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    University of Sussex (Publications)

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