title: Psychological as well as illness factors influence acceptance of non-invasive ventilation (NIV) and gastrostomy in amyotrophic lateral sclerosis (ALS): a prospective population study.
abstract: 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.
authors.affiliation: King's College London, Institute of Psychiatry, Department of Psychology.
authors.forename: Naomi H
authors.initials: NH
authors.lastname: Martin
authors.forename: Sabine
authors.initials: S
authors.lastname: Landau
authors.forename: Anna
authors.initials: A
authors.lastname: Janssen
authors.forename: Rebecca
authors.initials: R
authors.lastname: Lyall
authors.forename: Irene
authors.initials: I
authors.lastname: Higginson
authors.forename: Rachel
authors.initials: R
authors.lastname: Burman
authors.forename: Paul
authors.initials: P
authors.lastname: McCrone
authors.forename: Mohammed
authors.initials: M
authors.lastname: Sakel
authors.forename: Catherine M
authors.initials: CM
authors.lastname: Ellis
authors.forename: Christopher E
authors.initials: CE
authors.lastname: Shaw
authors.forename: Ammar
authors.initials: A
authors.lastname: Al-Chalabi
authors.forename: P Nigel
authors.initials: PN
authors.lastname: Leigh
authors.forename: Laura H
authors.initials: LH
authors.lastname: Goldstein
mesh_terms: D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000523:psychology* / Q000628:therapy*; D017028:Caregivers / Q000523:psychology; D018672:Community Health Planning; D003657:Decision Making; D005260:Female; D005500:Follow-Up Studies; D005774:Gastrostomy / Q000379:methods*; D006801:Humans; D008297:Male; D008875:Middle Aged; D063087:Noninvasive Ventilation / Q000379:methods*; D016017:Odds Ratio; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D011788:Quality of Life; D012189:Retrospective Studies; D011795:Surveys and Questionnaires
keywords: Amyotrophic lateral sclerosis; decision-making; gastrostomy; non-invasive ventilation; palliative care