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

TY - JOUR

T1 - Psychological as well as illness factors influence acceptance of non-invasive ventilation (NIV) and gastrostomy in amyotrophic lateral sclerosis (ALS)

T2 - A prospective population study

AU - Martin, Naomi H

AU - Landau, Sabine

AU - Janssen, Anna

AU - Lyall, Rebecca

AU - Higginson, Irene

AU - Burman, Rachel

AU - McCrone, Paul

AU - Sakel, Mohammed

AU - Ellis, Catherine M

AU - Shaw, Christopher E

AU - Al-Chalabi, Ammar

AU - Leigh, P Nigel

AU - Goldstein, Laura H

PY - 2014/9

Y1 - 2014/9

N2 - 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.

AB - 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.

KW - Acknowledged-BRC

KW - Acknowledged-BRU

KW - Acknowledged-BRU-13/14

U2 - 10.3109/21678421.2014.886700

DO - 10.3109/21678421.2014.886700

M3 - Article

C2 - 24597488

SN - 2167-9223

SN - 1471-180X

VL - 15

SP - 376

EP - 387

JO - Amyotrophic lateral sclerosis & frontotemporal degeneration

JF - Amyotrophic lateral sclerosis & frontotemporal degeneration

IS - 5-6

ER -