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.

Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives

“…PwALS were recruited from the South-East ALS register [41] as part of a larger, prospective study of decision-making about gastrostomy and NIV in ALS [17]. Inclusion criteria for this qualitative study were: confirmed diagnosis of ALS; duration of disease at entry into the larger study [17] between 6 and 60 months; and referral for NIV and/or gastrostomy, with a decision to either accept or decline the intervention.…”

“…Inclusion criteria for this qualitative study were: confirmed diagnosis of ALS; duration of disease at entry into the larger study [17] between 6 and 60 months; and referral for NIV and/or gastrostomy, with a decision to either accept or decline the intervention. PwALS were not excluded on the basis of clinically-apparent cognitive impairment provided they could give valid informed consent.…”

“…PwALS were not excluded on the basis of clinically-apparent cognitive impairment provided they could give valid informed consent. However, a detailed formal neuropsychological assessment was not undertaken due to the number of measures adopted in the larger study [17] and a desire to limit the burden on participants, both at entry to the wider study and following an intervention decision, when ill-health may have, in any case, reduced the likelihood that patients would have completed such testing.…”

“…From our larger sample of 78 people with ALS [17], a total of 32 people (41%) made at least one intervention decision.…”

“…In quantitative studies, factors found to affect decisionmaking by pwALS in terms of NIV (and ventilation more generally) and gastrostomy include disease characteristics such as severity of symptoms [17]; demographic factors such as gender, age, educational level and IQ; and various psychological characteristics such as health beliefs, understanding of the illness, attachment to life, religiosity and mood (see [17][18][19][20][21][22][23]) as well as carer-rated everyday behavioural change indicative of executive dysfunction [17]. It has also been found that pwALS who indicate possible acceptance of NIV and gastrostomy early on in the disease trajectory are more likely to abide by their initial decision [24][25].…”