Psychological as well as illness factors influence acceptance of non-invasive ventilation (NIV) and gastrostomy in amyotrophic lateral sclerosis (ALS): a prospective population study.
Amyotroph Lateral Scler Frontotemporal Degener
; 15(5-6): 376-87, 2014 Sep.
Article
en En
| MEDLINE
| ID: mdl-24597488
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.
Palabras clave
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Gastrostomía
/
Aceptación de la Atención de Salud
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Ventilación no Invasiva
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Esclerosis Amiotrófica Lateral
Tipo de estudio:
Etiology_studies
/
Observational_studies
/
Prognostic_studies
/
Qualitative_research
/
Risk_factors_studies
Aspecto:
Patient_preference
Límite:
Aged
/
Female
/
Humans
/
Male
/
Middle aged
Idioma:
En
Revista:
Amyotroph Lateral Scler Frontotemporal Degener
Año:
2014
Tipo del documento:
Article