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Cognition, Neuropsychology

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

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Pages 376-387 | Received 27 Oct 2013, Accepted 19 Jan 2014, Published online: 06 Mar 2014
 

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.

Acknowledgements

We thank the Motor Neurone Disease Association of Great Britain and Northern Ireland, the ALS Association, the Angel Fund and the ALS Therapy Alliance for support. We also thank Catherine Knights, Julia Johnson, Sarah Chapman, Mary-Ann Ampong, Emma Willey, Andrew Dougherty, Chrissie Batts, Hazel Watts, Alan Rio, Joanna Karlsson and the Dementias and Neurodegenerative Diseases Research Network (DeNDRoN) for their considerable assistance in facilitating patient participation in the study, and Rachel Tuck for administrative support. We thank Jean Walters for helpful comments.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

This research was supported by the Motor Neurone Disease Association UK. Other support to authors was received from the European Commission's Health Seventh Framework Programme (to AAC and CES). AAC, CES, LHG and SL receive salary support from the National Institute for Health Research (NIHR) Dementia Biomedical Research Unit (AAC, CES, LHG) and the NIHR Biomedical Research Centre for Mental Health (SL) at the South London and Maudsley NHS Foundation Trust and King’s College London. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. CES also receives research support from the Motor Neurone Disease Association UK, the Medical Research Council, the Wellcome Trust and Psychiatry Research Trust. AA-C receives research support from the Motor Neurone Disease Association UK, the ALS Association and the ALS Therapy Alliance. SL receives research support from the National Institute for Health Research (NIHR), UK and the Medical Research Council, UK. She has also previously received research support from the Wellcome Trust UK, the Parkinson’s Disease Society of the United Kingdom, Johnson and Johnson and the PPP Healthcare Medical Trust. AJ has received research support from the Psychiatry Research Trust. NM and AJ have received conference travel expenses from Brain. PNL has received research support from the Medical Research Council, Motor Neurone Disease Association and the Wellcome Trust UK. LHG receives research support from Department of Health/National Institute for Health Research (NIHR) UK and the Motor Neurone Disease Association UK. She has also received support from Epilepsy Research UK, the Institute of Social Psychiatry and the Wellcome Trust UK.

Sabine Landau receives royalties from the publication of Cluster Analysis (Wiley, 2011, Arnold 2001) and A Handbook of Statistical Analysis using SPSS (CRC/Chapman and Hall, 2003).

Christopher E. Shaw has received travel expenses and honoraria acting as a Consultant to GlaxoSmithKline. Ammar Al-Chalabi receives royalties from the publication of The Brain (Oneworld Publications) and The Genetics of Complex Human Diseases (Cold Spring Harbor Laboratory Press for a book). P. Nigel Leigh has received honoraria or consultancy fees and travel expenses from Sanofi Aventis, GlaxoSmithKline (GSK), Acceleron, Cytokinetics, Neuronova, and is or has been a member of advisory boards for GSK, Acceleron, Cytokinetics, Neuronova, TauPx, and Biogen-idec. Laura H. Goldstein has received travel expenses and honoraria for speaking and educational activities not funded by industry; receives royalties from the publication of Clinical Neuropsychology (Wiley, 2004, 2013) and The Clinical Psychologist's Handbook of Epilepsy (Routledge, 1997).

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