Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: Ne-PAL a pilot randomized controlled study

Veronese, Simone and Gallo, G. and Valle, A. and Cugno, C. and Chio, A. and Calvo, A. and Cavalla, P. and Zibetti, M. and Rivoiro, C. and Oliver, David J. (2017) Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: Ne-PAL a pilot randomized controlled study. BMJ Supportive and Palliative Care, 7 (2). ISSN 2045-435X. (doi:https://doi.org/10.1136/bmjspcare-2014-000788) (Full text available)

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http://dx.doi.org/10.1136/bmjspcare-2014-000788

Abstract

Background This study analysed the impact on palliative care outcomes of a new specialist palliative care service for patients severely affected by amyotrophic lateral sclerosis (ALS/MND), multiple sclerosis, Parkinson's disease and related disorders (multiple system atrophy progressive supranuclear palsy, MSA-PSP). Methods The design followed the Medical Research Council Framework for the evaluation of complex interventions. A phase II randomised controlled trial (RCT) was undertaken comparing an immediate referral to the service (FT, fast track) to a 16-week wait (standard track (ST), standard best practice) using a parallel arm design. The main outcome measures were Quality of Life (measured with Schedule for the Evaluation of Individual Quality of Life Direct Weight, SEIQoL-DW) and burden of the carers (Caregivers Burden Inventory, CBI), with secondary outcomes of symptoms, psychosocial and spiritual issues. Results 50 patients severely affected by neurodegenerative conditions and their informal family carers were randomised: 25 FT, 25 ST. At baseline (T0), there were no differences between groups. 4 patients died during the follow-up (2 FT, 2 ST) and 2 FT patients dropped out before the end of the study. After 16?weeks (T1), FT participants scored significant improvement in the SEIQoL-DW index, pain dyspnoea sleep disturbance and bowel symptoms. Conclusions This exploratory RCT provides evidence that no harm was experienced by SPCS for patients severely affected by neurodegenerative disorders. There was an improvement in quality of life and physical symptoms for neurological patients in palliative care. Caregiver burden was not affected by the service.

Item Type: Article
Subjects: H Social Sciences > H Social Sciences (General)
R Medicine > R Medicine (General)
Divisions: Faculties > Social Sciences > School of Social Policy Sociology and Social Research > Tizard
Depositing User: Jo Ruffels
Date Deposited: 01 Jun 2016 08:47 UTC
Last Modified: 18 May 2018 09:06 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/55735 (The current URI for this page, for reference purposes)
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