title: Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: NE-PAL, a pilot randomised controlled study.
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.
authors.affiliation: Fondazione Assistenza e Ricerca in Oncologia (FARO) Onlus, Turin, Italy.
authors.forename: Simone
authors.initials: S
authors.lastname: Veronese
authors.affiliation: Fondazione Assistenza e Ricerca in Oncologia (FARO) Onlus, Turin, Italy.
authors.forename: G
authors.initials: G
authors.lastname: Gallo
authors.affiliation: Fondazione Assistenza e Ricerca in Oncologia (FARO) Onlus, Turin, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Valle
authors.affiliation: Fondazione Assistenza e Ricerca in Oncologia (FARO) Onlus, Turin, Italy.
authors.forename: C
authors.initials: C
authors.lastname: Cugno
authors.affiliation: Department of Neuroscience, ALS Centre, University of Turin, Turin, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Chiò
authors.affiliation: Department of Neuroscience, ALS Centre, University of Turin, Turin, Italy.
authors.forename: A
authors.initials: A
authors.lastname: Calvo
authors.affiliation: Department of Neuroscience, ALS Centre, University of Turin, Turin, Italy.
authors.forename: P
authors.initials: P
authors.lastname: Cavalla
authors.affiliation: Department of Neuroscience, ALS Centre, University of Turin, Turin, Italy.
authors.forename: M
authors.initials: M
authors.lastname: Zibetti
authors.affiliation: Agenzia Regionale Servizi Sanitari Piemonte ARESS Piemonte, Turin, Italy.
authors.forename: C
authors.initials: C
authors.lastname: Rivoiro
authors.affiliation: Centre for Professional Practice, University of Kent, Chatham, UK.
authors.forename: D J
authors.initials: DJ
authors.lastname: Oliver
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D007558:Italy; D008297:Male; D008875:Middle Aged; D019636:Neurodegenerative Diseases / Q000523:psychology*; D010166:Palliative Care; D010865:Pilot Projects; D011788:Quality of Life; D016896:Treatment Outcome
keywords: Amyotrophic lateral sclerosis; Multiple sclerosis; Neurological conditions; Palliative care; Parkinson's disease; Service evaluation