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Mult Scler. 2018 Apr;24(5):663-674. doi: 10.1177/1352458517704078. Epub 2017 Apr 6.

Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis.

Author information

1
Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
2
MS Centre, Neurology Clinic, University Hospital Policlinico Vittorio Emanuele, Catania, Italy.
3
Multiple Sclerosis Unit, IRCCS S. Lucia Foundation, Rome, Italy.
4
Department of Neuroimmunology and Neuromuscular Diseases, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
5
National Center for Drug Evaluation and Research, Istituto Superiore di Sanità, Rome, Italy.
6
Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), Genoa, Italy.
7
Unit of Clinical Psychology, Foundation IRCCS Istituto Nazionale per la Cura dei Tumori, Milan, Italy.
8
Department of Psychology, University of Turin, Turin, Italy.
9
FARO Charitable Foundation, Turin, Italy.
10
Department of Life Sciences, University of Siena, Siena, Italy.

Abstract

BACKGROUND:

Evidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce.

OBJECTIVE:

To assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers.

METHODS:

Adults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC). At each center, a multi-professional team delivered the 6-month intervention. A blind examiner assessed dyads at baseline, 3 months, and 6 months. Primary outcome measures were Palliative care Outcome Scale-Symptoms-MS (POS-S-MS) and Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW, not assessed in severely cognitively compromised patients).

RESULTS:

Of 78 dyads randomized, 76 (50 HPA, 26 UC) were analyzed. Symptom burden (POS-S-MS) significantly reduced in HPA group compared to UC ( p = 0.047). Effect size was 0.20 at 3 months and 0.32 at 6 months, and statistical significance was borderline in per-protocol analysis ( p = 0.062). Changes in SEIQoL-DW index did not differ in the two groups, as changes in secondary patient and carer outcomes.

CONCLUSION:

HPA slightly reduced symptoms burden. We found no evidence of HPA efficacy on patient quality of life and on secondary outcomes.

KEYWORDS:

Multiple sclerosis; caregivers; palliative care; quality of life; randomized controlled trial; symptom burden

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