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

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


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.

Publication types

  • Multicenter Study
  • Randomized Controlled Trial
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living
  • Aftercare
  • Aged
  • Caregivers
  • Disease Progression
  • Female
  • Home Care Services*
  • Homebound Persons
  • Humans
  • Italy
  • Male
  • Middle Aged
  • Multiple Sclerosis / mortality
  • Multiple Sclerosis / pathology*
  • Multiple Sclerosis / therapy*
  • Multivariate Analysis
  • Palliative Care / methods*
  • Quality of Life
  • Severity of Illness Index
  • Treatment Outcome

Associated data

  • ISRCTN/ISRCTN73082124