People with multiple sclerosis (MS) have complex symptoms and different types of needs. These demands include how to manage the burden of physical disability as well as how to organise daily life, restructure social roles in the family and at work, preserve personal identity and community roles, keep self‐sufficiency in personal care, and how to be part of an integrated care network. Palliative care teams are trained to keep open full and competent lines of communication about symptoms and disease progression, advanced care planning, and end‐of‐life issues and wishes. Teams create a treatment plan for the total management of symptoms, supporting people and families on decision‐making. Despite advances in research and the existence of many interventions to reduce disease activity or to slow the progression of MS, this condition remains a life‐limiting disease with symptoms that impact negatively the lives of people with it and their families.
To assess the effects (benefits and harms) of palliative care interventions compared to usual care for people with any form of multiple sclerosis: relapsing‐remitting MS (RRMS), secondary‐progressive MS (SPMS), primary‐progressive MS (PPMS), and progressive‐relapsing MS (PRMS) We also aimed to compare the effects of different palliative care interventions.
On 31 October 2018, we conducted a literature search in the specialised register of the Cochrane MS and Rare Diseases of the Central Nervous System Review Group, which contains trials from CENTRAL, MEDLINE, Embase, CINAHL, LILACS, Clinical trials.gov and the World Health Organization International Clinical Trials Registry Platform. We also searched PsycINFO, PEDro and Opengrey. We also handsearched relevant journals and screened the reference lists of published reviews. We contacted researchers in palliative care and multiple sclerosis.
Randomised controlled trials (RCTs) and cluster randomised trials were eligible for inclusion, as well as the first phase of cross‐over trials. We included studies that compared palliative care interventions versus usual care. We also included studies that compared palliative care interventions versus another type of palliative interventions.
Data collection and analysis
We used standard Cochrane methodological procedures. We summarised key results and certainty of evidence in a ‘Summary of Finding’ table that reported outcomes at six or more months of post‐intervention.
Three studies (146 participants) met our selection criteria. Two studies compared multidisciplinary, fast‐track palliative care versus multidisciplinary standard care while on a waiting‐list control, and one study compared a multidisciplinary palliative approach versus multidisciplinary standard care at different time points (12, 16, and 24 weeks). Two were RCTs with parallel design (total 94 participants) and one was a cross‐over design (52 participants). The three studies assessed palliative care as a home‐based intervention. One of the three studies included participants with ‘neurodegenerative diseases’, with MS people being a subset of the randomised population. We assessed the risk of bias of included studies using Cochrane’s ‘Risk of Bias’ tool.
We found no evidence of differences between intervention and control groups in long‐time follow‐up (> six months post‐intervention) for the following outcomes: mean change in health‐related quality of life (SEIQoL ‐ higher scores mean better quality of life; MD 4.80, 95% CI ‐12.32 to 21.92; participants = 62; studies = 1; very low‐certainty evidence), serious adverse events (RR 0.97, 95% CI 0.44 to 2.12; participants = 76; studies = 1, 22 events, low‐certainty evidence) and hospital admission (RR 0.78, 95% CI 0.24 to 2.52; participants = 76; studies = 1, 10 events, low‐certainty evidence).
The three included studies did not assess the following outcomes at long term follow‐up (> six months post intervention): fatigue, anxiety, depression, disability, cognitive function, relapse‐free survival, and sustained progression‐free survival.
We did not find any trial that compared different types of palliative care with each other.
Based on the findings of the RCTs included in this review, we are uncertain whether palliative care interventions are beneficial for people with MS. There is low‐ or very low‐certainty evidence regarding the difference between palliative care interventions versus usual care for long‐term health‐related quality of life, adverse events, and hospital admission in patients with MS. For intermediate‐term follow‐up, we are also uncertain about the effects of palliative care for the outcomes: health‐related quality of life (measured by different assessments: SEIQoL or MSIS), disability, anxiety, and depression.
Plain language summary
Palliative care interventions for people with multiple sclerosis
To assess the effects (benefits and harms) of palliative care interventions compared to usual care for people with any form of multiple sclerosis: relapsing‐remitting MS (RRMS), secondary‐progressive MS (SPMS) and primary‐progressive MS (PPMS). We also aimed to compare the effects of different palliative care interventions.
Multiple sclerosis (MS) is a chronic, disabling and progressive condition that affects around 2.3 million people worldwide. The many symptoms of MS create emotional, psychosocial and physical burdens for those affected. Palliative care is defined as the active and total care of pain and psychological, spiritual and social problems of people with a disease that does not respond to curative treatments. Palliative care includes the relief of pain and other stressor symptoms, the promotion of the concept of life and death as something natural, promoting respect for the natural course of death, the integration of psychological and spiritual aspects into patient care, and the preservation of an active life for as long as possible.
Three studies involving 146 participants were included in this review. All three studies compared palliative care delivered in home visits versus usual care for people with MS. Two studies included only participants with MS. The third study (Ne‐PAL) included participants with MS and other neurodegenerative diseases. In all three studies, interventions focused on assessment and management of symptoms and end‐of‐life planning. We did not find studies that compared different types of palliative care with each other.
We are uncertain about differences between palliative care versus usual care for the following outcomes assessed at long‐term follow‐up (> six months post‐intervention): change in health‐related quality of life, adverse events and hospital admission. The included studies did not assess fatigue, cognitive function, relapse‐free survival or sustained progression‐free survival.
Quality of the evidence
We are uncertain whether palliative care interventions are beneficial for people with MS. There is low‐ or very low‐certainty evidence regarding the difference between palliative care interventions versus usual care for long‐term health‐related quality of life, adverse events and hospital admission.
Currentness of evidence
This evidence is up‐to‐date as of 31 October 2018.