Why this review is important?
Multiple sclerosis (MS) is a progressive disabling disease that affects approximately 2.3 million people worldwide. It is an autoimmune, inflammatory, and demyelinating disorder that results in brain and spinal cord neural changes. It affects movement, cognition, and activities of daily living that substantially influence a person’s autonomy and quality of life. People generally are diagnosed with Multiple Sclerosis during their income-producing years, and the subsequent loss of self-sufficiency contributes to a high emotional, social, and physical impact, increasing the burden for the person with MS, caregivers, and health systems.
Palliative care aims to improve the quality of life of both person with MS and families, targeting pain and psychological, spiritual, and social problems of people with a disease who are not responding to curative treatments. Palliative care interventions can be divided in early-disease course, symptomatic-management improving quality of life, and end-of-life care for the terminally ill. They generally are delivered by a multidisciplinary team including specialists (medical doctors, nurses, social workers, chaplains, physiotherapists, occupational therapists, dentists, psychologists, and psychiatrists). Palliative care can be administered in different settings, like community, hospitals, hospices, daycare, outpatient clinics, and the person’s home.
Despite many research and interventional developments for reducing and slowing the disease, MS progression remains traumatic and life-threatening for individuals and their families. Some primary studies infer the palliative care effectiveness, but a comprehensive synthesis would help people with MS, healthcare professionals, families, and policymakers. It also would help in making treatment choices and time for considering palliative care.
What does this review discuss?
The objective is to assess the effects (benefits and harms) of palliative care interventions in patients with MS where predominantly comparison is between palliative and usual care. The review included three clinical trials with 146 adult participants with a diagnosis of relapsing-remitting, secondary-progressive, and primary-progressive MS types. Two of the studies compared palliative care with multidisciplinary standard care and waiting-list control, whereas one of the studies compared palliative care versus standard care at different time points (12, 16, and 24 weeks). The outcome of these home-based interventions were assessed based on (I) health-related quality of life, (II) adverse events (pain, sleep disturbance, or any other event), (III) fatigue, (IV) cognitive function, (V) anxiety and depression, (VI) disability, (VII) hospital admission, (VIII) relapse-free survival, and (IX) sustained progression-free survival. The authors also described how palliative care intervention and different strategies may work in MS.
Key results of the review
The results of this review reflect the shortage of studies and uncertainty about the effects of palliative care. Evidence was low or very low for differences between palliative care and usual care regarding long-term quality of life, adverse events, and hospital admission. Fatigue, cognitive function, relapse-free survival, or sustained progression-free survival were not reported in the studies.
Authors’ conclusions
Current evidence does not support or refute the routine use of palliative care interventions for people with MS. This review highlights the scarcity of data about the complex intervention, limiting evidence-based clinical practice. Until further studies are published, the decision about use of multidisciplinary palliative care interventions adjunctive to usual care should be taken (considering patients’ needs and available resources).
What is required next?
Future high-quality studies are required that include participants with an EDSS < 8.0 (less disability) Multiple Sclerosis, well-defined assessments (of psychological, physical, and spiritual approaches), global management interventions, and adequate report details of outcomes based on the COMET initiative.
Multiple sclerosis (MS) is a progressive disabling disease that affects approximately 2.3 million people worldwide. It is an autoimmune, inflammatory, and demyelinating disorder that results in brain and spinal cord neural changes. It affects movement, cognition, and activities of daily living that substantially influence a person’s autonomy and quality of life. People generally are diagnosed with Multiple Sclerosis during their income-producing years, and the subsequent loss of self-sufficiency contributes to a high emotional, social, and physical impact, increasing the burden for the person with MS, caregivers, and health systems.
Palliative care aims to improve the quality of life of both person with MS and families, targeting pain and psychological, spiritual, and social problems of people with a disease who are not responding to curative treatments. Palliative care interventions can be divided in early-disease course, symptomatic-management improving quality of life, and end-of-life care for the terminally ill. They generally are delivered by a multidisciplinary team including specialists (medical doctors, nurses, social workers, chaplains, physiotherapists, occupational therapists, dentists, psychologists, and psychiatrists). Palliative care can be administered in different settings, like community, hospitals, hospices, daycare, outpatient clinics, and the person’s home.
Despite many research and interventional developments for reducing and slowing the disease, MS progression remains traumatic and life-threatening for individuals and their families. Some primary studies infer the palliative care effectiveness, but a comprehensive synthesis would help people with MS, healthcare professionals, families, and policymakers. It also would help in making treatment choices and time for considering palliative care.
What does this review discuss?
The objective is to assess the effects (benefits and harms) of palliative care interventions in patients with MS where predominantly comparison is between palliative and usual care. The review included three clinical trials with 146 adult participants with a diagnosis of relapsing-remitting, secondary-progressive, and primary-progressive MS types. Two of the studies compared palliative care with multidisciplinary standard care and waiting-list control, whereas one of the studies compared palliative care versus standard care at different time points (12, 16, and 24 weeks). The outcome of these home-based interventions were assessed based on (I) health-related quality of life, (II) adverse events (pain, sleep disturbance, or any other event), (III) fatigue, (IV) cognitive function, (V) anxiety and depression, (VI) disability, (VII) hospital admission, (VIII) relapse-free survival, and (IX) sustained progression-free survival. The authors also described how palliative care intervention and different strategies may work in MS.
Key results of the review
The results of this review reflect the shortage of studies and uncertainty about the effects of palliative care. Evidence was low or very low for differences between palliative care and usual care regarding long-term quality of life, adverse events, and hospital admission. Fatigue, cognitive function, relapse-free survival, or sustained progression-free survival were not reported in the studies.
Authors’ conclusions
Current evidence does not support or refute the routine use of palliative care interventions for people with MS. This review highlights the scarcity of data about the complex intervention, limiting evidence-based clinical practice. Until further studies are published, the decision about use of multidisciplinary palliative care interventions adjunctive to usual care should be taken (considering patients’ needs and available resources).
What is required next?
Future high-quality studies are required that include participants with an EDSS < 8.0 (less disability) Multiple Sclerosis, well-defined assessments (of psychological, physical, and spiritual approaches), global management interventions, and adequate report details of outcomes based on the COMET initiative.
Comment by Sunita Gudwani