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EAN guideline on palliative care of people with severe, progressive multiple sclerosis. 2020

A Solari, and A Giordano, and J Sastre-Garriga, and S Köpke, and A C Rahn, and I Kleiter, and K Aleksovska, and M A Battaglia, and J Bay, and M Copetti, and J Drulovic, and L Kooij, and J Mens, and E R Meza Murillo, and I Milanov, and R Milo, and T Pekmezovic, and J Vosburgh, and E Silber, and S Veronese, and F Patti, and R Voltz, and D Oliver, and
Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.

Patients with severe, progressive multiple sclerosis (MS) have complex physical and psychosocial needs, typically over several years. Few treatment options are available to prevent or delay further clinical worsening in this population. The objective was to develop an evidence-based clinical practice guideline for the palliative care of patients with severe, progressive MS. This guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation methodology. Formulation of the clinical questions was performed in the Patients-Intervention-Comparator-Outcome format, involving patients, carers and healthcare professionals (HPs). No uniform definition of severe MS exists: in this guideline, constant bilateral support required to walk 20 m without resting (Expanded Disability Status Scale score > 6.0) or higher disability is referred to. When evidence was lacking for this population, recommendations were formulated using indirect evidence or good practice statements were devised. Ten clinical questions were formulated. They encompassed general and specialist palliative care, advance care planning, discussing with HPs the patient's wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers and interventions for HPs. A total of 34 recommendations (33 weak, 1 strong) and seven good practice statements were devised. The provision of home-based palliative care (either general or specialist) is recommended with weak strength for patients with severe, progressive MS. Further research on the integration of palliative care and MS care is needed. Areas that currently lack evidence of efficacy in this population include advance care planning, the management of symptoms such as fatigue and mood problems, and interventions for caregivers and HPs.

UI MeSH Term Description Entries
D010166 Palliative Care Care alleviating symptoms without curing the underlying disease. (Stedman, 25th ed) Palliative Treatment,Palliative Supportive Care,Palliative Surgery,Palliative Therapy,Surgery, Palliative,Therapy, Palliative,Care, Palliative,Palliative Treatments,Supportive Care, Palliative,Treatment, Palliative,Treatments, Palliative
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D017028 Caregivers Persons who provide care to those who need supervision or assistance in illness or disability. They may provide the care in the home, in a hospital, or in an institution. Although caregivers include trained medical, nursing, and other health personnel, the concept also refers to parents, spouses, or other family members, friends, members of the clergy, teachers, social workers, fellow patients. Family Caregivers,Informal Caregivers,Spouse Caregivers,Care Givers,Carers,Care Giver,Caregiver,Caregiver, Family,Caregiver, Informal,Caregiver, Spouse,Caregivers, Family,Caregivers, Informal,Caregivers, Spouse,Carer,Family Caregiver,Informal Caregiver,Spouse Caregiver
D020528 Multiple Sclerosis, Chronic Progressive A form of multiple sclerosis characterized by a progressive deterioration in neurologic function which is in contrast to the more typical relapsing remitting form. If the clinical course is free of distinct remissions, it is referred to as primary progressive multiple sclerosis. When the progressive decline is punctuated by acute exacerbations, it is referred to as progressive relapsing multiple sclerosis. The term secondary progressive multiple sclerosis is used when relapsing remitting multiple sclerosis evolves into the chronic progressive form. (From Ann Neurol 1994;36 Suppl:S73-S79; Adams et al., Principles of Neurology, 6th ed, pp903-914) Chronic Progressive Multiple Sclerosis,Multiple Sclerosis, Progressive Relapsing,Multiple Sclerosis, Remittent Progressive,Multiple Sclerosis, Primary Progressive,Multiple Sclerosis, Secondary Progressive,Primary Progressive Multiple Sclerosis,Progressive Relapsing Multiple Sclerosis,Remittent Progressive Multiple Sclerosis,Secondary Progressive Multiple Sclerosis
D032722 Advance Care Planning Discussions with patients and/or their representatives about the goals and desired direction of the patient's care, particularly end-of-life care, in the event that the patient is or becomes incompetent to make decisions. Advance Health Care Planning,Advance Medical Planning,Medical Planning, Advance,Planning, Advance Medical

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