EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis

Abstract

Background and Purpose: 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. Methods: 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.

A realist review of advance care planning for people with multiple sclerosis and their families

“…Relevance is critical for ACP. Although Solari et al [ 14 ] recently reported that as many as 89% of people with severe MS want to discuss ACP, preliminary findings from a study on ACP in MS indicate that while participants were generally positive about ACP, it was no more relevant to them than to anybody, regardless of their MS diagnosis. Concerning their MS specifically, participants were reluctant to engage in ACP because of the uncertainty of their disease trajectory [ 15 ].…”

“…For example, relationship building may open a trusting platform on which more accurate and realistic prognostic information can be shared with people with MS; this is essential to help them make sense of their illness and reframe their self-image. Recent European Academy of Neurology (EAN) guidelines for palliative care in MS include early discussion of disease progression and future planning with people with severe MS [ 14 ]. Realistic hope is also important; our findings indicate health professionals do not discuss ACP for fear of distressing people with MS.…”

Palliative care in multiple sclerosis: European guideline

“…Ten clinical questions were formulated. 9,10 They encompassed general and specialist palliative care, advance care planning, discussion with healthcare professionals the patient’s wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers (training programs on caregiving; practical and/or emotional support programs), and interventions for healthcare professionals (MS professionals’ training in palliative care; palliative care professionals’ training in MS care).…”

“…A total of 34 recommendations (33 weak, 1 strong) and 7 good practice statements were developed. 9,10 The provision of home-based palliative care, either general or specialist, is recommended with weak strength. 9,10 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 healthcare professionals.…”

“…9,10 The provision of home-based palliative care, either general or specialist, is recommended with weak strength. 9,10 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 healthcare professionals. Further research on the integration of palliative care and MS care is needed, including consideration of the various models of palliative care provision.…”