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

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. Results: 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. Conclusions: 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.

Study protocol: to investigate effects of highly specialized rehabilitation for patients with multiple sclerosis. A randomized controlled trial of a personalized, multidisciplinary intervention.

BACKGROUND: Multiple sclerosis (MS) is a complex, chronic and progressive disease and rehabilitation services can provide important support to patients. Few MS rehabilitation programs have been shown to provide health improvements to patients in a cost-effective manner. The objective of this study is to assess the effects in terms of changes measured by a variety of standardized quality of life, mastery, coping, compliance and individual goal-related endpoints. This combination provides the basis for analyzing the complexity of MS and outcomes of a personalized rehabilitation. METHODS/DESIGN: Patients with MS referred to hospital rehabilitation services will be randomized to either early admission (within two months) or usual admission (after an average waiting time of eight months). They will complete a battery of standardized health outcome instruments prior to randomization, and again six and twelve months after randomization, and a battery of goal-related outcome measures at admission and discharge, and again one, six and twelve months after randomization. DISCUSSION: The results of the study are expected to contribute to further development of MS rehabilitation services and to discussions about the design and content of such services. The results will also provide additional information to health authorities responsible for providing and financing rehabilitation services. TRIAL REGISTRATION: Current Controlled Trials (ISRCTN05245917).

Validation of the danish version of functional assessment of multiple sclerosis: a quality of life instrument.

The functional assessment of multiple sclerosis (FAMS) is a disease-specific instrument that describes functional status of individuals with multiple sclerosis. The instrument was originally developed in the US and has been adapted to different languages including Danish. This study is a validation of the Danish version of FAMS in a sample of individuals referred to a four-week rehabilitation program at either of the two Multiple Sclerosis Rehabilitation centers in Denmark. FAMS data were obtained through self-completed questionnaires from 190 individuals who attended the rehabilitation centers after referral by their general practitioner or specialist neurologist. The validation of the FAMS included assessment of data quality, scale assumptions, acceptability, construct validity, and reliability. Responsiveness was assessed by comparing individual FAMS scores at admission with the discharge score for groups of respondents who reported no change, improvement, or deterioration in their ability to cope with their illness. The Danish version of FAMS appears to be an acceptable, valid, and reliable measure of current health and functional status of individuals with multiple sclerosis.