Abstract Body

The Clinical Practice Guideline on Palliative Care (PC) of People with Severe Multiple Sclerosis (MS) was a joint initiative of the EAN, EAPC, RIMS, and has been endorsed by ECTRIMS and MSIF. The guideline followed the GRADE methodology, and was devised by a task force of health professionals (HPs) from three disciplines (neurology, PC, and rehabilitation), methodologists, and patient advocates from nine countries. Ten clinical questions were formulated, involving HPs and over 950 MS patients and caregivers from the participating countries. These clinical questions encompassed general and specialist PC, advance care planning (ACP), discussing with HPs the patient’s wish to hasten death, symptom management, multidisciplinary rehabilitation, interventions for caregivers (two questions), and interventions for HPs (two questions). For six of the clinical questions (general and specialist PC, symptom management, multidisciplinary rehabilitation, and interventions for caregivers) 34 evidence-based recommendations were produced (one of which was a strong recommendation) and one good-clinical-practice statement. Six additional statements were formulated for the clinical questions where evidence was lacking: ACP, discussion with HPs of the patient’s wish to hasten death, and interventions for HPs. Besides providing evidence-based guidance to HPs involved in the care of people with severe MS, this guideline emphasizes the need for further research on the integration of PC and MS care, including consideration of the various models of (palliative) care provision in this population. To help bridge this knowledge gap, selected task force members are now leading a project aimed to constructing and testing the efficacy of a MS-specific ACP intervention.