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.

Abstract Body

2020 saw an increase in publications in palliative care for Parkinson disease(PD). In particular, a large randomized controlled trial compared ambulatory palliative care to regular care with a primary care physician and neurologist. This study demonstrated that over the course of 1 year, quality of life improved, caregiver strain reduced and symptoms measured by the Edmonton Symptoms Assessment System - rPD demonstrated improved symptom control.

Other results from this study highlighting the importance of caregivers to our patients with PD will be highlighted.

Additionally, during this year of COVID, reports of how patients are managing, addressing advance care directives and other advice for those seeking to deliver a palliative approach to PD emerged. These will be discussed during the session.

Finally, those who are seeking to incorporate palliative care principles in their practice/program should be heartened to know that organizations such as the European Academy of Neurology and Parkinson Foundation are focusing on palliative care for PD predicting this will become the new standard of care for excellence in movement disorders.

Abstract Body

Palliative care has been closely involved in the care of people with neurological disease for many years and is recommended within many guidelines. The palliative care needs of neurological patients are well described – physical, psychological and emotional, social and spiritual – together with the needs of caregivers.

There has been increasing evidence, of variable quality, of the effectiveness of palliative care for people with life limiting disease, with evidence of reduced symptom burden, improved quality of life, reduced caregiver burden and increased ability of patients to be cared for at home.

Studies of a short-term palliative care intervention for people with advanced MS showed that symptoms were improved, caregiver burden was reduced and support by MS specialist nurses, who had received education in palliative care, also showed improvement in symptoms.

A multidisciplinary approach was shown to increase quality of life, reduce symptoms, in particular pain, breathlessness, sleep disturbance and bowel problems and did not increase mortality. A large study in the UK has again shown that there was improvement in pain, sleep, nausea and bowel issues, with no change in mortality. There were reduced health and social care costs. Patients and caregivers appreciated the services and felt that the care helped to increase their resilience, attended to deficits and needs an enabled carer in care at home.

Thus, there is increasing evidence that palliative care is effective in supporting and managing the symptoms and other issues of patients and families and has few adverse effects but reduces costs.