Clinical Practice Guideline on Palliative Care of People with Severe MS is a joint initiative of the European Academy of Neurology (EAN), RIMS, the European Association for Palliative Care (EAPC), and has been endorsed by the ECTRIMS and by the International Federation (MSIF).
The guideline task force, chaired by Alessandra Solari, consists of health professionals from three disciplines (neurology, palliative care, and rehabilitation), methodologists, and patient advocates from nine European countries: Bulgaria, Germany, Denmark, Israel, Italy, the Netherlands, Serbia, Spain, and the UK. In 2018 the task force formulated the 10 clinical questions (box), involving health professionals external to the task force and over 950 MS patients and caregivers from the participating countries via an online web survey and focus group meetings .
From over 17000 records screened, 66 studies (73 publications) were included in the literature review, mostly pertaining to clinical questions 1 (symptomatic treatments) and 2 (multidisciplinary rehabilitation). For the key clinical questions 4 and 5, individual participant data meta-analysis of the randomized controlled trials currently available is under way. No study was found for clinical questions 3, 8-10. Formulation of the guideline recommendations (and knowledge gaps) is expected by June 2019.
- "Patient and caregiver involvement in formulation of guideline questions: Findings from the EAN Guideline on Palliative Care of People with Severe Multiple Sclerosis. Eur J Neurol. 2019; 26(1):41-50."
Köpke S, Giordano A, Veronese S, et al.
Box: the 10 guideline clinical questions, each with the results of the literature search and study selection.