Patient and caregiver involvement in the formulation of guideline questions: findings from the European Academy of Neurology guideline on palliative care of people with severe multiple sclerosis.
S KöpkeA GiordanoS VeroneseA Christin RahnI KleiterB Basedow-RajwichA FornariM A BattagliaJ DrulovicL KooijJ KoopsJ MensEdwin-Roger Meza-MurilloI MilanovR MiloFrancesco PattiT PekmezovicJ Sastre-GarrigaJ VosburghR VoltzJ BayD J OliverAlessandra SolariPublished in: European journal of neurology (2018)
Multiple sclerosis patient and caregiver involvement was resource and time intensive, but rewarding. It was the key for the formulation of the 10 guideline questions and for the identification of patient-important outcomes.