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

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KOPKE, Sascha | GIORDANO, Andrea | VERONESE, Simone | RAHN, Anne Christin | KLEITER, Ingo | BASEDOW-RAJWICH, Birgit | FORNARI, Arianna | BATTAGLIA, Mario Alberto | DRULOVIC, Jelena | KOOIJ, Liesbeth | KOOPS, Johan | MENS, John | MEZA MURILLO, Edwin Roger | MILANOV, Ivan | MILO, Ron | PATTI, Francesco | PEKMEZOVIC, Tatjana | SASTRE-GARRIGA, Jaume | VOSBURGH, Janine | VOLTZ, Raymond | BAY, Jette | OLIVER, David J. | SOLARI, Alessandra

BACKGROUND: Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance. OBJECTIVE: To engage multiple sclerosis (MS) patients and caregivers in definition of the key questions to be answered in the EAN Guideline on Palliative Care of People with Severe MS. METHODS: A mixed methods approach was used: International online survey launched by the national MS societies of eight countries, after pilot testing/debriefing on 20 MS patients and 18 caregivers; focus group meetings (FGMs) of Italian and German MS patients and caregivers. RESULTS: Of 1199 participants, 951 (79%) completed the whole online survey, and 934 from seven countries were analyzed: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) caregivers (36% spouses/partners, 72% women, mean age 47.4). Participants agreed/strongly agreed on inclusion of the nine pre-specified topics (from 89% for 'advance care planning' to 98% for 'multidisciplinary rehabilitation'), and <5% replied 'I prefer not to answer' to any topic. There were 569 free comments: 182 (32%) on the pre-specified topics, 227 (40%) on additional topics (16 guideline-pertinent), and 160 (28%) on outcomes. Five FGMs (three of MS patients, two of caregivers, overall 35 participants) corroborated the survey findings. In addition, they allowed the explanation of the guideline production process, the exploration of patient-important outcomes and of taxing issues. CONCLUSIONS: MS patient and caregiver involvement was resource and time intensive, but rewarding. It was key for the formulation of the 10 guideline questions, and for the identification of patient-important outcomes.

http://dx.doi.org/10.1111/ene.13760

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