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Patient and caregiver involvement in formulation of guideline questions: findings from the EAN guideline on palliative care of people with severe multiple sclerosis
Author(s): ,
A. Solari
Affiliations:
Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy
,
S. Köpke
Affiliations:
Institute of Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany
,
A. Giordano
Affiliations:
Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy
,
S. Veronese
Affiliations:
FARO Charitable Foundation, Turin, Italy
,
A. Rahn
Affiliations:
Institut für Neuroimmunologie und Multiple Sklerose (INIMS), Universitatsklinikum Hamburg-Eppendorf, Hamburg
,
I. Kleiter
Affiliations:
Kempfenhausen Centre for Treatment of Multiple Sclerosis, Marianne-Strauß-Klinik, Berg, Germany
,
B. Basedow-Rajwich
Affiliations:
Kempfenhausen Centre for Treatment of Multiple Sclerosis, Marianne-Strauß-Klinik, Berg, Germany
,
A. Fornari
Affiliations:
Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy
,
M.A. Battaglia
Affiliations:
Department of Life Science, University of Siena, Siena, Italy
,
J. Drulovic
Affiliations:
Clinic of Neurology, CSS, Faculty of Medicine, University Hospital of Belgrade, Belgrade, Serbia
,
L. Kooij
Affiliations:
Nieuw Unicum, Zandvoort, The Netherlands
,
J. Koops
Affiliations:
Nieuw Unicum, Zandvoort, The Netherlands
,
J. Mens
Affiliations:
Nieuw Unicum, Zandvoort, The Netherlands
,
E.R. Meza Murillo
Affiliations:
MS Centre of Catalonia (Cemcat), Hospital Vall d`Hebron, Barcelona, Spain
,
I. Milanov
Affiliations:
Neurology Clinic, University of Sofia, Sofia, Bulgaria
,
R. Milo
Affiliations:
Department of Neurology, Barzilai Medical Center, Ashkelon, Israel
,
F. Patti
Affiliations:
Neurology Clinic, Multiple Sclerosis Centre, University Hospital Policlinico Vittorio Emanuele, Catania, Italy
,
T. Pekmezovic
Affiliations:
Faculty of Medicine, Institute of Epidemiology, University of Belgrade, Belgrade, Serbia
,
J. Sastre-Garriga
Affiliations:
MS Centre of Catalonia (Cemcat), Hospital Vall d`Hebron, Barcelona, Spain
,
J. Vosburgh
Affiliations:
Israel Multiple Sclerosis Society, Hodayot, HaZafon (North) District, Israel
,
R. Voltz
Affiliations:
Department of Palliative Medicine, University Hospital Cologne, Cologne, Germany
,
J. Bay
Affiliations:
People with MS Advisory Committee, Multiple Sclerosis International Federation, Copenhagen, Denmark
D.J. Oliver
Affiliations:
The Tizard Centre, University of Kent, Canterbury, United Kingdom
ECTRIMS Online Library. Solari A. Oct 12, 2018; 229112
Alessandra Solari
Alessandra Solari
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Abstract: P1272

Type: Poster Sessions

Abstract Category: Therapy - Symptomatic treatment

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.
Disclosure: Dr. Drulovic serves on scientific advisory boards for Bayer Schering Pharma, Merck Serono, TEVA, Sanofi Genzyme and received speaker honoraria from Merck Serono, Teva, Bayer Schering, Sanofi Genzyme, Medis; and has also received research grant support from the Ministry of Education and Science, Republic of Serbia (project no. 175031). She is the principal investigator in clinical trials for Merck Serono, Teva, Biogen Idec, Roche, Sanofi Genzyme, Celgene, outside the submitted work. Dr. Pekmezovic received speaker honoraria from Teva, Roche, Medis, Gedeon Richter; and has also received research grant support from the Ministry of Education, Science and Technological Development of the Republic of Serbia (projects no. 175087 and 175090), outside the submitted work. Dr. Voltz reports personal fees from Prostrakan, Pfizer, MSD Sharp&Dome, AOK, grants from TEVA/EffenDys, Otsuka, DMSG/Hertie Stiftung, outside the submitted work. Dr. Solari reports grants from Italian MS Foundation (FISM), European Academy of Neurology, during the conduct of the study; she serves as board member for Merck Serono, Novartis; she received personal fees from Almirall, Excemed, Genzyme, Merck Serono, Teva, outside the submitted work. All the other authors have nothing to declare.

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