S Köpke1, A Giordano2, S Veronese3, A Christin Rahn4, I Kleiter5, B Basedow-Rajwich5, A Fornari2, M A Battaglia6, J Drulovic7, L Kooij8, J Koops8, J Mens8, E R Meza Murillo9, I Milanov10, R Milo11,12, F Patti13, T Pekmezovic14, J Sastre-Garriga9, J Vosburgh15, R Voltz16, J Bay17, D J Oliver18, A Solari2. 1. Institute of Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany. 2. Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy. 3. FARO Charitable Foundation, Turin, Italy. 4. Institut für Neuroimmunologie und Multiple Sklerose (INIMS), Universitätsklinikum Hamburg-Eppendorf, Hamburg, Germany. 5. Kempfenhausen Centre for Treatment of Multiple Sclerosis, Marianne-Strauß-Klinik, Berg, Germany. 6. Department of Life Sciences, University of Siena, Siena, Italy. 7. Clinic of Neurology, CSS, Faculty of Medicine, University Hospital of Belgrade, Belgrade, Serbia. 8. Nieuw Unicum, Zandvoort, The Netherlands. 9. MS Centre of Catalonia (Cemcat), University Hospital Vall d'Hebron, Barcelona, Spain. 10. Neurology Clinic, Medical University of Sofia, Sofia, Bulgaria. 11. Department of Neurology, Barzilai Medical Center, Ashkelon, Israel. 12. Faculty of Health Sciences, Ben-Gurion University of the Negev, Beer-Sheva, Israel. 13. Neurology Clinic, Multiple Sclerosis Centre, University Hospital Policlinico Vittorio Emanuele, Catania, Italy. 14. Institute of Epidemiology, Faculty of Medicine, University of Belgrade, Belgrade, Serbia. 15. Israel Multiple Sclerosis Society, Tel-Aviv, Israel. 16. Department of Palliative Medicine, University Hospital Cologne, Cologne, Germany. 17. Multiple Sclerosis International Federation, People with MS Advisory Committee, Copenhagen, Denmark. 18. The Tizard Centre, University of Kent, Canterbury, UK.
Abstract
BACKGROUND AND PURPOSE: Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance. The aim was to engage multiple sclerosis (MS) patients and caregivers in the definition of the key questions to be answered in the European Academy of Neurology guideline on palliative care of people with severe MS. METHODS: A mixed methods approach was used: an 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 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 analysed: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) were 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 focus group meetings (three of MS patients, two of caregivers, and overall 35 participants) corroborated the survey findings. In addition, they allowed an explanation of the guideline production process and the exploration of patient-important outcomes and of taxing issues. CONCLUSIONS: 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.
BACKGROUND AND PURPOSE:Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance. The aim was to engage multiple sclerosis (MS) patients and caregivers in the definition of the key questions to be answered in the European Academy of Neurology guideline on palliative care of people with severe MS. METHODS: A mixed methods approach was used: an international online survey launched by the national MS societies of eight countries, after pilot testing/debriefing on 20 MSpatients and 18 caregivers, focus group meetings of Italian and German MSpatients and caregivers. RESULTS: Of 1199 participants, 951 (79%) completed the whole online survey and 934 from seven countries were analysed: 751 (80%) were MSpatients (74% women, mean age 46.1) and 183 (20%) were 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 focus group meetings (three of MSpatients, two of caregivers, and overall 35 participants) corroborated the survey findings. In addition, they allowed an explanation of the guideline production process and the exploration of patient-important outcomes and of taxing issues. CONCLUSIONS:Multiple sclerosispatient 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.
Keywords:
best practice; clinical practice guideline; mixed methods; multiple sclerosis; online survey; palliative care; patient and public involvement
Authors: Jonathan Koffman; Clarissa Penfold; Laura Cottrell; Bobbie Farsides; Catherine J Evans; Rachel Burman; Richard Nicholas; Stephen Ashford; Eli Silber Journal: PLoS One Date: 2022-05-26 Impact factor: 3.752
Authors: Laura Cottrell; Guillaume Economos; Catherine Evans; Eli Silber; Rachel Burman; Richard Nicholas; Bobbie Farsides; Stephen Ashford; Jonathan Simon Koffman Journal: PLoS One Date: 2020-10-16 Impact factor: 3.240
Authors: Alessandra Solari; Andrea Giordano; Jaume Sastre-Garriga; Sascha Köpke; Anne C Rahn; Ingo Kleiter; Katina Aleksovska; Mario A Battaglia; Jette Bay; Massimiliano Copetti; Jelena Drulovic; Liesbeth Kooij; John Mens; Edwin R Meza Murillo; Ivan Milanov; Ron Milo; Tatiana Pekmezovic; Janine Vosburgh; Eli Silber; Simone Veronese; Francesco Patti; Raymond Voltz; David J Oliver Journal: J Palliat Med Date: 2020-05-29 Impact factor: 2.947