Christoph Heesen1, Jared Bruce2, Peter Feys3, Jaume Sastre-Garriga4, Alessandra Solari5, Lina Eliasson6, Vicki Matthews7, Bettina Hausmann8, Amy Perrin Ross9, Miho Asano10, Kaisa Imonen-Charalambous11, Sascha Köpke12, Wendy Clyne13, Paul Bissell14. 1. University Medical Center, Martinistrasse 52, Hamburg, 20246, Germany heesen@uke.uni-hamburg.de. 2. University of Missouri-Kansas City, Kansas City, Missouri, USA. 3. Hasselt University, Belgium. 4. Servei de Neurologia / Neuroimmunologia, Multiple Sclerosis Centre of Catalonia (Cemcat), Hospital Universitari Vall d'Hebron, Universitat Autònoma de Barcelona, Barcelona, Spain. 5. Istituto Neurologico C. Besta, Milan, Italy. 6. Alantis Healthcare, USA. 7. MS Trust, UK. 8. European MS Platform, Belgium. 9. International Organization of MS Nurses, USA. 10. Queens University, Canada. 11. European Patient's Forum, Belgium. 12. University Medical Center, Lübeck, Germany. 13. Coventry University, UK. 14. Section of Public Health, Sheffield, UK.
Abstract
BACKGROUND: Adherence to medical interventions is a global problem. With an increasing amount of partially effective but expensive drug treatments adherence is increasingly relevant in multiple sclerosis (MS). Perceived lack of efficacy and side effects as well as neuropsychiatric factors such as forgetfulness, fatigue and depression are major determinants. However, research on adherence to behavioural interventions as part of rehabilitative interventions has only rarely been studied. METHODS: In a one-day meeting health researchers as well as patient representatives and other stakeholders discussed adherence issues in MS and developed a general draft research agenda within a focus group session. RESULTS: The focus group addressed four major areas: (1) focussing patients and their informal team; (2) studying health care professionals; (3) comparing practice across cultures; and (4) studying new adherence interventions. CONCLUSIONS: A focus on patient preferences as well as a non-judgmental discussion on adherence issues with patients should be at the core of adherence work.
BACKGROUND: Adherence to medical interventions is a global problem. With an increasing amount of partially effective but expensive drug treatments adherence is increasingly relevant in multiple sclerosis (MS). Perceived lack of efficacy and side effects as well as neuropsychiatric factors such as forgetfulness, fatigue and depression are major determinants. However, research on adherence to behavioural interventions as part of rehabilitative interventions has only rarely been studied. METHODS: In a one-day meeting health researchers as well as patient representatives and other stakeholders discussed adherence issues in MS and developed a general draft research agenda within a focus group session. RESULTS: The focus group addressed four major areas: (1) focussing patients and their informal team; (2) studying health care professionals; (3) comparing practice across cultures; and (4) studying new adherence interventions. CONCLUSIONS: A focus on patient preferences as well as a non-judgmental discussion on adherence issues with patients should be at the core of adherence work.
Authors: Jared M Bruce; Amanda S Bruce; Sharon Lynch; Joanie Thelen; Seung-Lark Lim; Julia Smith; Delwyn Catley; Derek D Reed; David P Jarmolowicz Journal: Psychopharmacology (Berl) Date: 2018-09-22 Impact factor: 4.530