Title: The patient perspective of living with Multiple Sclerosis : the Swiss Database of Patients‘ Narratives
Authors : Glässel, Andrea
Streeck, Nina
Hendriks, Manya
Petry, Heidi
Kesselring, Jürg
Biller-Andorno, Nikola
Conference details: MS Researcher Meeting, Lucerne, 26 January 2018
Publisher / Ed. Institution : Swiss Multiple Sclerosis Society
Issue Date: 2018
License (according to publishing contract) : Not specified
Type of review: Peer review (Abstract)
Language : English
Subjects : Patient perspective; Qualitative research; Multiple Sclerosis; Patient experiences
Subject (DDC) : 616.8: Neurology, diseases of nervous system
Abstract: Introduction: Listening to patients’ voices is increasingly being recognized as an important factor for continu-ous improvement in health care. Integrating patients’ stories about their experiences with multiple sclerosis (MS) seems paramount considering the relatively high prevalence of MS and its life-changing consequences for those affected and their families. The Swiss database of patient narratives provides a systematic and methodologically rigorous collection of interviews about the real-life experiences with health issues and presents them as video- and/or audio-sequences on a website. Objective of this study is to describe a wide range of people’s individual experiences of health and disease, to understand what matters to them and to provide a rich information resource for people with MS and for those who look after them. Relevance of the study: This is the first introduction of the project of patients’ experiences with MS in Swit-zerland. We want to show learning about patients’ perspectives based on qualitative re-search can be bene-ficial in a variety of ways: A) Improving health care: Narratives provide a valuable source of information on patients’ perspectives that can help improve health care. B) Self-help and patient engagement: People facing similar issues benefit from consulting the website by gaining information and cope with MS more effectively. C) Education: The database of patients’ voices can also be used as a resource in teaching in medical and health professionals to better understand MS patients’ needs and priorities. D) Research: The project contributes to health-related narrative research and offers the opportunity to get involved in this growing field of interprofessional research. Methodology: The project is part of the international DIPEx network, represented by fourteen countries, leaded by UK (www.healthtalk.com). DIPEx works with a well-established and rigorous qualitative research methodology developed by the University of Oxford in 2000. Results: We interviewed Swiss wide 32 people with multiple sclerosis concerning personal experiences of health and illness, in collaboration with the MS registry of Switzerland. Conclusion: Understanding what is important for patients when they are ill is a crucial prerequisite for the development of patient-relevant outcomes, quality measures, and for identifying opportunities for improve-ment and best-practice models.
Departement: Health Professions
Organisational Unit: Institute of Health Sciences (IGW)
Publication type: Conference Poster
URI: https://digitalcollection.zhaw.ch/handle/11475/16487
Appears in Collections:Publikationen Gesundheit

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