| Publikationstyp: | Konferenz: Poster |
| Art der Begutachtung: | Peer review (Abstract) |
| Titel: | The patient perspective of living with Multiple Sclerosis : the Swiss Database of Patients‘ Narratives |
| Autor/-in: | Glässel, Andrea Streeck, Nina Hendriks, Manya Petry, Heidi Kesselring, Jürg Biller-Andorno, Nikola |
| Angaben zur Konferenz: | MS Researcher Meeting / 20th State of the Art Symposium, Swiss Multiple Sclerosis Society, Luzern, 26 January 2018 |
| Erscheinungsdatum: | 2018 |
| Verlag / Hrsg. Institution: | Swiss Multiple Sclerosis Society |
| Sprache: | Englisch |
| Schlagwörter: | Patient perspective; Qualitative research; Multiple Sclerosis; Patient experiences |
| Fachgebiet (DDC): | 616.8: Neurologie und Krankheiten des Nervensystems |
| Zusammenfassung: | Introduction: Listening to patients’ voices is increasingly being recognized as an important factor for continuous 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 Switzerland. We want to show learning about patients’ perspectives based on qualitative re-search can be beneficial 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 improvement and best-practice models. |
| URI: | https://digitalcollection.zhaw.ch/handle/11475/16487 |
| Volltext Version: | Publizierte Version |
| Lizenz (gemäss Verlagsvertrag): | Keine Angabe |
| Departement: | Gesundheit |
| Organisationseinheit: | Institut für Public Health (IPH) |
| Enthalten in den Sammlungen: | Publikationen Gesundheit |
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Glässel, A., Streeck, N., Hendriks, M., Petry, H., Kesselring, J., & Biller-Andorno, N. (2018). The patient perspective of living with Multiple Sclerosis : the Swiss Database of Patients‘ Narratives. MS Researcher Meeting / 20th State of the Art Symposium, Swiss Multiple Sclerosis Society, Luzern, 26 January 2018.
Glässel, A. et al. (2018) ‘The patient perspective of living with Multiple Sclerosis : the Swiss Database of Patients‘ Narratives’, in MS Researcher Meeting / 20th State of the Art Symposium, Swiss Multiple Sclerosis Society, Luzern, 26 January 2018. Swiss Multiple Sclerosis Society.
A. Glässel, N. Streeck, M. Hendriks, H. Petry, J. Kesselring, and N. Biller-Andorno, “The patient perspective of living with Multiple Sclerosis : the Swiss Database of Patients‘ Narratives,” in MS Researcher Meeting / 20th State of the Art Symposium, Swiss Multiple Sclerosis Society, Luzern, 26 January 2018, 2018.
GLÄSSEL, Andrea, Nina STREECK, Manya HENDRIKS, Heidi PETRY, Jürg KESSELRING und Nikola BILLER-ANDORNO, 2018. The patient perspective of living with Multiple Sclerosis : the Swiss Database of Patients‘ Narratives. In: MS Researcher Meeting / 20th State of the Art Symposium, Swiss Multiple Sclerosis Society, Luzern, 26 January 2018. Conference poster. Swiss Multiple Sclerosis Society. 2018
Glässel, Andrea, Nina Streeck, Manya Hendriks, Heidi Petry, Jürg Kesselring, and Nikola Biller-Andorno. 2018. “The Patient Perspective of Living with Multiple Sclerosis : The Swiss Database of Patients‘ Narratives.” Conference poster. In MS Researcher Meeting / 20th State of the Art Symposium, Swiss Multiple Sclerosis Society, Luzern, 26 January 2018. Swiss Multiple Sclerosis Society.
Glässel, Andrea, et al. “The Patient Perspective of Living with Multiple Sclerosis : The Swiss Database of Patients‘ Narratives.” MS Researcher Meeting / 20th State of the Art Symposium, Swiss Multiple Sclerosis Society, Luzern, 26 January 2018, Swiss Multiple Sclerosis Society, 2018.
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