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Patients' and health professionals' views on shared decision-making in age-related macular degeneration care: A qualitative study
Department of Care and Participation of People with Chronic Conditions, Netherlands Institute for Health Services Research (Nivel), Utrecht, The Netherlands.
Department of Care and Participation of People with Chronic Conditions, Netherlands Institute for Health Services Research (Nivel), Utrecht, The Netherlands.
Department of Research, Breuer&Intraval Research and Consultancy, Groningen, The Netherlands.
University of Borås, Faculty of Caring Science, Work Life and Social Welfare. Department of Communication in Healthcare, Netherlands Institute for Health Services Research (Nivel), Utrecht, The Netherlands; Department of Primary and Community Care, Radboud University Medical Center, Radboud Institute for Health Sciences, Nijmegen, The Netherlands.ORCID iD: 0000-0002-1651-7544
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2022 (English)In: Ophthalmic & physiological optics, ISSN 0275-5408, E-ISSN 1475-1313, Vol. 42, no 5, p. 1015-1022Article in journal (Refereed) Published
Abstract [en]

Background Age-related macular degeneration (AMD) is one of the principal causes of irreversible visual impairment in the older adult population. Recent evidence indicates that there are signs of undertreatment and overtreatment, underdiagnosis and insufficient information provision in AMD care. Shared decision-making (SDM) can aid information sharing between patients and health professionals and enhances high-quality care. This research aimed to gain insight into patients' and professionals' views on SDM in AMD care. Methods Semi-structured interviews were conducted with 20 patients with AMD and 19 health professionals in June and July 2020. Participants were recruited through hospitals, professional and patient associations and (social) networks. Sample representativeness was ensured in terms of sociodemographic and disease characteristics for patients, and profession-related characteristics for health professionals. Interviews were analysed according to a predetermined coding framework. Results Although SDM is receiving attention in AMD care, health professionals and patients experienced barriers in making shared decisions. The most common barriers reported included limitations in treatment options, time constraints, strict treatment guidelines and patients' comorbidity. Furthermore, most patients indicated that they were not (fully) informed about all aspects of AMD trajectory, such as the possibility to discontinue therapy or the long-term and invasive character of treatment. Some patients expressed the need for a more empathic and person-centred communication style from their health professional. Conclusion The concerns raised by patients and health professionals suggest that there is room for improvement in delivery of SDM in AMD care. Findings from this study indicate that information provision and communication can be improved.

Place, publisher, year, edition, pages
John Wiley & Sons, 2022. Vol. 42, no 5, p. 1015-1022
Keywords [en]
age-related macular degeneration, communication, information provision, shared decision-making, visual impairment, EXPERIENCE
National Category
Public Health, Global Health and Social Medicine Cell Biology
Research subject
The Human Perspective in Care
Identifiers
URN: urn:nbn:se:hb:diva-28114DOI: 10.1111/opo.13016ISI: 000811080600001Scopus ID: 2-s2.0-85131787318OAI: oai:DiVA.org:hb-28114DiVA, id: diva2:1680294
Note

This study was financed by the Dutch National Health Care Institute 

Available from: 2022-07-04 Created: 2022-07-04 Last updated: 2025-09-24Bibliographically approved

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van Dulmen, Sandra

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