Patients' and health professionals' views on shared decision-making in age-related macular degeneration care: A qualitative study

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.