Providing Better Information and Support for the Treatment and Diagnosis of Patients Living with Age-Related Macular Degeneration (AMD)

Abstract

Age related Macular Degeneration (AMD) is a condition that causes loss of central vision in people aged 65 years and above and has a significant impact on their lives. Literature exploring the lived experiences and potential treatment of this condition has highlighted deficiencies in information provision for this group. As such, the purpose of this programme of work, is to understand and contribute towards the provision of better information and support for the diagnosis and treatment of patients living with this condition, using qualitative methods. This programme of work includes: a qualitative meta-synthesis, focus groups, observation, and analysis of in-depth interviewing using thematic analysis and critical narrative analysis, to get a better understanding of patients’ experiences of aspects relating to information provision across multiple dimensions of journey living with AMD. I present four separate studies each designed to answer specific research questions. The first is the meta-synthesis which sort to examine the presentation of information when consenting patients to treatment. The second study evaluated information materials currently available to AMD patients with the view to identify barriers and facilitators to their accessibility. The third study explored patients and clinician’ perceptions and experiences of information provision at diagnosis, particularly aspects that determine decision making to consent to treatment, methods to gain consent, including their preferences and priorities. The third study explored the views and experiences of first time attenders to AMD support groups. Through rigorous analysis, I identify a range of themes which highlight the shared and divergent experiences of participants in this programme of work regards information provision processes. I relate the findings of the four studies to the wider psychological literature on information provision & chronic illness and make recommendations for health care professionals and services to develop methods of information provision that are responsive to the needs, preferences and values of AMD patients.