Providing better information and support for AMD patients
Research type
Research Study
Full title
Providing better information and support for the diagnosis and treatment of patients living with age related macular degeneration (AMD).
IRAS ID
186422
Contact name
Tawanda Pendeke
Contact email
Sponsor organisation
Aston University
Duration of Study in the UK
0 years, 8 months, 16 days
Research summary
Background
Age related macular degeneration (AMD) is a progressive chronic medical disorder that can lead to irreversible loss of central vision. It is a disorder that affects the macula and can occur in two forms; geographic atrophy (dry form) and neo-vascular (wet form).The macula is an important part of the retina that is utilized for valuable activities such as, facial recognition, reading and writing amongst other things (Mitchell & Bradley, 2006), loss of central vision, has an adverse impact on an individual’s quality of life (Mitchel, Bradley, Anderson et al., 2002). Provision of ‘adequate’ information is key to patients’ understanding of their condition and their ability to make informed decisions to consent to treatment, adjust to and manage living with the disorder.
Purpose
The purpose of this research study is to assess the quality and effectiveness of information materials currently available to people living with AMD by determining their experiences of using these materials, with the view to improving them.
Methodology
Participants with AMD will be recruited from the macular clinic at Birmingham and Midland Eye Centre(BMEC),Sandwell and West Birmingham NHS Trust.The sample pool will be representative of the surrounding population i.e. patients from various ethnic backgrounds.
Data will be analysed using thematic analysis. The analysis will be inductive but will also be guided by the aim of the research. The data will then be shared with the Experience Based Co-Design (EBCD) Working Group comprising of a team of experts(healthcare professionals, Researchers and expert patients)in order to evaluate and identify which aspects of the information currently available to AMD patients need improving to meet their needs. As such, the findings will be used in consultation with the working group to provide recommendations for the improvement and development of materials that meet the needs of AMD patients.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
16/YH/0099
Date of REC Opinion
8 Mar 2016
REC opinion
Favourable Opinion