Patient and clinician perspectives on Sickle Cell Retinopathy
Research type
Research Study
Full title
Qualitative study on burden of illness in proliferative sickle cell retinopathy - Understanding patient and clinician perspectives
IRAS ID
337729
Contact name
Christiana Dinah
Contact email
Sponsor organisation
London North West University Healthcare
Duration of Study in the UK
0 years, 7 months, 0 days
Research summary
Sickle-cell disease is one of the most common genetic disorders in the UK, with over 15000 people affected, most of whom are of African or Asian descent. Sickle-cell disease causes blockage of blood vessels causing pain and damage to various organs. It can cause reduced vision, most commonly by by affecting the film that coats the inner part of the eye (known as the retina). It causes unwanted blood vessels to grow on the retina, which can either bleed or pull the retina away from the wall of the eye causing significant sight loss. However, these unwanted blood vessels may also shrink away on their own. This effect on the eye is known as sickle cell retinopathy (SCR). SCR can lead to loss of vision, difficulty reading, driving, conducting daily activities and work.
There is currently no national screening guidelines for SCR and we do not know how SCR affects vision-related quality of life. In this qualitative study, we are aiming to ask patients who have been affected by sight loss (temporary or permanent) due to SCR about their awareness of SCR and how the visual symptoms affect or affected their everyday lives. This will be done using in-person, video or telephone interviews.
In parallel, we aim to explore clinicians' perspectives on retinal screening and care for SCR. We aim to include clinicians who currently screen for SCR, and their views on and experiences of current screening pathways, and any challenges with attendance or other aspects of screening. We will also include clinicians who do not currently screen for SCR, and understand their views on the barriers and facilitators to screening, and the benefits and challenges they believe screening could bring.
Bringing patient and clinician perspectives together will provide a holistic understanding of the current landscape of SCR screening and care.
REC name
North of Scotland Research Ethics Committee 1
REC reference
24/NS/0008
Date of REC Opinion
16 Jan 2024
REC opinion
Favourable Opinion