Quality of Life Measures In Patients With Retinal Degeneration
Research type
Research Study
Full title
Quality of Life Measures in Patients With Retinal Degeneration
IRAS ID
205426
Contact name
Jasleen K Jolly
Contact email
Sponsor organisation
University of Oxford
Clinicaltrials.gov Identifier
In process, Clinicaltrials.gov
Duration of Study in the UK
1 years, 0 months, 16 days
Research summary
Retinal degeneration is a significant cause of blind and partial sight registrations in the UK 1 and starts at an early age. This presents a significant burden on the NHS as well as on the individual and families. Inherited retinal degenerations are particularly difficult in a family situation due to guilt and other complex emotions related to inheritance patterns. Poorer mental health has been reported in patients with retinitis pigmentosa, manifesting in a range of ways including stress, depression and anxiety, particularly as the disease progresses.3–5 This is most probably caused by the uncertainty of the disease process and the progressive nature of the degeneration.
Recent work has reported that quality of life significantly deteriorates with a drop in visual field diameter of 20 degrees or a drop in visual acuity lower then LogMAR 0.3 (equivalent to 6/12). Contrast sensitivity is often used in conjunction with VA to assess visual capabilities. It is a measure of the ability to see reduced contrast and has a major impact on utility of vision.Relating contrast sensitivity function to quality of life will provide valuable information about whether this aspect of vision is a critical measure for patient health. This is especially important as novel treatments are being developed for the treatment of inherited retinal degenerations.
REC name
South West - Frenchay Research Ethics Committee
REC reference
16/SW/0180
Date of REC Opinion
29 Jun 2016
REC opinion
Further Information Favourable Opinion