Quality of Life Measures in Patients With Retinal Degeneration

IRD presents a significant burden on the NHS as well as on the individual and families. IRDs 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. 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 IRDs.

Inclusion criteria

• Participant is willing & able to give informed consent for participation in the study.
• Male or female, aged 18 - 85.
• A clinical or genetic diagnosis of retinal degeneration or normal age and sex-matched controls without known retinal disease.
• Able to participate in visual function testing.

Exclusion criteria

• The participant may not enter the study if any of the following apply:

• 1) they have a pre-existing amblyopia or squint;
• 2) they have any other retinal problems that may confound the measures assessed.