Quality of Life Measures in Patients With Retinal Degeneration

University of Oxford

Status

Completed

Conditions

Retinal Degeneration

Treatments

Other: Computerised contrast sensitivity function test

Other: Questionnaire

Study type

Observational

Funder types

Other

Identifiers

NCT02814435

QoLMeasuresIRD

Details and patient eligibility

About

Inherited retinal degeneration (IRD) is a major cause of blindness and partial loss of vision cases in the UK and starts at an early age. The purpose of this observational study is to use the results of two questionnaires and a computerised test testing contrast sensitivity, to assess the impact of IRD on quality of life. This study will involve collecting data from patients with IRD, but also collecting data from normal controls.

Full description

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.

Enrollment

90 patients

Sex

All

Ages

18 to 85 years old

Volunteers

Accepts Healthy Volunteers

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;
- 1. they have any other retinal problems that may confound the measures assessed.