Quality of Life Measures in Patients With Retinal Degeneration


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.

Study Type

  • Study Type: Observational
  • Study Design
    • Time Perspective: Cross-Sectional
  • Study Primary Completion Date: October 2017

Detailed 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.


  • Other: Questionnaire
    • The participants will answer two questionnaires. These are the NEI VFQ-25 and the DLTV (daily living tasks of vision).
  • Other: Computerised contrast sensitivity function test
    • This test involves the patient identifying whether bars on a screen are horizontal or vertical. It is designed to measure contrast sensitivity.

Arms, Groups and Cohorts

  • Patients
    • Patients with inherited retinal degeneration will answer two questionnaires and undergo a computerised contrast sensitivity function test.
  • Normal controls
    • Normal controls recruited by advertising will answer two questionnaires and undergo a computerised test that assess contrast sensitivity function.

Clinical Trial Outcome Measures

Primary Measures

  • Impact of inherited retinal degeneration on quality of life measures.
    • Time Frame: May 2016 to May 2017
    • This will be assessed by comparing questionnaire results between different inherited retinal degeneration types.This will be determined by using ANOVA testing to compare scores caused by different genetic mutations, allowing us to relate mutations causing central versus peripheral visual loss to the quality of life measures.

Secondary Measures

  • Effect of contrast sensitivity function on quality of life.
    • Time Frame: May 2016 to May 2017
    • Contrast sensitivity function will be related to the questionnaire results using ANOVA testing & correlation analysis.

Participating in This Clinical Trial

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.

Gender Eligibility: All

Minimum Age: 18 Years

Maximum Age: 85 Years

Are Healthy Volunteers Accepted: Accepts Healthy Volunteers

Investigator Details

  • Lead Sponsor
    • University of Oxford
  • Provider of Information About this Clinical Study
    • Sponsor
  • Overall Official(s)
    • Jasleen K Jolly, MSc, Principal Investigator, University of Oxford

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