Coping with gradual vision loss: living with Retinitis Pigmentosa

What is retinitis pigmentosa?

Retinitis pigmentosa (RP) is a group of inherited eye conditions that cause permanent changes to vision. Symptoms include gradual loss of peripheral vision and difficulty seeing in poor light and, in most cases, eventually result in blindness. For some, loss of sight may occur over a number of years, whereas for others, loss of vision may be rapid. RP affects approximately 1 in 3,000 to 4,000 people and currently there is no cure (with the exception of two very rare forms of RP).

The relationship between coping strategies and vision-related quality of life

Health psychology can contribute to developing ways to improve the quality of life of people living with RP. Krithika Anil is a recent graduate of the online MSc Health Psychology programme at the University of Derby. Supervised by Dr Gulcan Garip, she explored the relationship between the coping strategies of people living with RP, their vision-related quality of life, and emotional health. The 105 participants who volunteered their time to the study were recruited through the RP Fighting Blindness charity.

The main findings from the study were:

• 88% of participants perceived their RP as being moderately severe to severe
• The majority of participants – almost 70% – did not know or were unsure of their type of RP, suggesting there is a need to improve information for people living with the condition.
• Maladaptive or dysfunctional coping strategies, such as withdrawing or ignoring the condition, had a greater negative impact on people’s vision-related quality of life, compared to the positive impact of adaptive coping, such as identifying ways to overcome barriers related to reduced vision.
• Psychological and behavioural interventions to reduce maladaptive coping strategies are needed; however, more research is needed to develop and evaluate interventions to reduce maladaptive coping strategies and to promote acceptance and adaptation to RP.

Are researchers getting closer to a cure for RP?

Researchers have recently had success with using genome surgery in mice, cutting out faulty genes and replacing them with functioning genes to restore sight. It is expected that human trials will begin in 2021. While a cure for RP may be on the horizon, many people who live with RP may experience lower levels of vision-related quality of life compared to people without the condition.

Current research funding in RP focuses on the potential prevention, treatment, and cure for the condition, with little or no funding streams available for research to support people living with RP to understand, accept and adapt to the condition.

Dr Gulcan Garip is continuing research in this area and would like to hear from people who have been affected by RP and their thoughts on the need and importance of research to improve quality of life in people with RP.

Contact Gulcan at G.Garip@derby.ac.uk