Optimising visual functions for people with RP

About Retinitis pigmentosa (RP)

Retinitis Pigmentosa (RP) is one of the most common causes of severe visual impairment. It is common to use the abbreviation RP. In Norway, it is estimated that the target group consists of around 1,500 people, although there is no official register. A significant proportion of the users of the services at Eikholt National Resource Centre for Deafblindness belong to this group. This is partly due to the fact that the diagnosis Usher syndrome that include the visual diagnosis RP account for over 60 % of users.

Among people under the age of 70, those with RP are a large and important user group of the services at Hurdal Vision and Coping Centre, which is run by the Norwegian Association of the Blind.

Objectives of the RP project

The aim of the Retinitis Pigmentosa project, hereafter referred to as the RP Project, was to identify which measures are used to optimise visual function in people with RP. During the project period, we developed knowledge by testing some of these measures in collaboration with project participants with RP at different stages.

The measures addressed typical challenges associated with RP, including:

• Narrowed field of vision, also called tunnel vision
• Reduced vision in low light, also known as night blindness
• Glare and light sensitivity.

Another important part of the RP project was the methodological implementation, which aimed to give the participants the opportunity to learn about and gain deeper insight into their own visual impairment. The participants felt that the project increased their self-understanding and strengthened the project by adding valuable knowledge from their experiences with the various measures.

Recruitment of participants for the RP project

In a collaboration between Eikholt National Resource Centre for the Deafblind, Hurdal vision and coping centre and Retinitis Pigmentosa Association 12 good candidates were recruited to the project. These were 6 women and 6 men. They were evenly distributed from 33 to 68 years of age.

Since the project was mainly based on qualitative data, participants were chosen who were good at communicating their experiences and who, in dialogue with the project staff, could provide valuable feedback on each focus area.

Video presentations of measures and experiences from the RP project

In the videos below you will find 9 video presentations. Part 1 gives you a presentation of the project and its purpose. Part 2 deals with Retinitis Pigmentosa - what it is and about RP in Norway. This is followed by presentations on initiatives and experiences from the various project participants. The videos can be viewed as a series or individually. They have speech, text and Norwegian sign language.

Part 1: Introduction to the project

In this video, you get an introduction to the project "Optimising visual function in people with Retinitis Pigmentosa (RP)" by Rolf Lund, Researcher at Eikholt National Resource Centre for Deafblindness.

Part 2: Retinitis pigmentosa (RP) - what is it and what do we know about RP in Norway

Cecilie Bredrup, professor at Haukeland University Hospital and the University of Bergen, talks in part 1 of this video about Retinitis pigmentosa (RP) - what is it, and in part 2 about Retinitis Pigmentosa in Norway. Here you will hear about registries, quality improvement, treatment and research.

Part 3: Testing of an assistive device (Retiplus) that can compensate for a narrowed field of vision

In this video, Rolf Lund, Researcher at Eikholt, presents the Retiplus assistive device. This was one of the measures tested in the project "Optimising visual function in people with Retinitis Pigmentosa (RP)".

Part 4: Experiences with using the Retiplus assistive technology

How do people with RP experience the use of AR glasses as a technical aid in relation to orientation and mobility? In this video, Sindre Gåren Paulsen, master's student in vision education and visual rehabilitation at USN this theme.

Part 5: About vision training for people with RP

In this video, Arne Tømta, Vision and Mobility Educator, talks about vision training and RP. In this context, vision training is training and measures that enable you to use your remaining vision effectively.

Part 6: About RP and night vision - what can be done to improve this?

Dark vision is often the first symptom of Retinitis Pigmentosa (RP). In this video, Arne Tømta, Vision and Mobility Educator, talks about night vision and its importance in daily life. You'll hear about lanterns, alternative aids and tips for organisation.

Part 7: Filter glasses as an aid

What are filter glasses and what is the difference between filter glasses and regular sunglasses? In this video, Rolf Lund, Researcher at Eikholt, explains.

Part 8: About trialling filter glasses for people with RP

Do people with Retinitis pigmentosa have different preferences when choosing filter glasses to reduce glare and light sensitivity, and is there a correlation with the results of a colour vision test? Thorny Annette Bergan, master's student at USN, presents her master's project "Testing filter glasses for people with RP".

Part 9: The experience of participating as one of 12 experience consultants in the RP project

Monica Johansen has Retinitis Pigmentosa and has participated as an experience consultant. She has tested and provided feedback on assistive technology in the project "Optimisation of visual functions for people with RP".

Read more?

The Eikholts report: Retiplus. An innovation project.

Read also: What are filter glasses and how do you get them?

Want to read about other projects? Read more about projects organised by Eikholt here.

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