This was a chance for people to highlight what the important current and future priorities for support are and to discuss the research and information sharing that is needed.
There were two rounds of 30-minute discussion during the session. When registering for the day, attendees identified who they wished to speak with and everyone got to talk with at least one of their choices.
Prior to the day, several researchers and staff from Moorfields and the UCL Institute of Ophthalmology took part in a training afternoon to learn how to facilitate group conversations. They then helped to manage these discussions on the day so that they were as useful as possible and everyone involved could share their point of view.
What did you have to say?
- Many people had negative diagnosis stories; people described ‘not hearing anything else’ once they were told Stargardt’s disease had no cure and was untreatable
- People reported receiving either no information about support at the time of diagnosis or being unable to take this information in
- People said that no referral to any support / charity worker was offered, people felt left to seek their own information, mostly online, once the impact of the diagnosis had subsided
- People diagnosed later in life equated ‘no cure’ with ‘no point’ and said they hadn’t sort further information
- An ‘Information sheet’ on Stargardt’s disease and support that can be given to people at the time of diagnosis is needed
- Once Stargardt’s disease has been identified in a family, could there not be a choice of broader family screening (i.e. achieving diagnosis in advance of symptoms)
- Doctors and GPs need to be more aware of what information patients need
Confusion with Age-related Macular Degeneration (AMD):
- People found information relating to ‘macular degeneration’ tended to focus on AMD. Is this information useful for people with Stargardt’s disease as well? People were more aware of AMD and particularly for people diagnosed later in life, there is confusion that Stargardt’s disease is a type of AMD and ‘just’ part of getting older, which builds upon feelings of ‘no point’
- Some people who were younger when they were diagnosed were told that they had ‘macular degeneration’ (rather than Stargardt’s disease) and that this was unusual in young people. They reported that having this vaguer diagnosis made it easier to 24 seek out information because it signposts you to more than the term ‘Stargardts’
Support services and information:
- Those who had experience of the support offered by the organisations in attendance were very positive of them, the counselling and helpline services in particular
- However, many said they were unsure of where to go for information and support; online the search term ‘Stargardts’ doesn’t necessarily find these organisations; much of the information found is often from the USA and can be USA specific
- It isn’t always clear from the name of an organisation whether they can help people with Stargardt’s disease or which organisations offer which kinds of support
- Stargardt’s Facebook groups are useful for engaging with others and getting immediate answers to your questions. Local support groups are also helpful
- Information in the form of case studies and FAQ’s are often more help and personal than an information leaflet; electronic formats like email are better so people can make use of screen readers
- Printed information must be in visually accessible formats including large fonts and spacing
- Suitably aged ‘role models’ and dedicated, appropriate support for school- and working-age people is needed
- It isn’t always clear where to find out about taking part in leisure and recreational activities for people with visual impairment – local council and sport development officers; online search for ‘blind sport’; physical education department of local schools etc.; local gyms and leisure centres are sources of information
- Some people worry about people being ‘singled out’ by joining special blind and visual impairment sports clubs
- Most recreational sports for people with visual impairment seem limited to big cities and not rural areas
- Could there be a card for people with visual impairment that can be shown to others to help explain you have low vision and provide key information about your condition?
- A resource dedicated to Stargardt’s disease that can help raise awareness of support organisations with accurate and up to date information would be welcomed; it should link to other organisations
- There is a fear of the ‘unknown’ and a need for a forum where people can meet others of a similar age or circumstance (e.g. children, parents etc.); share diagnosis stories; get help, support and advice from ‘mentors’ on their options now and at the next stage of life - school, work, dating etc.
Designing a patient register/website for Stargardt’s disease:
- These resources should provide an opportunity to meet others regularly, share stories that will help and inspire others, seek advice and support and information on supporting organisations
- They should aid in raising awareness of Stargardt’s disease and help with raising money
- The register should be open to people from abroad as well and should help with both clinical trials and developing tools and instruments to help people with Stargardt’s disease
- Is the term ‘Stargardts’ friendly enough for people? The society Foundation Fighting Blindness has a register called ‘My Reina Tracker’ which is catchy and doesn’t immediately suggest visual impairment
- Younger people should be involved in helping to design the website and inform specifically on what their needs are. Perhaps young people could have a dedicated resource just for them?
- Should the data of younger people on the register be treated differently to that of adults (i.e. anonymised)?
Priorities in research:
- More information is needed on the progression of the condition and what, if any, factors may accelerate or slow the progression – what could people do to help ‘control’ the condition themselves
- People’s priorities for research into restoring sight vs. slowing progression may depend on what stage your condition is at
- It is difficult to distinguish genuine clinical trials from ‘quackery’
- People with more advanced sight loss, who felt they have adapted well, were more concerned for the next generation
- Many are unaware that patients can offer a valuable contribution to research outside of clinical trial (e.g. giving blood samples to study)
- Doctors and GPs are often not up to date on research
- A reliable and consolidated source of information on research and legitimate clinical trials and studies, that is updated regularly, is needed