We are interested in looking at how we can improve the information available for people with AS, their relatives and health care professionals. We asked you to complete a questionnaire regarding your use of the internet, written materials and sources of information you use. The results were:
211 people replied to the questionnaire and 7 in 10 (73%) have access to the internet. Younger people were more likely to have access to the internet with the majority of 20-59 year olds (9 in 10 people) having internet access. People used the internet because of its convenience and accessibility. They used it for communication, socialising as well as for information. The reasons not to use the internet were due to security issues, the discomfort of sitting in front of a computer (1 in 10 people reported the discomfort). In addition, internet service provider issues, time constraints and not being computer literate were popular reason for being discouraged from using the internet.
However, less than half of the people use the internet to find out about AS. It is the people aged 20-39 who are more likely to looked up AS online (7 in 10 people) but they only looked up information on AS about every six months. The main reason people do not use the internet for information about AS was they did not want any more information on AS, as it was seen as negative or “doom and gloom”. There was a lack of trust of the quality of the information available online.
In terms of written information, 50% of people reported to pick up written information (books, leaflets etc.) on AS. Written information was most commonly obtained from hospital clinics, charities and GP surgeries. The majority (66%) of people would like to receive a postal newsletter.
When asked about what could be provided to improve the information and support available for people with AS the main response was to improved access to professionals and services. Often, people were content with the level of AS information currently available for themselves but thought that there should be more information for GPs.
Conclusions: People appear to be largely content with the information currently available but would like better knowledge and support from GPs. We are therefore aiming to include a section on our www.ashealth.co.uk website that is targeted at health professionals in particular, where GPs can access guidebooks and any relevant AS information. In addition, people with AS would like greater public awareness of AS. We are currently organising a AS awareness day along Swansea seafront to take place on 24th October at Blackpill. We feel this is an ideal opportunity to help raise public awareness of AS in the community and hope you would like to come along with your friends and family.
Therefore, in conclusion the responses from the questionnaire suggests there should be more information for others (for members of the public and for health professionals) but there is adequate information for people with AS.