Researchers at King’s College London have been collecting input as part of a project aimed at disseminating information on the progress in lupus genetics to the general public.
In March/April 2017 their online survey advertised through patient contacts and the LUPUS UK website and social media channels received 578 responses. These responses came from both lupus patients and relatives. Here is a brief summary of some of the findings;
- Generally patients (66%) and relatives (61%) were aware that lupus is partly caused by genetics.
- Patients and relatives showed some general awareness of the risk factors for SLE; smoking, UV light, hormones and diet. Exposure to UV light was the factor most strongly associated in the minds of patients (84%) and relatives (67%).
- Stress was most commonly suggested as an additional risk factor along with other suggestions such as viruses and certain drugs.
- 98% of patients and 100% of relatives expressed an interest in learning more about the genetics of lupus. There was also a lot of interest in learning about genetics more generally (77% of patients and 70% of relatives).
- The majority of respondents suggested they would prefer an online education about lupus genetics, although a fair number were interested in a short course at a university.
- Other suggestions for education on this topic included the publication of leaflets/booklets.
- Many respondents expressed an important part of their interest in the genetics of lupus was to understand more about how or why the disease may be passed through families and whether children/grandchildren could be affected.
You can read the full report of the findings HERE.
Focus Group Meeting
Following the online survey, the researchers organised a focus group meeting which invited a small number of lupus patients to learn more about current progress in lupus genetics research and to generate ideas for how best to disseminate the information. The afternoon at the Wellcome Collection in London was very interesting for everyone involved and provided lots of valuable input for the researchers. We look forward to hearing more in the future regarding any plans for an education programme.