Survey snapshot by Debs Littell
Overall, we had just under 50% of our Facebook members participate in the survey most of which are patients. This was a great result.
From the data gathered, it may still surprise some of you to understand that 59% of the responders were NEVER smokers and a further 26% had given up over 10 years prior to their diagnosis so that’s a whopping 86% that are classified as non-smokers. This is why lung cancer in particular EGFR+ is not a smoker’s disease and we will continue to dispel this myth.
Diagnosis is a very difficult time for us all and I was particularly surprised to see that from the group surveyed only 25% sought any counselling help. This opens up a number of areas for questioning and may be an area we can offer support in the future.
Other areas that jumped out at me were that 85% were diagnosed at Stage 4 and 75% overall were diagnosed as having EGFR+ mutation within 4 weeks. I think this clearly shows that our campaign for early diagnosis still has work to do and it will be interesting to continue to monitor this statistic into the future to see if we can move the dial on earlier diagnosis.
We also asked the surveyed group some questions around the treatment and scans that they receive and the large majority, over 90%, were having regular scans either CT or PET. However, some of you (27%) were having to wait a long time (over 2 weeks) for your scan results. This is another area where I believe we can lobby for change.
And finally, Next Generation Sequencing and the greater use of Liquid Biopsies, it was interesting to see from the group that there was little knowledge in this area and I’m sure this is an area we can address, knowledge is power!