This survey needs to be redone...anyone want to take this on?
Patient concerns change throughout the course of their disease as well, although patients at all disease stages are most concerned about the implication of CLL for their families and loved ones.
The next most pressing concerns for early-stage patients are uncertainty concerning disease progression and concern that their relatives may develop CLL, while patients with advanced disease are more concerned about the symptoms of their disease and the adverse effects of their treatments.
Organize a new study... design a survey for patients and families, co-ordinate the effort with an institution and CLL specialists, raise money to fund it, that kind of thing...
This survey was done primarily by Chaya Venkat and funded by patients through CLL Topics, It was done just at the dawning of FCR treatment... and now 10 years later we are entering a new age...
Quality of life is a major part of CLL, and hopefully things are improving in this area, patients may be living longer and happier, but without a study it is speculation.
Chris - I agree that this is important. To get started I'd need to speak with Chaya Venkat. I do not know where to contact her. She is in USA I believe but I think I read on CLL Topics that in 2013 she is no longer working and writing.
However I have research, management, organising and fund raising experience. I can make a start investigating what has been done since the last survey by others. I am sure there has been work and I was just listening to a presentation by Prof Fegan at the CLL Horizons Meeting where he quotes research which sounded recent on this very topic.
It would be great if others on this page can help.
You might try contacting Brian Koffman about CLLSociety.org sponsoring a new survey. I'm sure that your experience would be welcomed. I hope that any survey includes the issue of fatigue, which too many doctors dismiss.
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participate in online study cll Aus
UK Prioritisation of Patient Need Survey
