Time for a new QOL survey

[Cllcanada]

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.

Article .. you must sign up to read

cll.atpointofcare.com/pocwe...

Original 2007 Survey

onlinelibrary.wiley.com/doi...

[carnvellan]

I've taken a look at the survey results. When you say someone needs to take this on, what do you mean and what would it involve?

[Cllcanada Top Poster CURE Hero in reply to carnvellan]

The survey link was broken... its now fixed...

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

[carnvellan in reply to Cllcanada]

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.

[Cllcanada Top Poster CURE Hero in reply to carnvellan]

I haven't seen Chaya since 2012... the survey was on her website...

Not sure if continuity is that important...perhaps a totally fresh start is in order... ?

~chris

[MsLockYourPosts Passed Volunteer in reply to carnvellan]

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.