Tuesday, April 15, 2014

Lymphoma Survey

The Lymphoma Coalition is once again asking Lymphoma patients (and caregivers) of all types, and from  all countries, to take their survey. You can find the English version of the survey here; if you want a different language, you can change it on the English survey, or you can find some language links on the Lymphoma Coalition home page. (You can also find a bunch of other interesting items, including a section of links titled "In the Node,"  a very funny play on "In the Know." I love lymphoma humor.)

The Lymphoma Coalition is a group of lymphoma-related organizations, most of which are national-level groups from different countries, though there are a few others that help either smaller or larger populations (including our pals at Patients Against Lymphoma, who run Lymphomation.org). They band together for things like this -- their global survey to look at trends in the experiences of lymphoma patients around the world. The results of the survey, especially when compared to previous surveys, help the organizations focus their missions and bring help to lymphoma patients.


Their last survey took place in 2012 (you can find the results here), and they found some interesting trends:

"a) A general lack of understanding and awareness of the signs and symptoms of an increasingly complex disease on the part of both patients and healthcare professionals that can typically result in late diagnosis ;
b) Misunderstanding about clinical trials as an effective option to treatment; and
c) A quality of life being experienced by lymphoma patients that requires improvement."

So it's definitely worth taking the survey. It will cost you, at most, about 10 minutes, and the result will be possible improvements in your life as a patient.

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