I wanted to post an update on the important survey currently being conducted by Leukemia Patient Advocates Foundation. They need more responses from CML patients so please spread the word on this.

Thanks

Kris

I want to update you on the situation of our International CML patients adherence survey. We have a great initial responses with 1177 responses from more than 60 countries, in less than 1 month since we have launched the survey on 22/9. I was also very happy to see that in some countries like Japan, Thailand, Indonesia, Switzerland and Venezuela, Local CML support group have taken upon themselves to translate and print the questionnaire, and have non internet users patients fill it, and then the Patients organization will input the data into the survey website.

 

Since our target is to have at least 2000 responses, and since we need at least 30 responses from a specific country to be able to do statistical analysis for that country, we feel that it is time to send reminders to your patients, and to encourage their participation. You may consider contacting the hematologists organization in your country to recruit their support and help.

 

We plan to close the collection phase of the survey at the end of December 2012.

 

We have received some questions about the importance and goals of this survey.

Even though it seems quite obvious that a CML patient will take his life saving drugs on a daily basis, 2 studies, The Adagio and the Hammersmith, have shown that about 25-30 % of the patients don’t take them as prescribed, and non adherence is directly associated with poor response and the main reason for loosing response.

A group of CML advocates has designed this important survey to better understand the reasons behind non adherence, and also to learn the cultural influences of different countries and regions. We hope that the results of this survey, will help us develop tools for patients and healthcare givers, to improve adherence.

Because this is a research done by patients for patients, we will share the results with you. This also allows us to examine the patterns of non adherence to different TKIs. 

Here is the link again

http://survey.euro.confirmit.com/wix5/p929997428.aspx