Quality of Life II survey –
The CML Society of Canada presented very preliminary findings from our Quality of Life II survey at the recent European School of Hematology (ESH) conference. The poster was titled “Quality of Life Study II, The Journey of CML & Disease Management Through the Eyes of Patients” Authors: Cheryl-Anne Simoneau, BA; Suzan McNamara, PhD; Sandra Shaw, MSc (Bio medical ethics – pending)
The poster was very well received among some of the top CML experts in the world who were there many made the comment that they felt that this survey will be very helpful to them and may help them make some changes in their approach to their CML patients. Importantly it helps them to understand the issues involved in adherence as it relates to Quality of Life.
Background
In2008 The CMl Society of Canada launched it’s first Quality of Life Survey. We had over 275 responses within a very short time frame from CML patients. We presented our findings to an audience of over 900 doctors and other health care teams at a satellite symposium at the American Society of Hematology in San Francisco in 2008.
The CML (Chronic Myelogenous Leukemia) Society of Canada, like many patient advocate groups, acts as the eyes, ears and voice of its community, working to change the treatment paradigm as well as the course of this disease while supporting its constituents. Again, like many patient advocacy groups, The Society becomes aware of issues facing patients that are often not voiced to their medical management team, or, in the course of exigent treatment are not considered serious enough by the team to warrant further exploration. These issues arise not only around financial pressures faced by CML patients but also relate to side effects associated with the drugs taken and the overall impact the disease and its treatment have on the patient and his/her family.
For the Quality of Life II Survey we put the call out to our fellow CML patients to help us develop a new survey based on their responses and inputs from the 2008 survey. We are happy that a core group group of 18 CML patients contacted us and were most enthusiastic to help us develop the questions on the survey. These are the questions they hoped that their health care team would be able to discuss with them.
Are these your questions too?
If you haven’t already taken the survey, please add your experience to this survey by taking the 10 minutes to think about and respond to the questions. We as patients believe that adherence and quality of life go hand in hand. Help make sure your health care team understand the big picture when it comes to Adherence and Quality of Life.
Take the survey by clicking on the link below. Make sure your voice is heard!
I WANT MY HEALTHCARE TEAM TO KNOW THAT QUALITY OF LIFE MATTERS TO ME!
