Q3 Reader Poll Results and New Survey: The Caregiver
Last quarter we asked how often CLL patients and caregivers think about CLL. Here is what we found from the 320 that responded to our one question survey:
83% of us think about CLL daily or several times a week. No-one reported that they never think about it. Later we will publish a more detailed breakdown by subgroups. For now the important finding that more than 4 out of 5 us are often preoccupied with CLL tells us a lot:
- You are not alone if you find yourself ruminating about your B cancerous cells.
- The reality of CLL’s near constant presence in our thoughts needs to be considered in how we diagnose and manage this long term illness.
Thanks so much for helping by completing our surveys. We couldn’t do it without you. This data will help both doctors and fellow patients understand our journey. We hope to publish it soon.
The topic for the 2018 Q4 CLL Society Tribune ASK & Tell Survey is the unmet, and too often unrecognized, needs of caregivers. Both patients and caregivers are invited to address these questions about their personal experience.
Below is a link to the survey. We want both patients and caregivers to please complete this and we will share the results in March, 2019.
We are, after all, all in this together.
EVP and CMO, CLL Society
Originally published in The CLL Tribune Q4 2018.