Ask & Tell Q3 2019 Survey: Before End of Life and Palliative Care
March-April 2016
During March-April 2016, the CLL Society conducted a poll among readers of the Q1 2016 issue of The CLL Tribune. The survey included questions on treatment status, how decisions are made about treatment and who influences those decisions, what factors about various treatment options are important to patients and what sources CLL patients go to for information, as well as demographic information. 350 complete responses were received:
- Average age – 64 (range 38-84)
- 44% Male, 56% Female
- 80% of respondents resided in the United States
- Of the 20% outside the US, respondents originated from United Kingdom (9%), Canada (4%), Europe (3%), Australia (1%), New Zealand (1%) and South America (1%)
- Diagnosed between 1989 – 2016
Respondents were almost evenly divided between being untreated (33%), having received 1 treatment (35%) or having received 2 or more treatments (32%) [Figure 1]
Overall, 82% of respondents had knowledge of their CLL Risk Level. Among the US-based respondents and respondents outside the US, those who were not aware of their risk level varied significantly, 13% versus 38%, but this data is not generalizable as the wide range of countries among respondents outside the US, small sample size and variation in protocols outside the US makes this merely an observation. [Figure 2]
The CLL Society has plans to submit an abstract to the American Society of Hematology that includes a more complete picture of the data and will also be sharing more data in future issues of The CLL Tribune.
Originally published in The CLL Tribune Q2 2016.
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