CLL Society 2020 Patient Survey
June-July 2016
During June-July 2016, the CLL Society conducted a poll among readers of the Q2 2016 issue of The CLL Tribune. The survey included questions on the types of physicians treating respondents (community versus academic or both), whether they had stayed with the same physician who made the diagnosis and the reasons why they changed, as well as the most important attributes they look for when choosing a physician to treat/monitor their CLL. We also asked respondents whether they would recommend their CLL doctor and created a list that is posted in the Tool Box on the Home Page of our website.
- Of the 261 complete responses received:
- Average age – 64 (range 35-90)
- 43% Male; 57% Female
- 84% of respondents reside in the United States
Forty-four percent of respondents report that their CLL is managed by a hematologist/oncologist (H/O) at an academic center. One-third are managed by both a community and an academic hem/onc. [Figure 1]
Over half of respondents have changed to a different physician to manage their CLL since the time of their diagnosis. [Figure 2]The most common reason was that they requested a second opinion from a CLL expert who is now part of their CLL Team (47%), followed by a lack of confidence in the expertise of the community hem/onc to manage their CLL (33%). [Table 1]
| Reasons | |
| I requested a second opinion from a CLL expert who is now part of my CLL Team |
47% |
| I was not confident in the expertise of my community physician to manage my CLL |
35% |
| My CLL was diagnosed by my primary care physician, so I switched to a hematologist/oncologist |
18% |
| My physician relocated to another geographic area (or retired) |
18% |
| I relocated to another geographic area |
13% |
| I am participating or have participated in a clinical trial so I am receiving treatment at another site, but see my local hematologist/oncologist in between trial visits |
12% |
| I had a bone marrow transplant and am being followed by a transplant physician |
0% |
Using a scale where 1=not important and 5=most important, respondents rated the attributes that were important to them when selecting the physician that manages their CLL. The top 4 attributes were: Physician makes me feel comfortable discussing my CLL (95%), physician treats many patients with CLL (93%), physician encourages me to participate in the medication decision making for my CLL (90%), and physician is responsive to my emails and/or phone calls (83%). (% reflect combined ratings of 4 & 5) [Figure 3]
Thank you to all who participated in the Reader Poll! Your feedback is very important to us and we appreciate the time you spend participating.
Let us know what topics you’d like us to cover in 2017, what we’re doing well and what we could do better. Click Here to Access the Q3 2016 Reader Poll
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