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At the 1st International Meeting of ERIC 2018, I interviewed Dr. Aliki Xochelli, a chronic lymphocytic leukemia hematologist and researcher, from Thessalonki, Greece.
This pilot study used semi-structured interviews with 30 Greek hematologists and 30 Greek CLL patients to learn about communication and the doctor/patient relationship.
- The Needs of the Doctors:
- Were generally not taught how to talk with patients.
- Were stressed about how to give bad news.
- Tended to mimic the style of more senior physicians.
- Used a balance of realism and hope such as you have leukemia but it’s a “good cancer”.
- Our study published at EHA and ASH in 2018 showed that 72% of patients reported being offered language similar to “CLL is the good cancer” at the time of diagnosis. See: https://cllsociety.org/wp-content/uploads/2018/09/EHA-2018-Poster-PS1107-CLL-Society_FINAL.pdf and https://cllsociety.org/2018/09/a-us-based-survey-the-experiences-of-1147-cll-patients/
- The physicians need emotional support and education to feel better and do better.
- The Needs of the Patients:
- The CLL diagnosis was often a shock and unexpected due to lack of symptoms from their CLL, followed by negative feelings about having leukemia.
- Their families helped many to return to feeling well, and even not think about CLL on a daily basis, but some still continued to do random checks for nodes (I do every time I take a shower).
- Worries were about drug availability and what were the options if the treatment fails.
- Most were hopeful and happy with their doctors.
- Patients relied on their doctors for emotional support as well as information.
The plan is to roll out the study in other countries.
This is important research and when the results are back from other countries, I suspect that while some universal themes will emerge, the details may vary dramatically from country to country.
The primacy of the doctor/patient relationship is clear and is most often satisfying for all involved, but it can be awkward on both sides as both sides struggle with communication, both in term of what’s said and what’s heard.
Here is my interview with Dr. Aliki Xochelli:
Brian Koffman MDCM (retired)