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ESH AL 2018 | The need for prompt patient referral and clear informed consent

Here, Oliver Ottmann, MD, FRCPath, of Cardiff University, Cardiff, UK, describes the importance of referring both young and elderly patients with acute lymphoblastic leukemia (ALL) speedily. From the 2018 European School of Hematology (ESH) Clinical Updates on Acute Leukemias, held in Budapest, Hungary, Prof. Ottmann also stresses that the procedure of informed consent for patients partaking in clinical trials needs to be improved.

Transcript (edited for clarity)

The first is the referral and the speedy referral, which I think for the most part works relatively well in younger patients, but I am somewhat concerned, and this is not unique to the UK that elderly and older patients are not necessarily referred with the same frequency as the younger ones, because it is deemed to be futile and the treating physician might say, ‘well, palliative care is fine’, not recognizing that actually, we have improved options...

The first is the referral and the speedy referral, which I think for the most part works relatively well in younger patients, but I am somewhat concerned, and this is not unique to the UK that elderly and older patients are not necessarily referred with the same frequency as the younger ones, because it is deemed to be futile and the treating physician might say, ‘well, palliative care is fine’, not recognizing that actually, we have improved options.
Once the patient is at a center that offers trials, I think the UK has been exemplary, as many European countries, in providing one protocol as the national protocol for uniform treatment of patients, and I think the discipline of all the participating centers has been excellent and has generated a huge amount of data, so those procedures are pretty standard.
The informed consent is also routine, that is no longer a question that the patients are informed well together with their family or their GP or whoever they want to consult. They do not have very much time necessarily, because of the clinical presentation, and I do have to probably criticize a little bit of the development from the regulatory side of things, where nowadays patients are expected to read informed consent of 20, 30+ pages in a situation where they are obviously highly threatened, which is outside of their expertise, and where I believe that just more paper and more pages does not make for better information.
I think that is the challenge for a physician to really focus and direct the patient towards the information that is relevant clinically, biologically, for the life, and is not just an issue of legal safety measures.

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