How Good is the Level of Scientific Evidence Underlying the National Comprehensive Cancer Network Clinical Practice (NCCN) CLL Guidelines?

[AussieNeil]

Our community support team take pride in maintaining reliable content in this community. When your life depends on it, you need confidence that what you are reading will give you the information you need. That way you can intelligently question your medical support team for reassurance that they are providing you with the best CLL management options for you. Better yet, you can feel confident enough to ask for changes in your proposed treatment, dosing, prophylactic coverage etc.

Through the involvement of many of us in clinical trials, we are generally aware of the importance of comparative trials to determine if newer drugs or drug combinations provide improved remission times, with hopefully less side effects. The trial reports also identify who is likely to benefit most from the different treatment options now available. The regular posts reporting trial results also help.

The USA is indisputably the preeminent country when it comes to testing new drugs and drug combinations. The USA's National Comprehensive Care Network (NCCN) publishes a number of guidelines - the distilled knowledge of specialists, on how to manage and treat a number of diseases, including CLL. Per nccn.org , "The National Comprehensive Cancer Network® (NCCN®), a not-for-profit alliance of 31 leading cancer centers devoted to patient care, research, and education, is dedicated to improving and facilitating quality, effective, efficient, and accessible cancer care so that patients can live better lives." NCCN maintain patient and clinician guides for CLL.

The document National Comprehensive Cancer Network Guidelines: Who Makes Them? What Are They? Why Are They Important? provides further background on the NCCN guidelines: pubmed.ncbi.nlm.nih.gov/322...

Our pinned post, maintained by lankisterguy healthunlocked.com/cllsuppo... references the NCCN and other international guidelines. Due to the preeminent position of the USA with regard to treatment options, the CLL NCCN guidelines include a pretty exhaustive list of recommended CLL treatment protocols, along with guidelines on their applicability. The leading position of the USA means that the NCCN guidelines for CLL are the go to (or should be) for US based oncologists and haematologists with CLL patients under their care. These NCCN guidelines also greatly influence updates on treatment protocols in other CLL guideline documents, as treatments approved by the FDA are gradually adopted in other countries.

So how well does the content of the NCCN reflect the best scientific evidence for managing CLL? Recently the CancerNetwork® editors reviewed a manuscript published in the July issue of the journal ONCOLOGY® titled,“Level of Scientific Evidence Underlying the National Comprehensive Cancer Network Clinical Practice Guidelines for Hematologic Malignancies.” Corresponding author Thejaswi K. Poonacha, MD, MBA, a staff physician and hospitalist in the Department of Internal Medicine at the University of Minnesota Medical Center, joined the show to discuss the conclusions of his colleagues.

The conversation focused on the scientific evidence behind the National Comprehensive Cancer Network guidelines for hematologic malignancies, the different levels of evidence supporting the recommendations, and the main conclusions of the research. Poonacha also shared why he thinks this research is significant for the authors as well as physicians treating patients with hematologic malignancies nationwide.

cancernetwork.com/view/onco...

I hope that the above is reassuring in showing how the NCCN guidelines are updated and reviewed regularly to ensure our optimal survival. Have a look through just this one guideline, for just one of around 200 leukaemias and lymphomas (CLL is kind of both). Now appreciate that a general oncologist needs to keep across updates in many different blood cancer guidelines, along with similar guidelines for solid cancers. Now perhaps you can better appreciate that seeing a haematologist or oncologist that primarily sees CLL patients, or has enough CLL patients to make it worth their time to keep up with updates, makes so much sense.

This is an unlocked post, so newly diagnosed folk can find us.

Neil

[SlowCLL]

Thanks!

[Kwenda]

Perhaps Neil the MOST IMPORTANT two sentences you wrote are these:-

Now appreciate that a general oncologist needs to keep across updates in many different blood cancer guidelines, along with similar guidelines for solid cancers. Now perhaps you can better appreciate that seeing a haematologist or oncologist that primarily sees CLL patients, or has enough CLL patients to make it worth their time to keep up with updates, makes so much sense...

During the last 16 years I have seen how hospitals have accepted this wisdom, and made changes.

When first diagnosed I was seen by a 'general oncologist'.

Now my local hospital has SIX haematologists / oncologists, each of whom ONLY deals in a single type of blood disease.

Dick

[AussieNeil Administrator in reply to Kwenda]

Exactly Dick,

It's encouraging to read that you've observed improvements.

I just PEEKed at the Australian survey of CLL patients cc-dr.org/2020aucll/ and 96% of the survey participants had a haematologist as their main provider of care for their CLL. In the US, it seems that oncologists are the main providers of care and I wonder how well they keep up to date with the fast changing treatment landscape. If they only have a few CLL patients, how do they manage when unusual side effects occur?

Neil