What is a treatment guideline, and how do I read one?

This is not clinical evidence and not medical advice. It does not replace your care team. Discuss anything here with your clinician before you act on it. Your oncologist says the plan follows the guidelines. Or the word NCCN comes up mid-visit and the conversation moves on before you can ask. NCI's dictionary describes clinical practice guidelines as guidelines developed to help health care professionals and patients make decisions about screening, prevention or treatment of a specific health condition. AHRQ, quoting the Institute of Medicine's 2011 definition, adds that they hold recommendations meant to optimize patient care, informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options. AHRQ's criteria for its former National Guideline Clearinghouse also describe guidelines as addressing specific clinical circumstances. Consider asking your care team how the guideline they mention applies to yours.

Different kinds of organizations write them. The criteria for AHRQ's former National Guideline Clearinghouse (the page is dated October 2018) counted guidelines produced by a medical specialty association, professional society, public or private organization, government agency or health care organization. NCCN is one you may hear named in a visit. It describes itself as a not-for-profit alliance of 34 leading cancer centers. Its guidelines are developed and updated by 64 panels, with over 2,000 clinicians and oncology researchers from those centers. NCCN says each panel includes a patient advocate whenever possible, with a full vote. This page does not rank guidelines or say which one is best. If a guideline comes up, consider asking who wrote it.

Not by NCI's own description. PDQ summaries for health professionals are evidence-based and written and reviewed by subject matter experts. NCI also says they are not clinical practice guidelines or treatment recommendations. The editorial boards review published research and assess how strong the evidence is. NCI says they do not develop guidelines or make treatment recommendations. Most of the summaries also come in a patient-focused format. Consider reading a PDQ page as background on the evidence. Then consider asking your care team how it relates to the plan in front of you.

Yes. NCCN publishes a patient edition. The full NCCN Guidelines contain panel lists, algorithms or flowcharts, discussion text, references and conflict-of-interest disclosures, and NCCN says they are meant to assist physicians, nurses, pharmacists, payers, patients and families. For patients, NCCN offers NCCN Guidelines for Patients. NCCN describes the library as free, in plain language with visuals, charts and definitions, to help people with cancer and caregivers talk with their clinicians about treatment options. It is sorted into treatment by cancer type, detection and risk reduction, supportive care and specific populations. NCCN says the books include lists of questions to ask about cancer care. If I were walking into a visit with one, I would mark the lines I wanted to ask about. Consider bringing the marked-up copy.

NCCN says its recommendations rest on the best evidence available at the time, and that the guidelines are updated continuously as new data appear. All are reviewed at least annually, and interim updates can follow new evidence or new drug approvals. On NCCN's page about the clinician guidelines, versions are numbered. V.1 plus a year marks the annual update. V.2, V.3 and so on mark interim ones. NCCN notes the version year does not always match the calendar year. The patient library looks different. It shows only a year, beside most titles. A few titles show no version at all. If you are reading a patient book, consider writing down that year, and asking whether anything has changed since.

NCCN says its categories reflect two things: the level of clinical evidence and how much of the panel agrees. Category 1 means high-level evidence, at least one randomized phase 3 trial or high-quality meta-analyses, and uniform consensus that the intervention is appropriate, with 85% or more of the panel in support. Category 2A means lower-level evidence with that same uniform consensus. Category 2B means lower-level evidence with consensus of at least 50% but under 85%. Category 3 means major disagreement that the intervention is appropriate. NCCN says most recommendations are 2A, and 2A is the default when no category is given. It also says cancer evidence varies a lot in quality, and some situations have no meaningful clinical data, so care rests on clinical experience alone. These labels describe the evidence and the panel's agreement in general. They don't tell you how a treatment will work for you. If a category comes up, consider asking what it means in your situation.

These are a separate scale from the categories above. NCCN says most guidelines sort systemic therapies by preference. Preferred means interventions based on superior efficacy, safety and evidence and, when appropriate, affordability. Other recommended means interventions that may be somewhat less efficacious, more toxic or based on less mature data, or significantly less affordable for similar outcomes. Useful in certain circumstances means interventions for selected patient populations, defined with the recommendation. The order of alternatives does not indicate preference unless specified. NCCN says it offers a range of options so clinicians can choose what is most appropriate for each patient. Like the categories, these labels describe the panel's view in general, not what will happen for you. If one attaches to your plan, consider asking your team why it fits your case.

NCCN says its recommendations are intended to apply to most patients in a clinical situation. They are not exhaustive, and they do not apply to every patient's situation. Situations expected in fewer than 5% of cases may be left out. NCCN also provides a range of options so clinicians can choose what fits each patient. Evidence Blocks are small score grids NCCN attaches to some therapy recommendations, rating efficacy, safety, quality of evidence, consistency of evidence and affordability on a scale of 1 to 5. NCCN calls them a starting point for shared decision-making. It adds that clinicians and patients must choose the treatment that is most appropriate considering what matters most to the patient. NCCIH, on its page listing guidelines issued by other organizations, says these guidelines are not fixed protocols that must be followed. They are meant for professionals to consider, and they do not substitute for a physician's advice. So the guideline opens the conversation. It does not finish it.

Consider asking three things. Which guideline, and which version, does my plan follow? Is my plan a preferred option or another listed option, and what is different for me? Is anything about my situation outside what the guideline covers? For general visit prep, see our pages Second opinions and appointments (/answers/second-opinions-and-appointments) and Questions to ask your oncologist (/answers/questions-to-ask-your-oncologist). This page is not a clinical review of any guideline, and nothing here says which option is right for you.