NCCN Issues First Guidelines for Patients Devoted to Cancer Caregivers

The National Comprehensive Cancer Network (NCCN), the alliance of 34 leading US cancer centers whose clinical practice guidelines inform what payers cover in health plans,¹ today published its first NCCN Guidelines for Patients dedicated to the people who care for someone with cancer.² The news comes just ahead of November, which is National Family Caregivers Month.

The NCCN Guidelines for Patients: Caregiving for People With Cancer offers plain-language tips in 5 areas: emotional support, finances, household tasks, legal concerns, and medical management, which includes help with decision-making, giving medications, and other nursing duties.² Features called “Caregiver’s Corner” throughout the book highlight self-care, and one chapter is devoted entirely to the caregiver’s own well-being. The document is free at NCCN.org/patients and through the NCCN Patient Guides for Cancer app, through funding from the NCCN Foundation.²

According to the AARP and National Alliance for Caregiving report Caregiving in the US 2025, 63 million Americans—or nearly 1 in 4 adults—provided ongoing care in the past year.³ The new NCCN guide notes that at least 70% of caregivers are also balancing jobs and other responsibilities, and 60% live separately from the person for whom they are providing care.²

Why Caregiving, and Why Now?

Anthea A. Gray, PsyD, a rehabilitation psychologist at The Ohio State University Comprehensive Cancer Center–James Cancer Hospital and Solove Research Institute, participated in the guide’s development. She told The American Journal of Managed Care® (AJMC®) in an interview that changes in who is developing cancer—and the duration of that journey—made this the right moment for caregivers guidelines.

“People are living longer, and so with that—not everybody that lives a long age is going to get cancer, but for those that do, they’re more likely to have medical comorbidities,” Gray said. “Also, there’s a rising number of younger people starting to get cancers that they might not have gotten in the past, and many of these younger people have families, and those caregivers are not only caregivers but maybe parents to young children. Maybe they’re working full time. So, the landscape of caregiving is changing, and the demands that caregivers once had are increasing.”

“We just have to drive and fill up our gas tanks once a week to see that the cost of things are going up,” she continued. “The increased financial strain that puts on caregivers and families certainly doesn’t help the burden that comes along, or can come along, with caregiving.”

With this in mind, NCCN felt the opportunity to offer additional resources to caregivers “was right on time.”

How the Guide Was Built

Gray said the book was written by NCCN’s patient information team, whose members are “trained writers who are very familiar with medical language—health-literate journalists and writers.”

“It’s not based on one existing clinical guideline per se, but uses content from a library of the NCCN Guidelines,” she said, with “medical review from psycho-oncology experts at NCCN member institutions.”

It joins more than 75 NCCN Guidelines for Patients, each updated at least annually.² When she became NCCN’s CEO in 2023, Crystal S. Denlinger, MD, FACP, told AJMC that “guidelines for patients in lay language” are one way NCCN makes its recommendations accessible.⁴

Going Beyond Medical Needs

Gray agreed that the nonmedical side of caregiving can be as overwhelming as the medical side.

“These are the things, as a clinician myself, that often leave people reeling, because they’re not sure where to reach out, they’re not sure who to ask, they’re not sure what sources are reliable, which makes these guidelines for patients particularly valuable,” she said. “Information on the types of cancer maybe would have been readily available in the past, but information like screening, prevention, supportive care—these guidelines have it all packaged in one place, which makes it quite unique.”

Asked what surprises families most, Gray cited costs. “There are so many surprises around every corner, but some of the surprises with the largest exclamation points might be the costs,” she said. “I think one’s assumption for many people would be if you have insurance, your care will be covered in its entirety, or most of it, and for many, that’s not always the case. Many people who have worked most of their lives start dipping into their retirement funds or savings to cover medical care costs. These are people with insurance. That’s, for many people, a big surprise—just the exorbitant costs.”

“Their ability to pull all of the information into one place is incredibly valuable and unique, and the fact that they’re vetted by reliable professional sources is also unique,” Gray said. Caregivers “have the demands of their own lives, their own health issues, managing household, whatever else, as well as being a caregiver. Many don’t have time to conduct extensive research on how to figure out X, Y, and Z problem, and NCCN just really slides right into that opportunity gap.”

Asking More of Caregivers

AJMC has reported that caregivers are being asked to do more as advanced therapies move to outpatient settings; outpatient bispecific antibody dosing leaves patients dependent on a capable caregiver, especially during step-up dosing.⁵ Patients receiving chimeric antigen receptor (CAR) T-cell therapy must have a caregiver available around the clock for at least 4 weeks after infusion.⁶ “It really has become a barrier for a lot of people to getting these novel therapies,” Thomas LeBlanc, MD, MA, of Duke Cancer Institute, told AJMC during this year’s Patient-Centered Oncology Care® (PCOC) meeting.⁷

Gray said those demands were “another driver for creating such a comprehensive resource.”

Not only are caregivers asked to do more, “but they still have to live their own lives. They have to take care of their own health,” she said. “The literature on caregiving suggests that it’s hard. It is hard, and oftentimes caregivers’ health does become affected or put to the back burner. So, NCCN makes it a little easier.”

The NCCN guide covers fatigue, stress, nausea, vomiting, and other issues that arise “when you get home,” Gray said. “I’m sure that if you reached out to your provider or your care team, they would respond. But being able to have these resources accessible on how to deal with these issues once you and your loved one come home is very useful,” she said, calling them “integral parts to cancer care that really help improve treatment outcomes for cancer and just people’s general experiences navigating their care.”

She singled out the app. “What’s most attractive to caregivers, particularly for individuals who are caring for people going through their active cancer treatment, is when they’re on the go,” Gray said. “Sure, they could just Google something, but having an app that’s in plain English, very easy to navigate—you can bring it on the road—makes it even easier and more accessible.”

What’s Next in Caregiving at NCCN

NCCN will continue the conversation on December 3, 2026, with its annual Patient Advocacy Summit, “Advancing Family-Centered Cancer Care in the United States,” at the National Press Club in Washington, DC, with virtual attendance available. Speakers will address caregiver education and training, workplace challenges and family leave, costs of care, and gaps in government support.⁸ Registration is available at NCCN.org/summits.

Over the past year, AJMC and its publication Evidence-Based Oncology™ have examined the needs of caregivers in cancer care, from the growing attention to caregiving in research and legislation⁹ to the September PCOC panel in Nashville, Tennessee, “No Caregiver, No Cure: Supporting Those Who Ensure Cancer Treatments Reach Patients in Need.”⁷ Panelists included LeBlanc as well as a wife who cared for her husband after he received CAR T-cell therapy.

References

1. Joszt L. NCCN concordance doesn’t guarantee cancer drug coverage. AJMC. September 25, 2026. Accessed October 26, 2026. https://www.ajmc.com/view/nccn-concordance-doesn-t-guarantee-cancer-drug-coverage
2. How to care for caregivers? NCCN debuts essential guide for supporting loved ones with cancer. News release. National Comprehensive Cancer Network. October 27, 2026.
3. New report reveals crisis point for America’s 63 million family caregivers. News release. AARP. July 24, 2025. Accessed October 26, 2026. https://www.aarp.org/press/releases/2025-07-24-new-report-reveals-crisis-point-for-americas-63-million-family-caregivers.html
4. Klein HE. As incoming CEO, dr crystal denlinger highlights NCCN Guidelines, challenges, and treatment access. AJMC. August 23, 2023. Accessed October 26, 2026. https://www.ajmc.com/view/as-incoming-ceo-dr-crystal-denlinger-highlights-nccn-guidelines-challenges-and-treatment-access
5. Caffrey M. As cancer caregiving becomes more complex, start-up offers solution to demographic cliff. Am J Manag Care. 2026;32(Spec 2):SP82.
6. Caffrey M. The CAR t caregiver: “never in the limelight,” but critical to access. Am J Manag Care. 2026;32(Spec 5):SP180-SP182.
7. Grossi G. Caregiver gaps limit access to new therapies: Thomas LeBlanc, MD, MA. AJMC. September 29, 2026. Accessed October 26, 2026. https://www.ajmc.com/view/caregiver-gaps-limit-access-to-new-therapies-thomas-leblanc-md-ma
8. NCCN annual patient advocacy summit to address family-centered cancer care. Media advisory. National Comprehensive Cancer Network. 2026. Accessed October 26, 2026. https://www.nccn.org/summits
9. Caffrey M. Caregiving catches fire: how a critical need is showing up in research, legislation, and the national conversation. Am J Manag Care. 2026;32(Spec 9).