Information and Integration Can Take Oncology Patients From Surviving to Thriving

Innovations in oncology therapy—often the groundbreaking clinical trial results presented at international conferences or published in prestigious medical journals—are loud, but sometimes the patient voice can be muffled. A panel discussion at the Patient-Centered Oncology Care® 2025 meeting brought together patient and clinician perspectives to explore how to amplify that voice and support patients as they move through cancer diagnosis, treatment, and survivorship.

As introduced by panel moderator Karen Winkfield, MD, PhD, executive director of Meharry-Vanderbilt Alliance, the topic of survivorship is especially relevant, as with “these amazing treatments, patients are living longer, and even for patients who may still have active cancer, cancer is now becoming more of a chronic illness vs this death sentence, and for many patients, we are curing their cancer.” But beyond treatment, patients have complex needs encompassing every facet of their lives that require multidisciplinary support, and the panel brought together experts who understand those needs and are working to pioneer solutions.

Susan Sabo-Wagner, MSN, RN, OCN, NEA-BC, vice president of clinical innovation at the American Oncology Network, discussed her experience receiving a diagnosis of acute myeloid leukemia in 1993, when, she said, “I pretty much had to navigate my own way into the future. We really didn’t talk about mental health [and] really did not talk about what I would need to share with gynecologists, obstetricians, fertility specialists, cardiac specialists, [or anyone]. It was a different time.” Out of this experience came her passion for making sure patients understand their diagnosis and treatment enough to advocate for their health in care settings thereafter.

Similarly, panelist Brian Koffman, MDCM, DCFP, FCFP, DABFP, MSEd, a retired primary care physician and now the executive vice president and chief medical officer of the CLL Society, detailed how his diagnosis with chronic lymphocytic leukemia (CLL) in 2005 inspired him to launch the CLL Society, because “you shouldn’t have to be a physician with a Rolodex of all the experts around to get quality care.”

What Are the Current Gaps and Needs in Cancer Survivorship?

From their personal and professional experience, Sabo-Wagner and Koffman described some of the little-recognized pitfalls of survivorship. These can be physical, like the cardiac toxicity from anthracyclines¹ and the need for earlier screenings for secondary malignancies, or emotional, like “scanxiety” around upcoming appointments. Koffman mentioned that meeting other patients living healthily after a CLL diagnosis is the best reassurance, even beyond what an oncologist can provide.

But oncology care providers still have an important role to play, and efforts are underway to refine their processes to “work with patients from day 1 to help them thrive,” said panelist Zahra Mahmoudjafari, PharmD, MBA, BCOP, FHOPA, clinical pharmacy manager, Division of Hematologic Malignancies and Cellular Therapeutics, University of Kansas Cancer Center. A multidisciplinary strategy, like the Clinical Pre-, Peri-, and Post-Treatment Care program in her division, can bring together the pharmacist perspective to manage adverse events, social workers to address financial toxicity or travel barriers, and dietitians to optimize lifestyle choices. Pharmacists and nurses, she emphasized, are equipped to have these conversations because they are well versed in providing education, especially on aspects like the importance of adherence to oral chemotherapy regimens.

Cancer Support Systems Within and Beyond the Clinic

While the experts in the clinic can help guide the patient’s treatment choices, it’s essential for patients to have support for the other moments on their oncology journey. Sabo-Wagner said that discussions of mental health have become less taboo in recent years, but the depth of the loneliness crisis in the US and the access challenges to mental health care mean that “having a solid support system is critical from day 1.” Koffman agreed that peer-to-peer support groups are essential for mental wellness, but it’s important to ensure they rely on credible data instead of promoting unproven supplements as cures.

Mahmoudjafari added that her institution’s program has formalized a long checklist of questions to ask patients at follow-up visits to identify their challenges and connect them with resources. “Every patient is unique, and their challenges therefore are unique, and so having these sustained touchpoints to develop that trust is absolutely imperative.”

How to Empower Patients With Knowledge

Advocacy groups like the CLL Society have pioneered tools that empower patients to take an active role in their treatment and survivorship, Koffman said, like spreadsheet templates to keep track of their lab results, connections to free second opinions,² or informational pamphlets targeted to their situation. Sabo-Wagner agreed on the need for educational resources to be disease- and regimen-specific, and suggested arming patients with detailed records of their treatment history and medical needs going forward. Some patients may want this on paper while others prefer it to be digital, but it needs to be in place because they will need to share it with the many clinicians who may treat them down the road. Mahmoudjafari agreed that this survivorship packet would be helpful to the provider as well, especially if it is integrated into the electronic health record and updated as a living document. This role can also be filled by navigator staff who serve as a conduit between clinical oncology and primary care, Winkfield added.

In the background of these process innovations is the evolving definition of survivorship, which can look different for each patient. “The broader the definition and the earlier the definition of survivorship, the better,” Koffman said.

References

1. Camilli M, Cipolla CM, Dent S, Minotti G, Cardinale DM. Anthracycline cardiotoxicity in adult cancer patients: JACC: CardioOncology state-of-the-art review. JACC CardioOncol. 2024;6(5):655-677. doi:10.1016/j.jaccao.2024.07.016

2. Koffman B, Pagel JM, Kaempf A, et al. An innovative telemedicine platform to provide expert access to patients with chronic lymphocytic leukemia (CLL). Blood. 2019;134(suppl 1):4716. doi:10.1182/blood-2019-123579