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Tackling Cancer Survivors’ Complex Care Needs

Woman with headscarf hugging her young daughter
Article Summary
  • Sylvester Comprehensive Cancer Center’s survivorship care model encompasses the entire cancer patient experience.
  • Sylvester leadership contributed to the National Cancer Institute’s standards for survivorship care.
  • Sylvester’s Dr. Frank Penedo says optimal survivorship care must include screening for recurrence or secondary cancers, psychosocial services, lifestyle medicine (including nutrition and exercise) and rehabilitation.

The number of cancer survivors in the U.S. is projected to grow by 24%, to nearly 23 million, by 2032.

Most survivors need complex care to adjust to treatment, prevent future cancers and address physical and psychosocial symptoms that can linger years—even decades—after diagnosis.

According to the National Cancer Institute (NCI), survivorship care in the U.S. is often suboptimal. Delivery varies based on care setting, geographical area and personal resources. Many survivors are left with persistent symptoms, unmet needs and lack of access to comprehensive survivorship care.

Sylvester Prioritizes Cancer Survivorship Care

Sylvester Comprehensive Cancer Center, part of UHealth – University of Miami Health System, has long prioritized survivorship care. Sylvester’s leadership, in fact, was among a select few to contribute to the new NCI standards for survivorship care.

Woman with headscarf hugging her young daughter
Dr. Frank Penedo says Sylvester’s survivorship care is the only one of its kind in Florida.

Jessica MacIntyre, D.N.P., M.B.A., APRN, NP-C, AOCNP, executive director of Sylvester’s clinical operations, and Frank Penedo, Ph.D., associate director of population sciences and director of Cancer Survivorship and Supportive Care at Sylvester, were among 33 subject matter experts from top academic centers invited by the Department of Veterans Affairs and the NCI to develop the U.S. standards.

“We have a robust survivorship and supportive care program that integrates the delivery of evidence-based care ranging from psychosocial services to lifestyle medicine,” Dr. Penedo said. “It is unique among cancer centers and the only one of its kind in South Florida.”

Survivorship Care Pillars

According to Dr. Penedo, survivorship care must include, but is not limited to, screening for recurrence or secondary cancers, psychosocial services, lifestyle medicine (including nutrition and exercise) and rehabilitation.

Sylvester offers a long list of cancer support services. Most are complimentary for survivors. The cancer center has established survivorship wellness clinics focused on precision care coordinated with specialized oncology providers on the survivors’ treatment team.

“We established cancer-specific survivorship clinics in response to feedback from our patients and providers,” MacIntyre said. “Drawing upon their insights, we further refined our approach and have implemented or are in the process of developing survivorship wellness clinics for a range of cancer types.”

That range includes lymphoma, head and neck, breast, genitourinary (prostate, bladder and testicular), thoracic (lung), gynecologic (endometrial and ovarian) and gastrointestinal cancers.

University of Miami Miller School of Medicine nurse Jessica MacIntyre, posing in her clinic white coat.
Jessica Macintyre says Sylvester used patient feedback to guide the creation of its survivorship wellness clinics.

From the day of diagnosis, these clinics develop personalized survivorship care plans, help coordinate care, including guidance on vaccines and screenings, support emotional well-being and lifestyle and connect patients with support services.

“Sylvester has programs in place to address survivors’ needs and symptom burden, which typically include fatigue, limited physical functioning, anxiety and depression,” Dr. Penedo said. “And a specialized lifestyle medicine component helps survivors optimize nutrition, exercise and other health behaviors so they are more likely to benefit from treatment, experience less symptom burden and lead healthier lives.”

Research in Cancer Survivorship

As an NCI-designated cancer center, Sylvester scientists conduct studies to monitor patient outcomes and identify optimal survivorship care processes. Researchers are also examining how individual therapies, like music therapy, impact cancer survivors and how the survivorship experience varies among people of different ethnic and racial backgrounds, including Hispanics.

“It’s very exciting to see our work expand into the community, which is part of our mission as an NCI-designated cancer center,” MacIntyre said.

Much of Sylvester’s survivorship care uses digital technologies, telemedicine and other remote options that help people access care without leaving home.

“It’s important that patients understand what’s available to them and who can they reach out to if they do want to talk to somebody about their cancer, symptoms, future risk and simply feeling better,” MacIntyre said.

Survivorship Symposium

To help inform physicians, caregivers and survivors, Sylvester will host the 2024 Sylvester Cancer Survivorship Symposium in October. Providers and researchers will learn from experts about sex and survivorship, integrative medicine, caregivers in survivorship research and more relevant topics.

“Moving forward, it’s important that oncologists and primary care doctors in the community understand how they can integrate these services,” MacIntyre said, “so they feel like they’re providing these patients everything they need without the time constraints.”

Tags: cancer survivorship, Cancer Survivorship Program, Cancer Survivorship Symposium, Dr. Frank Penedo, Jessica MacIntyre, Sylvester Comprehensive Cancer Center