Incidence rates of young-onset colorectal cancer (YO-CRC) in otherwise healthy individuals aged younger than 40 have increased 2% per year during the past four decades, and the trend is projected to continue for at least another 10 years. YO-CRC can have a significant psychological impact on adolescents and young adults (AYAs), and the population needs specialized nursing care.

In an article published in the February 2024 issue of the Clinical Journal of Oncology Nursing, ONS member Nina N. Grenon, DNP, AGPCNP-BC, AOCN®described how her institution’s specialized YO-CRC center is delivering customized care to this unique population and called for nurses to increase awareness of YO-CRC as the incidence continues to rise.

The YO-CRC Patient Experience

According to more than 1,000 AYAs responding to the 2020 Never Too Young Survey, an annual international survey conducted by the CRC Alliance, many patients had significant psychological impacts from the young onset of their diagnosis. The CRC Alliance reported that 75% of respondents had concerns about their mental health and 64% said that they needed help for depression. More than 80% of patients experienced more than two symptoms prior to diagnosis, and more than 75% saw multiple providers prior to their diagnosis. Only 31% of respondents received fertility preservation education.

“Almost all respondents (97%) experienced significant fatigue, affecting the ability to make decisions,” Grenon wrote. “In addition, emotional exhaustion affected respondents’ lives at least some of the time, and respondents with YO-CRC also experienced fear of recurrence, anxiety, pain, financial and employment changes, and sexual health and intimacy challenges.”

Customized Care Supports AYAs’ Individual Needs

Grenon’s institution created a YO-CRC center with healthcare staff who:

  • Provide comprehensive, interprofessional care to patients with YO-CRC.
  • Research YO-CRC’s underlying biologic, environmental, and lifestyle factors, and developing new treatment options, including immunotherapy.
  • Increase public awareness about the rising burden of YO-CRC and strategies for prevention, screening, and early detection.

Upon referral to the YO-CRC center, AYA patients undergo a genetic evaluation and tumor sequencing through the Gastrointestinal Treatment Assistance Regarding Genomic Evaluation of Tumors program, Grenon said. A molecular tumor board reviews the results and identifies whether the AYA patient is eligible for a clinical trial.

Prior to starting treatment, AYA patients meet with a nurse navigator who provides treatment and symptom management education, support services, and other resources and referrals. The nurse navigator also looks for any barriers, “such as financial difficulties, work-related issues, limited coping skills, excessive anxiety around the diagnosis, spiritual and existential dilemmas, and any other factors that could potentially impede the patient in accessing treatment,” Grenon said.

Among the YO-CRC center’s other resources are:

  • A dedicated social worker with AYA-specific expertise
  • Support programs and resources for patients and young families
  • Counseling about fertility, sexual health, nutrition, exercise, palliative care, and integrative medicine
  • A monthly newsletter
  • An annual one-day educational conference for patients with YO-CRC and their families

After completing treatment with curative intent, patients transition to the adult survivorship program, Grenon said, but the reality is that many patients with YO-CRC are diagnosed with later-stage disease and have worse prognoses and higher symptom burden. In those instances, patients are referred to palliative care for management of refractory symptoms and help with advance care planning. (See a related ONS Voice article and Oncology Nursing Podcast episode.)

“Specialized care teams can help to address the unique needs of this patient population,” Grenon concluded. “Oncology nurses can be at the forefront of YO-CRC awareness and competency to address the needs of and care for these patients.”

Learn more and read a case study about a patient who received care at the YO-CRC center in the full Clinical Journal of Oncology Nursing article.