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Bridging the Care Gap Between Pediatric and Young Adult Cancer

Laurel Barosh, MPH; Terry Church, MA, MS; Deborah Morgan, MSN, RN, OCN; Megan Bianchetti, MSW; James Hu, MD, FACP; Debu Tripathy, MD; Stuart E. Siegel, MD
Through a multi-site, multidisciplinary approach, AYA@USC addresses the unique needs of young adult cancer patients, improving outcomes and bridging the care gap in this population.

About 70,000 adolescent and young adult (AYA) cancer patients, aged 15 to 39 years, are newly diagnosed annually in the United States; this includes an estimated 4000 or more in the Los Angeles Basin alone. Despite tremendous advancements achieved in pediatric and older adult cancers, the relative improvement in the survival rates and outcomes for AYA patients has not kept pace. For instance, from 1975 to 1997, the average annual improvement in 5-year survival rates for invasive cancers was 1.5% for all ages; however, improvement averaged only 0.5% for cancers in the entire AYA population, and survival actually decreased by -0.18% for individuals aged 30 to 34 years.1
During the past 10 years, the so-called “AYA gap” has become the subject of national focus and attention. It has been well documented that AYA patients with cancer often fall through gaps in their clinical and supportive care.2-5 An understanding of the unique characteristics and outcomes of this group is a continued need. The shared norms, attitudes, and beliefs that determine their behavior as well as the stressors encountered on a daily basis (such as identity formation, body image concerns, sexual relationships, independence from parents, autonomous decision making, as well as educational, career, and personal growth goals) impact the ability of an AYA to cope with cancer.3
Problems that care providers face, including a lack of multidisciplinary teams, limited availability of therapeutic clinical trials focused on the AYA population, and even a lower rate of drug and device approvals for the less common cancer types seen in AYA patients can all lead to more suboptimal treatment planning. Consequently, AYA patients have been treated based on guidelines and recommendations developed exclusively for pediatric or adult oncology patients with cancer, without any regard for differences in host tolerance to treatments, tumor biology, and psychosocial developmental stage.6-9 The unaddressed needs of this population can result in increased likelihood of misdiagnosis, late stage diagnosis, and reduced adherence to treatment and follow-up.4,6,10
In an effort to mitigate these gaps in care and to develop a national agenda for AYA oncology, the National Cancer Institute, in collaboration with the LIVESTRONG Young Adult Alliance, established the Adolescent and Young Adult Oncology Progress Review Group (PRG). The PRG outlined 5 imperatives for improving the outcomes of AYA patients with cancer, one of which includes a recommendation to ensure excellence in service delivery across the cancer control continuum.11 Further, the National Comprehensive Cancer Network (NCCN) AYA Guidelines Panel strongly advises that AYA patients be referred to cancer centers with expertise and experience in treating patients in this age group and the cancers that affect them. There is a definite need for comprehensive models of cancer care that have this population’s diverse needs in mind.1,11-16
Through the systematic and proactive provision of age-appropriate support services and a multidisciplinary approach to clinical care, the Adolescent and Young Adult Cancer Program at the University of Southern California (AYA@USC) has developed a care model to bridge the gaps experienced by this population.
Model and Intervention

From its inception, the care model has been sponsored by the USC Norris Comprehensive Cancer Center and structured with joint pediatric and medical oncology leadership spanning 2 major USC-affiliated academic medical centers: the Norris Cancer Hospital at the Keck Medical Center (USC) and Children’s Hospital Los Angeles (CHLA). Both are private nonprofit medical institutions.
The AYA@USC clinical team works collaboratively with existing disease-specific oncology teams to bring the AYA perspective to patient care, focusing on the unique needs of this population such as fertility and psychosocial concerns. The team, comprised of 2 medical directors (pediatric oncologist and adult oncologist), a program manager, 3 part-time nurse navigators (NNs), and a social worker (SW), have streamlined resource utilization through the development of efficient algorithms within the USC and CHLA community networks. This algorithmic model of care ensures that protocol-defined patients are appropriately assessed by both nursing and social work disciplines as they assist patients with gaining access to needed services, referrals, follow-up care, and provide education uniquely tailored to AYAs. Each disease-specific oncology team identifies an AYA “champion” and provides feedback to AYA@USC.
During the nascent stages of program development, stakeholders across the healthcare spectrum were engaged in a collaborative forum in which principles were developed to ensure the successful implementation of the program. These principles include:
1.                  A resource or space-efficient decentralized care model in which disease-based treating oncologists continue to manage patient care.
2.                  AYA clinical team provides supportive care planning and recommendations.
3.                  AYA physician champions serve in each specialty area to align their group’s AYA practice and processes.
4.                  Fluid and collaborative communication between the AYA clinical team and treating oncology teams.
5.                  Multidisciplinary and collaborative approach to program development with input from all partnering stakeholders (Figure 1).

Based on these guiding principles, program enrollment began in November 2013 and several hundred AYA patients have since been referred to the program. An overview of the clinical care and services provided to patients can be found below and in Figure 2.

1.                  Oncology patients (15 to 39 years old) are either referred by healthcare professionals or identified from an electronic medical record. The NN and/or SW seek permission from the treating oncology team prior to providing AYA services.
2.                  The NN aims to contact the patient within 1 to 2 working days to provide fertility preservation education consistent with guidelines by the American Society of Clinical Oncology and acts as a conduit to perform a preliminary evaluation with referrals.17 See Figure 3 for the fertility education algorithm.
3.                  The SW conducts an in-depth psychosocial assessment within 10 days, including the Distress Screening Tool and Thermometer (DT), adjusted for the AYA population. If a patient scores >7 on DT, immediate SW intervention occurs.18,19
4.                  Information gathered from the initial NN and SW assessments are presented at a bimonthly AYA team case conference; identified needs are addressed, and resources and referrals are made. Recommendations are communicated to the treating oncology team and the patient.
5.                  Referral to AYA@USC or regional support group is made if appropriate.
6.                  About 8 to 12 weeks later, an additional assessment is conducted to follow up on previously identified concerns and assessments for new issues. The DT is administered again and addressed accordingly.
7.                  The NN and SW contact the patient once active treatment has been completed to provide resources, education, and support while transitioning into survivorship. The DT is administered and addressed for the third time.
8.                  Biweekly AYA team meetings are held to discuss key findings of referred patients, challenging cases, controversies, and new evidence-based literature and developments.

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