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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
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Coordinated, Personalized Care to Improve AYA Outcomes
Joseph Alvarnas, MD

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.
Case Example 1

Patient is a 32-year-old female, diagnosed with a gastrointestinal stromal tumor; status is post complete resection. Patient rated her initial distress at 8 on a scale of 1 through 10, and her top concerns were fertility, living arrangements, finances, family dynamics, relationship status, isolation, anxiety, insomnia, and diarrhea. At initial encounter, the treatment plan was still being formulated, and it was unknown if fertility-harming therapy would be prescribed. NN provided fertility preservation education and addressed her fertility concerns. Because the patient strongly desired future biological children, she came to the decision to pursue fertility preservation prior to the start of additional therapy in order to safeguard the possibility of having a biological offspring. Referral to a reproductive endocrinologist was arranged, and the patient successfully cryopreserved oocytes prior to the start of adjuvant therapy with imatinib (Gleevec). SW addressed the practical, familial, and emotional concerns by connecting the patient with AYA resources and providing 8 individualized, brief therapy sessions to address relationship stressors. NN addressed the insomnia and diarrhea concerns by suggesting a variety of nursing interventions.
 
At the 8-week follow-up, the patient’s distress fell to a 3 with self-reported decreased anxiety and increased family engagement. Patient utilized various resources in the community including meditation or yoga and connected with another survivor through Imerman Angels, a national nonprofit that provides peer support to cancer patients. The patient is still in active treatment, and AYA@USC will help bridge the transition into survivorship when treatment is completed.
 
Case Example 2

Patient is a 31-year-old male, diagnosed with sarcoma that presented with a 2-month history of increasing abdominal girth, pelvic pain, and malaise. CT scan revealed a retroperitoneal mass with metastasis to lymph nodes and lungs. Patient received 6 cycles of standard of care chemotherapy followed by surgical resection.
 
Patient expressed interest in having future biological children and was counseled on fertility preservation by the NN who then made arrangements for sperm banking while the patient was hospitalized. However, the patient was unsuccessful at obtaining a sperm sample due to the impact of disease on ejaculatory function.
 
The patient rated his initial distress at 8, citing career, finances, emotional distress, exercise ability, sexual concerns, and nutrition as top issues. He was provided with financial assistance applications, career resources, AYA-specific support resources, and individualized social work support. Through education and provision of resources, the NN addressed concerns with erectile dysfunction and decreased libido; the patient declined urological consult. AYA@USC was able to assist with referrals to occupational and physical therapies to address his exercise concerns. Referral to a nutritionist was completed.
 
Eight weeks later, the patient rated his distress at 5. While the patient’s financial concerns remained, he had not pursued any of the financial resources previously provided. Patient verbalized new concerns surrounding his social life and, per AYA recommendation, began participating in the AYA@USC patient support group. Emotional concerns persisted and individualized social work support was utilized again. Occupational and physical therapy were continued to address the patient’s persistent concern with his ability to exercise.
 
The patient is currently pursuing surgical intervention for additional treatment. AYA@USC will continue to follow him and eventually will bridge the transition into survivorship.
 
Discussion

AYAs with cancer have not benefited comparably from the increased survival and reduced mortality experienced by both older and younger cancer patients.1 Tremendous gaps concerning how best to treat AYA patients with cancer exist while supportive care services, when available, can often be fractured and uncoordinated. In general, without a coordinated AYA program, patients who already experience lower levels of insurance coverage and health care access further experience referral issues, problems with copay and negotiation of covered services, and lack of specialized services such as fertility preservation.20-23 Additionally, in the academic medical system setting, available clinical trials are typically targeted to either the pediatric or adult end of the age spectrum—AYA@USC was conceived in response to these gaps.
 
Downstream benefits of the AYA program include the impact on health limitations experienced by survivors. Kirchhoff et al highlight how AYA survivors are not receiving primary medical care services and report cost barriers to care at levels beyond these general age differences. Hidden costs related to prolonged economic loss of productivity, transportation issues for patients getting to treatment and follow-up appointments, and fluctuations in caregiver or childcare services can compound and present barriers associated with healthcare for AYAs.20,22,24,25 The AYA@USC clinical team serves as a bridge to AYA survivorship services when treatment is completed. In the LIFE Cancer Survivorship & Transition Program at USC, detection and management of late effects, assessment of psychosocial functioning, health-related education, and financial and employment challenges are all addressed to improve outcomes for AYA survivors.26
 
Conclusion

The AYA@USC program was developed to ensure excellence in care across the cancer control continuum for AYAs. Programmatic development was guided by recommendations outlined in the PRG report to adopt AYA patient-centered approaches to care, in collaboration with the NCCN clinical practice guidelines in AYA oncology.11,16 Sustaining these standards of cancer care for AYAs has required the ongoing communication and commitment of a diverse array of stakeholders.
 
Future plans for the program include the analysis of clinical data (distress levels, fertility consults, and pain scores), financial data (length of stay, inpatient readmission rates, and health-related quality of life), and patient and staff satisfaction surveys to inform future interventions and best practices. The AYA@USC model was designed to be exportable to other facilities including Los Angeles County Hospital+USC—the largest single provider of healthcare in the county—to build a regional network for AYA patient care. The hope is models such as these will contribute to the impending national standard of care for AYAs with cancer. EBO


Laurel Barosh, MPH, is founding program manager, Adolescent and Young Adult Oncology Program, USC Norris Comprehensive Cancer Center
 
Terry Church, MA, MS, is interim program manager, Adolescent and Young Adult Oncology Program, USC Norris Comprehensive Cancer Center
 
Deborah Morgan, MSN, RN, OCN, is lead nurse navigator, Adolescent and Young Adult Oncology Program, USC Norris Comprehensive Cancer Center
 
Megan Bianchetti, MSW, is lead social worker, Adolescent and Young Adult Oncology Program, USC Norris Comprehensive Cancer Center
 
James Hu, MD, FACP, is co-medical director, Adolescent and Young Adult Oncology Program, USC Norris Comprehensive Cancer Center
 
Debu Tripathy, MD, is founding co-medical director, Adolescent and Young Adult Oncology Program, USC Norris Comprehensive Cancer Center; chair, Breast Medical Oncology, University of Texas MD Anderson Cancer Center
 
Stuart E. Siegel, MD, is co-medical director, Adolescent and Young Adult Oncology Program, USC Norris Comprehensive Cancer Center; founding director, Children's Center for Cancer and Blood Diseases and the Center for International Health at Children’s Hospital Los Angeles.
 
Acknowledgments
The authors would like to thank Stephanie Morley for her diligent work as program assistant and database manager, as well as Julia Sturgeon and Sharon Jiang for their assistance in data analysis.
 
Corresponding Author
Stuart E. Siegel, MD
USC Norris Comprehensive Cancer Center
1441 Eastlake Ave, Los Angeles, CA
E-mail: ssiegel@chla.usc.edu
 
Funding Sources 
UniHealth Foundation, Concern Foundation, and USC Norris Auxiliary Board.
References
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