Trials and Tribulations for Adolescents and Young Adults with Cancer: Measuring the Impact of a Community-Based Program

Authors: Howland E. Crosswell MD, Kaitlin N. Bomar RN, BS, Nicole Vickery RN, BSN, OCN, Kristina Stoeppler-Biege MS, RN, OCN, Terra D. Spann BSN, OCN, and Robert D. Siegel MD
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Adolescent and young adult (AYA) oncology patients are increasingly recognized in the United States as a vulnerable population, and new models of care delivery have been proposed to improve outcomes and quality of life.1,2 Because approximately 80% of the nearly 70,000 AYA patients diagnosed annually in the United States are seen and/or cared for in the community, understanding and implementing AYA care delivery in nonacademic settings is important. Recent updates to the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) for AYA Oncology recommend patients be seen by centers with expertise in treating this population.3 As most existing AYA programs are located in larger tertiary care centers and many AYA patients have financial barriers to travel, this creates a conundrum for practitioners and patients.2

Although community AYA care in the United States has great potential, limited knowledge base, infrastructure, and resources stonewall the development of best practices and practical outcome measurements, which are critical for the expansion of quality care for this population.46 Infrastructure differences may also exist between academic medical centers and community settings. For instance, geographic proximity of medical and pediatric oncology disciplines, shared clinical and administrative resources, and higher volume of AYA patients are more routine in academic centers, which may impact the standardization and tracking of outcomes measurements across care models.1,2,7

The struggles and, perhaps, successes of our AYA Cancer Care Program (Cancer Program) at Bon Secours St. Francis (BSSF), established in 2012, highlight the nuances of defining, implementing, and interpreting successful AYA care metrics in community settings.

Community Cancer Program Description

BSSF Health System is located in Greenville, South Carolina, within a 6-county catchment area of 1.25 million people. The Cancer Program sees approximately 1,500 oncology referrals annually. A 65,000-square-foot outpatient medical center is home to medical and radiation oncology, administrative support, clinical research, navigation, a cancer registry, a quality program, psychology, and financial counseling. Currently, staff consists of 7 full-time medical oncologists, a gynecologic oncologist, 1.5 radiation oncologists (1 full time; 1 part time), and 6 nurse practitioners. The Cancer Program consists of coordinated inpatient and outpatient cancer care and is Quality Oncology Practice Initiative–certified. The program also supports a FACT- and CIBMT-accredited hematopoietic stem cell transplant (HSCT) program and a dedicated oncology clinical research program offering both NCI-sponsored studies via NCI Community Oncology Research Program affiliation and industry-sponsored studies.

Assessing the Health System for AYA Success

As opposed to grant or philanthropic funding, institutional support and commitment to the development of a sustainable clinical practice started the program with a 5-year development plan. Initial components included a pediatric hematologist/oncologist with special focus on the AYA population, a dedicated AYA nurse, and a medical oncologist AYA champion. Current components of the AYA program, both dedicated to AYAs and shared with the broader oncology program, are listed in Table 1. Over the past 5 years, other important components of the program were developed, including funding to support an AYA coordinator position, support services, and dedicated AYA space.

In addition to administrative support, 2 preexisting components were considered mission-critical: a high-capacity HSCT program and established clinical research programs with a clinical trial portfolio. These components directly impact multiple success factors considered necessary for AYA programs, especially the use of appropriate treatment protocols in AYA patients and the ability to offer trials and enroll AYA patients onto clinical studies.3,810 Other aspects of the health system were not as apparent, challenging comprehensive AYA patient care. Examples include AYA comfort and familiarity among subspecialty care providers, varying age requirements in the hospital units and practices, and limited access to mental health professionals. Cancer programs may be able to support some but not all of the components necessary for delivering quality AYA care, and the endeavor to build a perfect program may ultimately affect the long-term sustainability of an AYA program.7

With the mindset of not letting perfect be the enemy of good and with a core strategy of building a sustainable community-based program, we sought to maximize our existing strengths, which undoubtedly affected our predetermined measures of success. Nevertheless, a thorough assessment of health system policies, components, and personnel is absolutely necessary to establish practical success factors. Whether center-specific metrics can be universally applied to drive high quality and standardization among AYA programs is a broader issue that needs to be addressed among all AYA care stakeholders.

Measures of Successful AYA Care in the Community

With the pillars of administrative support, high-acuity cancer care infrastructure, and strong research ecosystem, the vision and mission guided formation of a 5-year strategic plan and the development of program-specific success metrics. These metrics were adapted from published reports and established academic models,1,9,11 including the NCI Progress Review Group report in 2006,12 and the United Kingdom National Health Service and National Institute for Health and Clinical Excellence 2005 report, “Improving Outcomes

Table 1.

Bon Secours St. Francis AYA Program and Components

Table 1.
Table 2.

AYA Community-Based Metrics and 5-Year Review

Table 2.
in Children and Young People With Cancer” (Table 2).13 Later programmatic development efforts were informed by the NCCN Guidelines for AYA Oncology and other recently published supportive care guidelines.3,4,14

Certain outcomes are centered on standardizing care across large health systems or multiple institutions or are central to drive AYA research, and therefore do not inform or impact patient care in the community setting. Examples include improvement in human papillomavirus vaccination, as well as quality-of-life and care delivery surveys (health-related quality of life measures, Pediatric Quality of Life Inventory).11 In addition, as previously noted, relatively smaller patient volumes at single institutions preclude gold standard outcome measures such as survival.1,15 Until well-studied and validated metrics are more clearly defined, metrics for community-based AYA programs are likely to be customized for each program.

Identification of core components critical to the institution's stated mission, however, should be a focus in defining success factors. We highlight 3 core aspects of our program: multidisciplinary conferences or clinics (MDCs), appropriateness of therapy, and clinical trial accrual. Increasingly, a shared-care model of placing patients at the center of multiple different disciplines is gaining acceptance in community cancer practices.16 We adopted this MDC model, whereby AYA patients are seen together by the “AYA Team” (AYA nurse, nurse navigator, and MD). When appropriate and as available, other providers (eg, social workers, researchers, nutritionists, licensed family counselors) will join the AYA Team during visits. Approximately 80% of AYA patients have been seen in this manner since program inception. MDCs and tumor boards are commonplace in both medical and pediatric oncology programs and are cited goals for AYA care.2,3 Although no AYA-specific tumor board is currently used, every newly referred AYA case is discussed with the medical oncologists with relevant disease expertise. In our program, this is permitted through the shared practice model between pediatric and adult oncologists. Subjective feedback from patients, families, and staff is positive, but the lack of standardized, objective measures and the intense resource requirements may preclude widespread adoption of the MDC as a “best practice” in the community setting.

Use of appropriate therapy regimens and adherence to therapy are 2 suggested benchmarks for defining optimal care for AYA patients with cancer.9,11,17 Establishing what is considered appropriate therapy can be difficult for rare tumors or common tumors that occur rarely in certain ages. Acute lymphoblastic leukemia (ALL) is an “AYA-defining malignancy,” with consensus- and guideline-driven recommendations for optimal therapy in 15- to 39-year-old patients.8,18 Our recent ALL experience is reflective of this effort to track meaningful outcomes (Figure 1). Importantly, lack of insurance at diagnosis (a

Figure 1.
Figure 1.

Acute lymphoblastic leukemia metrics at Bon Secours St. Francis Adolescent and Young Adult Oncology Cancer Care Program.

Abbreviations: BFM, Berlin-Frankfurt-Munich.

Citation: Journal of the National Comprehensive Cancer Network J Natl Compr Canc Netw 15, 9; 10.6004/jnccn.2017.0153

recognized negative prognostic factor) had no impact on patients receiving therapy, as all patients received pediatric-inspired, Berlin-Frankfurt-Munich–based therapy regimens, with 43% receiving this as part of a therapeutic clinical trial.17 Supplemental eTable 1 (available with this article at JNCCN.org) shows additional examples of specific therapies for AYA cancer types, illustrating the feasibility of prescribing intensive, multimodal therapy in community settings with appropriate support, infrastructure, and use of supportive care guidelines.

The clinical trial enrollment cliff of the medical oncology world begins with AYA patients and is recognized as a major reason for lack of improved AYA survival over the past 4 decades.10,19,20 Forty percent of AYA patients cared for by the AYA Team have enrolled in clinical studies, 26% as part of a therapeutic trial, which were equally split between NCI- and pharmaceutical-sponsored trials. Although this number is lower than pediatric oncologist accrual, it exceeds our overall center accrual rate (7%) and the national accrual rate in adults (2% to 3%).21 AYA accrual is increased through use of a central institutional review board, a “Just-in-Time” enrollment strategy for Clinical Trials Support Unit studies, and by assigning AYA studies to a subset of research nurses. Respectable clinical trial accrual within a community AYA program can be achieved, but it requires an integrated and dedicated clinical research team and engaged physicians championing clinical research.

Conclusions

Aside from shared-care models, appropriateness of therapy, and clinical trial accrual, many other components (psychosocial distress screening, fertility preservation counseling, financial counseling, and AYA support and networking) are important to define and measure successful AYA care in community settings. Coordinated efforts among community-based AYA programs, working collaboratively with academic-based AYA centers, will be needed to further define best practices in AYA cancer care that have measurable and meaningful impact.

See JNCCN.org for supplemental online content.

References

  • 1.

    Ferrari A, Thomas D, Franklin AR et al.. Starting an adolescent and young adult program: some success stories and some obstacles to overcome. J Clin Oncol 2010;28:48504857.

    • Search Google Scholar
    • Export Citation
  • 2.

    Reed D, Block RG, Johnson R. Creating an adolescent and young adult cancer program: lessons learned from pediatric and adult oncology practice bases. J Natl Compr Canc Netw 2014;12:14091415.

    • Search Google Scholar
    • Export Citation
  • 3.

    Coccia PF, Altman J, Bhatia S et al.. NCCN Clinical Practice Guidelines in Oncology: Adolescent and Young Adult Oncology. J Natl Compr Canc Netw 2012;10:11121150.

    • Search Google Scholar
    • Export Citation
  • 4.

    Nass SJ, Beaupin LK, Demark-Wahnefried W et al.. Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop. Oncologist 2015;20:186195.

    • Search Google Scholar
    • Export Citation
  • 5.

    Parsons HM, Harlan LC, Schmidt S et al.. Who treats adolescents and young adults with cancer? A report from the AYA HOPE Study. J Adolesc Young Adult Oncol 2015;4:141150.

    • Search Google Scholar
    • Export Citation
  • 6.

    Harlan LC, Lynch CF, Keegan TH et al.. Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study. J Cancer Surviv 2011;5:305314.

    • Search Google Scholar
    • Export Citation
  • 7.

    Barr RD. Planning a comprehensive program in adolescent and young adult oncology: a collision with reality. J Adolesc Young Adult Oncol 2016;5:303309.

    • Search Google Scholar
    • Export Citation
  • 8.

    Coccia PF, Pappo AS, Altman J et al.. NCCN Guidelines Insights. Adolescent and Young Adult Oncology, Version 2.2014. J Natl Compr Canc Netw 2014;12:2132.

    • Search Google Scholar
    • Export Citation
  • 9.

    Potosky AL, Harlan LC, Albritton K et al.. Use of appropriate initial treatment among adolescents and young adults with cancer. J Natl Cancer Inst 2014;106: pii: dju300.

    • Search Google Scholar
    • Export Citation
  • 10.

    Bleyer A, Morgan S, Barr R. Proceedings of a workshop: bridging the gap in care and addressing participation in clinical trials. Cancer 2006;107(7 Suppl):16561658.

    • Search Google Scholar
    • Export Citation
  • 11.

    Greenberg M, Klassen A, Gafni A et al.. Outcomes and metrics: measuring the impact of a comprehensive adolescent and young adult cancer program. Cancer 2011;117(10 Suppl):23422350.

    • Search Google Scholar
    • Export Citation
  • 12.

    Adolescent and Young Adult Oncology Progress Review Group. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. Bethesda, MD. NIH Publication No. 06-6067; 2006. Available at: https://www.cancer.gov/types/aya/research/ayao-august-2006.pdf. Accessed August 18, 2017.

    • Search Google Scholar
    • Export Citation
  • 13.

    National Collaborating Centre for Cancer. Guidance on Cancer Services: Improving Outcomes in Children and Young People with Cancer. London, UK: National Institute for Health and Clinical Excellence; 2005.

    • Search Google Scholar
    • Export Citation
  • 14.

    Loren AW, Mangu PB, Beck LN et al.. Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol 2013;31:25002510.

    • Search Google Scholar
    • Export Citation
  • 15.

    Ferrari A, Silva M, Veneroni L et al.. Measuring the efficacy of a project for adolescents and young adults with cancer: a study from the Milan Youth Project. Pediatr Blood Cancer 2016;63:21972204.

    • Search Google Scholar
    • Export Citation
  • 16.

    Siegel RD. ASCO Quality Care Symposium 2016 exemplars in quality and identifying high-quality practice: delivering quality in the community setting (Bon Secours St Francis Cancer Center). J Oncol Pract 2016;12:898901.

    • Search Google Scholar
    • Export Citation
  • 17.

    Robbins AS, Lerro CC, Barr RD. Insurance status and distant-stage disease at diagnosis among adolescent and young adult patients with cancer aged 15 to 39 years: National Cancer Data Base, 2004 through 2010. Cancer 2014;120:12121219.

    • Search Google Scholar
    • Export Citation
  • 18.

    Muffly L, Lichtensztajn D, Shiraz P et al.. Adoption of pediatric-inspired acute lymphoblastic leukemia regimens by adult oncologists treating adolescents and young adults: a population-based study. Cancer 2017;123:122130.

    • Search Google Scholar
    • Export Citation
  • 19.

    Barr RD, Ries LA, Lewis DR et al.. Incidence and incidence trends of the most frequent cancers in adolescent and young adult Americans, including “nonmalignant/noninvasive” tumors. Cancer 2016;122:10001008.

    • Search Google Scholar
    • Export Citation
  • 20.

    Shaw PH, Hayes-Lattin B, Johnson R, Bleyer A. Improving enrollment in clinical trials for adolescents with cancer. Pediatrics 2014;133(Suppl 3):S109113.

    • Search Google Scholar
    • Export Citation
  • 21.

    Sateren WB, Trimble EL, Abrams J et al.. How sociodemographics, presence of oncology specialists, and hospital cancer programs affect accrual to cancer treatment trials. J Clin Oncol 2002;20:21092017.

    • Search Google Scholar
    • Export Citation

Howland E. (Hal) Crosswell, MD, serves as Director of the Adolescent and Young Adult Hematology/Oncology Program and maintains a clinical practice at Bon Secours St. Francis Cancer Center in Greenville, South Carolina. He is double board certified in pediatrics and pediatric hematology/oncology. He is Chair of the AYA Committee of the Southeastern Community Oncology Research Consortium and is a member of the NCTN and NCORP AYA Working Groups. Dr. Crosswell is an affiliate member of the Hollings Cancer Center at The Medical University of South Carolina (MUSC) in Charleston, South Carolina. He also serves as Chief Medical Officer of KIYATEC, Inc., a Greenville-based life sciences company specializing in ex vivo 3D cell culture and tissue systems that more accurately replicate human biology and function. Dr. Crosswell is principal investigator for KIYATEC's NIH-funded research projects, including 2 NCI contracts focused on modelling breast, brain, and lung cancer, and developing a laboratory-based method for making clinical-grade platelets.

The ideas and viewpoints expressed in this commentary are those of the author and do not necessarily represent any policy, position, or program of NCCN.

Kaitlin N. Bomar, RN, BS, is a 2008 graduate of Clemson University's Nursing Program. She worked at Levine Children's Hospital in Charlotte, North Carolina, on their pediatric hematology, oncology, and bone marrow transplant unit before joining St. Francis's AYA team in 2012.

Nicole Vickery, RN, BSN, OCN, serves as Hematology Navigator and an AYA Navigator at Bon Secours St. Francis Cancer Center in Greenville, South Carolina.

Kristina Stoeppler-Biege, MS, RN, OCN, serves as Director of Clinical Operations at Bon Secours St. Francis Cancer Center in Greenville, South Carolina. As Director of Clinical Operations, she is responsible for Bon Secours hematology and oncology clinical practice, radiation oncology, finance, navigation, complementary medicine, support services, and clinical research. She received a Bachelor's Degree in biology and anthropology from Appalachian State University, and a Master's of Science in health sciences focusing on clinical research administration from George Washington University. She is also an oncology certified nurse.

Terra D. Spann, BS, OCN, is the Administrative Director of Oncology Services for Bon Secours St. Francis Health System. Ms. Spann has worked within the oncology program throughout the course of her career and has assisted in developing comprehensive oncology services within St. Francis. Her accomplishments include implementation of dedicated oncology infusion services, initiation of apheresis services, expansion of the Blood and Marrow Transplant unit, and oversight of multiple successful accreditations within the program, including the American College of Surgeons Commission on Cancer and the Foundation for the Accreditation of Cellular Therapy. Most recently, Ms. Spann served as the project lead for the design and development of the St. Francis Cancer Center, a freestanding center providing comprehensive care for oncology patients in the upstate.

Robert D. Siegel, MD, a board certified internist, hematologist, and medical oncologist, is the Oncology Program Director for the Bon Secours St. Francis Cancer Center. Prior to this, he had been a community-based oncologist with particular interest in quality improvement initiatives and cancer care delivery research. Dr. Siegel has held multiple roles in the American Board of Internal Medicine. He is currently a member of the organization's Board of Directors and is the Chair of the Medical Oncology Committee. He has served as the Cochair of the Quality of Care Subcommittee for the NCI Community Cancer Centers Program (NCCCP) and is currently on the executive committee for the Southeast Consortium for Oncology Research (SCOR). Dr. Siegel has served on ASCO committees and has worked with ASCO leadership in crafting alternatives to the ABIM practice improvement activities.

Supplementary Materials

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    Acute lymphoblastic leukemia metrics at Bon Secours St. Francis Adolescent and Young Adult Oncology Cancer Care Program.

    Abbreviations: BFM, Berlin-Frankfurt-Munich.

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