AYA Oncology Programs and the AYA Movement in the US Today: Current State and the Way Forward

1. AYA Oncology Programs and the AYA Movement in the US Today: Current State andthe Way Forward Karen Albritton, MD Simon Davies February 16, 2019

2. The Vision • That all AYAs in US have access to and delivery of biologically based, developmentally appropriate, evidence-informed care in age appropriate settings (from prevention, early detection, treatment through survivorship) that provides best survival and maintenance of QOL during and after cancer

3. What Domains are required • Research - epi, health services, biology and clinical interventions • Standards - with metrics and accountability • Provider education • Patient support (including age-appropriate environments) • Community awareness

4. AYA Movement History in U.S. • 2004 COG AYA committee • 2005-6 Progress Review Group • 2006 SEER monograph on AYA oncology (15-29) • 2006-7 Livestrong Young Adult Alliance • 5 year implementation plan • 2008 HOPE study begins

5. AYA Movement History in U.S. • 2009-10 LSYAA Quality Cancer Care position statement from Std of Care task Force • 2009 NCI/LAF Biology Workshop • 2011 Society of AYA Oncology forms • 2012 Report of LSYAA Implementation Plan

6. AYA Movement History in U.S. • 2012 – Critical Mass satellites from LAF • Organizational membership • 2012 NCCN Guidelines for AYA Cancer • Change it Back Centers of Excellence • 2013 Teen Cancer America • 2013 JAYAO • 2013 NCI “Next Steps” – a scientific update

7. AYA Movement History in U.S. • 2016 SWOG AYA committee • 2016 Critical Mass shifts to advocacy • 2017 Global Congress held in Atlanta • 12/18 Critical Mass shuts down

8. WHERE WE ARE TODAY

9. PROGRAMS 23 AYA Programs invested in by TCA • 17 academic/6 community • 11 ped-led/3 adult-led/9 partnership • 2 independently managed hospitals collaborating 5 more due in March 87 hospitals consulting TCA

10. National Registry for AYA Clinical Trial access for all AYA’s Biorepository Standard AYA measures (distress thermometer, QOL) Priority setting body Investment in AYA research RESEARCH WHAT WE HAVE WHAT WE LACK COG AYA committee SWOG AYA committee NCTN with AYA trials NCI • Healthcare Delivery Research Program • SEER National AYA Research Strategy meetings WHAT WE MIGHT USE WHAT WE COULD BORROW/STEAL • Childhood Cancer Survivorship Survey • National Cancer Research AYA Clinical Studies Group • National AYA Research Strategy Group • CAYACC • NCORP

11. No accountability organization, accrediting body Agreement on mandate to refer to “center of excellence” Self-assessment OR benchmarking tool STANDARDS WHAT WE LACK WHAT WE HAVE Livestrong Quality Cancer Care position statement NCCN AYA (supportive care) Guidelines Change it Back Center of Excellence criteria Teen Cancer America Strategic Guidelines for developing programs WHAT WE MIGHT USE WHAT WE COULD BORROW/STEAL • NICE Guidlelines/NHS Service specifications • Teenage Cancer Trust ‘A blueprint of care for teenagers and young adults with cancer.’ • CanTeen and Cancer Australia: ‘The National Service Delivery Framework for Adolescents and Young Adults with Cancer’. • New Zealand Service Provisions/Standards of Care • Canadian Task Force on Adolescents and Young Adults (AYA) with cancer framework of care. American College of Surgeons COC accreditation

12. National Conference National AYA accredited training in the professions PROVIDER EDUCATION WHAT WE HAVE WHAT WE LACK 2010 JCO position statement of essential elements of provider education Early Fellowships – eg. Cincinnati, USC Global AYA Cancer Congress Regional conferences Teen Cancer America Monthly Drip JAYAO WHAT WE COULD BORROW/STEAL WHAT WE MIGHT USE • Coventry Nursing Program • TYAC • TCT and Royal College of Nursing “Competencies :Caring for Teenagers and Young Adults with Cancer: A Competence and Career Framework for Nursing” Other professional organizations: ASCO, ONS, ASPHO, APHON, APOS, AONN

13. Coordinated advocacy Representation on Capitol Hill Comprehensive handbook/one stop website PATIENT SUPPORT WHAT WE LACK WHAT WE HAVE Teen Cancer America supported programs Teen Cancer America AYA Rooms/Zones Stupid Cancer/Cancer Con Regional Conferences Imermans Angels Livestrong First Descents Lacuna Loft Ulman Fund - Mission Control NCCN AYA Guidebook Regional charities eg. FWAYA, Ried R Sacco, Be Loud for Sophie WHAT WE MIGHT USE WHAT WE COULD BORROW/STEAL American Cancer Society Cancer Support Community Find Your Sense of Tumor Canteen “Now What”?

14. Enough celebrity attention National AYA Fundraising Activity Media platform PUBLIC AWARENESS WHAT WE HAVE WHAT WE LACK 15-40 Coalition Teen Cancer America (Cancer Rebellion) Many regional initiatives WHAT WE COULD BORROW/STEAL WHAT WE MIGHT USE Canteen Bandana campaign National AYA week Pharma and other corporate support

15. Particular US challenges • Large number of AYAs (75,000) • UK (2100) (15-24) • Australia (less than 1000) (15-30) • Canada (7600) (15-39) • Most of AYAs treated in community hospitals • Health Insurance restrictions • Lack of nationally coordinated health service • Little enforcement/auditing of standards of care • Limited financing to date (either gov’t or philanthropic) • Competition hindering collaboration • Lack of networked care in cities and regions

16. What infrastructure is needed? • An AYA leadership • A professional membership organization (ala TYAC)- SAYAO? • Provider education • Best practice guidelines • Credentialing • ? Accreditation of centers of excellence • A research cooperative group • A patient support organization (ala Canteen/TCT)- TCA? • Also responsible for raising awareness

17. National AYA Cancer Field

18. We owe it to them!

19. NEXT STEPS? • What is needed. Discussion?

20. RESOURCE SLIDES

21. 2009 Livestrong YAA Quality Cancer Care position statement …we hope to raise awareness of the need for evidence-based guidelines for AYA care and, in the interim before development of those guidelines, assist NCI-designated cancer centers, community cancer centers and hospitals, and private oncology practices in delivering optimal quality cancer care for AYAs. This position statement reflects distinct needs related to the diagnosis, treatment, and care of AYAs with cancer, as suggested by emergent research and clinical observations.

22. NCCN guidelines The goal of the NCCN Guidelines for AYA Oncology is to identify issues specific to the AYA population, recommend interventions unique to the AYA population; education physicians regarding the prevalence of cancer in AYAs; discuss long-term consequences; explain special considerations related to cancer management in AYA patients that aim to improve treatment tolerance, compliance and clinical outcomes; and promote participation in clinical trials.

23. NCCN Guidelines • Treatment related issues • Site of care • Clinical trials • Dose schedules • Management of Toxicities • Adherence • Fertility and Reproductive endocrine considerations • Psychosocial considerations- including individual behavioral factors, relationships, socioeconomic issues • Survivorship- late effects and long term followup • Disease specific issues related to age • Palliative and End-of-life care

24. https://www.ayacancernetwork.org.nz.

25. New Zealand The goal of the standards is to achieve excellence in AYA cancer care and address outcome disparities for certain ethnic, disease specific and age related populations for and among AYA in New Zealand. The standards will drive measurable quality improvements for this age group by enabling: • Health professionals to make decisions about care based on the latest evidence and best practice. •  Young people receiving health and supportive care services, their whānau and carers and the public to find information about the quality of services and care they should expect from their providers. •  Service providers to quickly and easily examine the performance of their organisation and assess improvement in standards of care they provide. •  Funders to be confident that the services they are purchasing are high quality and cost effective and focused on driving up quality.

26. A national framework is necessary to ensure consistent and cohesive care is provided to the relatively small numbers of AYAs diagnosed with cancer who are widely spread across the country. The AYA Cancer Network Aotearoa is responsible for the clinical oversight and leadership of these standards of care, including development and ongoing monitoring and evaluation. The Network has developed an online self-review tool to support these standards. The tool is designed to help service providers understand what aspects of the support and care they provide to AYAs in their region is working well and to identify areas where service improvements are required. The tool encourages sector-wide collaboration and the development of local service development plans that link with the national strategy for AYA cancer care. It is not intended to be a compliance tool for bench marking or making regional comparisons.

27. South Australian (SA) Adolescent and Young Adult Cancer Care Pathway …created under the auspices of the SA Cancer Clinical Network. It provides recommendations based on current evidence for best practice in the management of adolescents and young adults aged 15–25 years with a cancer diagnosis. …developed through a collaborative effort involving a wide range of health professionals, including paediatric and adult cancer specialists, generalist staff and consumers. It is a statement of consensus based on current best practice, evidence and accepted approaches to the management of adolescents and young adults throughout their cancer journey.

28. Lancet Oncology Commission on Future cancer research priorities (followup on Blue Ribbon Panel) Improve cancer outcomes for adolescents and young adults by fully applying each BRP recommendation to this population; foster clinical trial networks specifically for clinical and biological research of cancers in adolescents and young adults, and identify effective cancer care delivery models • Measure: Increase research into cancers in adolescents and young adults, and increase access to clinical trials • Metric: Increase proportion of adolescent and young adult patients with cancer who are treated at large centres (4 years) • Adolescent and young adult oncology—Adolescents and young adults with cancer are a vulnerable subpopulation whose outcomes have not improved to the same extent as those of young children.160 The cancers in adolescents and young adults are different to those of children and older adults because they represent a transition period between paediatric-like, embryonal cancers derived from mesodermal tissues and adult-like carcinomas derived from epithelial tissues. The most common cancers in this age range (eg, Hodgkin’s disease, germ-cell tumours, thyroid cancer, sarcomas) are rare compared with the more common cancers in adults.161 More than 90% of adolescents and young adults in North America receive their care in community practices where expertise in treating cancers in adolescents and young adults might be limited.162,163 Because most community practices do not participate in the US National Cancer Institute’s National Clinical Trial Network, this subpopulation has not benefited from the standardisation of care, the incremental improvement of sequential clinical trials, or the insights derived from linking biospecimens to clinical outcomes. Many other possible mechanisms could explain the survival gap in this group of patients, such as unfavourable tumour biology, unique pharmacokinetics, diagnostic delay, and poor adherence to prescribed therapies.165–168 • If fully applied to adolescents and young adults, the BRP recommendations will revolutionise oncology for these patients. For example, the BRP recommendation to develop a federated network of tumour profiling services accessible to patients and linked with opportunities for clinical trial participation could have a particularly important and positive effect on these patients. • In addition to existing BRP recommendations, two major recommendations specific to cancer treatment for adolescents and young adults are warranted. First, a clinical trial network specific to this subpopulation should be developed to encourage the development and reach of clinical trials specifically designed for this age group. This network could be independent, but would ideally represent collaborative efforts between adult and paediatric groups. The success of such trials has already been demonstrated. Investigators in both the Dana-Farber Cancer Institute ALL Consortium169 and the US Intergroup study C10403170 examined the use of paediatric-style ALL treatment protocols in adolescents and young adults and found markedly increased survival compared with traditional adult protocol-based treatment. Second, research on the most effective health-care delivery model for adolescents and young adults with cancer is essential. Despite the evidence outlined above, investigators in California found that the percentage of adolescents and young adults with ALL receiving appropriate treatment actually decreased from 31% in 2008–12 to 21% in 2013–14.163 According to findings from the population-based AYA-HOPE study,171 nearly 30% of adolescents and young adults across settings did not receive appropriate medical therapy. Several jurisdictions have built alternative models of cancer care delivery for this age group; for example, the UK has built a nationwide network of cancer units for adolescents and young adults.172 Although the BRP denotes issues such as coverage and fragmentation of care delivery as beyond the scope of their report, an assessment of these novel, mature mechanisms of cancer care delivery would inform future initiatives for adolescents and young adults. Goals should include improving cancer outcomes by fully applying each BRP recommendation to this population, fostering a clinical trial network for clinical and biological research that is specifically for adolescents and young adults, and identifying effective cancer care delivery models for this age group.

31. [UK] TYA Cancer Clinical Studies group established [UK] National Institute of Clinical and Health Excellence publishes Guidance report for improving outcomes in children and YAs (13-25) [CANADA] CPAC/C17 establish Task Force on AYAs with Cancer to improve oncology care (12-29) [AUS] Federal gov’t funds Youth Cancer Networks Program with $15 million to be matched by regions [AUS]1985 – 6 teenagers start CanTeen for peer support (12-25) [UK]1990 – First specialist unit built by Teenage Cancer Trust

32. [UK] All designated Cancer Centers required to adhere to national standards of care and treatment [AUS] Federal gov’t gives Youth Cancer Services additional $18.2 million over 4 years for research and specialized services [UK] National Cancer Intelligence Network connects all cancer intelligence data recording and collection. By 2014, available in real time [CAN] Diploma program in AYA oncology developed