Next steps for adolescent and young adult oncology workshop: An update on progress and recommendations for the future

Each year, 70,000 adolescents and young adults (AYAs) between ages 15 and 39 years in the United States are diagnosed with cancer. In 2006, a National Cancer Institute (NCI) Progress Review Group (PRG) examined the state of science associated with cancer among AYAs. To assess the impact of the PRG and examine the current state of AYA oncology research, the NCI, with support from the LIVESTRONG Foundation, sponsored a workshop entitled “Next Steps in Adolescent and Young Adult Oncology” on September 16 and 17, 2013, in Bethesda, Maryland. This report summarizes the findings from the workshop, opportunities to leverage existing data, and suggestions for future research priorities. Multidisciplinary teams that include basic scientists, epidemiologists, trialists, biostatisticians, clinicians, behavioral scientists, and health services researchers will be essential for future advances for AYAs with cancer. Cancer 2016;122:988–999. © 2016 American Cancer Society

[1]  R. Larson,et al.  Favorable Outcomes for Older Adolescents and Young Adults (AYA) with Acute Lymphoblastic Leukemia (ALL): Early Results of U.S. Intergroup Trial C10403 , 2014 .

[2]  Kathleen A Cronin,et al.  The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute. , 2014, Cancer.

[3]  D. R. Lewis,et al.  Adolescent and young adult cancer survival. , 2014, Journal of the National Cancer Institute. Monographs.

[4]  S. Schwartz,et al.  Use of appropriate initial treatment among adolescents and young adults with cancer. , 2014, Journal of the National Cancer Institute.

[5]  Heather L. Mulder,et al.  Targetable kinase-activating lesions in Ph-like acute lymphoblastic leukemia. , 2014, The New England journal of medicine.

[6]  S. Bhatia,et al.  Impact of treatment site in adolescents and young adults with central nervous system tumors. , 2014, Journal of the National Cancer Institute.

[7]  Ming-Hui Chen,et al.  Cancer-specific outcomes among young adults without health insurance. , 2014, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[8]  O. Oberlin,et al.  Time to diagnosis of Ewing tumors in children and adolescents is not associated with metastasis or survival: a prospective multicenter study of 436 patients. , 2014, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[9]  D. Ekwueme,et al.  Estimating the health and economic burden of cancer among those diagnosed as adolescents and young adults. , 2014, Health affairs.

[10]  D. R. Lewis,et al.  Adolescent and young adult oncology (AYAO) patient enrollments onto National Cancer Institute (NCI)-supported trials from 2000 to 2010. , 2014 .

[11]  A. Hinz,et al.  Gender-specific quality of life after cancer in young adulthood: a comparison with the general population , 2014, Quality of Life Research.

[12]  Thomas O. Blank,et al.  Assessing quality of life in young adult cancer survivors: development of the Survivorship-Related Quality of Life scale , 2014, Quality of Life Research.

[13]  F. Balis,et al.  A Qualitative Study of Phase III Cancer Clinical Trial Enrollment Decision-Making: Perspectives from Adolescents, Young Adults, Caregivers, and Providers. , 2014, Journal of adolescent and young adult oncology.

[14]  K. Boisen,et al.  Self-reported barriers to medication adherence among chronically ill adolescents: a systematic review. , 2014, The Journal of adolescent health : official publication of the Society for Adolescent Medicine.

[15]  C. Lynch,et al.  Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers? , 2014, Journal of Cancer Survivorship.

[16]  C. Bacchi,et al.  Clinicopathologic Findings and BRAF Mutation in Cutaneous Melanoma in Young Adults , 2014, Applied immunohistochemistry & molecular morphology : AIMM.

[17]  Ashley Wilder Smith,et al.  “Cancer Sucks,” and Other Ponderings by Adolescent and Young Adult Cancer Survivors , 2014, Journal of psychosocial oncology.

[18]  J. Rowland,et al.  Are survivors who report cancer‐related financial problems more likely to forgo or delay medical care? , 2013, Cancer.

[19]  Yun Li,et al.  Prevalence and predictors of post‐traumatic stress symptoms in adolescent and young adult cancer survivors: a 1‐year follow‐up study , 2013, Psycho-oncology.

[20]  Anne Victoria Neale,et al.  Health-related quality of life of adolescent and young adult patients with cancer in the United States: the Adolescent and Young Adult Health Outcomes and Patient Experience study. , 2013, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[21]  J. Spinelli,et al.  Antidepressant use among survivors of childhood, adolescent and young adult cancer: A report of the childhood, adolescent and young adult cancer survivor (CAYACS) research program , 2013, Pediatric blood & cancer.

[22]  G. Keel,et al.  Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults with Cancer: The AYA HOPE Study , 2013, Front. Oncol..

[23]  H. Caron,et al.  A worldwide collaboration to harmonize guidelines for the long‐term follow‐up of childhood and young adult cancer survivors: A report from the international late effects of Childhood Cancer Guideline Harmonization Group , 2013, Pediatric blood & cancer.

[24]  C. Anders,et al.  Debate: The biology of breast cancer in young women is unique. , 2013, The oncologist.

[25]  S. Chambers,et al.  Health-related quality of life and life satisfaction in colorectal cancer survivors: trajectories of adjustment , 2013, Health and Quality of Life Outcomes.

[26]  R. Feltbower,et al.  A systematic review of time to diagnosis in children and young adults with cancer , 2013, Archives of Disease in Childhood.

[27]  A. Bleyer,et al.  Incidence of breast cancer with distant involvement among women in the United States, 1976 to 2009. , 2013, JAMA.

[28]  C. Perou,et al.  Molecular characterization of basal-like and non-basal-like triple-negative breast cancer. , 2013, The oncologist.

[29]  Xiao-li Zhang,et al.  The ectopic expression of BRCA1 is associated with genesis, progression, and prognosis of breast cancer in young patients , 2012, Diagnostic Pathology.

[30]  G. Demetri,et al.  Tivantinib (ARQ 197), a selective inhibitor of MET, in patients with microphthalmia transcription factor–associated tumors , 2012, Cancer.

[31]  Steven D. Schmidt,et al.  Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult , 2012, Cancer.

[32]  Angela R. Moore,et al.  Health status of adolescent and young adult cancer survivors , 2012, Cancer.

[33]  Ken R. Smith,et al.  Marriage and divorce among young adult cancer survivors , 2012, Journal of Cancer Survivorship.

[34]  D. Wechsler,et al.  Adolescent and young adult oncology. Clinical practice guidelines in oncology. , 2012, Journal of the National Comprehensive Cancer Network : JNCCN.

[35]  Steven J. M. Jones,et al.  Comprehensive molecular characterization of human colon and rectal cancer , 2012, Nature.

[36]  S. Schwartz,et al.  Impact of cancer on work and education among adolescent and young adult cancer survivors. , 2012, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[37]  M. Relling,et al.  Nonadherence to oral mercaptopurine and risk of relapse in Hispanic and non-Hispanic white children with acute lymphoblastic leukemia: a report from the children's oncology group. , 2012, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[38]  J. Bowman,et al.  Young adult cancer survivors' psychosocial well-being: a cross-sectional study assessing quality of life, unmet needs, and health behaviors , 2012, Supportive Care in Cancer.

[39]  H. Kuerer,et al.  Biology, Treatment, and Outcome in Very Young and Older Women with DCIS , 2012, Annals of Surgical Oncology.

[40]  R. Sanson-Fisher,et al.  Preliminary development and psychometric evaluation of an unmet needs measure for adolescents and young adults with cancer: the Cancer Needs Questionnaire - Young People (CNQ-YP) , 2012, Health and Quality of Life Outcomes.

[41]  L. von Essen,et al.  Cancer during Adolescence: Negative and Positive Consequences Reported Three and Four Years after Diagnosis , 2011, PloS one.

[42]  Yixin Zeng,et al.  Patients 35 years old or younger with operable breast cancer are more at risk for relapse and survival: a retrospective matched case-control study. , 2011, Breast.

[43]  L. Harlan,et al.  Clinical trial participation and time to treatment among adolescents and young adults with cancer: does age at diagnosis or insurance make a difference? , 2011, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[44]  A. Partridge,et al.  Adjuvant therapies for very young women with early stage breast cancer. , 2011, Breast.

[45]  Daniel W. Goldberg,et al.  Geographic proximity to treatment for early stage breast cancer and likelihood of mastectomy. , 2011, Breast.

[46]  J. Powell,et al.  p16 expression: a marker of differentiation between childhood malignant melanomas and Spitz nevi. , 2011, Journal of the American Academy of Dermatology.

[47]  Qing-Rong Chen,et al.  Identification of an inhibitor of the EWS-FLI1 oncogenic transcription factor by high-throughput screening. , 2011, Journal of the National Cancer Institute.

[48]  A. Geiger,et al.  Delineating the age ranges used to define adolescents and young adults. , 2011, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[49]  D. Blair,et al.  Unique characteristics of adolescent and young adult acute lymphoblastic leukemia, breast cancer, and colon cancer. , 2011, Journal of the National Cancer Institute.

[50]  Eric J Feuer,et al.  Projections of the cost of cancer care in the United States: 2010-2020. , 2011, Journal of the National Cancer Institute.

[51]  Kevin K Dobbin,et al.  Identification of novel cluster groups in pediatric high-risk B-precursor acute lymphoblastic leukemia with gene expression profiling: correlation with genome-wide DNA copy number alterations, clinical characteristics, and outcome. , 2010, Blood.

[52]  S. Siegel,et al.  Quality cancer care for adolescents and young adults: a position statement. , 2010, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[53]  Christos Kremmydas Childhood , 2010, The Classical Review.

[54]  J. Pringle,et al.  Association of invasion-promoting tenascin-C additional domains with breast cancers in young women , 2010, Breast Cancer Research.

[55]  S. Hopyan,et al.  Clinical outcome of children and adults with localized Ewing sarcoma , 2010, Cancer.

[56]  A. Hinz,et al.  Posttraumatic stress, depression and anxiety among adult long-term survivors of cancer in adolescence. , 2010, European journal of cancer.

[57]  J. Whelan,et al.  Recruitment of adolescents and young adults to cancer clinical trials--international comparisons, barriers, and implications. , 2010, Seminars in oncology.

[58]  D. Jukic,et al.  Microrna profiling analysis of differences between the melanoma of young adults and older adults , 2010, Journal of Translational Medicine.

[59]  A. Ferrari,et al.  Distinct features of colorectal cancer in children and adolescents , 2010, Cancer.

[60]  Peter H Shaw,et al.  A Comparison of Clinical Trial Enrollment Between Adolescent and Young Adult (AYA) Oncology Patients Treated at Affiliated Adult and Pediatric Oncology Centers , 2009, Journal of pediatric hematology/oncology.

[61]  A. Bleyer The Quid Pro Quo of pediatric versus adult services for older adolescent cancer patients , 2009, Pediatric blood & cancer.

[62]  J. Varni,et al.  The PedsQL™ 4.0 Generic Core Scales Young Adult Version , 2009, Journal of health psychology.

[63]  Jane E. Ewing,et al.  Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder , 2009, Quality of Life Research.

[64]  C. Bloomfield,et al.  What determines the outcomes for adolescents and young adults with acute lymphoblastic leukemia treated on cooperative group protocols? A comparison of Children's Cancer Group and Cancer and Leukemia Group B studies. , 2008, Blood.

[65]  David M. Thomas,et al.  The distinctive biology of cancer in adolescents and young adults , 2008, Nature Reviews Cancer.

[66]  A. Ritchey,et al.  Different Rates of Clinical Trial Enrollment Between Adolescents and Young Adults Aged 15 to 22 Years Old and Children Under 15 Years Old With Cancer at a Children's Hospital , 2007, Journal of pediatric hematology/oncology.

[67]  A. Sparks,et al.  The Genomic Landscapes of Human Breast and Colorectal Cancers , 2007, Science.

[68]  Harold E. Nelson,et al.  Site of oncologic specialty care for older adolescents in Utah. , 2007, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[69]  M. Ladanyi,et al.  TFE3 fusions activate MET signaling by transcriptional up-regulation, defining another class of tumors as candidates for therapeutic MET inhibition. , 2007, Cancer research.

[70]  A. Termuhlen,et al.  Patterns of Care Among Adolescents With Malignancy in Ohio , 2006, Journal of pediatric hematology/oncology.

[71]  Jeremy MG Taylor,et al.  Mitotic Rate and Younger Age Are Predictors of Sentinel Lymph Node Positivity: Lessons Learned From the Generation of a Probabilistic Model , 2004, Annals of Surgical Oncology.

[72]  Kate Steinbeck,et al.  Treatment adherence of youth and young adults with and without a chronic illness. , 2003, Nursing & health sciences.

[73]  Leslie Bernstein,et al.  Childhood cancer patients' access to cooperative group cancer programs , 2003, Cancer.

[74]  J. Cayuela,et al.  Should adolescents with acute lymphoblastic leukemia be treated as old children or young adults? Comparison of the French FRALLE-93 and LALA-94 trials. , 2003, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[75]  S. Donaldson,et al.  Addition of ifosfamide and etoposide to standard chemotherapy for Ewing's sarcoma and primitive neuroectodermal tumor of bone. , 2003, The New England journal of medicine.

[76]  R. Kane,et al.  The Minneapolis-Manchester Quality of Life instrument: reliability and validity of the Adolescent Form. , 2002, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[77]  D. Ronis,et al.  Age at diagnosis and quality of life in breast cancer survivors. , 2002, Cancer practice.

[78]  J. Berzofsky,et al.  Pilot trial of tumor-specific peptide vaccination and continuous infusion interleukin-2 in patients with recurrent Ewing sarcoma and alveolar rhabdomyosarcoma: an inter-institute NIH study. , 2002, Medical and Pediatric Oncology.

[79]  D. Green,et al.  Thyroid Dysfunction in Survivors of Hodgkin's Disease (HD): Data from the Childhood Cancer Survivor Study (CCSS) , 1999 .

[80]  H. Honoré,et al.  Breast cancer in young women. , 1979, British medical journal.

[81]  Gwyn McClelland Survivors , 1891, The Hospital.

[82]  R. Zon Reforming the community research program: from Community Clinical Oncology Program to the National Cancer Institute Community Oncology Research Program. , 2014, American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting.

[83]  P. Schofield,et al.  The relationship between unmet needs and distress amongst young people with cancer , 2010, Supportive Care in Cancer.

[84]  D. Lopez-Terrada,et al.  Molecular and genetic basis of childhood cancer. , 2010, Cancer biomarkers : section A of Disease markers.

[85]  J. Downing,et al.  Gene expression classifiers for relapse-free survival and minimal residual disease improve risk classification and outcome prediction in pediatric B-precursor acute lymphoblastic leukemia. , 2010, Blood.

[86]  J. Hansson Familial melanoma. , 2008, The Surgical clinics of North America.

[87]  H. Lane,et al.  The adolescent-young adult. , 1959 .