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

Cancer

Volumn 122, Issue 7, 2016, Pages 988-999

  Smith, Ashley Wilder ^a   Seibel, Nita L ^a   Lewis, Denise R ^a   Albritton, Karen H ^b   Blair, Donald F ^a   Blanke, Charles D ^c   Bleyer, W Archie ^d   Freyer, David R ^e   Geiger, Ann M ^a   Hayes Lattin, Brandon ^c   Tricoli, James V ^a   Wagner, Lynne I ^f   Zebrack, Bradley J ^g  

^a NATIONAL CANCER INSTITUTE   (United States)

^b UNIVERSITY OF NORTH TEXAS   (United States)

^c OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

^d OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

^e UNIVERSITY OF SOUTHERN CALIFORNIA   (United States)

^f WAKE FOREST SCHOOL OF MEDICINE   (United States)

^g UNIVERSITY OF MICHIGAN   (United States)

Author keywords

adolescent; biology; cancer; cancer care; epidemiology; quality of life; young adult

Indexed keywords

ACUTE LYMPHOBLASTIC LEUKEMIA; ADOLESCENT; ADULT; AGE; BREAST CANCER; CANCER GENETICS; CANCER INCIDENCE; CANCER MORTALITY; CANCER PROGNOSIS; CANCER RESEARCH; CANCER SURVIVAL; COLORECTAL CANCER; ETHNICITY; GENE MUTATION; HEALTH CARE ACCESS; HEALTH CARE QUALITY; HEALTH SERVICE; HUMAN; MEDICAL CARE; MELANOMA; ONCOLOGY; OUTCOME ASSESSMENT; OUTCOMES RESEARCH; PREVALENCE; PRIORITY JOURNAL; PROTO ONCOGENE; RACE; REVIEW; SARCOMA; SEX DIFFERENCE; WORKSHOP; YOUNG ADULT; FEMALE; MALE; NATIONAL HEALTH ORGANIZATION; NEOPLASM; TRENDS; UNITED STATES;

ADOLESCENT; ADULT; FEMALE; HUMANS; MALE; MEDICAL ONCOLOGY; NATIONAL CANCER INSTITUTE (U.S.); NEOPLASMS; UNITED STATES; YOUNG ADULT;

EID: 84961782634     PISSN: 0008543X     EISSN: 10970142     Source Type: Journal    
DOI: 10.1002/cncr.29870     Document Type: Review

References (95)

1. Adolescent and Young Adult Oncology Progress Review Group. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. NIH Pub. No. 06-6067. Bethesda, MD: National Cancer Institute, National Institutes of Health, and the LIVESTRONG Young Adult Alliance; 2006.
2. Geiger AM, Castellino SM,. Delineating the age ranges used to define adolescents and young adults. J Clin Oncol. 2011; 29: e492-e493.
3. National Cancer Institute, National Institutes of Health. A snapshot of adolescent and young adult cancers. Available at: http://www.cancer.gov/researchandfunding/snapshots/adolescent-young-adult. Accessed March 12, 2015.
4. Surveillance, Epidemiology and End Results Program, National Cancer Institute. SEER∗Stat Software, version 8.1.5. Available at: http://seer.cancer.gov/seerstat/. Accessed March 12, 2015.
5. Lewis DR, Seibel NL, Smith AW, Stedman MR,. Adolescent and young adult cancer survival. J Natl Cancer Inst Monogr. 2014; 2014: 228-235.
6. Stock W, Luger SM, Advani AS, et al., Favorable outcomes for older adolescents and young adults (AYA) with acute lymphoblastic leukemia (ALL): early results of US Intergroup Trial C10403 [abstract]. Blood. 2014; 124: 796.
7. National Cancer Institute, National Institutes of Health. Current Programs. TARGET: Therapeutically Applicable Research to Generate Effective Treatments. Available at: https://ocg.cancer.gov/. Accessed March 23, 2015.
8. Harvey RC, Mullighan CG, Wang X, 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. Blood. 2010; 116: 4874-4884.
9. Kang H, Chen IM, Wilson CS, 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. Blood. 2010; 115: 1394-1405.
10. Roberts KG, Li Y, Payne-Turner D, et al., Targetable kinase-activating lesions in Ph-like acute lymphoblastic leukemia. N Engl J Med. 2014; 371: 1005-1015.
11. Bleyer A, Barr R, Hayes-Lattin B, Thomas D, Ellis C, Anderson B,. The distinctive biology of cancer in adolescents and young adults. Nat Rev Cancer. 2008; 8: 288-298.
12. Sultan I, Rodriguez-Galindo C, El-Taani H, et al., Distinct features of colorectal cancer in children and adolescents: a population-based study of 159 cases. Cancer. 2010; 116: 758-765.
13. Tricoli JV, Seibel NL, Blair DG, Albritton K, Hayes-Lattin B,. Unique characteristics of adolescent and young adult acute lymphoblastic leukemia, breast cancer, and colon cancer. J Natl Cancer Inst. 2011; 103: 628-635.
14. The Cancer Genome Atlas Network. Comprehensive molecular characterization of human colon and rectal cancer. Nature. 2012; 487: 330-337.
15. Wood LD, Parsons DW, Jones S, et al., The genomic landscapes of human breast and colorectal cancers. Science. 2007; 318: 1108-1113.
16. Narod SA,. Breast cancer in young women. Nat Rev Clin Oncol. 2012; 9: 460-470.
17. Johnson RH, Chien FL, Bleyer A,. Incidence of breast cancer with distant involvement among women in the United States, 1976 to 2009. JAMA. 2013; 309: 800-805.
18. Colleoni M, Anders CK,. Debate: the biology of breast cancer in young women is unique. Oncologist. 2013; 18: e13-e15.
19. Peng R, Wang S, Shi Y, 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. Breast. 2011; 20: 568-573.
20. Zhang Q, Zhang Q, Cong H, Zhang X,. The ectopic expression of BRCA1 is associated with genesis, progression, and prognosis of breast cancer in young patients [serial online]. Diagn Pathol. 2012; 7: 181.
21. Guttery DS, Hancox RA, Mulligan KT, et al., Association of invasion-promoting tenascin-C additional domains with breast cancers in young women [serial online]. Breast Cancer Res. 2010; 12: R57.
22. Prat A, Adamo B, Cheang MC, Anders CK, Carey LA, Perou CM,. Molecular characterization of basal-like and non-basal-like triple-negative breast cancer. Oncologist. 2013; 18: 123-133.
23. Freedman RA, Partridge AH,. Adjuvant therapies for very young women with early stage breast cancer. Breast. 2011; 20 (suppl 3): S146-S149.
24. Sondak VK, Taylor JM, Sabel MS, et al., Mitotic rate and younger age are predictors of sentinel lymph node positivity: lessons learned from the generation of a probabilistic model. Ann Surg Oncol. 2004; 11: 247-258.
25. Hansson J,. Familial melanoma. Surg Clin North Am. 2008; 88: 897-916, viii.
26. Estrozi B, Machado J, Rodriguez R, Bacchi CE,. Clinicopathologic findings and BRAF mutation in cutaneous melanoma in young adults. Appl Immunohistochem Mol Morphol. 2014; 22: 57-64.
27. Al Dhaybi R, Agoumi M, Gagne I, McCuaig C, Powell J, Kokta V,. p16 expression: a marker of differentiation between childhood malignant melanomas and Spitz nevi. J Am Acad Dermatol. 2011; 65: 357-363.
28. Jukic DM, Rao UN, Kelly L, et al., Microrna profiling analysis of differences between the melanoma of young adults and older adults [serial online]. J Transl Med. 2010; 8: 27.
29. Aplan PD, Shern JF, Khan J,. Molecular and genetic basis of childhood cancer. In:, Pizzo PA, Poplack DG, eds. Principles and Practice of Pediatric Oncology. 7th ed. Philadelphia, PA: Wolters Kluwer; 2016: 46-48.
30. Grier HE, Krailo MD, Tarbell NJ, et al., Addition of ifosfamide and etoposide to standard chemotherapy for Ewing's sarcoma and primitive neuroectodermal tumor of bone. N Engl J Med. 2003; 348: 694-701.
31. Grohar PJ, Woldemichael GM, Griffin LB, et al., Identification of an inhibitor of the EWS-FLI1 oncogenic transcription factor by high-throughput screening. J Natl Cancer Inst. 2011; 103: 962-978.
32. Dagher R, Long LM, Read EJ, 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. Med Pediatr Oncol. 2002; 38: 158-164.
33. Tsuda M, Davis IJ, Argani P, et al., TFE3 fusions activate MET signaling by transcriptional up-regulation, defining another class of tumors as candidates for therapeutic MET inhibition. Cancer Res. 2007; 67: 919-929.
34. Wagner AJ, Goldberg JM, Dubois SG, et al., Tivantinib (ARQ 197), a selective inhibitor of MET, in patients with microphthalmia transcription factor-associated tumors: results of a multicenter phase 2 trial. Cancer. 2012; 118: 5894-5902.
35. Fern LA, Whelan JS,. Recruitment of adolescents and young adults to cancer clinical trials-international comparisons, barriers, and implications. Semin Oncol. 2010; 37: e1-e8.
36. Downs-Canner S, Shaw PH,. A comparison of clinical trial enrollment between adolescent and young adult (AYA) oncology patients treated at affiliated adult and pediatric oncology centers. J Pediatr Hematol Oncol. 2009; 31: 927-929.
37. Shaw PH, Ritchey AK,. 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. J Pediatr Hematol Oncol. 2007; 29: 811-814.
38. Liu L, Krailo M, Reaman GH, Bernstein L,. Childhood cancer patients' access to cooperative group cancer programs: a population-based study. Cancer. 2003; 97: 1339-1345.
39. Seibel N, Hunsberger S, O'Mara AM, et al., Adolescent and young adult oncology (AYAO) patient enrollments onto National Cancer Institute (NCI)-supported trials from 2000 to 2010 [abstract]. J Clin Oncol. 2014; 32. Abstract 10058.
40. Parsons HM, Harlan LC, Seibel NL, Stevens JL, Keegan TH,. Clinical trial participation and time to treatment among adolescents and young adults with cancer: does age at diagnosis or insurance make a difference? J Clin Oncol. 2011; 29: 4045-4053.
41. Barakat LP, Schwartz LA, Reilly A, Deatrick JA, Balis F,. A qualitative study of phase III cancer clinical trial enrollment decision-making: perspectives from adolescents, young adults, caregivers, and providers. J Adolesc Young Adult Oncol. 2014; 3: 3-11.
42. Albritton KH, Wiggins CH, Nelson HE, Weeks JC,. Site of oncologic specialty care for older adolescents in Utah. J Clin Oncol. 2007; 25: 4616-4621.
43. Wolfson J, Sun CL, Kang T, Wyatt L, D'Appuzzo M, Bhatia S,. Impact of treatment site in adolescents and young adults with central nervous system tumors [serial online]. J Natl Cancer Inst. 2014; 106: dju166.
44. Collins C, Freyer DR,. Deficits in clinical trial enrollment among adolescents and young adults with cancer treated at an academic medical center [serial online]. Pediatr Blood Cancer. 2014; 61 (S2): S344.
45. Zon RT,. Reforming the community research program: from Community Clinical Oncology Program to the National Cancer Institute Community Oncology Research Program. Am Soc Clin Oncol Educ Book. 2014: e116-e119.
46. Paulussen M, Ahrens S, Juergens HF,. Cure rates in Ewing tumor patients aged over 15 years are better in pediatric oncology units: results of GPOH CESS/EICESS studies [abstract]. Proc Am Soc Clin Oncol. 2003; 22: 816. Abstract 3279.
47. Boissel N, Auclerc MF, Lheritier V, 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. J Clin Oncol. 2003; 21: 774-780.
48. Yeager ND, Hoshaw-Woodard S, Ruymann FB, Termuhlen A,. Patterns of care among adolescents with malignancy in Ohio. J Pediatr Hematol Oncol. 2006; 28: 17-22.
49. Boscoe FP, Johnson CJ, Henry KA, et al., Geographic proximity to treatment for early stage breast cancer and likelihood of mastectomy. Breast. 2011; 20: 324-328.
50. Bleyer A,. The quid pro quo of pediatric versus adult services for older adolescent cancer patients. Pediatr Blood Cancer. 2010; 54: 238-241.
51. Zebrack B, Kent EE, Keegan TH, Kato I, Smith AW,. " Cancer sucks," and other ponderings by adolescent and young adult cancer survivors. J Psychosoc Oncol. 2014; 32: 1-15.
52. Lethaby CD, Picton S, Kinsey SE, Phillips R, van Laar M, Feltbower RG,. A systematic review of time to diagnosis in children and young adults with cancer. Arch Dis Child. 2013; 98: 349-355.
53. Brasme JF, Chalumeau M, Oberlin O, Valteau-Couanet D, Gaspar N,. Time to diagnosis of Ewing tumors in children and adolescents is not associated with metastasis or survival: a prospective multicenter study of 436 patients. J Clin Oncol. 2014; 32: 1935-1940.
54. Mariotto AB, Yabroff KR, Shao Y, Feuer EJ, Brown ML,. Projections of the cost of cancer care in the United States: 2010-2020. J Natl Cancer Inst. 2011; 103: 117-128.
55. Guy GP Jr, Yabroff KR, Ekwueme DU, et al., Estimating the health and economic burden of cancer among those diagnosed as adolescents and young adults. Health Aff (Millwood). 2014; 33: 1024-1031.
56. Kent EE, Forsythe LP, Yabroff KR, et al., Are survivors who report cancer-related financial problems more likely to forgo or delay medical care? Cancer. 2013; 119: 3710-3717.
57. Keegan TH, Tao L, DeRouen MC, et al., Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers? J Cancer Surviv. 2014; 8: 282-292.
58. Aizer AA, Falit B, Mendu ML, et al., Cancer-specific outcomes among young adults without health insurance. J Clin Oncol. 2014; 32: 2025-2030.
59. Sommers BD,. Number of Young Adults Gaining Insurance Due to the Affordable Care Act Now Tops 3 Million. Assistant Secretary for Planning and Evaluation (ASPE) Issue Brief. Washington, DC: Department of Health and Human Services; 2012. Available at: http://aspe.hhs.gov/aspe/gaininginsurance/rb.cfm. Accessed December 24, 2013.
60. Black LI, Cohen RA,. Insurance status by state Medicaid expansion status: early release of estimates from the National Health Interview Survey, 2013-September 2014. National Center for Health Statistics; 2015. Available at http://www.cdc.gov/nchs/data/nhis/health-insurance/MedExAUER.pdf. Accessed December 24, 2013.
61. Gupta AA, Pappo A, Saunders N, et al., Clinical outcome of children and adults with localized Ewing sarcoma: impact of chemotherapy dose and timing of local therapy. Cancer. 2010; 116: 3189-3194.
62. Alvarado R, Lari SA, Roses RE, et al., Biology, treatment, and outcome in very young and older women with DCIS. Ann Surg Oncol. 2012; 19: 3777-3784.
63. Stock W, La M, Sanford B, 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. Blood. 2008; 112: 1646-1654.
64. Potosky AL, Harlan LC, Albritton K, et al., Use of appropriate initial treatment among adolescents and young adults with cancer [serial online]. J Natl Cancer Inst. 2014; 106: dju300.
65. Hanghoj S, Boisen KA,. Self-reported barriers to medication adherence among chronically ill adolescents: a systematic review. J Adolesc Health. 2014; 54: 121-138.
66. Bhatia S, Landier W, Shangguan M, 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. J Clin Oncol. 2012; 30: 2094-2101.
67. Rosina R, Crisp J, Steinbeck K,. Treatment adherence of youth and young adults with and without a chronic illness. Nurs Health Sci. 2003; 5: 139-147.
68. Zebrack B, Mathews-Bradshaw B, Siegel S,. Quality cancer care for adolescents and young adults: a position statement. J Clin Oncol. 2010; 28: 4862-4867.
69. Coccia PF, Altman J, Bhatia S, et al., Adolescent and young adult oncology. clinical practice guidelines in oncology. J Natl Compr Canc Netw. 2012; 10: 1112-1150.
70. Health Care Rights Initiative. Change it back. AYA Cancer Alliance. Available at: http://hcri.org/programs/change-it-back/. Accessed March 9, 2015.
71. Kremer LC, Mulder RL, Oeffinger KC, 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. Pediatr Blood Cancer. 2013; 60: 543-549.
72. St. Jude Children's Research Hospital. The Childhood Cancer Survivor Study (CCSS). Available at: https://ccss.stjude.org/data-and-analysis.html. Accessed March 23, 2015.
73. Smith AW, Bellizzi KM, Keegan TH, 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. J Clin Oncol. 2013; 31: 2136-2145.
74. Geue K, Sender A, Schmidt R, et al., Gender-specific quality of life after cancer in young adulthood: a comparison with the general population. Qual Life Res. 2014; 23: 1377-1386.
75. Cimprich B, Ronis DL, Martinez-Ramos G,. Age at diagnosis and quality of life in breast cancer survivors. Cancer Pract. 2002; 10: 85-93.
76. Dunn J, Ng SK, Breitbart W, et al., Health-related quality of life and life satisfaction in colorectal cancer survivors: trajectories of adjustment [serial online]. Health Qual Life Outcomes. 2013; 11: 46.
77. Hall AE, Boyes AW, Bowman J, Walsh RA, James EL, Girgis A,. Young adult cancer survivors' psychosocial well-being: a cross-sectional study assessing quality of life, unmet needs, and health behaviors. Support Care Cancer. 2012; 20: 1333-1341.
78. Tai E, Buchanan N, Townsend J, Fairley T, Moore A, Richardson LC,. Health status of adolescent and young adult cancer survivors. Cancer. 2012; 118: 4884-4891.
79. Seitz DC, Besier T, Debatin KM, et al., Posttraumatic stress, depression and anxiety among adult long-term survivors of cancer in adolescence. Eur J Cancer. 2010; 46: 1596-1606.
80. Dyson GJ, Thompson K, Palmer S, Thomas DM, Schofield P,. The relationship between unmet needs and distress amongst young people with cancer. Support Care Cancer. 2012; 20: 75-85.
81. Kwak M, Zebrack BJ, Meeske KA, et al., Prevalence and predictors of post-traumatic stress symptoms in adolescent and young adult cancer survivors: a 1-year follow-up study. Psychooncology. 2013; 22: 1798-1806.
82. Deyell RJ, Lorenzi M, Ma S, 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. Pediatr Blood Cancer. 2013; 60: 816-822.
83. Kirchhoff AC, Yi J, Wright J, Warner EL, Smith KR,. Marriage and divorce among young adult cancer survivors. J Cancer Surviv. 2012; 6: 441-450.
84. Bellizzi KM, Smith A, Schmidt S, et al., Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer. 2012; 118: 5155-5162.
85. Parsons HM, Harlan LC, Lynch CF, et al., Impact of cancer on work and education among adolescent and young adult cancer survivors. J Clin Oncol. 2012; 30: 2393-2400.
86. Smith AW, Parsons HM, Kent EE, et al., Unmet support service needs and health-related quality of life among adolescents and young adults with cancer: the AYA HOPE Study [serial online]. Front Oncol. 2013; 3: 75.
87. Engvall G, Cernvall M, Larsson G, von Essen L, Mattsson E,. Cancer during adolescence: negative and positive consequences reported three and four years after diagnosis [serial online]. PLoS One. 2011; 6: e29001.
88. Kuhlthau K, Luff D, Delahaye J, et al., Health-related quality of life of adolescent and young adult survivors of central nervous system tumors: identifying domains from a survivor perspective. J Pediatr Oncol Nurs. 2015; 32: 385-393.
89. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P,. The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer. 2002; 94: 2090-2106.
90. Varni JW, Limbers CA,. The PedsQL 4.0 Generic Core Scales Young Adult Version: feasibility, reliability and validity in a university student population. J Health Psychol. 2009; 14: 611-622.
91. Ewing JE, King MT, Smith NF,. 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. Qual Life Res. 2009; 18: 231-244.
92. Bhatia S, Jenney ME, Bogue MK, et al., The Minneapolis-Manchester Quality of Life instrument: reliability and validity of the Adolescent Form. J Clin Oncol. 2002; 20: 4692-4698.
93. Park CL, Wortmann JH, Hale AE, Cho D, Blank TO,. Assessing quality of life in young adult cancer survivors: development of the Survivorship-Related Quality of Life scale. Qual Life Res. 2014; 23: 2213-2224.
94. Clinton-McHarg T, Carey M, Sanson-Fisher R, D'Este C, Shakeshaft A,. 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) [serial online]. Health Qual Life Outcomes. 2012; 10: 13.
95. National Institutes of Health. PROMIS. Georgetown University: Validation of PROMIS in diverse cancer populations and supplement study: estimating cancer specific norms (grant nos. U01AR05797-01 and 3U01AR057971-02S1). Available at: http://www.nihpromis.org/about/GeorgetownUniversity. Accessed March 26, 2015.