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Thus, 10 years ago, the National Cancer Institute supported the fielding of the Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) study to address this gap. We recruited individuals diagnosed at ages 15 to 39 with germ cell, Hodgkin and non\u2010Hodgkin lymphoma, acute lymphoblastic leukemia, and sarcoma from Surveillance, Epidemiology, and End Results cancer registries into the first multicenter population\u2010based study of medical care, physical, and mental health outcomes for AYAs with cancer in the United States. This review of the 17 published manuscripts showed low awareness of clinical trials and substantial impact of cancer on financial burden, education and work, relationships and family planning, and physical and mental health. It highlights the feasibility of a longitudinal population\u2010based study and key lessons learned for research on AYAs with cancer in and beyond the United States.<\/jats:p>","DOI":"10.1002\/pbc.27486","type":"journal-article","created":{"date-parts":[[2018,10,7]],"date-time":"2018-10-07T22:24:04Z","timestamp":1538951044000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":144,"title":["Understanding care and outcomes in adolescents and young adults with cancer: A review of the AYA HOPE study"],"prefix":"10.1002","volume":"66","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9674-5717","authenticated-orcid":false,"given":"Ashley Wilder","family":"Smith","sequence":"first","affiliation":[{"name":"Outcomes Research Branch Healthcare Delivery Research Program Division of Cancer Control and Population Science National Cancer Institute  Rockville Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Theresa","family":"Keegan","sequence":"additional","affiliation":[{"name":"UC Davis Comprehensive Cancer Center  Sacramento California"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5898-2308","authenticated-orcid":false,"given":"Ann","family":"Hamilton","sequence":"additional","affiliation":[{"name":"Keck School of Medicine of USC  Los Angeles California"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charles","family":"Lynch","sequence":"additional","affiliation":[{"name":"University of Iowa  Iowa City Iowa"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Xiao\u2010Cheng","family":"Wu","sequence":"additional","affiliation":[{"name":"LSU Health Sciences Center School of Public Health  New Orleans Louisiana"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephen M.","family":"Schwartz","sequence":"additional","affiliation":[{"name":"Division of Public Health Sciences Fred Hutchinson Cancer Research Center  Seattle Washington"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ikuko","family":"Kato","sequence":"additional","affiliation":[{"name":"Wayne State University  Detroit Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosemary","family":"Cress","sequence":"additional","affiliation":[{"name":"Cancer Registry of Greater California  Sacramento California"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Linda","family":"Harlan","sequence":"additional","affiliation":[{"name":"Special Volunteer National Cancer Institute  Rockville Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"AYA HOPE Study Collaborative Group","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2018,10,7]]},"reference":[{"key":"e_1_2_11_2_1","unstructured":"Adolescent and Young Adult Oncology Progress Review Group.Closing the gap: research and care imperatives for adolescents and young adults with cancer(NIH Publication No. 06\u20136067). 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