AYA HOPE Publications

The seven SEER registries noted under Overview & Key Objectives (i.e., Los Angeles, Seattle-Puget Sound, Iowa, Louisiana, Detroit, Northern California, and Greater California) are responsible for collecting the medical record and survey data.

Survey data collection for the original study is complete. See Harlan et al., 2011 for a description of the study's methods. Data from the follow-up survey were collected in 2009 and 2010.

This study will inform the development of future studies to focus on care and outcomes in the AYA population.

References

Bellizzi KM, Smith A, Schmidt S, Keegan TH, Zebrack B, Lynch CF, Deapen D, Shnorhavorian M, Tompkins BJ, Simon M; Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) Study Collaborative Group. Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult. Cancer 2012 Oct 15;118(20):5155-62. [View Abstract]

DeRouen MC, Smith AW, Tao L, Bellizzi KM, Lynch CF, Parsons HM, Kent EE, Keegan TH; AYA HOPE Study Collaborative Group. Cancer-related information needs and cancer's impact on control over life influence health-related quality of life among adolescents and young adults with cancer. Psychooncology 2015 Sep;24(9):1104-15. [View Abstract]

Harlan LC, Lynch CF, Keegan TH, Hamilton AS, Wu XC, Kato I, West MM, Cress RD, Schwartz SM, Smith AW, Deapen D, Stringer SM, Potosky AL; AYA HOPE Study Collaborative Group. Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study. J Cancer Surviv 2011 Sep;5(3):305-14. [View Abstract]

Keegan TH, Lichtensztajn DY, Kato I, Kent EE, Wu XC, West MM, Hamilton AS, Zebrack B, Bellizzi KM, Smith AW; AYA HOPE Study Collaborative Group. Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv 2012 Sep;6(3):239-50. [View Abstract]

Keegan TH, Tao L, DeRouen MC, Wu XC, Prasad P, Lynch CF, Shnorhavorian M, Zebrack BJ, Chu R, Harlan LC, Smith AW, Parsons HM; AYA HOPE Study Collaborative Group. Medical care in adolescents and young adult cancer survivors: what are the biggest access-related barriers? J Cancer Surviv 2014 Jun;8(2):282-92. [View Abstract]

Kent EE, Sender LS, Morris RA, Grigsby TJ, Montoya MJ, Ziogas A, Anton-Culver H. Multilevel socioeconomic effects on quality of life in adolescent and young adult survivors of leukemia and lymphoma. Qual Life Res 2013 Aug;22(6):1339-51. [View Abstract]

Kent EE, Smith AW, Keegan TH, Lynch CF, Wu XC, Hamilton AS, Kato I, Schwartz SM, Harlan LC. Talking About Cancer and Meeting Peer Survivors: Social Information Needs of Adolescents and Young Adults Diagnosed with Cancer. J Adolesc Young Adult Oncol 2013 Jun;2(2):44-52. [View Abstract]

Parsons HM, Harlan LC, Lynch CF, Hamilton AS, Wu XC, Kato I, Schwartz SM, Smith AW, Keel G, Keegan TH. Impact of cancer on work and education among adolescent and young adult cancer survivors. J Clin Oncol 2012 Jul 1;30(19):2393-400. [View Abstract]

Parsons HM, Harlan LC, Schmidt S, Keegan TH, Lynch CF, Kent EE, Wu XC, Schwartz SM, Chu RL, Keel G, Smith AW; AYA HOPE Collaborative Group. Who Treats Adolescents and Young Adults with Cancer? A Report from the AYA HOPE Study. J Adolesc Young Adult Oncol 2015 Sep;4(3):141-50. doi: 10.1089/jayao.2014.0041. [View Abstract]

Parsons HM, Harlan LC, Schmidt S, Kent EE, Lynch CF, Smith AW, Keegan TH; AYA HOPE Collaborative. Young and uninsured: Insurance patterns of recently diagnosed adolescent and young adult cancer survivors in the AYA HOPE study. Cancer 2014 Aug 1;120(15):2352-60. [View Abstract]

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 Oct 20;29(30):4045-53. [View Abstract]

Shnorhavorian M, Harlan LC, Smith AW, Keegan TH, Lynch CF, Prasad PK, Cress RD, Wu XC, Hamilton AS, Parsons HM, Keel G, Charlesworth SE, Schwartz SM; AYA HOPE Study Collaborative Group. Fertility preservation knowledge, counseling, and actions among adolescent and young adult patients with cancer: A population-based study. Cancer 2015 Oct 1;121(19):3499-506. [View Abstract]

Smith AW, Bellizzi KM, Keegan TH, Zebrack B, Chen VW, Neale AV, Hamilton AS, Shnorhavorian M, Lynch CF. 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 Jun 10;31(17):2136-45. [View Abstract]

Smith, AW; Keegan, Theresa; Hamilton, Ann; Lynch, Charles; Wu, Xiao-Cheng; Schwartz, Stephen M.; Kato, Ikuko; Cress, Rosemary; Harlan, Linda; AYA HOPE Study Collaborative Group. Understanding care and outcomes in adolescents and young adults with cancer: A review of the AYA HOPE study Pediatric Blood and Cancer. 07 October 2018. [View Abstract]

Smith AW, Parsons HM, Kent EE, Bellizzi K, Zebrack BJ, Keel G, Lynch CF, Rubenstein MB, Keegan TH; AYA HOPE Study Collaborative Group. Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults with Cancer: The AYA HOPE Study. Front Oncol 2013 Apr 8;3:75. eCollection 2013. [View Abstract]

Wettergren L, Kent EE, Mitchell SA, Zebrack B, Lynch CF, Rubenstein MB, Keegan THM, Wu XC, Parsons HM, Smith AW; AYA HOPE Study Collaborative Group. Cancer negatively impacts on sexual function in adolescents and young adults: The AYA HOPE study. Psychooncology 2017 Oct;26(10):1632-1639. [View Abstract]

Wu XC, Prasad PK, Landry I, Harlan LC, Parsons HM, Lynch CF, Smith AW, Hamilton AS, Keegan TH; AYA HOPE Study Collaborative Group. Impact of the AYA HOPE Comorbidity Index on Assessing Health Care Service Needs and Health Status among Adolescents and Young Adults with Cancer. Cancer Epidemiol Biomarkers Prev 2015 Dec;24(12):1844-9. [View Abstract]

Zebrack B, Kent EE, Keegan TH, Kato I, Smith AW; AYA HOPE Study Collaborative Group. "Cancer sucks," and other ponderings by adolescent and young adult cancer survivors. J Psychosoc Oncol 2014;32(1):1-15. doi: 10.1080/07347332.2013.855959. [View Abstract]