Resources and information for parents of children with cancer . . . by parents of children with cancer.

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The Problems With Teen and Young Adult Cancer Care

Only one-third of teen cancer patients receive their care at pediatric oncology centers, and fewer teens are enrolled in clinical trials. This is sometimes referred to as the teen gap in cancer care.

The Spring 2005 issue of the ACCO/Candlelighters Newsletter has an excellent article on this topic entitled "Age Matters: The Problems with Teen Cancer Care", by Karen Albritton, MD. You can download a PDF version of this newsletter from the page below:

In the same issue are two other articles of interest to teens, From Behind a Cancer Teen's Eyes and Tips for Teens.

2014: The Young Adult Program at Dana-Farber is part of an international initiative to recognize and address the unique circumstances related to lifestyle, work, school, family life, and emotional development that young adults face when living with cancer.

Cancer's Orphan Generation: Medical experts are zeroing in on how to increase the survival rates of teens and young adults. By Katherine Hobson in a lay article on the US News and World Report health site.

SIOP Symposium on Adolescent and Young Adult Oncology. Several articles in this special issue of Pediatric Blood and Cancer, including:

Acute Lymphoblastic Leukemia in Adolescents and Young Adults. Burke P.W. and Douer D. Acta Haematol 2014;132:264-273. Abstract. "The outcome of AYAs aged 15-21 years treated by more contemporary pediatric protocols is similar to that of younger children but is inferior when using adult regimens."

Sarcoma Alliance page for special issues of teens and sarcomas.

Acute lymphoblastic leukemia in adolescents and young adults – from genomics to the clinics. Kenderian SS, Litzow MR, Clinical Oncology in Adolescents and Young Adults, 09/13/2013. Full text and video.

Children's Oncology Group's 2013 blueprint for research: Adolescent and young adult oncology. David R. Freyer et al., Pediatric Blood & Cancer, epub 19 DEC 2012. Abstract.

Adolescents with acute lymphoblastic leukemia treated at pediatric versus adult hospitals. Pole JD et al., Ann Oncol, epub 2012 Oct 28. Abstract. "Most AYA patients treated at adult centers received pediatric protocols in the recent periods. ConclusionsUsing population-based data, AYA ALL patients had similar outcomes whether treated at a pediatric or an adult center. Early introduction of aggressive treatment protocols in adult centers may have negated differences in outcomes among AYA patients by site of care."

Adolescents and young adults with acute lymphoblastic leukemia have a better outcome when treated with pediatric-inspired regimens: Systematic review and meta-analysis. Ron Ram et al., American Journal of Hematology, epub 3 MAR 2012. Abstract.

Perspectives on quality and content of information on the internet for adolescents with cancer. Jennifer N. Stinson et al., Pediatric Blood & Cancer, published online: 15 FEB 2011. Abstract. "Given the paucity of high quality Internet health information at an appropriate reading level for adolescents with cancer there is a critical need for health care professionals to develop Internet programs to meet their unique needs."

Pediatric oncologists' attitudes towards involving adolescents in decision-making concerning research participation. Martine C. de Vries et al., Pediatric Blood & Cancer, Volume 55, Issue 1, 2010, pp. 123-128. Abstract. "Clinicians justify not involving adolescents in research discussions by referring to best interest arguments (adolescents' incompetence, proxy consent, and investigator integrity), although this is not in line with legal regulations and ethical guidelines."

Psychological referral and consultation for adolescents and young adults with cancer treated at pediatric oncology unit. Carlo Alfredo Clerici et al. Pediatr Blood Cancer 2008;51:105-109, 2008. Abstract.

Young adult oncology: the patients and their survival challenges. Archie Bleyer. CA Cancer J Clin. 2007 Jul-Aug;57(4):242-55. PubMed abstract. (Free full text available through this link.)

MD Anderson Adolescent and Young Adult Program MD Anderson is the only facillity that I am aware of that has a special program for this age group of patients. According to the information on the web page, the program offers more than simply social support.

Delays in cancer diagnosis in underinsured young adults and older adolescents. Martin, S., et al. The Oncologist, Vol. 12, No. 7, 816-824, July 2007. Full text.

Adolescents with acute lymphoblastic leukaemia: Outcome on UK national paediatric (ALL97) and adult (UKALLXII/E2993) trials. Ramya Ramanujachar, Sue Richards, Ian Hann, Anthony Goldstone, Christopher Mitchell, Ajay Vora, Jacob Rowe, David Webb. Pediatric Blood & Cancer, Volume 48, Issue 3 , Pages 254 - 261, Published Online: 18 Jan 2006. Abstract.

Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer - Report of the Adolescent and Young Adult Oncology Progress Review Group. From U.S. Department of Health and Human Services, NIH, NCI, LIVESTRONGTM Young Adult Alliance. PDF file.

Adolescents with acute lymphoblastic leukaemia: Emerging from the shadow of paediatric and adult treatment protocols. Ramanujachar R, Richards S, Hann I, Webb D. Pediatr Blood Cancer. 2006 Feb 8; [Epub ahead of print] PubMed abstract.

Adolescents with acute lymphoblastic leukaemia: Outcome on UK national paediatric (ALL97) and adult (UKALLXII/E2993) trials. Ramanujachar R, Richards S, Hann I, Goldstone A, Mitchell C, Vora A, Rowe J, Webb D. Pediatr Blood Cancer. 2006 Jan 1. Abstract.

The treatment of adolescents and young adults with acute lymphoblastic leukemia. DJ Deangelo. Hematology, January 1, 2005; 123-30. MedLine Abstract.

The adolescent and young adult gap in cancer care and outcome. Bleyer A. Current Problems in Pediatric and Adolescent Health Care - May 2005 (Vol. 35, Issue 5, Pages 182-217). This is a review article; this summary plus link may or may not work for you. I do have a pdf of this article.

Cancer Survival Gap: Progress Stalls for Young Adults. Amy Marcus, Wall Street Journal, July 5, 2005, Page D1. New Programs, Clinical Trials Target Patients 15 to 40 in Effort to Improve Recovery Rates. Available online to subscribers.

Juvenile cancer: improving care for adolescents and young adults within the frame of medical oncology. G. Pentheroudakis and N. Pavlidis. Annals of Oncology 2005 16(2):181-188. Review article. Abstract.

Teen cancers on the rise, experts say. Viruses, passive smoking, lifestyle may play a part. But while survival rates for children and adults with the disease have improved in recent decades, they have remained unchanged for adolescents and young adults. “'We’ve orphaned this particular age group,' Professor Archie Bleyer, of the University of Texas MD Anderson Cancer Centre in Houston, told the Third International Conference on Adolescent Cancer. 'Young people and older adolescents have been left behind.'" (2004 MSNBC online article.)

Teenagers Not Told of Cancer Treatment Risks-Study London May 10, 2004 (Reuters)

European Journal of Cancer - December 2003 (Vol. 39, Issue 18). Several articles:

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These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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