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Cancer Survivorship Program

What Happens Next? : Navigating Life After Cancer

The news about childhood cancer survivors is getting better and better. Through clinical trials, pediatric oncologists have discovered treatments that can now cure almost 80 percent of children who are diagnosed with cancer. Currently, there are more than 270, 000 pediatric cancer survivors living in the United States. These numbers will continue to grow as new techniques and therapies for cancer treatment become available. Here at The Children’s Hospital of Philadelphia, we understand that patients who have finished treatment and whose disease is not likely to recur require specialized care in a clinic that focuses specifically on the needs of survivors. The Cancer Survivorship Program at The Children’s Hospital of Philadelphia helps patients and families navigate life after cancer, including both the physical and emotional issues they may face.

Our history

In 1983, The Children's Hospital of Philadelphia started the first program to care for and track long-term survivors of childhood cancers. Since that time, a team of doctors, nurses and psychologists have provided expert care to survivors of childhood and adolescent cancer who are experiencing or may be at risk for late effects of cancer treatment. Our clinic now follows close to 500 patients per year.

The main goals of the Cancer Survivorship Program are:

  • Improve the health and well-being of childhood cancer survivors by promoting adherence to a schedule of follow-up appointments and routine screening tests
  • Educate patients, parents and healthcare professionals about the long-term effects of cancer treatment
  • Provide referrals to specialists as needed
  • Offer psychological counseling
  • Transition patients to adult care when ready

Publications

  1. Ginsberg, J.P., Rai, S.N., Carlson, C.A., Meadows, A.T., Hinds, P.S., Spearing, E.M., Zhang, L., Callaway, L., Neel, M.D., Rao, B.N., Marchese, V.G. Functional Outcomes: A comparative analysis of adolescents and young adults with lower-extremity sarcoma. Pediatr Blood Cancer. 49: 964-969, 2007.
  2. Ginsberg, J.P., Ogle S.K., Tuchman L.K., Carlson C.A., Reilly M.M., Hobbie W.L., Rourke M., Zhao H.T., Meadows A.T. Sperm Banking for Adolescent and Young Adult Cancer Patients: Sperm Quality, Patient, and Parent Perspectives. Pediatr Blood Cancer. 50: 594-598, 2008. Carlson, C.A., Hobbie, W.L., Brogna, M., Ginsberg J.P. A Multidisciplinary Model of Care for Childhood Cancer Survivors with Complex Medical Needs. J Pediatr Oncol Nurs. 25: 7-13, 2008.
  3. Ogle, S.K, Hobbie, W.L., Carlson, C.A., Meadows, A.T., Reilly, M., Ginsberg, J.P. Sperm Banking for Adolescents . J Pediatr Oncol Nurs. 25: 97-101, 2008.
  4. Hobbie, W.L., Moshang, T., Carlson, C.A., Goldmuntz, E., Sacks, N., Goldfarb, S.B., Grupp, S.A., Ginsberg, J.P. Late effects in survivors of tandem peripheral blood stem cell transplant for high-risk neuroblastoma. Pediatr Blood Cancer. 51: 679-683, 2008.
  5. Ness, K.K., Hudson, M.M., Ginsberg, J.P., Nagarajan, R., Kaste, S.C., Marina, N., Whitton, J., Robison, L.L., Gurney, J.G. Physical Performance Limitations in the Childhood Cancer Survivor Study Cohort. J Clin Oncol. 10: 2382-2389, 2009.
  6. Ginsberg, J.P., Aplenc, R., McDouough, J., Bethel, J., Doyle, J., Weiner, D.J. Pre-Transplant Lung Function is Predictive of Survival Following Pediatric Bone Marrow Transplantation. Pediatr Blood Cancer. 54: 454-460, 2009.
  7. Wu, X., Schmidt, J.A., Avarbock, M.R., Tobias, J.W., Carlson, C.A., Kolon, T.F., Ginsberg, J.P. and Brinster, R.L. Prepubertal Human Spermatogonia and Mouse Gonocytes Share Conserved Gene Expression of Germline Stem Cell Regulatory Molecules. Proc Natl Acad Sci. 106: 21672-21677, 2009.
  8. Fish, J.D. and Ginsberg, J.P.: Health Insurance for Survivors of Childhood Cancer: A pre-existing problem. Pediatr Blood Cancer 53:928-930, 2009. Ginsberg, J.P., Kolon, T., Carlson, C.A., Lin, K., Hobbie, W.L., Wigo, E., Wu, X., Brinster, R.L. An Experimental Protocol for Fertility Preservation in Prepubertal Boys Recently Diagnosed with Cancer. Hum Reprod. 25: 37-41, 2010.
  9. Kazak, A.E., Derosa, B.W., Schwartz, L., Hobbie, W.L., Carlson, C.A., Ittenbach, R., Mao, J.J., Ginsberg, J.P. Psychological outcomes and health beliefs in adolescent and young adult (AYA) survivors of childhood cancer and controls: Age at diagnosis, treatment intensity and health problems. J Clin Oncol. 28: 2002-2007, 2010.
  10. Schwartz, L. A., Mao, J. J., Werba, B. E., Ginsberg, J. P., Hobbie, W. L., Carlson, C. A., Mougianis, I. D., Ogle, S. K., & Kazak, A. E. Self-reported health problems of young adults in clinical settings: Survivors of childhood cancer and healthy controls. J Am Board Fam Pract. 23: 306-314, 2010.
  11. Hobbie, W., Ogle, S., Reilly, M., Ginsberg, J.P. Deatrick, J.: Identifying the Educational Needs of Parents at the Completion of their Child’s Cancer Therapy.J Pediatr Oncol Nurs. 27:190-195, 2010.
  12. Sepe, D., Ginsberg, J.P., Balis, F. Dexrazoxane as a Cardioprotectant in Children Receiving Anthracyclines. Oncologist 15:1220-1226, 2010.
  13. Ginsberg, J.P., Goodman, P., Leisenring, W., Ness, K.K., Meyers, P.A., Wolden, S.L., Smith, S.M., Stovall, M., Hammond, S., Robison, L.L., Oeffinger, K.C. Long-term follow-up among five-year survivors of childhood Ewing Sarcoma : A report from the Childhood Cancer Survivor Study. J Natl Cancer Inst. 102:1272-1283, 2010.
  14. Hobbie, W.L., Mostoufi-Moab, S., Carlson, C.A., Gruccio, D., Ginsberg, J.P. Prevalence of advanced bone age in a cohort of patients who received cis-retinoic acid for high-risk neuroblastoma. Pediatr Blood and Cancer. 56: 474-476, 2011.
  15. DeRosa, B.W., Kazak, A.E., Doshi, K., Schwartz, L.A., Ginsberg, J.P., Mao, J.J., Straton, J., Hobbie, W., Rourke, M.T., Carlson, C.A., Ittenbach, R.F. Development and validation of the Health Competence Beliefs Inventory in young adults with and without a history of childhood cancer. Ann Behav Med. 41: 48-58, 2011.
  16. Montgomery, M., Huang, S., Cox, C.L., Leisenring, W.M., Oeffinger, K.C., Hudson, M.M., Ginsberg, J.P., Armstrong, G.T., Robison, L.L., Ness, K.K. Physical therapy and chiropractic use among childhood cancer survivors with chronic disease: impact on health-related quality of life. J Cancer Surviv. 5: 73-81, 2011.
  17. Doshi, K., Kazak, A.E., DeRosa, B.W., Schwartz, L.A., Hobbie, W.L., Ginsberg, J.P., Ittenbach, R.F. Measuring health-related beliefs of mothers of adolescent and young adult childhood cancer survivors. Fam Syst Health. 29:55-63, 2011.
  18. Ginsberg, J.P. New Advances in Fertility Preservation for Pediatric Cancer Patients. Curr Opin Pediatr 23: 9-13, 2011.
  19. Ginsberg, J.P. The effect of cancer therapy on fertility and potential fertility preservation options for pediatric patients. Eur J Pediatr 170: 703-708, 2011.
  20. Schwartz, L.A., Tuchman, L.K., Hobbie, W.L., Ginsberg, J.P. A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev. 37:883-95, 2011.
  21. Gracia, C.R., Sammel, M., Freeman E., Prewitt, M., Vance, A., Braam, S., Carlson, C.A., Ginsberg, J.P. Ovarian reserve after cancer: Can we estimate the reproductive window? Fertil Steril. 2012 Jan;97(1):134-140.
  22. Genes Blanco, J.G., Sun, C., Landier, W., Lu Chen, L., Esparaza-Duran, D., Friedman D.L., Ginsberg, J.P., Keller F., Melissa M Hudson, M.M., Neglia, J.P., Oeffinger, K., Ritchey, A.K., Villaluna, D., Relling, M.V., and Bhatia, S. Anthracycline-associated Cardiomyopathy after Childhood Cancer: Role of Polymorphisms in the Carbonyl-Reductase. J Clin Oncol. 2011 Nov 28. [Epub ahead of print].
  23. Schwartz, L.A., Kazak, A.E., DeRosa, B.W., Hocking, M.C., Hobbie, W.L., Ginsberg, J.P. The Role of Beliefs in the Relationship Between Health Problems and Posttraumatic Stress in Adolescent and Young Adult Cancer Survivors. J Clin Psychol Med Settings. 2011 Oct 1. [Epub ahead of print]
  24. Mostoufi-Moab, S., Ginsberg, J.P., Bunin, N., Zemel, B.S., Shults, J., Thayu, M., Leonard, M.B. Body composition abnormalities in long-term survivors of pediatric hematopoietic stem cell transplantation. J Pediatr. 2012 Jan;160(1):122-8. PMID: 21839468.
  25. Mostoufi-Moab, S., Ginsberg, J.P., Bunin, N., Zemel, B.S., Shults, J., Leonard, M.B. Bone density and structure in long-term survivors of pediatric allogeneic hematopoietic stem cell transplantation. J Bone Miner Res. 2011 Dec 20. [Epub ahead of print]. PMID: 22189761

Research

Research on the Late Effects of Childhood Cancer

The great strides that have been made in treating pediatric cancer in the past four decades are directly related to the commitment of pediatric oncology to organized clinical research. The need for research continues.

The Children’s Hospital of Philadelphia is at the forefront of studying the late effects of cancer therapy. Investigators at The Children’s Hospital of Philadelphia have studied and reported on many medical and psychological late effects in survivors of childhood cancer. Some studies may help us change the way we treat future patients to minimize the long-term effects of therapy. Other studies may provide information about a specific late complication that certain survivors are experiencing and enable clinicians to provide better follow-up care and treatment.

Current research efforts by the Cancer Survivorship Program include a diverse group of investigator initiated and cooperative group studies.

Ongoing research studies include:

Investigator Initiated

  • Ovarian reserve in female cancer survivors as compared to healthy age matched controls
  • The Effects of Cancer Treatments on Ovarian Function: a longitudinal study by the Oncofertility Consortium (ORACLE)
  • Psychological outcomes in childhood cancer survivors
  • Assessing Testicular Function in Survivors of Childhood Brain Tumors
  • Mothers as Caregivers for Survivors of Childhood Brain Tumors
  • Fertility Preservation in Prepubertal Boys: An Experimental Approach
  • Addressing the Challenge of Transition to Adult-Oriented Care for Childhood Cancer Survivors: A Pilot Study of a New Assessment Tool to Assess Transition Readiness
  • Development of a Normative Sample for the Functional Mobility Assessment
  • Ovarian Tissue Freezing for patients at Risk for Infertility and Premature Ovarian Failure
  • Structural Bone Deficits in Survivors of Childhood Leukemia after BMT
  • Outcomes in Reproduction for Childhood and Adolescent Survivors (ORCAS-Cisplatin): A Multi-Site Pilot Study
  • Cardiac biomarkers during anthracycline therapy and the risk of cardiotoxicity
  • Evaluation of Iron Overload in Pediatric Oncology and Hematopoietic Stem Cell Transplant Patients

Children’s Oncology Group Studies

  • Late Effects
    • ALTE03N1: Key Adverse Events after Childhood Cancer
    • Cancer Control
      • AALL03N1: Understanding the Role of Adherence and Ethnic Differences in Survival After Childhood ALL
      • AALL06N1: A Study of Neurocognitive Function in Children Treated for ALL

    Childhood Cancer Survivor Study (CCSS)

    In 1996, Children’s Hospital became one of 27 sites across the United States and Canada to participate in the Childhood Cancer Survivor Study (CCSS), which was established with funding from the National Cancer Institute. The initial cohort for CCSS involved over 14,000 childhood cancer survivors diagnosed between 1970 and 1986; more than 800 of these survivors were Children's Hospital patients. Data collected as part of this study provides an excellent resource to help investigate current and future questions regarding consequences of therapy, interventions, and quality of life among childhood cancer survivors. Children’s Hospital is now participating in the expansion of the cohort for CCSS to include survivors diagnosed between 1987 and 1999.

Cancer Survivorship Program

What Happens Next? : Navigating Life After Cancer

The news about childhood cancer survivors is getting better and better. Through clinical trials, pediatric oncologists have discovered treatments that can now cure almost 80 percent of children who are diagnosed with cancer. Currently, there are more than 270, 000 pediatric cancer survivors living in the United States. These numbers will continue to grow as new techniques and therapies for cancer treatment become available. Here at The Children’s Hospital of Philadelphia, we understand that patients who have finished treatment and whose disease is not likely to recur require specialized care in a clinic that focuses specifically on the needs of survivors. The Cancer Survivorship Program at The Children’s Hospital of Philadelphia helps patients and families navigate life after cancer, including both the physical and emotional issues they may face.

Our history

In 1983, The Children's Hospital of Philadelphia started the first program to care for and track long-term survivors of childhood cancers. Since that time, a team of doctors, nurses and psychologists have provided expert care to survivors of childhood and adolescent cancer who are experiencing or may be at risk for late effects of cancer treatment. Our clinic now follows close to 500 patients per year.

The main goals of the Cancer Survivorship Program are:

  • Improve the health and well-being of childhood cancer survivors by promoting adherence to a schedule of follow-up appointments and routine screening tests
  • Educate patients, parents and healthcare professionals about the long-term effects of cancer treatment
  • Provide referrals to specialists as needed
  • Offer psychological counseling
  • Transition patients to adult care when ready