Top

Published in:

31-01-2022 | Care

Current pediatric cancer survivorship practices: a report from the Children’s Oncology Group

Authors: K. E. Effinger, R. Haardörfer, J. Gilleland Marchak, C. Escoffery, W. Landier, A. Kommajosula, E. Hendershot, K. T. Sadak, D. Eshelman-Kent, K. Kinahan, D. R. Freyer, E. J. Chow, A. C. Mertens

Published in: Journal of Cancer Survivorship | Issue 4/2023

Abstract

Purpose

The purpose of this study is to describe current survivor services provided by COG institutions.

Methods

A 190-question online survey was distributed to 209 COG member institutions over a 5-month period in 2017. Descriptive statistics were used to describe survivor services and explore their changes between 2007 and 2017.

Results

Representatives from 153 (73%) institutions completed the survey. Of these, 96% of institutions reported that they provide pediatric cancer survivor care either in a specialized late effects program (75%) or a regular pediatric oncology clinic (24%). However, only 29.8% of institutions reported that > 75% of eligible patients were seen in a survivorship clinic. The most prevalent reported barriers to survivor care were lack of dedicated time (58%) and lack of funding for program development (41%). In 2017, 88% of institutions provided a treatment summary compared to 31% in 2007.

Conclusion

The majority of COG institutions have dedicated care for pediatric and young adult survivors of childhood cancer; however, at most institutions, < 75% of eligible patients access this care. Research into more efficient technology strategies is needed to ensure all survivors the opportunity to receive appropriate follow-up care.

Implications for Cancer Survivors

This survey provides a snapshot of the status of late effects services within COG institutions and provides information on residual gaps in services. Next steps should focus on the importance of attendance in a survivorship clinic on the physical health and psychosocial outcomes in cancer survivors.

Howlader N, Noone AM, Krapcho M, et al. SEER Cancer Statistics Review, 1975–2018. Bethesda, MD: National Cancer Institute. https://seer.cancer.gov/csr/1975_2018/, based on November 2020 SEER data submission, posted to the SEER website, April 2021.

Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS, Schwartz CL, Leisenring W, Robison LL. Childhood Cancer Survivor Study. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82. https://doi.org/10.1056/NEJMsa060185.CrossRefPubMed

Hudson MM, Ness KK, Gurney JG, Mulrooney DA, Chemaitilly W, Krull KR, Green DM, Armstrong GT, Nottage KA, Jones KE, Sklar CA, Srivastava DK, Robison LL. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA. 2013;309(22):2371–81. https://doi.org/10.1001/jama.2013.6296.Erratum.In:JAMA.2013Jul3;310(1):99.CrossRefPubMedPubMedCentral

Mertens AC, Liu Q, Neglia JP, Wasilewski K, Leisenring W, Armstrong GT, Robison LL, Yasui Y. Cause-specific late mortality among 5-year survivors of childhood cancer: the Childhood Cancer Survivor Study. J Natl Cancer Inst. 2008;100(19):1368–79. https://doi.org/10.1093/jnci/djn310.CrossRefPubMedPubMedCentral

Armstrong GT, Kawashima T, Leisenring W, Stratton K, Stovall M, Hudson MM, Sklar CA, Robison LL, Oeffinger KC. Aging and risk of severe, disabling, life-threatening, and fatal events in the childhood cancer survivor study. J Clin Oncol. 2014;32(12):1218–27. https://doi.org/10.1200/JCO.2013.51.1055.CrossRefPubMedPubMedCentral

Children’s Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. 2018. Available from: http://survivorshipguidelines.org/

Landier W, Bhatia S, Eshelman DA, Forte KJ, Sweeney T, Hester AL, Darling J, Armstrong FD, Blatt J, Constine LS, Freeman CR, Friedman DL, Green DM, Marina N, Meadows AT, Neglia JP, Oeffinger KC, Robison LL, Ruccione KS, Sklar CA, Hudson MM. Development of risk-based guidelines for pediatric cancer survivors: the Children’s Oncology Group Long-Term Follow-Up Guidelines from the Children’s Oncology Group Late Effects Committee and Nursing Discipline. J Clin Oncol. 2004;22(24):4979–90. https://doi.org/10.1200/JCO.2004.11.032.CrossRefPubMed

Institute of Medicine, National Research Council National Cancer Policy Board. Childhood cancer survivorship: improving care and quality of life. Washington (DC): National Academies Press, 2003.

Eshelman-Kent D, Kinahan KE, Hobbie W, Landier W, Teal S, Friedman D, Nagarajan R, Freyer DR. Cancer survivorship practices, services, and delivery: a report from the Children’s Oncology Group (COG) nursing discipline, adolescent/young adult, and late effects committees. J Cancer Surviv. 2011;5(4):345–57. https://doi.org/10.1007/s11764-011-0192-8.CrossRefPubMedPubMedCentral

10.

Ross JA, Severson RK, Pollock BH, Robison LL. Childhood cancer in the United States: a geographical analysis of cases from the pediatric cooperative clinical trials groups. Cancer. 1996;77:201–7. https://doi.org/10.1002/(SICI)1097-0142(19960101)77:1%3c201::AID-CNCR32%3e3.0.CO;2-7.Cancer.CrossRefPubMed

11.

Signorelli C, Wakefield CE, Fardell JE, Wallace W, Robertson EG, McLoone JK, Cohn RJ. The impact of long-term follow-up care for childhood cancer survivors: a systematic review. Crit Rev Oncol Hematol. 2017;114:131–8. https://doi.org/10.1016/j.critrevonc.2017.04.007.CrossRefPubMed

12.

Daly A, Williamson Lewis R, Vangile K, Wasilewski Masker K, Effinger KE, Meacham LR, Mertens AC. Survivor clinic attendance among pediatric- and adolescent-aged survivors of childhood cancer. J Cancer Surviv. 2019;13(1):56–65. https://doi.org/10.1007/s11764-018-0727-3.CrossRefPubMed

13.

Barakat LP, Schwartz LA, Szabo MM, Hussey HM, Bunin GR. Factors that contribute to post-treatment follow-up care for survivors of childhood cancer. J Cancer Surviv. 2012;6(2):155–62. https://doi.org/10.1007/s11764-011-0206-6.CrossRefPubMed

14.

Zheng DJ, Sint K, Mitchell HR, Kadan-Lottick NS. Patterns and predictors of survivorship clinic attendance in a population-based sample of pediatric and young adult childhood cancer survivors. J Cancer Surviv. 2016;10(3):505–13. https://doi.org/10.1007/s11764-015-0493-4.CrossRefPubMed

15.

Wallace WH, Blacklay A, Eiser C, Davies H, Hawkins M, Levitt GA, Jenney ME. Late Effects Committee of the United Kingdom Children’s Cancer Study Group (UKCCSG). Developing strategies for long term follow up of survivors of childhood cancer. BMJ. 2001;323(7307):271–4. https://doi.org/10.1136/bmj.323.7307.271.CrossRefPubMedPubMedCentral

16.

Eiser C, Absolom K, Greenfield D, Glaser A, Horne B, Waite H, Urquhart T, Wallace WH, Ross R, Davies H. Follow-up after childhood cancer: evaluation of a three-level model. Eur J Cancer. 2006;42(18):3186–90. https://doi.org/10.1016/j.ejca.2006.08.001.CrossRefPubMed

17.

Frobisher C, Glaser A, Levitt GA, Cutter DJ, Winter DL, Lancashire ER, Oeffinger KC, Guha J, Kelly J, Reulen RC, Hawkins MM. Risk stratification of childhood cancer survivors necessary for evidence-based clinical long-term follow-up. Br J Cancer. 2017;117(11):1723–31. https://doi.org/10.1038/bjc.2017.347.CrossRefPubMedPubMedCentral

18.

Shad A, Myers SN, Hennessy K. Late effects in cancer survivors: “the shared care model.” Curr Oncol Rep. 2012;14(2):182–90. https://doi.org/10.1007/s11912-012-0224-1.CrossRefPubMed

19.

Hall SJ, Samuel LM, Murchie P. Toward shared care for people with cancer: developing the model with patients and GPs. Fam Pract. 2011;28(5):554–64. https://doi.org/10.1093/fampra/cmr012.CrossRefPubMed

20.

Oeffinger KC, McCabe MS. Models for delivering survivorship care. J Clin Oncol. 2006;24(32):5117–24. https://doi.org/10.1200/JCO.2006.07.0474.CrossRefPubMed

21.

Hudson MM, Bhatia S, Casillas J, et al. Long-term follow-up care for childhood, adolescent, and young adult cancer survivors. Pediatrics. 2021;148(3):e2021053127.CrossRefPubMed

22.

Mobley EM, Moke DJ, Milam J, Ochoa CY, Stal J, Osazuwa N, Bolshakova M, Kemp J, Dinalo JE, Motala A, Baluyot D, Hempel S. Disparities and barriers to pediatric cancer survivorship care . Technical Brief No. 39. (Prepared by the Southern California Evidence-based Practice Center under Contract No. 75Q80120D00009.) Rockville, MD: Agency for Healthcare Research and Quality; March 2021. https://doi.org/10.23970/AHRQEPCTB39. Posted final reports are located on the Effective Health Care Program search page.

23.

Henderson TO, Hlubocky FJ, Wroblewski KE, Diller L, Daugherty CK. Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: a mailed survey of pediatric oncologists. J Clin Oncol. 2010;28(5):878–83. https://doi.org/10.1200/JCO.2009.25.6107.CrossRefPubMed

24.

Nathan PC, Schiffman JD, Huang S, Landier W, Bhatia S, Eshelman-Kent D, Wright J, Oeffinger KC, Hudson MM. Childhood cancer survivorship educational resources in North American pediatric hematology/oncology fellowship training programs: a survey study. Pediatr Blood Cancer. 2011;57(7):1186–90. https://doi.org/10.1002/pbc.23214.CrossRefPubMed

Title: Current pediatric cancer survivorship practices: a report from the Children’s Oncology Group
Authors: K. E. Effinger
R. Haardörfer
J. Gilleland Marchak
C. Escoffery
W. Landier
A. Kommajosula
E. Hendershot
K. T. Sadak
D. Eshelman-Kent
K. Kinahan
D. R. Freyer
E. J. Chow
A. C. Mertens
Publication date: 31-01-2022
Publisher: Springer US
Keywords: Care
Pediatric Cancer
Published in: Journal of Cancer Survivorship / Issue 4/2023
Print ISSN: 1932-2259
Electronic ISSN: 1932-2267
DOI: https://doi.org/10.1007/s11764-021-01157-w

Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras

Prof. Fabrice Barlesi

Developed by: Springer Medicine

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusion

Implications for Cancer Survivors

Please log in to get access to this content

Other articles of this Issue 4/2023

Peer mentoring for physical activity adoption and maintenance among breast cancer survivors: moderators of physical activity outcomes

Effects of exercise during and after neoadjuvant chemoradiation on symptom burden and quality of life in rectal cancer patients: a phase II randomized controlled trial

Quality of life of patients with rare cancer: a comparison with patients with colorectal cancer and the association with disease trajectory-related factors

Medical cannabis-related stigma: cancer survivors’ perspectives

Marijuana use among US adults with cancer: findings from the 2018–2019 Behavioral Risk Factor Surveillance System

Racial disparity in breast cancer survivorship: themes from a series of four national healthcare provider live virtual forums

Keynote webinar | Spotlight on antibody–drug conjugates in cancer