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Childhood cancer survivor care: development of the Passport for Care

Abstract

Survivors of childhood cancer are at risk of long-term adverse effects and late effects of the disease and/or its treatment. In response to national recommendations to improve evidence-based follow-up care, a web-based support system for clinical decision making, the Passport for Care (PFC), was developed for use at the point of care to produce screening recommendations individualized to the survivor. To date, the PFC has been implemented in over half of the nearly 200 clinics affiliated with the Children's Oncology Group across the USA. Most clinician users report that the PFC has been integrated into clinic workflows, and that it fosters improved conversations with survivors about the potential late effects a survivor might experience and about the screening and/or behavioural interventions recommended to improve health status. Furthermore, clinicians using the PFC have indicated that they adhered more closely to follow-up care guidelines. Perspectives on the challenges encountered and lessons learned during the development and deployment of the PFC are reviewed and contrasted with other nationwide approaches to the provision of guidance on survivor follow-up care; furthermore, the implications for the care of childhood cancer survivors are discussed.

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Figure 1: Illustrative examples of PFC pages.
Figure 2: Growth in PFC enrolment.
Figure 3: Clinic respondent estimates of the percentage of cancer survivors for whom the PFC is used, based on a survey by the PFC developers (D. G. Poplack, unpublished data).
Figure 4: Breakdown of uses of the PFC.

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Acknowledgements

D.G.P., M.F., and M.E.H. acknowledge funding support from the Cancer Prevention and Research Institute of Texas (CPRIT; grants PP100090 and PP130070 to D.G.P., PP100090 and PP130070 to M.F., and PP100090 and PP130070 to M.E.H.), the Alex's Lemonade Stand Foundation, the Ronald McDonald House Charities (RMHC), and the Lance Armstrong Foundation, Young Texans Against Cancer, and SurvivorVision. The work of W.L. and M.M.H. is funded in part by grants from the NIH National Cancer Institute (NCI; U10 CA098543 to W.L. and U10 CA098543 to M.M.H.). In addition, the involvement of W.L. and M.M.H. in the Children's Oncology Group (COG) Long-Term Follow-Up Guidelines is partially supported by the NCI COG Chair's Grant (U10 CA098543; Principal Investigator: P. C. Adamson). The authors wish to acknowledge J. E. King at the Baylor College of Medicine in the Center for Collaborative and Interactive Technologies, who contributed to survey development and analysis, and some drafting of the manuscript, and Q. W. Smith, also at the Baylor College of Medicine in the Center for Collaborative and Interactive Technologies, who contributed to literature searches and summaries, as well as some drafting and editing.

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D.G.P., M.F., S.B. and M.E.H. made substantial contributions to researching data for the article. All authors contributed substantially to writing and review/editing of the manuscript before submission. D.G.P., M.F., and M.E.H. contributed to discussion of content.

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Correspondence to David G. Poplack.

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Supplementary Box 1

Examples of barriers to effective care for the late effects of childhood cancer (DOC 59 kb)

Supplementary Box 2

Lessons learned from implementing the PFC in oncology care settings serving childhood cancer survivors (DOC 42 kb)

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Poplack, D., Fordis, M., Landier, W. et al. Childhood cancer survivor care: development of the Passport for Care. Nat Rev Clin Oncol 11, 740–750 (2014). https://doi.org/10.1038/nrclinonc.2014.175

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