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Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care

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Abstract

Purpose

Young adult survivors (YAS) of childhood cancer require annual adult-focused, cancer-related follow-up given their risk for late effects of treatment. This study describes perception of and engagement with adult-focused, cancer-related follow-up care and general health care among YAS formally transferred to adult care from pediatric survivorship care.

Methods

YAS transferred from pediatric survivorship care in the prior 1–5 years completed measures indicating engagement with cancer-related follow-up care, other health care utilization, content of communication by providers, quality of cancer-related care, and satisfaction with health care in the prior year.

Results

Eighty YAS (M age = 27.7 years, M time since diagnosis = 10.4 years) participated. Just over half of YAS surveyed (n = 44, 55 %) endorsed continuing cancer-related follow-up care since transfer. Those with cancer-related follow-up endorsed seeing subspecialty survivorship providers (n = 16, 44 %) and primary care providers (n = 22, 50 %) or utilizing a shared care model (n = 6, 14 %). About a third of YAS endorsed seeing subspecialists (n = 29, 36 %) or using other support services (n = 22, 27 %). YAS-perceived content of communication varied significantly depending on care model with less cancer-related content being discussed by primary care providers, though perceived quality of cancer-related care and satisfaction with health care was generally favorable.

Conclusions

YAS report less than optimal engagement in cancer-related follow-up care and communication in their health care encounters.

Implications for Cancer Survivors

Young adult survivors should receive anticipatory guidance about expectations for delivery and content of adult-focused cancer-related follow-up care.

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Notes

  1. Beck Hopelessness Scale, The Post-Traumatic Stress Disorder Checklist-Civilian Version short form, the Family Assessment Device General Functioning Scale, NIH Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health short form, and transition readiness assessments (Transition Readiness Assessment Questionnaire and Transition Readiness Inventory)

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Acknowledgments

This work was supported by the St. Baldrick’s Foundation Supportive Care Grant (PI: Schwartz).

Conflict of interest

The authors declare that they have no competing interests.

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Authors and Affiliations

  1. The Children’s Hospital of Philadelphia, CTRB 3-016, 3501 Civic Center Blvd, Philadelphia, PA, 19104, USA

    Dava Szalda, Lisa Pierce, Wendy Hobbie, Jill P. Ginsberg, Lauren Brumley, Monika Wasik, Yimei Li & Lisa A. Schwartz

  2. University of Pennsylvania, Philadelphia, PA, USA

    Dava Szalda, Lisa Pierce, Wendy Hobbie, Jill P. Ginsberg, Lauren Brumley, Monika Wasik, Yimei Li & Lisa A. Schwartz

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  1. Dava Szalda
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Correspondence to Dava Szalda.

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Szalda, D., Pierce, L., Hobbie, W. et al. Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care. J Cancer Surviv 10, 342–350 (2016). https://doi.org/10.1007/s11764-015-0480-9

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  • DOI: https://doi.org/10.1007/s11764-015-0480-9

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