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Childhood cancer survivors’ primary care and follow-up experiences

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Abstract

Purpose

Although most childhood cancer survivors see a primary care provider (PCP), little is known about these encounters. We explored themes related to survivors’ (1) experiences with primary care, (2) communication with their PCPs about their cancer, and (3) their knowledge and impressions about follow-up care, including their interest in a survivor care plan (SCP).

Methods

From April to July 2012, we conducted in-depth, semi-structured telephone interviews with 53 adult survivors recruited from the Utah Cancer Surveillance, Epidemiology, and End Results (SEER) Registry. Participants were randomly selected from sex, age, and rural/urban strata and were younger than 21 years at the time of diagnosis. Participants were asked if they had a PCP and whether they discussed their cancer history with their provider and their interest in a SCP. Interviews were recorded, transcribed, and content-analyzed.

Results

The average age at interview was 39.1 years (SD = 11.2). Most survivors had a current PCP (83.0 %). Almost half were not worried about their health despite having had cancer. Detailed discussions about cancer history with PCPs were generally rare. Few survivors had a follow-up care plan, but over half thought a SCP could empower their medical decision making. However, one-third of the survivors were skeptical about the usefulness of a SCP and some were worried about health-care costs.

Conclusions

Childhood cancer survivors need better care coordination. Of concern is that many do not discuss their cancer history with their current PCPs and most have no SCP.

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Acknowledgments

Support for this research comes from the Huntsman Cancer Institute’s Cancer Control and Population Sciences Pilot Grant Program and the Cancer Center Support Grant and Primary Children’s Medical Foundation Career Development Award. We also acknowledge the use of shared resources supported by P30 CA042014 awarded to Huntsman Cancer Institute. Additional support for the Utah Cancer Registry provided by the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) Contract # HHSN261201000026C, the Utah State Department of Health, and the University of Utah.

Conflict of interest

The authors have no conflicts of interest to disclose. We have full control of the primary data and are willing to have Supportive Care in Cancer review the data if requested.

Author information

Authors and Affiliations

  1. Cancer Control and Population Sciences Research Program, Huntsman Cancer Institute, 2000 Circle of Hope, Salt Lake City, UT, 84112, USA

    Anne C. Kirchhoff, Echo L. Warner & Mark Fluchel

  2. Department of Pediatrics, University of Utah, Salt Lake City, UT, USA

    Anne C. Kirchhoff, Jennifer Wright & Mark Fluchel

  3. Center for Children’s Cancer Research, Huntsman Cancer Institute, Salt Lake City, UT, USA

    Anne C. Kirchhoff, Jennifer Wright & Mark Fluchel

  4. Department of Psychiatry, Yale University, Suite 901, 300 George St., New Haven, CT, 06511, USA

    Roberto E. Montenegro

  5. School of Public Health, Rutgers University, Trenton, NJ, USA

    Antoinette M. Stroup

  6. Cancer Institute of New Jersey, Room 5545, 195 Little Albany Street, New Brunswick, NJ, 08903-2681, USA

    Antoinette M. Stroup

  7. Mongan Institute for Health Policy and Department of Psychiatry, 9th Floor, Suite 90, 50 Staniford Street, Boston, MA, 02114, USA

    Elyse R. Park

  8. Massachusetts General Hospital/Harvard Medical School, Boston, MA, USA

    Elyse R. Park

  9. Department of Internal Medicine, University of New Mexico, Albuquerque, NM, USA

    Anita Y. Kinney

  10. University of New Mexico Cancer Center, MSC07-4025, 2325 Camino de Salud NE, Albuquerque, NM, 87131, USA

    Anita Y. Kinney

Authors
  1. Anne C. Kirchhoff
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  2. Roberto E. Montenegro
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  3. Echo L. Warner
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  4. Jennifer Wright
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  5. Mark Fluchel
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  6. Antoinette M. Stroup
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  7. Elyse R. Park
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  8. Anita Y. Kinney
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Corresponding author

Correspondence to Anne C. Kirchhoff.

Additional information

Implications for research/programs: Childhood cancer survivors require support, such as survivor care plans, to engage with primary care providers in risk-based medical care.

The paper on “Health Care Barriers for Rural and Urban Adult Survivors of Child and Adolescent Cancer” was previously presented at the AACR Conference on the Science of Cancer Health Disparities, San Diego, CA, in October 2012.

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Kirchhoff, A.C., Montenegro, R.E., Warner, E.L. et al. Childhood cancer survivors’ primary care and follow-up experiences. Support Care Cancer 22, 1629–1635 (2014). https://doi.org/10.1007/s00520-014-2130-6

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  • DOI: https://doi.org/10.1007/s00520-014-2130-6

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