Skip to main content
SpringerLink
Log in

Experiences with the survivorship care plan in primary care providers of childhood cancer survivors: a mixed methods approach

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

Focusing on primary care providers (PCPs) of known childhood cancer survivors, we used a mixed methods approach to understand providers’ experiences with the survivorship care plan (SCP), as well as preferences and barriers regarding survivorship care.

Methods

The SCP was sent to 202 eligible PCPs of patients attending a regional survivorship clinic. The PCPs then completed quantitative postal surveys. Sixteen PCPs underwent an additional qualitative interview. Provider characteristics were examined as potential predictors of experiences, preferences, and barriers regarding survivorship care. Grounded theory was utilized to analyze the qualitative data.

Results

Respondents (n=134) included 55% pediatricians, 23% internists, 20% family practitioners, and 2% obstetricians/gynecologists. Only 8% of PCPs preferred to have primary responsibility for survivorship care; 46% favored a specialized clinic. A minority of PCPs reported that they felt “very comfortable” using the SCP to guide surveillance (31%) or deliver all survivorship care (3%). Endorsed barriers included lack of knowledge/training (74%), not recalling or understanding the contents of the SCP (69%), and uncertainty about who is responsible for providing care (58%). Two distinct themes emerged from the qualitative interviews: a preference not to be responsible for survivorship care, and uncertain utility of the SCP.

Conclusions

Our study suggests that PCPs of childhood cancer survivors generally felt uncomfortable using the SCP and providing survivorship care. Even with the availability of the SCP, the biggest barrier was lack of knowledge. Our data suggests that including PCPs in survivorship care will require additional educational opportunities and evaluation of more collaborative models of care delivery.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

References

  1. Ward E, DeSantis C, Robbins A, Kohler B, Jemal A (2014) Childhood and adolescent cancer statistics, 2014. CA Cancer J Clin 64(2):83–103

    Article  PubMed  Google Scholar 

  2. Mariotto A, Rowland J, Yabroff K et al (2009) Long-term survivors of childhood cancers in the United States. Cancer Epidemiol Biomark Prev 18:1033–1040

    Article  Google Scholar 

  3. Dickerman JD (2007) The late effects of childhood cancer therapy. Pediatrics 119(3):554–568

    Article  PubMed  Google Scholar 

  4. Armstrong GT, Stovall M, Robison LL (2010) Long-term effects of radiation exposure among adult survivors of childhood cancer: results from the Childhood Cancer Survivor Study. Radiat Res 174(6):840–850

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  5. Friedman DL, Whitton J, Leisenring W et al (2010) Subsequent neoplasms in 5-year survivors of childhood cancer: the Childhood Cancer Survivor Study. J Natl Cancer Inst 102(14):1083–1095

    Article  PubMed  PubMed Central  Google Scholar 

  6. Oeffinger KC, Mertens AC, Sklar CA et al (2006) Chronic health conditions in adult survivors of childhood cancer. N Engl J Med 355(15):1572–1582

    Article  CAS  PubMed  Google Scholar 

  7. Pemberger S, Jagsch R, Frey E et al (2005) Quality of life in long-term childhood cancer survivors and the relation of late effects and subjective well-being. Support Care Cancer 13(1):49–56

    Article  PubMed  Google Scholar 

  8. Blaauwbroek R, Stant AD, Groenier KH, Kamp WA, Meyboom B, Postma A (2007) Health-related quality of life and adverse late effects in adult (very) long-term childhood cancer survivors. Eur J Cancer 43(1):122–130

    Article  CAS  PubMed  Google Scholar 

  9. Bhatia S, Meadows AT (2006) Long-term follow-up of childhood cancer survivors: future directions for clinical care and research. Pediatr Blood Cancer 46(2):143–148

    Article  PubMed  Google Scholar 

  10. Oeffinger KC, McCabe MS (2006) Models for delivering survivorship care. J Clin Oncol 24(32):5117–5124

    Article  PubMed  Google Scholar 

  11. Aziz NM, Oeffinger KC, Brooks S, Turoff AJ (2006) Comprehensive long-term follow-up programs for pediatric cancer survivors. Cancer 107(4):841–848

    Article  PubMed  Google Scholar 

  12. Henderson TO, Hlubocky FJ, Wroblewski KE, Diller L, Daugherty CK (2010) Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: a mailed survey of pediatric oncologists. J Clin Oncol 28(5):878–883

    Article  PubMed  Google Scholar 

  13. Ishida Y, Takahashi M, Maru M et al (2012) Physician preferences and knowledge regarding the care of childhood cancer survivors in Japan: a mailed survey of the Japanese Society of Pediatric Oncology. Jpn J Clin Oncol 42(6):513–521

    Article  PubMed  Google Scholar 

  14. Earle CC, Neville BA (2004) Under use of necessary care among cancer survivors. Cancer 101(8):1712–1719

    Article  PubMed  Google Scholar 

  15. Bowers DC, Adhikari S, El-Khashab YM, Gargan L, Oeffinger KC (2009) Survey of long-term follow-up programs in the United States for survivors of childhood brain tumors. Pediatr Blood Cancer 53:1295–1301

    Article  PubMed  Google Scholar 

  16. Zheng DJ, Sint K, Mitchell HR, Kadan-Lottick NS. 2015 Patterns and predictors of survivorship clinic attendance in a population-based sample of pediatric and young adult childhood cancer survivors. J Cancer Surviv

  17. Oeffinger KC, Mertens AC, Hudson MM et al (2004) Health care of young adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Ann Fam Med 2(1):61–70

    Article  PubMed  PubMed Central  Google Scholar 

  18. Brothers BM, Easley A, Salani R, Andersen BL (2013) Do survivorship care plans impact patients’ evaluations of care? A randomized evaluation with gynecologic oncology patients. Oncologia 129(3):554–558

    Google Scholar 

  19. Nicolaije KA, Ezendam NP, Vos MC et al (2015) Impact of an automatically generated cancer survivorship care plan on patient-reported outcomes in routine clinical practice: longitudinal outcomes of a pragmatic, cluster randomized trial. J Clin Oncol 33(31):3550–3559

    Article  PubMed  Google Scholar 

  20. Mayer DK, Birken SA, Chen RC (2015) Avoiding implementation errors in cancer survivorship care plan effectiveness studies. J Clin Oncol 33(31):3528–3531

    Article  PubMed  Google Scholar 

  21. Blanch-Hartigan D, Forsythe LP, Alfano CM et al (2014) Provision and discussion of survivorship care plans among cancer survivors: results of a nationally representative survey of oncologists and primary care physicians. J Clin Oncol 32(15):1578–1585

    Article  PubMed  PubMed Central  Google Scholar 

  22. Potosky AL, Han PKJ, Rowland J et al (2011) Differences between primary care physicians’ and oncologist’ knowledge, attitudes, and practices regarding the care of cancer survivors. J Gen Intern Med 26(12):1403–1410

    Article  PubMed  PubMed Central  Google Scholar 

  23. Suh E, Daughtery CK, Wroblewski K et al (2014) General internists’ preferences and knowledge about the care of adult survivors of childhood cancer. Ann Intern Med 160(1):11–17

    Article  PubMed  PubMed Central  Google Scholar 

  24. Nathan PC, Daughtery CK, Wroblewski KE et al (2013) Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. J Cancer Surviv 7(3):275–282

    Article  PubMed  Google Scholar 

  25. Klemanski DL, Browning KK, Kue J (2016) Survivorship care plan preferences of cancer survivors and health care providers: a systematic review and quality appraisal of the evidence. J Cancer Surviv 10:71–86

    Article  PubMed  Google Scholar 

  26. Landier W, Bhatia S, Eshelman DA et al (2004) 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 22(24):4979–4990

    Article  PubMed  Google Scholar 

  27. Earle CC (2006) Failing to plan is planning to fail: improving the quality of care with survivorship care plans. J Clin Oncol 24(32):5112–5116

    Article  PubMed  Google Scholar 

  28. American Academy of Pediatrics (2009) Long-term follow-up care for pediatric cancer survivors. Pediatrics 123(3):906–915

    Article  Google Scholar 

  29. US Department of Health and Human Services, National Institute of Health, National Cancer Institute (2010) Common terminology criteria for adverse events v4.03. Bethesda, MD

  30. Patton MQ (1990) Qualitative evaluation and research methods (2nd ed). Sage Publications, Thousand Oaks

    Google Scholar 

  31. Creswell J (2007) Qualitative inquiry and research design: choosing among five approaches. Sage Publications, Thousand Oaks

    Google Scholar 

  32. Morse J (1995) The significance of saturation. Qual Health Res 5(2):147–149

    Article  Google Scholar 

  33. Glaser B, Strauss A (1967) The discovery of grounded theory: strategies for qualitative research. Transaction, Piscataway

    Google Scholar 

  34. Charmaz K (ed) (2009) Shifting the grounds: constructivist grounded theory methods. Left Coast Press, Walnut Creek

    Google Scholar 

  35. Salz T, Oeffinger KC, McCabe MS, Layne TM, Bach PB (2012) Survivorship care plans in research and practice. CA Cancer J Clin 62(2):101–117

    Article  PubMed  PubMed Central  Google Scholar 

  36. O’Brien MA, Grunfeld E, Sussman J, Porter G, Hammond Mobilio M (2015) Views of family physicians about survivorship care plans to provide breast cancer follow-up care: exploration of results from a randomized controlled trial. Curr Oncol 22(4):252–259

    Article  PubMed  PubMed Central  Google Scholar 

  37. Asch DA, Jedrziewski MK, Christakis NA (1997) Response rates to mailed surveys published in medical journals. J Clin Epidemiol 50(10):1129–1136

    Article  CAS  PubMed  Google Scholar 

  38. Halpern SD, Ubel PA, Berlin JA, Asch DA (2002) Randomized trial of $5 versus $10 monetary incentives, envelope size, and candy to increase physician response rates to mailed questionnaires. Med Care 40(9):834–839

    Article  PubMed  Google Scholar 

  39. VanGeest JB, Johnson TP, Welch VL (2007) Methodologies for improving response rates in surveys of physicians. Eval Health Prof 30(4):303–321

    Article  PubMed  Google Scholar 

  40. Onwuegbuzie AJ, Leech NLA (2007) Call for qualitative power analyses. Qual Quant 41(1):105–121

    Article  Google Scholar 

  41. Ezendem NPM, Nicolaije KAH, Kruitwagen RFPM et al (2014) Survivorship care plans to inform the primary care physician: results from the ROGY care pragmatic cluster randomized controlled trial. J Cancer Surviv 8(4):595–602

    Article  Google Scholar 

  42. McCabe MS, Partridge AH, Grunfeld E, Hudson MM (2013) Risk-based health care, the cancer survivor, the oncologist, and the primary care physician. Semin Oncol 40(6):804–812

    Article  PubMed  PubMed Central  Google Scholar 

  43. De Moor JS, Mariotto AB, Parry C et al (2013) Cancer survivors in the United States: prevalence across survivorship trajectory and implications for care. Cancer Epidem Biomar 22(4):561–570

    Article  Google Scholar 

  44. Meacham LR, Edwards PJ, Cherven BO et al (2012) Primary care providers as partners in long-term follow-up of pediatric cancer survivors. J Cancer Surviv 6(3):270–277

    Article  PubMed  Google Scholar 

  45. GW Cancer Institute (2016) GW School of Medicine and Health Sciences: Cancer Survivorship E-Learning Series for Primary Care Providers. Available at http://smhs.gwu.edu/gwci/ survivorship/ncsrc/elearning. Accessed Oct. 15, 2016

  46. Ferrell BR, Winn R (2006) Medical and nursing education and training opportunities to improve survivorship care. J Clin Oncol 24(32):5142–5148

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Lake Erie College of Osteopathic Medicine, 1858 W. Grandview Blvd, Erie, PA, 16509, USA

    Neel S. Iyer

  2. Department of Psychology, University of Miami, PO Box 248185-0751, Coral Gables, FL, 33124, USA

    Hannah-Rose Mitchell

  3. Department of Pediatrics, Section of Hematology/Oncology, Yale School of Medicine, 333 Cedar Street, LMP 2073, New Haven, CT, 06520, USA

    Daniel J. Zheng, Wilhelmenia L. Ross & Nina S. Kadan-Lottick

  4. Yale Cancer Center, PO Box 208028, New Haven, CT, 06520, USA

    Nina S. Kadan-Lottick

Authors
  1. Neel S. Iyer
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Hannah-Rose Mitchell
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Daniel J. Zheng
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Wilhelmenia L. Ross
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Nina S. Kadan-Lottick
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Nina S. Kadan-Lottick.

Ethics declarations

Conflict statement

This research was partially funded by a grant from the St. Baldrick’s Foundation to NSI. The authors report no conflicts of interest.

Electronic supplementary material

ESM 1

(PDF 129 kb).

ESM 2

(DOCX 18 kb).

ESM 3

(DOCX 18 kb).

ESM 4

(DOCX 18 kb).

ESM 5

(DOCX 19 kb).

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Iyer, N.S., Mitchell, HR., Zheng, D.J. et al. Experiences with the survivorship care plan in primary care providers of childhood cancer survivors: a mixed methods approach. Support Care Cancer 25, 1547–1555 (2017). https://doi.org/10.1007/s00520-016-3544-0

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-016-3544-0

Keywords

Search

Navigation