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After Childhood Cancer: a Qualitative Study of Family Physician, Parent/Guardian, and Survivor Information Needs and Perspectives on Long-Term Follow-up and Survivorship Care Plans

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Abstract

Despite support for the provision of a survivorship care plan (SCP) to every cancer survivor, there is a lack of understanding of the needs and preferences of key stakeholders. We examined perspectives of a novel personalized SCP for childhood cancer survivors (CCS), their family, and family physicians (FP). We conducted semi-structured telephone interviews with a purposefully selected sample of CCS, parents/guardians, and FPs. Data included responses to stakeholder cancer care information needs, concerns with or gaps in communication, the perceived role of the FP in the long-term management of CCS care, utility of the SCP, preferred format, and suggestions for improvement. A deductive content analysis was conducted. Twenty-four participants including 8 CCS, 10 parents/guardians, and 6 FPs completed an interview. Four main and several sub-categories emerged. Core categories were coded as (1) informative reference, (2) coordination of follow-up, (3) barriers to follow-up care, and (4) suggestions for improvement and future implementation. The majority of participants preferred an electronic- or web-based format. Overall, the SCP was seen as an informative and concise resource. The SCP was thought to be a valuable tool to foster communication and empower CCSs to become more fully engaged in their own cancer-related health care. FPs viewed the SCP as a useful resource to facilitate and guide the long-term management of the CCS. In addition to the treatment summary, a comprehensive follow-up timeline, personalized lifestyle information, and details on how to access additional psychosocial support were highlighted as important components.

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References

  1. Gupta S, Howard SC, Hunger SP, Antillon FG, Metzger ML, Israels T, Harif M, Rodriguez-Galindo C (2015) Treating childhood cancer in low- and middle-income countries. In: Gelband H, Jha P, Sankaranarayanan R, Horton S (eds) Cancer: disease control priorities, third edition (Volume 3), International Bank for Reconstruction and Development/The World Bank, Washington (DC)

  2. National Cancer Institute (2018) Late effects of treatment for childhood cancer (PDQ(R)): health professional version. https://www.cancer.gov/types/childhood-cancers/late-effects-hp-pdq. Accessed February 13, 2018

  3. Phillips SM, Padgett LS, Leisenring WM, Stratton KK, Bishop K, Krull KR, Alfano CM, Gibson TM, de Moor JS, Hartigan DB, Armstrong GT, Robison LL, Rowland JH, Oeffinger KC, Mariotto AB (2015) Survivors of childhood cancer in the United States: prevalence and burden of morbidity. Cancer Epidemiol Biomark Prev 24:653–663

    Article  Google Scholar 

  4. Bhakta N, Liu Q, Ness KK, Baassiri M, Eissa H, Yeo F, Chemaitilly W, Ehrhardt MJ, Bass J, Bishop MW, Shelton K, Lu L, Huang S, Li Z, Caron E, Lanctot J, Howell C, Folse T, Joshi V, Green DM, Mulrooney DA, Armstrong GT, Krull KR, Brinkman TM, Khan RB, Srivastava DK, Hudson MM, Yasui Y, Robison LL (2017) The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (SJLIFE). Lancet 390:2569–2582

    Article  PubMed  PubMed Central  Google Scholar 

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

    Article  PubMed  Google Scholar 

  6. Institute of Medicine and National Research Council (2006) From cancer patient to cancer survivor: lost in transition. The National Academies Press, Washington, DC

  7. Casillas J, Oeffinger KC, Hudson MM, Greenberg ML, Yeazel MW, Ness KK, Henderson TO, Robison LL, Armstrong GT, Liu Q, Leisenring W, Yasui Y, Nathan PC (2015) Identifying predictors of longitudinal decline in the level of medical care received by adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Health Serv Res 50:1021–1042

    Article  PubMed  PubMed Central  Google Scholar 

  8. Cherven B, Mertens A, Meacham LR, Williamson R, Boring C, Wasilewski-Masker K (2014) Knowledge and risk perception of late effects among childhood cancer survivors and parents before and after visiting a childhood cancer survivor clinic. J Pediatr Oncol Nurs 31:339–349

    Article  PubMed  Google Scholar 

  9. Signorelli C, Wakefield CE, Fardell JE, Wallace WHB, Robertson EG, McLoone JK, Cohn RJ (2017) The impact of long-term follow-up care for childhood cancer survivors: a systematic review. Crit Rev Oncol Hematol 114:131–138

    Article  PubMed  Google Scholar 

  10. Nathan PC, Daugherty CK, Wroblewski KE, Kigin ML, Stewart TV, Hlubocky FJ, Grunfeld E, Del Giudice ME, Ward LA, Galliher JM, Oeffinger KC, Henderson TO (2013) Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. 7:275–282

  11. Singer S, Gianinazzi ME, Hohn A, Kuehni CE, Michel G (2013) General practitioner involvement in follow-up of childhood cancer survivors: a systematic review. Pediatr Blood Cancer 60:1565–1573

    Article  PubMed  Google Scholar 

  12. Suh E, Daugherty CK, Wroblewski K, Lee H, Kigin ML, Rasinski KA, Ford JS, Tonorezos ES, Nathan PC, Oeffinger KC, Henderson TO (2014) General internists’ preferences and knowledge about the care of adult survivors of childhood cancer: a cross-sectional survey. Ann Intern Med 160:11–17

    Article  PubMed  PubMed Central  Google Scholar 

  13. Fitch MI (2018) Transition to survivorship: can there be improvement? Curr Opin Support Palliat Care 12:74–79

    Article  PubMed  Google Scholar 

  14. LaGrandeur W, Armin J, Howe CL, Ali-Akbarian L (2018) Survivorship care plan outcomes for primary care physicians, cancer survivors, and systems: a scoping review. J Cancer Surviv. https://doi.org/10.1007/s11764-017-0673-5

  15. 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 

  16. Elo S, Kääriäinen M, Kanste O, Pölkki T, Utriainen K, Kyngäs H (2014) Qualitative content analysis: a focus on trustworthiness. SAGE Open:1–10

  17. Stewart SA, Abidi S, Parker L, Bernstein M, Abidi SS (2014) Clinical guideline-driven personalized self-management diary for paediatric cancer survivors. Stud Health Technol Inform 205:18–22

    PubMed  Google Scholar 

  18. Children's Oncology Group (2013) Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers (Version 4.0). http://www.survivorshipguidelines.org/pdf/LTFUGuidelines_40.pdf

  19. Elo S, Kyngas H (2008) The qualitative content analysis process. J Adv Nurs 62:107–115

    Article  PubMed  Google Scholar 

  20. 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 40:804–812

    Article  PubMed  PubMed Central  Google Scholar 

  21. Blaauwbroek R, Barf HA, Groenier KH, Kremer LC, van der Meer K, Tissing WJ, Postma A (2012) Family doctor-driven follow-up for adult childhood cancer survivors supported by a web-based survivor care plan. J Cancer Surviv 6:163–171

    Article  CAS  PubMed  Google Scholar 

  22. Spain PD, Oeffinger KC, Candela J, McCabe M, Ma X, Tonorezos ES (2012) Response to a treatment summary and care plan among adult survivors of pediatric and young adult cancer. J Oncol Pract 8:196–202

    Article  PubMed  PubMed Central  Google Scholar 

  23. van de Poll-Franse LV, Nicolaije KA, Ezendam NP (2017) The impact of cancer survivorship care plans on patient and health care provider outcomes: a current perspective. Acta Oncol:1–5

  24. Nathan PC, Greenberg ML, Ness KK, Hudson MM, Mertens AC, Mahoney MC, Gurney JG, Donaldson SS, Leisenring WM, Robison LL, Oeffinger KC (2008) Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol 26:4401–4409

    Article  PubMed  PubMed Central  Google Scholar 

  25. Ezendam NP, Nicolaije KA, Kruitwagen RF, Pijnenborg JM, Vos MC, Boll D, van Bommel M, van de Poll-Franse LV (2014) Survivorship care plans to inform the primary care physician: results from the ROGY care pragmatic cluster randomized controlled trial. J Cancer Surviv 8:595–602

    Article  PubMed  Google Scholar 

  26. Quillen J, Bradley H, Calamaro C (2017) Identifying barriers among childhood cancer survivors transitioning to adult health care. J Pediatr Oncol Nurs 34:20–27

    Article  PubMed  Google Scholar 

  27. Potosky AL, Han PK, Rowland J, Klabunde CN, Smith T, Aziz N, Earle C, Ayanian JZ, Ganz PA, Stefanek M (2011) Differences between primary care physicians' and oncologists' knowledge, attitudes and practices regarding the care of cancer survivors. J Gen Intern Med 26:1403–1410

    Article  PubMed  PubMed Central  Google Scholar 

  28. Dulko D, Pace CM, Dittus KL, Sprague BL, Pollack LA, Hawkins NA, Geller BM (2013) Barriers and facilitators to implementing cancer survivorship care plans. Oncol Nurs Forum 40:575–580

    Article  PubMed  PubMed Central  Google Scholar 

  29. Nyarko E, Metz JM, Nguyen GT, Hampshire MK, Jacobs LA, Mao JJ (2015) Cancer survivors’ perspectives on delivery of survivorship care by primary care physicians: an internet-based survey. BMC Fam Pract 16:143

    Article  PubMed  PubMed Central  Google Scholar 

  30. Iyer NS, Mitchell HR, Zheng DJ, Ross WL, Kadan-Lottick NS (2017) Experiences with the survivorship care plan in primary care providers of childhood cancer survivors: a mixed methods approach. Support Care Cancer 25:1547–1555

    Article  PubMed  Google Scholar 

  31. Lawrence RA, McLoone JK, Wakefield CE, Cohn RJ (2016) Primary care physicians’ perspectives of their role in cancer care: a systematic review. J Gen Intern Med 31:1222–1236

    Article  PubMed  PubMed Central  Google Scholar 

  32. Shalom MM, Hahn EE, Casillas J, Ganz PA (2011) Do survivorship care plans make a difference? A primary care provider perspective. J Oncol Pract 7:314–318

    Article  PubMed  PubMed Central  Google Scholar 

  33. Donohue S, Sesto ME, Hahn DL, Buhr KA, Jacobs EA, Sosman JM, Andreason MJ, Wiegmann DA, Tevaarwerk AJ (2015) Evaluating primary care providers' views on survivorship care plans generated by an electronic health record system. J Oncol Pract 11:e329–e335

    Article  PubMed  PubMed Central  Google Scholar 

  34. Maeda N, Horibe K, Kato K, Kojima S, Tsurusawa M (2010) Survey of childhood cancer survivors who stopped follow-up physician visits. Pediatr Int 52:806–812

    Article  PubMed  Google Scholar 

  35. Rokitka DA, Curtin C, Heffler JE, Zevon MA, Attwood K, Mahoney MC (2016) Patterns of loss to follow-up care among childhood cancer survivors. J Adolesc Young Adult Oncol 6:66–73

    Google Scholar 

  36. Zebrack BJ, Eshelman DA, Hudson MM, Mertens AC, Cotter KL, Foster BM, Loftis L, Sozio M, Oeffinger KC (2004) Health care for childhood cancer survivors: insights and perspectives from a Delphi panel of young adult survivors of childhood cancer. Cancer 100:843–850

    Article  PubMed  Google Scholar 

  37. Gianinazzi ME, Essig S, Rueegg CS, von der Weid NX, Brazzola P, Kuehni CE, Michel G, Swiss Paediatric Oncology Group (SPOG) (2014) Information provision and information needs in adult survivors of childhood cancer. Pediatr Blood Cancer 61:312–318

    Article  PubMed  Google Scholar 

  38. Kantsiper M, McDonald EL, Geller G, Shockney L, Snyder C, Wolff AC (2009) Transitioning to breast cancer survivorship: perspectives of patients, cancer specialists, and primary care providers. J Gen Intern Med 24(Suppl 2):S459–S466

    Article  PubMed  Google Scholar 

  39. Robison LL, Hudson MM (2014) Survivors of childhood and adolescent cancer: life-long risks and responsibilities. Nat Rev Cancer 14:61–70

    Article  CAS  PubMed  Google Scholar 

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Acknowledgements

We would like to extend a special acknowledgement and thank you to the survivors, their family members, and physicians who made this study possible.

Funding

This project received funding support from the Cancer in Young People Canada (CYP-C) program.

Author information

Authors and Affiliations

  1. School of Health and Human Performance, Dalhousie University, PO Box 15000, 6230 South Street, Halifax, NS, B3H 4R2, Canada

    Melanie R. Keats & Kelsey Shea

  2. Department of Pediatrics, Dalhousie University, Halifax, NS, Canada

    Melanie R. Keats, Louise Parker, Samuel A. Stewart & Mark Bernstein

  3. Department of Medicine, Dalhousie University, Halifax, NS, Canada

    Louise Parker

  4. Department of Community Health and Epidemiology, Dalhousie University, Halifax, NS, Canada

    Samuel A. Stewart

  5. IWK Health Centre, Halifax, NS, Canada

    Annette Flanders & Mark Bernstein

Authors
  1. Melanie R. Keats
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  2. Kelsey Shea
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  3. Louise Parker
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  4. Samuel A. Stewart
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Corresponding author

Correspondence to Melanie R. Keats.

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The authors declare that they have no conflict of interest.

Ethical Approval and Consent to Participate

Informed consent was obtained from all participants prior to inclusion in the study. The authors Institutional Review Board approved this study prior to implementation. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Keats, M.R., Shea, K., Parker, L. et al. After Childhood Cancer: a Qualitative Study of Family Physician, Parent/Guardian, and Survivor Information Needs and Perspectives on Long-Term Follow-up and Survivorship Care Plans. J Canc Educ 34, 638–646 (2019). https://doi.org/10.1007/s13187-018-1349-1

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  • DOI: https://doi.org/10.1007/s13187-018-1349-1

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