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Attitudes and experiences of childhood cancer survivors transitioning from pediatric care to adult care

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Abstract

Purpose

Survivors of pediatric cancer are prone to late effects which require ongoing medical care. Young adult survivors often transition from specialist pediatric care to adult-oriented or community-based healthcare. This study aims to describe the attitudes and experiences of survivors and their parents towards transition barriers and enablers.

Methods

Long-term survivors and parents (of survivors < 16 years) were recruited from 11 hospitals in Australia and New Zealand to participate in a semi-structured telephone interview regarding their transition experiences. Transcribed interviews were coded and content analysis was used to number participants within themes.

Results

Thirty-three participants were interviewed, of which 18 were survivors (mean age 26 years, SD = 6.3; mean time since treatment completion 13.3 years, SD = 6.1) and 15 were parents (mean survivor age 15 years, SD = 1.9; mean time since treatment completion 8.4 years, SD = 2.8). Participants described their transition attitudes as positive (55%), neutral (15%), or negative (30%). Key barriers to transition included dependence on pediatric healthcare providers, less confidence in primary care physicians (PCPs), inadequate communication, and cognitive difficulty. Enablers included confidence in and proximity to physicians, good communication, information, independence, and age.

Conclusions

Many survivors face barriers to their transition out of pediatric care. Early introduction to transition, greater collaboration between healthcare professionals, and better information provision to survivors may improve the transition process. Future research of survivors’ experience of barriers/enablers to transition is needed. Development of interventions, such as those that address self-management skills, is required to facilitate transition and encourage long-term engagement.

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Abbreviations

LTFU:

Long-term follow-up

PCP:

Primary care physician

HCP:

Healthcare professionals

ANZ:

Australia and New Zealand

CNS:

Central nervous system

ALL:

Acute lymphoblastic leukemia

References

  1. Robison LL, Hudson MM (2014) Survivors of childhood and adolescent cancer: life-long risks and responsibilities. Nat Rev Cancer 14(1):61–70. https://doi.org/10.1038/nrc3634

    Article  PubMed  CAS  Google Scholar 

  2. Mulhern RK, Merchant TE, Gajjar A, Reddick WE, Kun LE (2004) Late neurocognitive sequelae in survivors of brain tumours in childhood. Lancet Oncol 5(7):399–408. https://doi.org/10.1016/S1470-2045(04)01507-4

    Article  PubMed  Google Scholar 

  3. Hudson MM, Ness KK, Gurney JG, Mulrooney DA, Chemaitilly W, Krull KR, Green DM, Armstrong GT, Nottage KA, Jones KE, Sklar CA, Srivastava DK, Robison LL (2013) Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA 309(22):2371–2381. https://doi.org/10.1001/jama.2013.6296

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  4. Urbach SL, Guger S, Nathan PC (2012) Long-term survivors of cancer in childhood and adolescence. Curr Pediatr Rev 8(2):166–178. https://doi.org/10.2174/157339612800681271

    Article  Google Scholar 

  5. Mertens AC, Liu Q, Neglia JP, Wasilewski K, Leisenring W, Armstrong GT, Robison LL, Yasui Y (2008) Cause-specific late mortality among 5-year survivors of childhood cancer: the childhood cancer survivor study. J Natl Cancer Inst 100(19):1368–1379. https://doi.org/10.1093/jnci/djn310

    Article  PubMed  PubMed Central  Google Scholar 

  6. Freyer DR (2010) Transition of care for young adult survivors of childhood and adolescent cancer: rationale and approaches. J Clin Oncol 28(32):4810–4818. https://doi.org/10.1200/JCO.2009.23.4278

    Article  PubMed  PubMed Central  Google Scholar 

  7. Henderson TO, Friedman DL, Meadows AT (2010) Childhood cancer survivors: transition to adult-focused risk-based care. Pediatrics 126(1):129–136. https://doi.org/10.1542/peds.2009-2802

    Article  PubMed  Google Scholar 

  8. Wallace WH, Blacklay A, Eiser C, Davies H, Hawkins M, Levitt GA, Jenney ME, Late Effects Committee of the United Kingdom Children’s Cancer Study Group (UKCCSG) (2001) Developing strategies for long term follow up of survivors of childhood cancer. BMJ 323(7307):271–274. https://doi.org/10.1136/bmj.323.7307.271

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  9. 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. https://doi.org/10.1053/j.seminoncol.2013.09.004

    Article  PubMed  PubMed Central  Google Scholar 

  10. Oeffinger KC, McCabe MS (2006) Models for delivering survivorship care. J Clin Oncol 24(32):5117–5124. https://doi.org/10.1200/JCO.2006.07.0474

    Article  PubMed  Google Scholar 

  11. Klassen AF, Rosenberg-Yunger ZRS, D’Agostino NM, Cano SJ, Barr R, Syed I, Granek L, Greenberg ML, Dix D, Nathan PC (2015) The development of scales to measure childhood cancer survivors’ readiness for transition to long-term follow-up care as adults. Health Expect 18(6):1941–1955. https://doi.org/10.1111/hex.12241

    Article  PubMed  Google Scholar 

  12. Schwartz LA et al (2011) A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev 37(6):883–895

    Article  PubMed  CAS  Google Scholar 

  13. Syed IA, Nathan PC, Barr R, Rosenberg-Yunger ZRS, D’Agostino NM, Klassen AF (2016) Examining factors associated with self-management skills in teenage survivors of cancer. J Cancer Surviv 10(4):686–691. https://doi.org/10.1007/s11764-016-0514-y

    Article  PubMed  Google Scholar 

  14. 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(27):4401–4409. https://doi.org/10.1200/JCO.2008.16.9607

    Article  PubMed  PubMed Central  Google Scholar 

  15. Lupatsch JE, Wengenroth L, Rueegg CS, Teuffel O, Gumy-Pause F, Kuehni CE, Michel G, for the Swiss Paediatric Oncology Group (SPOG) (2016) Follow-up care of adolescent survivors of childhood cancer: the role of health beliefs. Pediatr Blood Cancer 63(2):318–325. https://doi.org/10.1002/pbc.25755

    Article  PubMed  Google Scholar 

  16. Miller KA et al (2016) Supporting long-term follow-up of young adult survivors of childhood cancer: correlates of healthcare self-efficacy. Pediatr Blood Cancer 64(2):358–363

    Article  PubMed  PubMed Central  Google Scholar 

  17. Nathan PC, Agha M, Pole JD, Hodgson D, Guttmann A, Sutradhar R, Greenberg ML (2016) Predictors of attendance at specialized survivor clinics in a population-based cohort of adult survivors of childhood cancer. J Cancer Surviv 10(4):611–618. https://doi.org/10.1007/s11764-016-0522-y

    Article  PubMed  Google Scholar 

  18. Signorelli C, McLoone JK, Wakefield CE, Cohn RJ (2015) Dental hygiene in childhood cancer survivors: the importance of tertiary long term follow-up care. Pediatr Blood Cancer 62(5):921. https://doi.org/10.1002/pbc.25421

    Article  PubMed  Google Scholar 

  19. Vetsch J et al (2016) “Forewarned and forearmed”: long-term childhood cancer survivors’ and parents’ information needs and implications for survivorship models of care. Patient Educ Couns 100(2):355–363

    Article  PubMed  Google Scholar 

  20. Signorelli C, Wakefield CE, McLoone JK, Fardell JE, Lawrence RA, Osborn M, Truscott J, Tapp H, Cohn RJ, the ANZCHOG Survivorship Study Group (2017) Models of childhood cancer survivorship care in Australia and New Zealand: strengths and challenges. Asia Pac J Clin Oncol 13(6):407–415. https://doi.org/10.1111/ajco.12700

    Article  PubMed  Google Scholar 

  21. 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(1):11–17. https://doi.org/10.7326/M13-1941

    Article  PubMed  PubMed Central  Google Scholar 

  22. Kenney LB et al (2016) Transition and transfer of childhood cancer survivors to adult care: a national survey of pediatric oncologists. Pediatr Blood Cancer 64(2):346–352

    Article  PubMed  Google Scholar 

  23. Mouw MS et al (2016) Care transitions in childhood cancer survivorship: providers’ perspectives. J Adolesc Young Adult Oncol 6(1):111–119

    Article  PubMed  Google Scholar 

  24. Cheung WY, Neville BA, Cameron DB, Cook EF, Earle CC (2009) Comparisons of patient and physician expectations for cancer survivorship care. J Clin Oncol 27(15):2489–2495. https://doi.org/10.1200/JCO.2008.20.3232

    Article  PubMed  Google Scholar 

  25. Kadan-Lottick NS, Robison LL, Gurney JG, Neglia JP, Yasui Y, Hayashi R, Hudson M, Greenberg M, Mertens AC (2002) Childhood cancer survivors’ knowledge about their past diagnosis and treatment: Childhood Cancer Survivor Study. JAMA 287(14):1832–1839. https://doi.org/10.1001/jama.287.14.1832

    Article  PubMed  Google Scholar 

  26. Wilkins KL, D’Agostino N, Penney AM, Barr RD, Nathan PC (2014) Supporting adolescents and young adults with cancer through transitions: position statement from the Canadian Task Force on Adolescents and Young Adults with cancer. J Pediatr Hematol Oncol 36(7):545–551. https://doi.org/10.1097/MPH.0000000000000103

    Article  PubMed  Google Scholar 

  27. Rey-Casserly C, Meadows ME (2008) Developmental perspectives on optimizing educational and vocational outcomes in child and adult survivors of cancer. Dev Disabil Res Rev 14(3):243–250. https://doi.org/10.1002/ddrr.31

    Article  PubMed  Google Scholar 

  28. DiNofia A et al (2017) Parent-perceived facilitators in the transition of care for young adult survivors of childhood cancer. J Pediatr Hematol Oncol 39(7):e377–e380

    Article  PubMed  Google Scholar 

  29. Sadak KT, Dinofia A, Reaman G (2013) Patient-perceived facilitators in the transition of care for young adult survivors of childhood cancer. Pediatr Blood Cancer 60(8):1365–1368. https://doi.org/10.1002/pbc.24494

    Article  PubMed  Google Scholar 

  30. Quillen J, Bradley H, Calamaro C (2017) Identifying barriers among childhood cancer survivors transitioning to adult health care. J Ped Onc Nurs 34(1): 20–27

  31. McCann L, Kearney N, Wengstrom Y (2014) “It’s just going to a new hospital ... that’s it.” Or is it? An experiential perspective on moving from pediatric to adult cancer services. Cancer Nurs 37(5):E23–E31. https://doi.org/10.1097/NCC.0b013e3182a40f99

    Article  PubMed  Google Scholar 

  32. Miles MB, Huberman AM (1984) Qualitative Data Analysis: A Sourcebook of New Methods. SAGE publications Inc, California

  33. Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3(2):77–101. https://doi.org/10.1191/1478088706qp063oa

    Article  Google Scholar 

  34. Vetsch J, Rueegg CS, Gianinazzi ME, Bergsträsser E, von der Weid NX, Michel G, for the Swiss Paediatric Oncology Group (SPOG) (2015) Information needs in parents of long-term childhood cancer survivors. Pediatr Blood Cancer 62(5):859–866. https://doi.org/10.1002/pbc.25418

    Article  PubMed  Google Scholar 

  35. Boyajian RN et al (2014) Desired elements and timing of cancer survivorship care: one approach may not fit all. J Oncol Pract 10(5):e293–e298

    Article  PubMed  Google Scholar 

  36. Gianinazzi ME, Essig S, Rueegg CS, von der Weid NX, Brazzola P, Kuehni CE, Michel G, for the Swiss Paediatric Oncology Group (SPOG) (2014) Information provision and information needs in adult survivors of childhood cancer. Pediatr Blood Cancer 61(2):312–318. https://doi.org/10.1002/pbc.24762

    Article  PubMed  Google Scholar 

  37. Fardell JE, Wakefield CE, Signorelli C, Hill, R, Skeen J, Maguire AM, Cohn RJ (2017) Transition of childhood cancer survivors to adult care: the survivor perspective. Pediatr Blood Cancer 64(6)

  38. Schwartz LA, Daniel LC, Brumley LD, Barakat LP, Wesley KM, Tuchman LK (2014) Measures of readiness to transition to adult health care for youth with chronic physical health conditions: a systematic review and recommendations for measurement testing and development. J Pediatr Psychol 39(6):588–601. https://doi.org/10.1093/jpepsy/jsu028

    Article  PubMed  PubMed Central  Google Scholar 

  39. Ki Moore IM, Hockenberry MJ, Krull KR (2013) Cancer-related cognitive changes in children, adolescents and adult survivors of childhood cancers. Semin Oncol Nurs 29(4):248–259. https://doi.org/10.1016/j.soncn.2013.08.005

    Article  PubMed  Google Scholar 

  40. Hewitt, M.G. S.; Stovall, E. (2006) From cancer patient to cancer survivor: lost in transition. Institute of Medicine and National Research Council (2006) From Cancer Patient to Cancer Survivor: Lost in Transition. The National Academies Press, Washington, DC. https://doi.org/10.17226/11468

  41. Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS, Schwartz CL, Leisenring W, Robison LL, Childhood Cancer Survivor Study (2006) Chronic health conditions in adult survivors of childhood cancer. N Engl J Med 355(15):1572–1582. https://doi.org/10.1056/NEJMsa060185

    Article  PubMed  CAS  Google Scholar 

  42. 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(10):1222–1236. https://doi.org/10.1007/s11606-016-3746-7

    Article  PubMed  PubMed Central  Google Scholar 

  43. Berg CJ, Stratton E, Esiashvili N, Mertens A (2016) Young adult cancer survivors’ experience with cancer treatment and follow-up care and perceptions of barriers to engaging in recommended care. J Cancer Educ 31(3):430–442. https://doi.org/10.1007/s13187-015-0853-9

    Article  PubMed  PubMed Central  Google Scholar 

  44. Fluchel MN, Kirchhoff AC, Bodson J, Sweeney C, Edwards SL, Ding Q, Stoddard GJ, Kinney AY (2014) Geography and the burden of care in pediatric cancers. Pediatr Blood Cancer 61(11):1918–1924. https://doi.org/10.1002/pbc.25170

    Article  PubMed  PubMed Central  Google Scholar 

  45. McCorkle R, Ercolano E, Lazenby M, Schulman-Green D, Schilling LS, Lorig K, Wagner EH (2011) Self-management: enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin 61(1):50–62. https://doi.org/10.3322/caac.20093

    Article  PubMed  PubMed Central  Google Scholar 

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Acknowledgements

ANZCHOG Survivorship Study Group: The members of the ANZCHOG Survivorship Study Group in alphabetical order: Dr. Frank Alvaro, Prof Richard Cohn, Dr. Rob Corbett, Dr. Peter Downie, Ms Karen Egan, Prof Jon Emery, Ms Sarah Ellis, Prof Jon Emery, Dr Joanna Fardell, Ms Tali Foreman, Dr Melissa Gabriel, Prof Afaf Girgis, Ms Kerrie Graham, Ms Karen Johnston, Dr Janelle Jones, Dr Liane Lockwood, Dr Ann Maguire, Dr Maria McCarthy, Dr Jordana McLoone, Ms Sinead Molloy, Dr Michael Osborn, Ms Christina Signorelli, Dr Jane Skeen, Dr Heather Tapp, Ms Tracy Till, Ms Jo Truscott, Ms Kate Turpin, Prof Claire Wakefield, Dr Thomas Walwyn, and Ms Kathy Yallop.

Funding

This project received financial support from The Kids Cancer Alliance. The Behavioral Sciences Unit is proudly supported by the Kids with Cancer Foundation. Joanna Fardell and Christina Signorelli are supported by The Kids’ Cancer Project. Claire Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501). The BSU’s survivorship research program is funded by The Kids’ Cancer Project and a Cancer Council NSW Program Grant PG16-02 with the support of the Estate of the Late Harry McPaul.

Author information

Authors and Affiliations

  1. Discipline of Pediatrics, School of Women’s and Children’s Health, UNSW Sydney, Sydney, NSW, Australia

    Beeshman S. Nandakumar, Joanna E. Fardell, Claire E. Wakefield, Christina Signorelli, Jordana K. McLoone & Richard J. Cohn

  2. Kids Cancer Centre, Sydney Children’s Hospital (SCH), Randwick, NSW, Australia

    Beeshman S. Nandakumar, Joanna E. Fardell, Claire E. Wakefield, Christina Signorelli, Jordana K. McLoone & Richard J. Cohn

  3. Starship Blood and Cancer Centre, Starship Children’s Hospital, Auckland, 1124, New Zealand

    Jane Skeen

  4. Discipline of Child and Adolescent Health, The University of Sydney, Sydney, New South Wales, Australia

    Ann M. Maguire

  5. Long Term Follow Up Clinic, Department of Oncology, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia

    Ann M. Maguire

  6. Institute of Endocrinology and Diabetes, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia

    Ann M. Maguire

Authors
  1. Beeshman S. Nandakumar
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  2. Joanna E. Fardell
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  3. Claire E. Wakefield
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  4. Christina Signorelli
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  5. Jordana K. McLoone
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  6. Jane Skeen
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  7. Ann M. Maguire
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  8. Richard J. Cohn
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Consortia

on behalf of the ANZCHOG Survivorship Study Group

  • Frank Alvaro
  • , Richard Cohn
  • , Rob Corbett
  • , Peter Downie
  • , Karen Egan
  • , Jon Emery
  • , Sarah Ellis
  • , Jon Emery
  • , Joanna Fardell
  • , Tali Foreman
  • , Melissa Gabriel
  • , Afaf Girgis
  • , Kerrie Graham
  • , Karen Johnston
  • , Janelle Jones
  • , Liane Lockwood
  • , Ann Maguire
  • , Maria McCarthy
  • , Jordana McLoone
  • , Sinead Molloy
  • , Michael Osborn
  • , Christina Signorelli
  • , Jane Skeen
  • , Heather Tapp
  • , Tracy Till
  • , Jo Truscott
  • , Kate Turpin
  • , Claire Wakefield
  • , Thomas Walwyn
  •  & Kathy Yallop

Corresponding author

Correspondence to Joanna E. Fardell.

Ethics declarations

Ethics approval was obtained from all participating hospitals, and informed consent was obtained from all participants before proceeding with the study.

Conflicts of interest statement

The authors declare that they have no conflict of interest.

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Nandakumar, B.S., Fardell, J.E., Wakefield, C.E. et al. Attitudes and experiences of childhood cancer survivors transitioning from pediatric care to adult care. Support Care Cancer 26, 2743–2750 (2018). https://doi.org/10.1007/s00520-018-4077-5

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