Skip to main content
SpringerLink
Log in

Transition for Adolescents and Young Adults with Cancer

  • Chapter
  • First Online:
Nursing Adolescents and Young Adults with Cancer

Abstract

Adolescents and young adults (AYAs) who survive cancer require long-term physical and psychological cancer-related follow-up care in an adult healthcare service. This means that they must transition from the child cancer unit to adult care provision. Transitioning to adult care is very challenging for many AYAs as it involves developmental, situational and role change transitions. AYAs often feel lost and abandoned and have unmet needs in relation to information, transition preparation and advice about late effects. To provide high-quality person-centred care, it is essential that AYAs are provided with the necessary knowledge and skills to make a smooth transition and to successfully manage their own healthcare needs within the adult healthcare services. Nurses as key members of the multidisciplinary team can play a significant role in preparing and coordinating the transition for AYAs to long-term follow-up care. Nurses can make a real difference to AYAs’ experiences by providing information, education and support before, during and after transition to adult care. Increasingly, nurses are leading on joint transition clinics and coordinating and delivering transition programmes. Nurses are in a unique position, through their competencies and 24/7 contact with AYAs and families, to improve the experiences for many AYAs who survive cancer.

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

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 39.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 49.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 49.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Armstrong GT, Kawashima T, Leisenring W, et al. Aging and risk of severe, disabling, life-threatening, and fatal events in the childhood cancer survivor study. J Clin Oncol. 2014;32:1218–27.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Dovey-Pearce G, Christie D. Transition in diabetes: young people move on – we should too. J Paediatr Child Health. 2013;23:174–9.

    Article  Google Scholar 

  3. National Institute for Health and Care Excellence. Transition from children’s to adults’ services for young people using health or social care services: NICE guidelines. London: National Institute for Health and Care Excellence; 2016.

    Google Scholar 

  4. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110:1304–6.

    Google Scholar 

  5. Meleis AI, editor. Transition theory: middle range and situation specific theories in nursing research and practice. New York: Springer Publishing Company; 2010.

    Google Scholar 

  6. Oeffinger KC, Mertens AC, Sklar CA, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355:1572–82.

    Article  CAS  PubMed  Google Scholar 

  7. Patterson P, McDonald FE, Zebrack B, Medlow S. Emerging issues among adolescent and young adult cancer survivors. Semin Oncol Nurs. 2015;31:53–9.

    Article  PubMed  Google Scholar 

  8. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians and Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128:182–200.

    Article  Google Scholar 

  9. Nathan PC, Daugherty CK, Wroblewski KE, et al. Family physician preferences and knowledge gaps regarding the care of adolescent and young adult survivors of childhood cancer. J Cancer Surviv. 2013;7:275–82.

    Article  PubMed  Google Scholar 

  10. Henderson TO, Friedman DL, Meadows AT. Childhood cancer survivors: transition to adult-focused risk-based care. Pediatrics. 2010;126:129–36.

    Article  PubMed  Google Scholar 

  11. Kirchhoff AC, Lyles CR, Fluchel M, Wright J, Leisenring W. Limitations in health care access and utilization among long-term survivors of adolescent and young adult cancer. Cancer. 2012;118:5964–72.

    Article  PubMed  Google Scholar 

  12. Kenney LB, Melvin P, Fishman LN, et al. Transition and transfer of childhood cancer survivors to adult care: a national survey of pediatric oncologists. Pediatr Blood Cancer. 2016;64:346–52.

    Article  PubMed  Google Scholar 

  13. Miedema B, Easley J, Robinson LM. Do current cancer follow-up care practices meet the needs of young adult cancer survivors in Canada? A qualitative inquiry. Curr Oncol. 2013;20:14–22.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  14. Berg CJ, Stratton E, Esiashvili N, Mertens A. Young adult cancer survivors’ experience with cancer treatment and follow-up care and perceptions of barriers to engaging in recommended care. J Cancer Educ. 2016;31:430–42.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Lupatsch JE, Wengenroth L, Rueegg CS, et al. Follow-up care of adolescent survivors of childhood cancer: the role of health beliefs. Pediatr Blood Cancer. 2016;63:318–25.

    Article  PubMed  Google Scholar 

  16. Rosenberg-Yunger ZR, Klassen AF, Amin L, et al. Barriers and facilitators of transition from pediatric to adult long-term follow-up care in childhood cancer survivors. J of Adolesc Young Adult Oncol. 2013;2:104–11.

    Article  Google Scholar 

  17. Quillen J, Bradley H, Calamaro C. Identifying barriers among childhood cancer survivors transitioning to adult health care. J Pediatr Oncol Nurs. 2016;34:20–7.

    Article  Google Scholar 

  18. Hudson SV, Miller SM, Hemler J, et al. Adult cancer survivors discuss follow-up in primary care: ‘not what I want, but maybe what I need’. Ann Fam Med. 2012;10:418–27.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Granek L, Nathan PC, Rosenberg-Yunger ZR, et al. Psychological factors impacting transition from paediatric to adult care by childhood cancer survivors. J Cancer Surviv. 2012;6:260–9.

    Article  PubMed  Google Scholar 

  20. Hutchinson RJ. Primary care for adult survivors of childhood cancer: medical needs and required strategies. Adolesc Med State Art Rev. 2013;24:643–58.

    PubMed  Google Scholar 

  21. Essig S, Skinner R, von der Weid NX, Kuehni CE, Michel G. Follow-up programs for childhood cancer survivors in Europe: a questionnaire survey. PLoS One. 2013;7:e53201.

    Article  CAS  Google Scholar 

  22. Wilkins KL, D’Agostino N, Penney AM, Barr RD, Nathan PC. 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. 2014;36:545–51.

    Article  PubMed  Google Scholar 

  23. 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. 2016;10:342–50.

    Article  PubMed  Google Scholar 

  24. Singer S, Gianinazzi ME, Hohn A, Kuehni CE, Michel G. General practitioner involvement in follow-up of childhood cancer survivors: a systematic review. Pediatr Blood Cancer. 2013;60:1565–73.

    Article  PubMed  Google Scholar 

  25. Kinahan KE, Sanford S, Sadak KT, Salsman JM, Danner-Koptik K, Didwania A. Models of cancer survivorship care for adolescents and young adults. Semin Oncol Nurs. 2015;31:251–9.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Nathan PC, Hayes-Lattin B, Sisler JJ, Hudson MM. Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer. 2011;117:2335–41.

    Article  PubMed  Google Scholar 

  27. Sheehan AM, While AE, Coyne I. The experiences and impact of transition from child to adult healthcare services for young people with Type 1 diabetes: a systematic review. Diabet Med. 2015;32:440–58.

    Article  CAS  PubMed  Google Scholar 

  28. Heery E, Sheehan AM, While AE, Coyne I. Experiences and outcomes of transition from pediatric to adult health care services for young people with congenital heart disease: a systematic review. Congenit Heart Dis. 2015;10:413–27.

    Article  PubMed  Google Scholar 

  29. Coyne I, While AE, Sheehan A. Transitioning of young people (with chronic illnesses) from child to adult healthcare services: identifying needs from multiple perspectives from three disease groups. J Adolesc Health. 2014;56:S128.

    Article  Google Scholar 

  30. Mertens AC, Brand S, Ness KK, et al. Health and well-being in adolescent survivors of early childhood cancer: a report from the Childhood Cancer Survivor Study. Psychooncology. 2014;23:266–75.

    Article  PubMed  Google Scholar 

  31. Zebrack B, Kent EE, Keegan TH, Kato I, Smith AW. “Cancer sucks,” and other ponderings by adolescent and young adult cancer survivors. J Psychosoc Oncol. 2014;32:1–15.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Jones BL, Parker-Raley J, Barczyk A. Adolescent cancer survivors: identity paradox and the need to belong. Qual Health Res. 2011;21:1033–40.

    Article  PubMed  Google Scholar 

  33. Vetsch J, Fardell JE, Wakefield CE, et al. “Forewarned and forearmed”: long-term childhood cancer survivors’ and parents’ information needs and implications for survivorship models of care. Patient Educ Couns. 2016;100:355–63.

    Article  PubMed  Google Scholar 

  34. Syed IA, Nathan PC, Barr R, Rosenberg-Yunger ZR, D’Agostino NM, Klassen AF. Examining factors associated with self-management skills in teenage survivors of cancer. J Cancer Surviv. 2016;10:686–91.

    Article  PubMed  Google Scholar 

  35. Coyne I, Sheehan AM, Heery E, While AE. Improving transition to adult healthcare for young people with cystic fibrosis: a systematic review. J Child Health Care. 2017;21:312–30.

    Article  PubMed  Google Scholar 

  36. Gravelle AM, Paone M, Davidson AG, Chilvers MA. Evaluation of a multidimensional cystic fibrosis transition program: a quality improvement initiative. J Pediatr Nurs. 2015;30:236–43.

    Article  PubMed  Google Scholar 

  37. Betz CL, Smith KA, Van Speybroeck A, Hernandez FV, Jacobs RA. Movin’ on up: an innovative nurse-led interdisciplinary health care transition program. J Pediatr Health Care. 2016;30:323–38.

    Article  PubMed  Google Scholar 

  38. Betz CL, O’Kane LS, Nehring WM, Lobo ML. Systematic review: health care transition practice service models. Nurs Outlook. 2016;64:229–43.

    Article  PubMed  Google Scholar 

  39. Bashore L, Bender J. Evaluation of the utility of a transition workbook in preparing adolescent and young adult cancer survivors for transition to adult services: a pilot study. J Pediatr Oncol Nurs. 2016;33:111–8.

    Article  PubMed  Google Scholar 

  40. Betz CL. Facilitating the transition of adolescents with developmental disabilities: nursing practice issues and care. J Pediatr Nurs. 2007;22:103–15.

    Article  PubMed  Google Scholar 

  41. McCann L, Kearney N, Wengstrom Y. “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. 2014;37:E23–31.

    Article  PubMed  Google Scholar 

  42. McDonagh JE, Hackett J, McGee M, Southwood T, Shaw KL. The evidence base for transition is bigger than you might think. Arch Dis Child Educ Pract Ed. 2015;100:321–2.

    Article  PubMed  Google Scholar 

  43. Sawicki GS, Lukens-Bull K, Yin X, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ—Transition Readiness Assessment Questionnaire. J Pediatr Psychol. 2011;36:160–71.

    Article  PubMed  Google Scholar 

  44. Klemp JR. Survivorship care planning: one size does not fit all. Semin Oncol Nurs. 2015;31:67–72.

    Article  PubMed  Google Scholar 

  45. Poplack DG, Fordis M, Landier W, Bhatia S, Hudson MM, Horowitz ME. Childhood cancer survivor care: development of the Passport for Care. Nat Rev Clin Oncol. 2014;11:740–50.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Williamson R, Meacham L, Cherven B, et al. Predictors of successful use of a web-based healthcare document storage and sharing system for pediatric cancer survivors: Cancer SurvivorLink. J Cancer Surviv. 2014;8:355–63.

    Article  PubMed  Google Scholar 

  47. Coyne I, O’Mathuna DP, Gibson F, Shields L, Leclercq E, Sheaf G. Interventions for promoting participation in shared decision-making for children with cancer. Cochrane Database Syst Rev. 2016;11:Cd008970.

    PubMed  Google Scholar 

  48. Miller KA, Wojcik KY, Ramirez CN, et al. Supporting long-term follow-up of young adult survivors of childhood cancer: correlates of healthcare self-efficacy. Pediatr Blood Cancer. 2016;64:358–63.

    Article  PubMed  PubMed Central  Google Scholar 

  49. Vetsch J, Rueegg CS, Mader L, et al. Follow-up care of young childhood cancer survivors: attendance and parental involvement. Support Care Cancer. 2016;24:3127–38.

    PubMed  Google Scholar 

  50. Coyne I, Harder M. Children’s participation in decision-making: balancing protection with shared decision-making using a situational perspective. J Child Health Care. 2011;15:312–9.

    Article  PubMed  Google Scholar 

  51. Coyne I, Amory A, Kiernan G, Gibson F. Children’s participation in shared decision-making: children, adolescents, parents and healthcare professionals’ perspectives and experiences. Eur J Oncol Nurs. 2014;18:273–80.

    Article  PubMed  Google Scholar 

  52. Betz CL, Lobo ML, Nehring WM, Bui K. Voices not heard: a systematic review of adolescents’ and emerging adults’ perspectives of health care transition. Nurs Outlook. 2013;61:311–36.

    Article  PubMed  Google Scholar 

  53. Coyne I, Amory A, Gibson F, Kiernan G. Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange. Eur J Cancer Care. 2016;25:141–56.

    Article  CAS  Google Scholar 

  54. Coyne I, Prizeman G, Sheehan A, Malone H, While AE. An e-health intervention to support the transition of young people with long-term illnesses to adult healthcare services: design and early use. Patient Educ Couns. 2016;99:1496–504.

    Article  CAS  PubMed  Google Scholar 

  55. Zebrack BJ, Corbett V, Embry L, et al. Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis. Psychooncology. 2014;23:1267–75.

    Article  PubMed  Google Scholar 

  56. Kazak AE, Noll RB. The integration of psychology in pediatric oncology research and practice: collaboration to improve care and outcomes for children and families. Am Psychol. 2015;70:146–58.

    Article  PubMed  Google Scholar 

  57. Kinahan KE, Sharp LK, Arntson P, Galvin K, Grill L, Didwania A. Adult survivors of childhood cancer and their parents: experiences with survivorship and long-term follow-up. J Pediatr Hematol Oncol. 2008;30:651–8.

    Article  PubMed  Google Scholar 

  58. Olsen PR, Harder I. Caring for teenagers and young adults with cancer: a grounded theory study of network-focused nursing. Eur J Oncol Nurs. 2011;15:152–9.

    Article  PubMed  Google Scholar 

  59. Mouw MS, Wertman EA, Barrington C, Earp JA. Care transitions in childhood cancer survivorship: providers’ perspectives. J Adolesc Young Adult Oncol. 2017;6:111–9.

    Article  PubMed  PubMed Central  Google Scholar 

  60. McCabe MS, Partridge AH, Grunfeld E, Hudson MM. Risk-based health care, the cancer survivor, the oncologist, and the primary care physician. Semin Oncol. 2013;40:804–12.

    Article  PubMed  PubMed Central  Google Scholar 

  61. Thompson K, Palmer S, Dyson G. Adolescents & young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs. 2009;13:207–12.

    Article  PubMed  Google Scholar 

  62. Bradwell M. Survivors of childhood cancer. Paediatr Nurs. 2009;21:21–4.

    Article  PubMed  Google Scholar 

  63. Coyne I, Comiskey CM, Lalor JG, Higgins A, Elliott N, Begley C. An exploration of clinical practice in sites with and without clinical nurse or midwife specialists or advanced nurse practitioners, in Ireland. BMC Health Serv Res. 2016;16:151.

    Article  PubMed  PubMed Central  Google Scholar 

Useful Websites

  • www.CanCare4Living.ie which is a dedicated advocacy group for survivors of childhood and adolescent cancer and their families.

  • Livestrong https://www.livestrong.org/we-can-help/young-adults

  • www.imtooyoungforthis.org is a charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media.

  • www.acor.org/ped-onc (Paediatric Oncology Resource Centre) is for parents, friends and families of children who have or had childhood cancer.

  • Planet Cancer (www.planetcancer.org), a vibrant, one-of-a-kind community of support and advocacy for young adults with cancer.

  • http://myplanet.planetcancer.org. is a social networking site for young adults with cancer.

  • http://stupidcancer.org/ addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media.

  • http://www.hope4yawc.org/ is a non-profit organisation nationwide that focuses on providing direct financial support to young adults with cancer ages 18–40.

  • www.SteppingUp.ie resources and templates co-designed by young people with chronic conditions and which provides advice structured around the three phases of transition, thinking, planning and doing transition.

  • https://www.nice.org.uk/guidance/ng43 NICE guideline on transition from children to adults’ services for young people using health or social care services. Published: 24th February 2016.

  • www.gottransition.org National Healthcare Transition Center which provides resources for youth and families, healthcare providers, researchers and policy-makers.

Download references

Acknowledgements

Special thanks to Daniel, Aoife and Lucy (pseudonym) who were so kind to share their experiences with me and to allow their stories to be published. Their experiences vividly illustrate the challenges for young people who survive childhood cancer. I am so grateful and privileged to hear their stories and hope we can make the transition easier for other survivors of childhood cancer.

Author information

Authors and Affiliations

  1. School of Nursing and Midwifery, Trinity College Dublin, The University of Dublin, Dublin, Ireland

    Imelda Coyne PhD, MA, BSc (Hons)

  2. Trinity Research in Childhood Centre, Trinity College Dublin, The University of Dublin, Dublin, Ireland

    Imelda Coyne PhD, MA, BSc (Hons)

Authors
  1. Imelda Coyne PhD, MA, BSc (Hons)
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Imelda Coyne PhD, MA, BSc (Hons) .

Editor information

Editors and Affiliations

  1. Department of Oncology, Aarhus University Hospital, Aarhus, Denmark

    Pia Riis Olsen

  2. Head of Nursing and Clinical Services, Teenage Cancer Trust, London, United Kingdom

    Sam Smith

Rights and permissions

Reprints and permissions

Copyright information

© 2018 Springer International Publishing AG, part of Springer Nature

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Coyne, I. (2018). Transition for Adolescents and Young Adults with Cancer. In: Olsen, P., Smith, S. (eds) Nursing Adolescents and Young Adults with Cancer. Springer, Cham. https://doi.org/10.1007/978-3-319-73555-9_11

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-73555-9_11

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-73554-2

  • Online ISBN: 978-3-319-73555-9

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation