Skip to main content

Advertisement

SpringerLink
Log in

Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents

  • Published:
Journal of Cancer Survivorship Aims and scope Submit manuscript

Abstract

Purpose

This study aimed to elucidate experiences and preferences for survivorship care delivery among adolescent and young adult (AYA) childhood cancer survivors who experienced healthcare transitions.

Methods

Eight focus groups were conducted with two groups of AYA survivors and their parents: (1) those who recently completed cancer treatment and are beginning follow-up care and (2) those who disengaged in follow-up care after the transition from pediatric to adult survivorship clinics. Interviewers used a structured interview guide that contained questions about perceptions and preferences for survivorship care models, resources, and tools (e.g., a survivorship care plan). We employed directed content analysis techniques to identify and organize relevant themes.

Results

Results of this study support six primary themes for optimizing survivorship care models for AYA: (1) improve knowledge of late effects and need for LTFU; (2) provide supportive services that help to address fear and uncertainty about health; (3) adapt survivorship care to be consistent with AYA developmental factors; (4) increase support surrounding healthcare transitions; (5) improve survivorship care communication and coordination between patients and families, and between providers; and (6) incorporate digital health tools.

Conclusions

These groups represent vulnerable patient populations in AYA survivorship care and their perspectives highlight potential clinical and research priorities for enhancing long-term care models.

Implications for Cancer Survivors

Elucidating AYA and parent recommendations for survivorship care delivery can help to promote continuous engagement in care, target unmet needs, and promote health through survivorship models that are deemed acceptable to both patients and families.

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

Similar content being viewed by others

References

  1. National Cancer Institute, LIVESTRONG Young Adult Alliance. Closing the gap: research and care imperative for adolescents and young adults with cancer. Report of the adolescent and young adult oncology progress review group. Bethesda, MD; 2006. https://www.cancer.gov/types/aya/research/ayao-august-2006.pdf. Accessed 2 July 2019.

  2. Smith AW, Seibel NL, Lewis DR, Albritton KH, Blair DF, Blanke CD, et al. Next steps for adolescent and young adult oncology workshop: an update on progress and recommendations for the future. Cancer. 2016;122(7):988–99.

    Article  PubMed  Google Scholar 

  3. Burkart M, Sanford S, Dinner S, Sharp L, Kinahan K. Future health of AYA survivors. Pediatr Blood Cancer. 2019;66(2):e27516.

    Article  PubMed  Google Scholar 

  4. Wakefield CE, McLoone JK, Butow P, Lenthen K, Cohn RJ. Parental adjustment to the completion of their child’s cancer treatment. Pediatr Blood Cancer. 2011;56(4):524–31.

    Article  PubMed  Google Scholar 

  5. 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(Suppl. 10):2335–41.

    Article  PubMed  Google Scholar 

  6. Szalda D, Pierce L, Hobbie W, Ginsberg JP, Brumley L, Wasik M, 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(2):342–50.

    Article  PubMed  Google Scholar 

  7. Schwartz LA, Brumley LD, Tuchman LK, Barakat LP, Hobbie WL, Ginsberg JP, et al. Stakeholder validation of a model of readiness for transition to adult care. JAMA Pediatr. 2013;167(10):939–46.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Schwartz L, Tuchman L, Hobbie W, Ginsberg J. 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. 2011;37(6):883–95.

    Article  CAS  PubMed  Google Scholar 

  9. Fardell JE, Patterson P, Wakefield CE, Signorelli C, Cohn RJ, Anazodo A, et al. A narrative review of models of care for adolescents and young adults with cancer: barriers and recommendations. J Adolesc Young Adult Oncol. 2018;7(2):148–52.

    Article  PubMed  Google Scholar 

  10. Wakefield CE, Butow P, Fleming CA, Daniel G, Cohn RJ. Family information needs at childhood cancer treatment completion. Pediatr Blood Cancer. 2012;58(4):621–6.

    Article  PubMed  Google Scholar 

  11. Wakefield C, McLoone J, Butow P, Lenthen K, Cohn R. Support after the completion of cancer treatment: perspectives of Australian adolescents and their families. Eur J Cancer Care (Engl). 2013;22(4):530–9.

    Article  CAS  Google Scholar 

  12. 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(3):251–9.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Children’s Oncology Group. Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers version 5.0. 2018. www.survivorshipguidelines.org. Accessed 7 Feb 2019.

  14. Steele JR, Wall M, Salkowski N, Mitby P, Kawashima T, Yeazel MW, et al. Predictors of risk-based medical follow-up: a report from the Childhood Cancer Survivor Study. J Cancer Surviv. 2013;7(3):379–91.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Lown EA, Phillips F, Schwartz LA, Rosenberg AR, Jones B. Psychosocial follow-up in survivorship as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62(S5):S531–601.

    Article  Google Scholar 

  16. Daly A, Lewis RW, Vangile K, Masker KW, Effinger KE, Meacham LR, et al. Survivor clinic attendance among pediatric-and adolescent-aged survivors of childhood cancer. J Cancer Surviv. 2019;13(1):56–65.

    Article  PubMed  Google Scholar 

  17. Casillas J, Oeffinger KC, Hudson MM, Greenberg ML, Yeazel MW, Ness KK, et al. 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. 2015;50(4):1021–42.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Barakat LP, Schwartz LA, Szabo MM, Hussey H, Bunin GR. Factors that contribute to post-treatment follow-up care for survivors of childhood cancer. J Cancer Surviv. 2012;6(2):155–62.

    Article  PubMed  Google Scholar 

  19. Nathan PC, Greenberg ML, Ness KK, Hudson MM, Mertens AC, Mahoney MC, et al. Medical care in long-term survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol. 2008;26(27):4401–9.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Szalda D, Hobbie WL, Ginsberg JP, Brumley LD, Wasik M, Schwartz LA, editors. Follow-up care and cancer related communication with providers among young adult survivors of childhood cancer after transfer to adult care. Toronto: International Society for Pediatric Oncology; 2014.

    Google Scholar 

  21. Friedman DL, Freyer DR, Levitt GA. Models of care for survivors of childhood cancer. Pediatr Blood Cancer. 2006;46(2):159–68.

    Article  PubMed  Google Scholar 

  22. Henderson TO, Hlubocky FJ, Wroblewski KE, Diller L, Daugherty CK. Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: a mailed survey of pediatric oncologists. J Clin Oncol. 2010;28(5):878–83.

    Article  PubMed  Google Scholar 

  23. Psihogios AM, Pauly-Hubbard H, Schwartz L, Ginsberg J, Hobbie W, Szalda D. Understanding and improving knowledge of cancer survivorship care among local college providers. J Cancer Educ. 2018;33(5):1075–81.

    Article  PubMed  Google Scholar 

  24. Nathan PC, Daugherty CK, Wroblewski KE, Kigin ML, Stewart TV, Hlubocky FJ, 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(3):275–82.

    Article  PubMed  Google Scholar 

  25. Kirchhoff AC, Montenegro RE, Warner EL, Wright J, Fluchel M, Stroup AM, et al. Childhood cancer survivors’ primary care and follow-up experiences. Support Care Cancer. 2014;22(6):1629–35.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Deline M. The CoC clarifies the survivorship care plan standard: what you need to know. The Advisory Board Company 2014. https://www.advisory.com/research/oncology-roundtable/oncology-rounds/2014/09/the-coc-clarifies-the-survivorship-care-plan-standard-what-you-need-to-know. Accessed 7 Feb 2019.

  27. Landier W, Hawkins S, Leonard M. Establishing and enhancing services for childhood cancer survivors: long-term follow-up program resource guide. Arcadia: Children’s Oncology Group; 2007.

    Google Scholar 

  28. Warner EL, Wu YP, Hacking CC, Wright J, Spraker-Perlman HL, Gardner E, et al. An assessment to inform pediatric cancer provider development and delivery of survivor care plans. J Cancer Educ. 2015;30(4):677–84.

    Article  PubMed  Google Scholar 

  29. Casillas J, Syrjala KL, Ganz PA, Hammond E, Marcus AC, Moss KM, et al. How confident are young adult cancer survivors in managing their survivorship care? A report from the LIVESTRONG™ Survivorship Center of Excellence Network. J Cancer Surviv. 2011;5(4):371–81.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Devine KA, Viola AS, Coups EJ, Wu YP. Digital health interventions for adolescent and young adult cancer survivors. JCO Clin Cancer Inform. 2018;2:1–15.

    Article  PubMed  Google Scholar 

  31. Adolescents and Young Adults with Cancer. National Cancer Institute. 2018. https://www.cancer.gov/types/aya. Accessed April 22 2019.

  32. Szalda D, Piece L, Brumley L, Li Y, Schapira MM, Wasik M, et al. Associates of engagement in adult-oriented follow-up care for childhood cancer survivors. J Adolesc Health. 2017;60:147–53.

    Article  PubMed  Google Scholar 

  33. Patton M. Qualitative research and evaluation methods. In: Suri H, editor. Purposeful sampling in qualitative research synthesis. Thousand Oaks: Sage Publishers; 2002. p. 230–46.

    Google Scholar 

  34. Wu YP, Thompson D, Aroian KJ, McQuaid EL, Deatrick JA. Commentary: Writing and evaluating qualitative research reports. J Pediatr Psychol. 2016;41(5):493–505.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Sandelowski M. Sample size in qualitative research. Res Nurs Health. 1995;18(2):179–83.

    Article  CAS  PubMed  Google Scholar 

  36. Szalda D, Schwartz L, Schapira MM, Jacobs L, Kim E, Vachani C, et al. Internet-based survivorship care plans for adult survivors of childhood cancer: a pilot study. J Adolesc Young Adult Oncol. 2016;5(4):351–4.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Schwartz L, Psihogios AM, Henry-Moss D, Daniel LC, Ver Hoeve E, Velazquez-Martin B, et al. Iterative development of a mHealth intervention for adolescent and young adult survivors of childhood cancer. Clin Pract Pediatr Psychol. 2019;7(1):31–43.

    Article  Google Scholar 

  38. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88.

    Article  PubMed  Google Scholar 

  39. Quillen J, Bradley H, Calamaro C. Identifying barriers among childhood cancer survivors transitioning to adult health care. J Pediatr Oncol Nurs. 2016;34(1):20–7.

    Article  PubMed  Google Scholar 

  40. Ganju RG, Nanda RH, Esiashvili N, Switchenko JM, Wasilewski-Masker K, Marchak JG. The effect of transition clinics on knowledge of diagnosis and perception of risk in young adult survivors of childhood cancer. J Pediatr Hematol Oncol. 2016;38(3):197–201.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Kadan-Lottick NS, Robison LL, Gurney JG, Neglia JP, Yasui Y, Hayashi R, et al. Childhood cancer survivors’ knowledge about their past diagnosis and treatment: Childhood Cancer Survivor Study. JAMA. 2002;287(14):1832–9.

    Article  PubMed  Google Scholar 

  42. Keegan TH, Lichtensztajn DY, Kato I, Kent EE, Wu X-C, West MM, et al. Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv. 2012;6(3):239–50.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Smits-Seemann RR, Kaul S, Zamora ER, Wu YP, Kirchhoff AC. Barriers to follow-up care among survivors of adolescent and young adult cancer. J Cancer Surviv. 2017;11(1):126–32.

    Article  PubMed  Google Scholar 

  44. Kwak M, Zebrack BJ, Meeske KA, Embry L, Aguilar C, Block R, et al. Trajectories of psychological distress in adolescent and young adult patients with cancer: a 1-year longitudinal study. J Clin Oncol. 2013;31(17):2160–6.

    Article  PubMed  Google Scholar 

  45. Barakat LP, Galtieri LR, Szalda D, Schwartz LA. Assessing the psychosocial needs and program preferences of adolescents and young adults with cancer. Support Care Cancer. 2016;24(2):823–32.

    Article  PubMed  Google Scholar 

  46. Herts KL, Khaled MM, Stanton AL. Correlates of self-efficacy for disease management in adolescent/young adult cancer survivors: a systematic review. Health Psychol. 2017;36(3):192–205.

    Article  PubMed  Google Scholar 

  47. Zebrack B, Mathews-Bradshaw B, Siegel S, Alliance LYA. Quality cancer care for adolescents and young adults: a position statement. J Clin Oncol. 2010;28(32):4862–7.

    Article  PubMed  Google Scholar 

  48. McCurdy C, DiCenso A, Boblin S, Ludwin D, Bryant-Lukosius D, Bosompra K. There to here: young adult patients’ perceptions of the process of transition from pediatric to adult transplant care. Prog Transplant. 2006;16:309–16.

    Article  PubMed  Google Scholar 

  49. Kenney LB, Melvin P, Fishman LN, O'Sullivan-Oliveira J, Sawicki GS, Ziniel S, et al. Transition and transfer of childhood cancer survivors to adult care: a national survey of pediatric oncologists. Pediatr Blood Cancer. 2017;64(2):346–52.

    Article  PubMed  Google Scholar 

  50. Svedberg P, Einberg E-L, Wärnestål P, Stigmar J, Castor A, Enskär K, et al. Support from healthcare services during transition to adulthood—experiences of young adult survivors of pediatric cancer. Eur J Oncol Nurs. 2016;21:105–12.

    Article  PubMed  Google Scholar 

  51. Betz CL, Nehring WM. Promoting health care transitions for adolescents with special health care needs and disabilities. Baltimore: Paul H. Brookes Pub; 2007.

    Google Scholar 

  52. Telfair J, Alexander LR, Loosier PS, Alleman-Velez PL, Simmons J. Providers’ perspectives and beliefs regarding transition to adult care for adolescents with sickle cell disease. J Health Care Poor Underserved. 2004;15:443–61.

    Article  PubMed  Google Scholar 

  53. Anoshiravani A, Gaskin GL, Groshek MR, Kuelbs C, Longhurst CA. Special requirements for electronic medical records in adolescent medicine. J Adolesc Health. 2012;51(5):409–14.

    Article  PubMed  Google Scholar 

  54. Rabin C, Horowitz S, Marcus B. Recruiting young adult cancer survivors for behavioral research. J Clin Psychol Med Settings. 2013;20(1):33–6.

    Article  PubMed  PubMed Central  Google Scholar 

  55. Fredericks EM, Dore-Stites D, Well A, Magee JC, Freed GL, Shieck V, et al. Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatr Transplant. 2010;14(8):944–53.

    Article  PubMed  PubMed Central  Google Scholar 

  56. Mulchan SS, Valenzuela JM, Crosby LE, Diaz Pow Sang C. Applicability of the SMART model of transition readiness for sickle-cell disease. J Pediatr Psychol. 2015;41(5):543–54.

    Article  PubMed  PubMed Central  Google Scholar 

  57. Gray WN, Schaefer MR, Resmini-Rawlinson A, Wagoner ST. Barriers to transition from pediatric to adult care: a systematic review. J Pediatr Psychol. 2017;43(5):488–502.

    Article  Google Scholar 

Download references

Acknowledgments

The authors express their gratitude to participating adolescent and young adult survivors and their parents.

Funding

This study was supported through philanthropic funds. The writing of this article was supported by a Postdoctoral Fellowship Grant from the American Cancer Society (PF-16-166-01-CPPB) to AP.

Author information

Authors and Affiliations

  1. Division of Oncology, The Children’s Hospital of Philadelphia, Colket Translational Research Building, 3501 Civic Center Boulevard, Philadelphia, PA, 19104, USA

    Alexandra M. Psihogios, Lisa A. Schwartz, Janet A. Deatrick, Elizabeth S. Ver Hoeve, Elicia C. Wartman & Dava Szalda

  2. University of Pennsylvania, Philadelphia, PA, USA

    Lisa A. Schwartz, Janet A. Deatrick & Dava Szalda

  3. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

    Lindsay M. Anderson

Authors
  1. Alexandra M. Psihogios
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Lisa A. Schwartz
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Janet A. Deatrick
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Elizabeth S. Ver Hoeve
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Lindsay M. Anderson
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Elicia C. Wartman
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Dava Szalda
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Alexandra M. Psihogios.

Ethics declarations

Conflict of interest

The authors declare that they have no conflicts of interest.

Ethical approval

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.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Additional information

Publisher’s note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Psihogios, A.M., Schwartz, L.A., Deatrick, J.A. et al. Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents. J Cancer Surviv 13, 620–631 (2019). https://doi.org/10.1007/s11764-019-00781-x

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11764-019-00781-x

Keywords

Search

Navigation