Young Adult Cancer Survivors’ Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care

Abstract

We examined correlates of low engagement in the healthcare system, experiences with survivorship care, barriers to follow-up care, and potential resources for promoting follow-up care among young adult survivors of childhood cancers. We conducted a mixed-method study involving surveys of 106 survivors of childhood cancer aged 18–34 recruited from a university-affiliated children’s hospital and an NCI-designated cancer center in the Southeastern USA. Phone-based semistructured interviews were then conducted in a subset of 26. Assessments included health factors, psychosocial factors, healthcare system interaction, and interest in resources to promote engagement in healthcare. Survey participants were on average 22.14 (SD = 3.16) years old, 50.0 % female, and 77.4 % White. Overall, 46.0 % had attended survivorship clinic, 47.2 % reported receiving a treatment summary, 68.9 % had a primary care provider, and 17.0 % reported no interaction with healthcare in the past 2 years. Correlates of less than annual healthcare provider visits included being older (p = 0.003), being male (p < 0.001), lack of insurance (p = 0.002), and having had chemotherapy (p = 0.05). Participants reported varied experiences in terms of how health and treatment information was presented, from none or too little to overwhelming or anxiety-provoking amounts. Barriers to engaging in survivorship care included no/limited insurance, time, or transportation; major life changes; anxiety; and difficulty transitioning from pediatrics to adult care. Participants highlighted the need for educational and psychosocial resources, particularly technology-based resources. Multilevel interventions are needed to increase engagement in survivorship care among young adult cancer survivors. Technology-based resources addressing social support and mental well-being are intervention possibilities.

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References

  1. 1.

    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

    Article  PubMed  PubMed Central  Google Scholar 

  2. 2.

    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 (2006) Childhood cancer survivor study. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med 355(15):1572–1582

    CAS  Article  PubMed  Google Scholar 

  3. 3.

    Boulad F, Sands S, Sklar C (1998) Late complications after bone marrow transplantation in children and adolescents. Curr Probl Pediatr 28(9):273–297

    CAS  PubMed  Google Scholar 

  4. 4.

    Blatt J, Copeland D, Bleyer W (1987) Late effects of childhood cancer and its therapy. In: Pizzo P, Poplack D (eds) Principles and practices of pediatric oncology. JB Lippincott-Raven, Philadelphia, PA, pp 1303–1329

    Google Scholar 

  5. 5.

    Marina N (1997) Long-term survivors of childhood cancer. The medical consequences of cure. Pediatr Clin N Am 44(4):1021–1042

    CAS  Article  Google Scholar 

  6. 6.

    Schwartz CL (1995) Late effects of treatment in long-term survivors of cancer. Cancer Treat Rev 21(4):355–366

    CAS  Article  PubMed  Google Scholar 

  7. 7.

    Oeffinger KC, Hudson MM (2004) Long-term complications following childhood and adolescent cancer: foundations for providing risk-based health care for survivors. Cancer 54(4):208–236

    Google Scholar 

  8. 8.

    Armenian S, Meadows A, Bhatia S (2010) Late effects of childhood cancer and its treatment. In: Pizzo P, Poplack D (eds) Principles and practices of pediatric oncology, chap 47. JB Lippincott-Raven, Philadelphia, PA

    Google Scholar 

  9. 9.

    Long KA, Marsland AL (2011) Family adjustment to childhood cancer: a systematic review. Clin Child Fam Psychol Rev 14(1):57–88

    Article  PubMed  Google Scholar 

  10. 10.

    Zebrack BJ, Gurney JG, Oeffinger K, Whitton J, Packer RJ, Mertens A, Turk N, Castleberry R, Dreyer Z, Robison LL, Zeltzer LK (2004) Psychological outcomes in long-term survivors of childhood brain cancer: a report from the childhood cancer survivor study. J Clin Oncol 22(6):999–1006

    Article  PubMed  Google Scholar 

  11. 11.

    Kazak AE, Derosa BW, Schwartz LA, Hobbie W, Carlson C, Ittenbach RF, Mao JJ, Ginsberg JP (2010) Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls. J Clin Oncol 28(12):2002–2007

    Article  PubMed  PubMed Central  Google Scholar 

  12. 12.

    Zebrack BJ, Landier W (2011) The perceived impact of cancer on quality of life for post-treatment survivors of childhood cancer. Qual Life Res 20(10):1595–1608

    Article  PubMed  Google Scholar 

  13. 13.

    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 

  14. 14.

    Children’s Oncology Group (2008) Long-term follow-up guidelines for survivors of childhood, adolescent and young adult cancers, version 3.0. Children’s Oncology Group, Arcadia, CA. http://www.survivorshipguidelines.org

  15. 15.

    Commission on Cancer and American College of Surgeons. New commission on Cancer accreditation standards gain strong support from four national cancer advocacy organizations. Press release issued online August 31, 2011 at http://www.facs.org/news/2011/coc-standards0811.html. 2011

  16. 16.

    National Research Council (2005) From cancer patient to cancer survivor: lost in transition. The National Academies Press

  17. 17.

    Houlihan NG (2009) Transitioning to cancer survivorship: plans of care. Oncology (Williston Park NY) 23(8 Suppl):42–48

    Google Scholar 

  18. 18.

    McCollum K (2012) Identifying barriers to cancer survivorship programs. Oncology Nurse Advisor

  19. 19.

    Nathan PC, Ford JS, Henderson TO, Hudson MM, Emmons KM, Casillas JN, Lown EA, Ness KK, Oeffinger KC (2009) Health behaviors, medical care, and interventions to promote healthy living in the childhood cancer survivor study cohort. J Clin Oncol 27(14):2363–2373

    Article  PubMed  PubMed Central  Google Scholar 

  20. 20.

    Sommers B (2012) Number of young adults gaining insurance due to the Affordable Care Act now tops 3 million, A.f. ASPE Issue Brief. US Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, Washington, DC. Editor. http://www.aspe.hhs.gov/aspe/gaininginsurance/rb.pdf

  21. 21.

    Centers for Medicare and Medicaid Services, Center for Consumer Information and Insurance Oversight 2013 Young adults and the Affordable Care Act: protecting young adults and eliminating burdens on families and businesses. Editor. http://www.cms.gov/CCIIO/Resources/Files/adult_child_fact_sheet.html

  22. 22.

    Park ER, Li FP, Liu Y, Emmons KM, Ablin A, Robison LL, Mertens AC (2005) Childhood cancer survivor study. Health insurance coverage in survivors of childhood cancer: the childhood cancer survivor study. J Clin Oncol 23(36):9187–9197

    Article  PubMed  Google Scholar 

  23. 23.

    Strauser D, Feuerstein M, Chan F, Arango J, da Silva Cardoso E, Chiu CY (2010) Vocational services associated with competitive employment in 18–25 year old cancer survivors. J Cancer Surviv 4(2):179–186

    Article  PubMed  Google Scholar 

  24. 24.

    Oeffinger KC, Wallace WH (2006) Barriers to follow-up care of survivors in the United States and the United Kingdom. Pediatr Blood Cancer 46(2):135–142

    Article  PubMed  Google Scholar 

  25. 25.

    Zeltzer LK, Recklitis C, Buchbinder D, Zebrack B, Casillas J, Tsao JC, Lu Q, Krull K (2009) Psychological status in childhood cancer survivors: a report from the childhood cancer survivor study. J Clin Oncol 27(14):2396–2404

    Article  PubMed  PubMed Central  Google Scholar 

  26. 26.

    Rosenstock IM (1974) The health belief model and preventive health behavior. Health Educ Monogr 2(4):354–386

    Article  Google Scholar 

  27. 27.

    Ivankova NV, Creswell JW, Stick SL (2006) Using mixed-methods sequential explanatory design: from theory to practice. Field Methods 18(1):3–20

    Article  Google Scholar 

  28. 28.

    DiMatteo MR, Haskard KB, Williams SL (2007) Health beliefs, disease severity, and patient adherence: a meta-analysis. Med Care 45(6):521–528

    Article  PubMed  Google Scholar 

  29. 29.

    Kroenke K, Spitzer RL (2002) The PHQ-9: a new depression diagnostic and severity measure. Psychiatr Ann 32(9):1–7

    Article  Google Scholar 

  30. 30.

    Zimet GD, Powell SS, Farley GK, Werkman S, Berkoff KA (1988) The multidimensional scale of perceived social support. J Pers Assess 52:30–41

    Article  Google Scholar 

  31. 31.

    Morgan DL, Krueger RA (1998) The focus group kit. Sage, Thousand Oaks, CA

    Google Scholar 

  32. 32.

    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. J Cancer Surviv 7(3):275–282

    Article  PubMed  Google Scholar 

  33. 33.

    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

    Article  PubMed  PubMed Central  Google Scholar 

  34. 34.

    Klosky JL, Cash DK, Buscemi J, Lensing S, Garces-Webb DM, Zhao W, Wiard S, Hudson MM (2008) Factors influencing long-term follow-up clinic attendance among survivors of childhood cancer. J Cancer Surviv 2(4):225–232

    Article  PubMed  PubMed Central  Google Scholar 

  35. 35.

    National Institute of Health Care Management Foundation (2006) Young people’s health care: a national imperitive. National Institute of Health Care Management Foundation, Rockville, MD

  36. 36.

    Hobbie WL, Stuber M, Meeske K, Wissler K, Rourke MT, Ruccione K, Hinkle A, Kazak AE (2000) Symptoms of posttraumatic stress in young adult survivors of childhood cancer. J Clin Oncol 18(24):4060–4066

    CAS  PubMed  Google Scholar 

  37. 37.

    Rabin C, Simpson N, Morrow K, Pinto B (2011) Behavioral and psychosocial program needs of young adult cancer survivors. Qual Health Res 21(6):796–806

    Article  PubMed  Google Scholar 

  38. 38.

    Berg CJ, Stratton E, Giblin J, Esiashvili N, Mertens A (2014) Pilot results of an online intervention targeting health promoting behaviors among young adult cancer survivors. Psycho-Oncology

  39. 39.

    Reeves WC, Strine TW, Thompson W, Ahluwalia I, Dhingra SS, McKnight-Eily LR, Harrison L, D’Angelo DV, Williams L, Morrow B, Gould D, Safran MA (2011) Mental illness surveillance among adults in the United States. Morb Mortal Wkly Rep Surveill Summ 60(Suppl 3):1–29

    Google Scholar 

Download references

Acknowledgments

This work was supported by the Georgia Cancer Coalition (PI: Berg), the National Cancer Institute (PI: Berg;5K07CA139114), the Emery Egleston Children’s Research Center (PI: Esiashvili), and the Winship CancerInstitute Kennedy Survivorship Award (PI: Berg)

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The authors declare no conflict of interest.

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Correspondence to Carla J. Berg.

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Berg, C.J., Stratton, E., Esiashvili, N. et al. Young Adult Cancer Survivors’ Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care. J Canc Educ 31, 430–442 (2016). https://doi.org/10.1007/s13187-015-0853-9

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Keywords

  • Survivorship care plans
  • Transition to survivorship
  • Young adults
  • Childhood cancer