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Supportive Care in Cancer

, Volume 17, Issue 4, pp 349–357 | Cite as

Information and service needs for young adult cancer survivors

  • Brad ZebrackEmail author
Original Article

Abstract

Background

The intent of this study was to examine supportive care needs and preferences among young adult cancer survivors.

Method

Eight hundred seventy-nine young adults aged 18–39 years at time of study and diagnosed with cancer between the ages of 15–35 completed an online survey. Questions assessed the extent to which subjects had utilized various information and supportive care services and/or expressed a desire to use those services either now or in the past.

Results

Upwards of 60% of respondents expressed a desire or need for age-appropriate cancer information, information about diet, exercise, nutrition, complementary and alternative health services, infertility information, mental health counseling, and camp or retreat programs for young adults. In most cases, more than 50% of respondents indicated that their needs for information and services have been unmet. In addition, unmet needs were more likely reported by respondents who were younger at age of diagnosis, of poor physical health status, and less likely to be advanced in work, school, or a committed/marital relationship. Other significant differences in unmet need were observed across sociodemographic and health status variables.

Conclusion

Findings suggest a need to enhance the provision of supportive care services to adolescent and young adult cancer survivors along a continuum of care, from diagnosis through treatment and on to off-treatment survivorship.

Keywords

Young adult Needs assessment Cancer Psychosocial Survivor 

Notes

Acknowledgements

The author wishes to thank the Lymphoma Research Foundation (LRF) for their financial support and to LRF staff members Ms Jennifer Mills, MSW, and Ms Tammy Weitzmann, MSW for their contributions of time and effort to this work. Thanks also to Vickie Yang, Casey Williamson, Minhdan Ta, and Marisa Agama for their contributions to the preparation of this manuscript.

References

  1. 1.
    Abrams AN, Hazen EP et al (2007) Psychosocial issues in adolescents with cancer. Cancer Treat Rev 33:622–630 DOI  10.1016/j.ctrv.2006.12.006 PubMedCrossRefGoogle Scholar
  2. 2.
    American Cancer Society (2006) Cancer facts and figures 2006. American Cancer Society, AtlantaGoogle Scholar
  3. 3.
    Arnett JJ (2000) Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol 55(5):469–480PubMedCrossRefGoogle Scholar
  4. 4.
    Barr RD (2001) The adolescent with cancer. Eur J Cancer 37(12):1523–1530PubMedCrossRefGoogle Scholar
  5. 5.
    Bello LK, McIntire SN (1995) Body image disturbances in young adults with cancer. Implications for the oncology clinical nurse specialist. Cancer Nurs 18(2):138–143PubMedCrossRefGoogle Scholar
  6. 6.
    Bleyer A, Viny A et al (2006) Cancer epidemiology in older adolescents and young adults 15 to 29 years: SEER incidence and survival, 1975–2000. National Cancer Institute, BethesdaGoogle Scholar
  7. 7.
    Bleyer WA (2002) Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, survival, and importance of clinical trials. Med Pediatr Oncol 38(1):1–10PubMedCrossRefGoogle Scholar
  8. 8.
    Bolte S, Zebrack B (2008) Sexual issues in special populations: adolescents and young adults. Seminars in Oncology Nursing 24(2):115–119PubMedCrossRefGoogle Scholar
  9. 9.
    Bonevski B, Sanson-Fisher R et al (2000) Evaluation of an instrument to assess the needs of patients with cancer. Cancer 88:217–225PubMedCrossRefGoogle Scholar
  10. 10.
    Daiter S, Larson RA et al (1988) Psychosocial symptomatology, personal growth, and development among young adult patients following the diagnosis of leukemia or lymphoma. J Clin Oncol 6(4):613–617PubMedGoogle Scholar
  11. 11.
    DeAngelo DJ (2005) The treatment of adolescents and young adults with Acute Lymphoblastic Leukemia. Hematology:123–130Google Scholar
  12. 12.
    Dunn J, Steginga SK (2000) Young women's experience of breast cancer: defining young and identifying concerns. Psycho-oncol 9(2):137–146CrossRefGoogle Scholar
  13. 13.
    Eiser C, Kuperberg A (2007) Psychological support for adolescents and young adults. In: Bleyer A, Barr RD (eds) Cancer in adolescents and young adults. Springer-Verlag, Berlin, Heidelberg, pp 365–374CrossRefGoogle Scholar
  14. 14.
    Evan E, Kaufman M et al (2006) Sexual health and self-esteem in adolescents and young adults with cancer. Cancer 107(7 Suppl):1672–1679PubMedCrossRefGoogle Scholar
  15. 15.
    Evan E, Zeltzer LK (2006) Psychosocial dimensions of cancer in adolescents and young adults. Cancer 107(7):1663–1671PubMedCrossRefGoogle Scholar
  16. 16.
    Felder-Puig R, Formann AK et al (1998) Quality of life and psychosocial adjustment of young patients after treatment of bone cancer. Cancer 83(1):69–75PubMedCrossRefGoogle Scholar
  17. 17.
    Haase JE, Phillips CR (2004) The adolescent/young adult experience. J Pediatr Oncol Nurs 21(3):145–149PubMedCrossRefGoogle Scholar
  18. 18.
    Hughes M (2000) Sexuality and the cancer survivor: a silent coexistence. Cancer Nurs 23(6):477–482PubMedCrossRefGoogle Scholar
  19. 19.
    Lewis IJ (1996) Cancer in adolescence. Br Med Bull 52(4):887–897PubMedGoogle Scholar
  20. 20.
    Mitchell AE, Scarcella DL et al (2004) Cancer in adolescents and young adults: treatment and outcome in Victoria. Med J Aust 180(2):59–62PubMedGoogle Scholar
  21. 21.
    National Cancer Institute (2006) Closing the gap: research and care imperatives for adolescents and young adults with cancer. Report of the Adolescent and Young Adult Oncology Progress Review Group. National Cancer Institute, Bethesda LiveStrong Young Adult AllianceGoogle Scholar
  22. 22.
    Palmer S, Mitchell A et al (2007) Unmet needs among adolescent cancer patients: a pilot study. Palliat Support Care 5:127–134PubMedCrossRefGoogle Scholar
  23. 23.
    Rideout V (2001) Generation Rx.com: how young people use the internet for health information. Henry J. Kaiser Family Foundation, Menlo Park, CAGoogle Scholar
  24. 24.
    Ries LAG, Harkins D et al (2006) SEER cancer statistics review 1975–2003. National Cancer Institute, Bethesda, MDGoogle Scholar
  25. 25.
    Rowland JH (1990) Developmental stage and adaptation: adult model. In: Holland JC, Rowland JH (eds) Oxford University Press, New York, NY chapter 3Google Scholar
  26. 26.
    Shannon C, Smith IE (2003) Breast cancer in adolescents and young women. Eur J Cancer 39(18):2632–2642PubMedCrossRefGoogle Scholar
  27. 27.
    Wenzel L, Dogan-Ates A et al (2005) Defining and measuring reproductive concerns of female cancer survivors. J Natl Cancer Inst 34:94–98Google Scholar
  28. 28.
    White PH (2002) Access to health care: health insurance considerations for young adults with special health care needs/disabilities. Pediatrics 110(6):1328–1335PubMedGoogle Scholar
  29. 29.
    Zebrack B (2008) Information and service needs for young adult cancer patients. Supportive Care in Cancer (in press). DOI  10.1007/s00520-008-0435-z
  30. 30.
    Zebrack B, Chesler MA et al (2007) Psychosocial support. In: Bleyer A, Barr RD (eds) Cancer in adolescents and young adults. Springer-Verlag, Berlin, Heidelberg, pp 375–386CrossRefGoogle Scholar
  31. 31.
    Zebrack BJ, Chesler MA (2000) Managed care: the new context for social work in health care—implications for survivors of childhood cancer and their families. Soc Work Health Care 31(2):89–104PubMedCrossRefGoogle Scholar
  32. 32.
    Zeltzer L (1993) Cancer in adolescents and young adults. Cancer 71(10):3463–3468PubMedCrossRefGoogle Scholar

Copyright information

© Springer-Verlag 2008

Authors and Affiliations

  1. 1.School of Social WorkUniversity of Southern CaliforniaLos AngelesUSA

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