Developmental differences in health-related quality of life in adolescent and young adult cancer survivors

Abstract

Purpose

Adolescents and young adults (AYAs) experience developmental transitions. AYA survivors of cancer are at risk for chronic health conditions due to treatment. This study examined developmental differences in AYA survivors’ health-related quality of life (HRQOL) between age groups and compared to population norms.

Methods

HRQOL was assessed in AYA survivors of cancer (diagnosed before age 30) in long-term follow-up. Cancer survivors who were 12–39 years old at survey completion and completed therapy ≥ 2 years ago were included. HRQOL was assessed using the PedsQL™ and FACT.

Results

Sample size was 155 survivors. PedsQL™ school functioning was worse in 15–17 year olds compared to 12–14 year olds (66.35 vs 77.60, p = 0.012). Compared to population norms, PedsQL™ outcomes were only worse in survivors’ school functioning. Survivors’ 18–39 years old had FACT scores that were better than population norms for overall HRQOL (91.33 vs 80.1, p < 0.001), and in physical (24.22 vs 22.7, p < 0.001), social (23.46 vs 19.1, p < 0.001), and functional well-being (22.94 vs 18.5, p < 0.001). Regression analysis identified that survivors who were < 15 years old and had not relapsed, and survivors who were 15–18 years old and had ≥ 2 late effects are at highest risk of lower HRQOL. For older survivors the highest risk group for lower HRQOL were < 21 years old at survey completion, > 7 years old at diagnosis and > 6 years post therapy.

Conclusion

A trend in school functioning issues in older adolescent survivors emerged. Older survivors show improved HRQOL when compared to the general population. Those further off therapy are at risk of poor HRQOL.

This is a preview of subscription content, access via your institution.

Fig. 1
Fig. 2

References

  1. 1.

    Butow, P., Palmer, S., Pai, A., Goodenough, B., Luckett, T., & King, M. (2010). Review of adherence-related issues in adolescents and young adults with cancer. Journal of Clinical Oncology, 28(32), 4800–4809. https://doi.org/10.1200/JCO.2009.22.2802.

    PubMed  Article  Google Scholar 

  2. 2.

    Geiger, A. M., & Castellino, S. M. (2011). Delineating the age ranges used to define adolescents and young adults. Journal of Clinical Oncology, 29(16), e492–493. https://doi.org/10.1200/JCO.2011.35.5602.

    PubMed  Article  Google Scholar 

  3. 3.

    Dante, C., & Fred, R. (2002). A developmental psychopathology perspective on adolescence. Journal of Consulting and Clinical Psychology, 70(1), 6–20.

    Article  Google Scholar 

  4. 4.

    Arnett, J. J. (2000). Emerging adulthood. A theory of development from the late teens through the twenties. American Psychologist, 55(5), 469–480.

    CAS  PubMed  Article  Google Scholar 

  5. 5.

    Nelson, L. J. (2005). Distinguishing features of emerging adulthood. Journal of Adolescent Research, 20, 242–262. https://doi.org/10.1177/0743558404273074.

    Article  Google Scholar 

  6. 6.

    Nelson, L. J., Padilla-Walker, L. M., Carroll, J. S., Madsen, S. D., Barry, C. M., & Badger, S. (2007). "If you want me to treat you like an adult, start acting like one!" Comparing the criteria that emerging adults and their parents have for adulthood. Journal of Family Psychology, 21(4), 665–674. https://doi.org/10.1037/0893-3200.21.4.665.

    PubMed  Article  Google Scholar 

  7. 7.

    Landier, W., Bhatia, S., Eshelman, D. A., Forte, K. J., Sweeney, T., Hester, A. L., et al. (2004). Development of risk-based guidelines for pediatric cancer survivors: The Children's Oncology Group long-term follow-up guidelines from the children's oncology group late effects committee and nursing discipline. Journal of Clinical Oncology, 22(24), 4979–4990. https://doi.org/10.1200/JCO.2004.11.032.

    PubMed  Article  Google Scholar 

  8. 8.

    Survivorshipguidelines.org.

  9. 9.

    Badr, H., Chandra, J., Paxton, R. J., Ater, J. L., Urbauer, D., Cruz, C. S., et al. (2013). Health-related quality of life, lifestyle behaviors, and intervention preferences of survivors of childhood cancer. Journal of Cancer Survivorship, 7(4), 523–534. https://doi.org/10.1007/s11764-013-0289-3.

    PubMed  Article  Google Scholar 

  10. 10.

    Tai, E., Buchanan, N., Townsend, J., Fairley, T., Moore, A., & Richardson, L. C. (2012). Health status of adolescent and young adult cancer survivors. Cancer, 118(19), 4884–4891. https://doi.org/10.1002/cncr.27445.

    PubMed  PubMed Central  Article  Google Scholar 

  11. 11.

    Quinn, G. P., Goncalves, V., Sehovic, I., Bowman, M. L., & Reed, D. R. (2015). Quality of life in adolescent and young adult cancer patients: A systematic review of the literature. Patient Related Outcome Measures, 6, 19–51. https://doi.org/10.2147/PROM.S51658.

    PubMed  PubMed Central  Article  Google Scholar 

  12. 12.

    Langeveld, N. E., Grootenhuis, M. A., Voute, P. A., de Haan, R. J., & van den Bos, C. (2004). Quality of life, self-esteem and worries in young adult survivors of childhood cancer. Psychooncology, 13(12), 867–881. https://doi.org/10.1002/pon.800.

    CAS  PubMed  Article  Google Scholar 

  13. 13.

    Geue, K., Schmidt, R., Sender, A., Sauter, S., & Friedrich, M. (2015). Sexuality and romantic relationships in young adult cancer survivors: Satisfaction and supportive care needs. Psychooncology, 24(11), 1368–1376. https://doi.org/10.1002/pon.3805.

    PubMed  Article  Google Scholar 

  14. 14.

    Levin Newby, W., Brown, R. T., Pawletko, T. M., Gold, S. H., & Whitt, J. K. (2000). Social skills and psychological adjustment of child and adolescent cancer survivors. Psychooncology, 9(2), 113–126.

    CAS  PubMed  Article  Google Scholar 

  15. 15.

    Pendley, J. S., Dahlquist, L. M., & Dreyer, Z. (1997). Body image and psychosocial adjustment in adolescent cancer survivors. Journal of Pediatric Psychology, 22(1), 29–43.

    CAS  PubMed  Article  Google Scholar 

  16. 16.

    Tremolada, M., Bonichini, S., Taverna, L., Basso, G., & Pillon, M. (2018). Health-related quality of life in AYA cancer survivors who underwent HSCT compared with healthy peers. European Journal of Cancer Care (England), 27(6), e12878. https://doi.org/10.1111/ecc.12878.

    Article  Google Scholar 

  17. 17.

    Smith, A. W., Bellizzi, K. M., Keegan, T. H., Zebrack, B., Chen, V. W., Neale, A. V., et al. (2013). Health-related quality of life of adolescent and young adult patients with cancer in the United States: The Adolescent and Young Adult Health Outcomes and Patient Experience study. Journal of Clinical Oncology, 31(17), 2136–2145. https://doi.org/10.1200/JCO.2012.47.3173.

    PubMed  PubMed Central  Article  Google Scholar 

  18. 18.

    Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0: Reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Medical Care, 39(8), 800–812.

    CAS  PubMed  Article  Google Scholar 

  19. 19.

    Cella, D. F., Tulsky, D. S., Gray, G., Sarafian, B., Linn, E., Bonomi, A., et al. (1993). The Functional Assessment of Cancer Therapy scale: Development and validation of the general measure. Journal of Clinical Oncology, 11(3), 570–579. https://doi.org/10.1200/JCO.1993.11.3.570.

    CAS  PubMed  Article  Google Scholar 

  20. 20.

    Brucker, P. S., Yost, K., Cashy, J., Webster, K., & Cella, D. (2005). General population and cancer patient norms for the Functional Assessment of Cancer Therapy-General (FACT-G). Evaluation and the Health Professions, 28(2), 192–211. https://doi.org/10.1177/0163278705275341.

    PubMed  Article  Google Scholar 

  21. 21.

    Facit.org.

  22. 22.

    McQuellon, R. P., Russell, G. B., Cella, D. F., Craven, B. L., Brady, M., Bonomi, A., et al. (1997). Quality of life measurement in bone marrow transplantation: Development of the Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) scale. Bone Marrow Transplantation, 19(4), 357–368. https://doi.org/10.1038/sj.bmt.1700672.

    CAS  PubMed  Article  Google Scholar 

  23. 23.

    Werba, B. E., Hobbie, W., Kazak, A. E., Ittenbach, R. F., Reilly, A. F., & Meadows, A. T. (2007). Classifying the intensity of pediatric cancer treatment protocols: The intensity of treatment rating scale 2.0 (ITR-2). Pediatric Blood & Cancer, 48(7), 673–677. https://doi.org/10.1002/pbc.21184.

    Article  Google Scholar 

  24. 24.

    Kazak, A. E., Hocking, M. C., Ittenbach, R. F., Meadows, A. T., Hobbie, W., DeRosa, B. W., et al. (2012). A revision of the intensity of treatment rating scale: Classifying the intensity of pediatric cancer treatment. Pediatric Blood & Cancer, 59(1), 96–99. https://doi.org/10.1002/pbc.23320.

    Article  Google Scholar 

  25. 25.

    Lemon, S. C., Roy, J., Clark, M. A., Friedmann, P. D., & Rakowski, W. (2003). Classification and regression tree analysis in public health: Methodological review and comparison with logistic regression. Annals of Behavioral Medicine, 26(3), 172–181. https://doi.org/10.1207/S15324796ABM2603_02.

    PubMed  Article  Google Scholar 

  26. 26.

    Ghaderi, S., Engeland, A., Gunnes, M. W., Moster, D., Ruud, E., Syse, A., et al. (2016). Educational attainment among long-term survivors of cancer in childhood and adolescence: A Norwegian population-based cohort study. Journal of Cancer Survivorship, 10(1), 87–95. https://doi.org/10.1007/s11764-015-0453-z.

    PubMed  Article  Google Scholar 

  27. 27.

    Tremolada, M., Taverna, L., Bonichini, S., Basso, G., & Pillon, M. (2017). Self-Esteem and academic difficulties in preadolescents and adolescents healed from paediatric leukaemia. Cancers (Basel). https://doi.org/10.3390/cancers9060055.

    Article  Google Scholar 

  28. 28.

    Jacola, L. M., Edelstein, K., Liu, W., Pui, C. H., Hayashi, R., Kadan-Lottick, N. S., et al. (2016). Cognitive, behaviour, and academic functioning in adolescent and young adult survivors of childhood acute lymphoblastic leukaemia: A report from the Childhood Cancer Survivor Study. Lancet Psychiatry, 3(10), 965–972. https://doi.org/10.1016/S2215-0366(16)30283-8.

    PubMed  PubMed Central  Article  Google Scholar 

  29. 29.

    Bonneau, J., Berbis, J., Michel, G., Vercasson, C., Bertrand, Y., Ansoborlo, S., et al. (2018). Adolescence and socioeconomic factors: Key factors in the long-term impact of leukemia on scholastic performance—A LEA study. Journal of Pediatrics. https://doi.org/10.1016/j.jpeds.2018.09.047.

    PubMed  Article  Google Scholar 

  30. 30.

    Drost, F. M., Mols, F., Kaal, S. E., Stevens, W. B., van der Graaf, W. T., Prins, J. B., et al. (2016). Psychological impact of lymphoma on adolescents and young adults: Not a matter of black or white. Journal of Cancer Survivorship, 10(4), 726–735. https://doi.org/10.1007/s11764-016-0518-7.

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  31. 31.

    Annunziata, M. A., Muzzatti, B., Flaiban, C., Gipponi, K., Carnaghi, C., Tralongo, P., et al. (2018). Long-term quality of life profile in oncology: A comparison between cancer survivors and the general population. Supportive Care in Cancer, 26(2), 651–656. https://doi.org/10.1007/s00520-017-3880-8.

    PubMed  Article  Google Scholar 

  32. 32.

    Lang, M. J., Giese-Davis, J., Patton, S. B., & Campbell, D. J. T. (2018). Does age matter? Comparing post-treatment psychosocial outcomes in young adult and older adult cancer survivors with their cancer-free peers. Psychooncology, 27(5), 1404–1411. https://doi.org/10.1002/pon.4490.

    PubMed  Article  Google Scholar 

  33. 33.

    Hall, A. E., Boyes, A. W., Bowman, J., Walsh, R. A., James, E. L., & Girgis, A. (2012). Young adult cancer survivors' psychosocial well-being: A cross-sectional study assessing quality of life, unmet needs, and health behaviors. Supportive Care in Cancer, 20(6), 1333–1341. https://doi.org/10.1007/s00520-011-1221-x.

    PubMed  Article  Google Scholar 

  34. 34.

    Essig, S., von der Weid, N. X., Strippoli, M. P., Rebholz, C. E., Michel, G., Rueegg, C. S., et al. (2012). Health-related quality of life in long-term survivors of relapsed childhood acute lymphoblastic leukemia. PLoS ONE, 7(5), e38015. https://doi.org/10.1371/journal.pone.0038015.

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  35. 35.

    Tremolada, M., Bonichini, S., Basso, G., & Pillon, M. (2016). Perceived social support and health-related quality of life in AYA cancer survivors and controls. Psychooncology, 25(12), 1408–1417. https://doi.org/10.1002/pon.4072.

    PubMed  Article  Google Scholar 

  36. 36.

    Zamora, E. R., Yi, J., Akter, J., Kim, J., Warner, E. L., & Kirchhoff, A. C. (2017). 'Having cancer was awful but also something good came out': Post-traumatic growth among adult survivors of pediatric and adolescent cancer. European Journal of Oncology Nursing, 28, 21–27. https://doi.org/10.1016/j.ejon.2017.02.001.

    PubMed  Article  Google Scholar 

  37. 37.

    Le, R. Q., Bevans, M., Savani, B. N., Mitchell, S. A., Stringaris, K., Koklanaris, E., et al. (2010). Favorable outcomes in patients surviving 5 or more years after allogeneic hematopoietic stem cell transplantation for hematologic malignancies. Biology of Blood and Marrow Transplantation, 16(8), 1162–1170. https://doi.org/10.1016/j.bbmt.2010.03.005.

    CAS  PubMed  PubMed Central  Article  Google Scholar 

  38. 38.

    Khimani, N., Chen, Y. H., Mauch, P. M., Recklitis, C., Diller, L., Silver, B., et al. (2013). Influence of new late effects on quality of life over time in Hodgkin lymphoma Survivors: A longitudinal survey study. Annals of Oncology, 24(1), 226–230. https://doi.org/10.1093/annonc/mds243.

    CAS  PubMed  Article  Google Scholar 

  39. 39.

    Crom, D. B., Chathaway, D. K., Tolley, E. A., Mulhern, R. K., & Hudson, M. M. (1999). Health status and health-related quality of life in long-term adult survivors of pediatric solid tumors. International Journal of Cancer Supplement, 12, 25–31.

    CAS  Article  Google Scholar 

  40. 40.

    Yi, J., Kim, M. A., & Tian, T. (2014). Perceived long-term and physical health problems after cancer: Adolescent and young adult survivors of childhood cancer in Korea. Eur J Oncol Nurs, 18(2), 145–150. https://doi.org/10.1016/j.ejon.2013.11.006.

    PubMed  Article  Google Scholar 

  41. 41.

    Dowling, E. C., Chawla, N., Forsythe, L. P., de Moor, J., McNeel, T., Rozjabek, H. M., et al. (2013). Lost productivity and burden of illness in cancer survivors with and without other chronic conditions. Cancer, 119(18), 3393–3401. https://doi.org/10.1002/cncr.28214.

    PubMed  PubMed Central  Article  Google Scholar 

  42. 42.

    Varni, J. W., & Limbers, C. A. (2009). The PedsQL 4.0 Generic Core Scales Young Adult Version: Feasibility, reliability and validity in a university student population. Journal of Health Psychology, 14(4), 611–622. https://doi.org/10.1177/1359105309103580.

    PubMed  Article  Google Scholar 

Download references

Author information

Affiliations

Authors

Corresponding author

Correspondence to Kerri Becktell.

Ethics declarations

Conflict of interest

All authors declare that they have no conflict 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

Verify currency and authenticity via CrossMark

Cite this article

Becktell, K., Simpson, P., Phelan, R. et al. Developmental differences in health-related quality of life in adolescent and young adult cancer survivors. Qual Life Res 29, 2435–2444 (2020). https://doi.org/10.1007/s11136-020-02507-4

Download citation

Keywords

  • AYA
  • Adolescent and young adult
  • Development
  • Quality of life
  • Cancer survivorship
  • Childhood cancer