Skip to main content

Advertisement

SpringerLink
Log in

Unmet supportive care needs in young adult cancer patients: associations and changes over time. Results from the AYA-Leipzig study

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

Abstract

Purpose

Coping with cancer at a young adult age (AYA) is a challenge for many patients and raises support needs. We aim to examine unmet supportive care needs and to investigate predictors of and changes in unmet needs over time.

Methods

We surveyed AYAs (18–39 years at time of diagnosis, diagnosis < 4 years) at two time points (t2 = 12 months after t1) using the Supportive Care Needs Survey (SCNS-SF34) among other validated measures. We conducted multiple hierarchical regressions to identify sociodemographic, medical and psychosocial predictors of unmet needs.

Results

A total of 514 AYAs (386 women) with a mean age of 29.6 years participated at both times. Psychological needs (Mt1 = 35.7; Mt2 = 32.09; p = 0.001) and informational needs (Mt1 = 32.18; Mt2 = 29.04; p = 0.021) were the most often reported unmet needs at both measurements and decreased slightly at t2. All other SCNS domains, except for patient care, remained stable over time. Higher supportive needs were associated with greater levels of effort to cope with the disease at both times in all domains. Older age and female gender were significantly associated with two and one of six domains, respectively, at t1 and t2.

Conclusions

AYAs reported primarily unmet psychological and informational needs, which were stable over time and indicated that AYAs do not have sufficient access to the support they need. The degree of effort to cope with cancer plays a key role in terms of unmet support needs.

Implications for Cancer Survivors

Regular screening for this variable in acute and especially follow-up care settings could pave the way for clinicians to offer more targeted support.

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

Abbreviations

AYA:

adolescents and young adults

SCN:

supportive care needs

References

  1. 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. https://www.cancer.gov/types/aya/research /ayao-august-2006.pdf. (accessed January 2018).

  2. Miller KD, Siegel RL, Lin CC, Mariotto AB, Kramer JL, Rowland JH, et al. Cancer treatment and survivorship statistics, 2016. CA Cancer J Clin. 2016;66:271–89.

    Article  Google Scholar 

  3. Kaul S, Fluchel M, Spraker-Perlman H, Parmeter CF, Kirchhoff AC. Health care experiences of long-term survivors of adolescent and young adult cancer. Support Care Cancer. 2016;24:3967–77.

    Article  Google Scholar 

  4. Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol. 2012;30:1221–6.

    Article  Google Scholar 

  5. Harlan LC, Lynch CF, Keegan THM, et al. Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study. J Cancer Surviv. 2011;5(3):305–14.

    Article  Google Scholar 

  6. Quinn GP, Gonçalves V, Sehovic I, Bowman ML, Reed DR. Quality of life in adolescent and young adult cancer patients: a systematic review of the literature. Patient Relat Outcome Meas. 2015;6:19–51.

    Article  Google Scholar 

  7. Geue K, Brähler E, Faller H, Härter M, Schulz H, Weis J, et al. Prevalence of mental disorders and psychosocial distress in German adolescent and young adult cancer patients (AYA). Psycho-Oncol. 2018;27(7):1802–9.

    Article  Google Scholar 

  8. Kaul S, Avila JC, Mutambudzi M, Russell H, Kirchhoff AC, Schwartz CL. Mental distress and health care use among survivors of adolescent and young adult cancer: a cross-sectional analysis of the National Health Interview Survey. Cancer. 2017;123(5):869–78.

    Article  Google Scholar 

  9. Salsman JM, Garcia SF, Yanez B, Sanford SD, Snyder MA, Victorson D. Physical, emotional, and social health differences between posttreatment young adults with cancer and matched healthy controls. Cancer. 2014;120(15):2247–54.

    Article  Google Scholar 

  10. Zebrack BJ, Corbett V, Embry L, Aguilar C, Meeske KA, Hayes-Lattin B, et al. Psychological distress and unsatisfied need for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis. Psycho-Oncol. 2014;23:1267–75.

    Article  Google Scholar 

  11. Galán S, de la Vega R, Miro J. Needs of adolescent and young adults after cancer treatment: a systematic review. Eur J Cancer Care. 2016;27(6):e12558 1–14.

    Article  Google Scholar 

  12. Tsangaris E, Johnson J, Taylor R, Fern L, Bryant-Lukosius D, Barr R, et al. Identifying the supportive care needs of adolescent and young adult survivors of cancer: a qualitative analysis and systematic literature review. Support Care Cancer. 2014;22:947–59.

    Article  Google Scholar 

  13. Bibby H, White V, Thompson K, Anazodo A. What are the unmet needs and care experiences of adolescents and young adults with cancer? A systematic review. J Adolesc Young Adult Oncol. 2017;1:6–30.

    Article  Google Scholar 

  14. Kent EE, Smith AW, Keegan THM, Lynch CF, Wu XC, Hamilton AS, et al. Talking about cancer and meeting peer survivors: social information needs of adolescents and young adults diagnosed with cancer. J Adolesc Young Adult Oncol. 2013;2(2):44–52.

    Article  Google Scholar 

  15. Sawyer SM, McNeil R, McCarthy M, Orme L, Thompson K, Drew S, et al. Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers. Support Care Cancer. 2017;25:2229–39.

    Article  Google Scholar 

  16. Leuteritz K, Friedrich M, Nowe E, Sender A, Stöbel-Richter Y, Geue K. Life situation and psychosocial care of adolescent and young adult (AYA) cancer patients -study protocol of a 12-month prospective longitudinal study. BMC Cancer. 2017;17(1):82.

    Article  Google Scholar 

  17. Leuteritz K, Friedrich M, Nowe E, Sender A, Taubenheim S, Stoebel-Richter Y, et al. Recruiting young adult cancer patients – experiences and sample characteristics from a 12-month longitudinal study. Eur J Oncol Nurs. 2018;36:26–31.

    Article  Google Scholar 

  18. Lehmann C, Koch U, Mehnert A. Psychometric properties of the German version of the Short-Form Supportive Care Needs Survey Questionnaire (SCNS-SF34-G). Support Care Cancer. 2012;20(10):2415–24.

    Article  Google Scholar 

  19. Mehnert A, Müller D, Lehmann C, Koch U. Die deutsche Version des NCCN Distress-Thermometers. Z Klin Psychol Psychiatr Psychother. 2006;54:3.

    Google Scholar 

  20. Hürny C, Bernhard J, Bacchi M, van Wegberg B, et al. The Perceived Adjustment to Chronic Illness Scale (PACIS): a global indicator of coping for operable breast cancer patients in clinical trials. Support Care Cancer. 1993;1:200–8.

    Article  Google Scholar 

  21. Sullivan GM, Feinn R. Using effect size-or why the P value is not enough. J Grad Med Educ. 2012;4(3):279–82.

    Article  Google Scholar 

  22. Zebrack B. Information and service needs for young adult cancer patients. Support Care Cancer. 2008;16:1353–60.

    Article  Google Scholar 

  23. Dyson GJ, Thompson K, Palmer S, Thomas DM, Schofield P. The relationship between unmet needs and distress amongst young people with cancer. Support Care Cancer. 2012;20:75–85.

    Article  Google Scholar 

  24. Barr RD, Ferrari A, Ries L, Whelan J, Bleyer WA. Cancer in adolescent and young adults. A narrative review of the current status and a view of the future. JAMA Pediatr. 2016;170(5):495–501.

    Article  Google Scholar 

  25. Dobinson KA, Hoyt MA, Seidler ZE, Beaumont AL, Hullmann SE, Lawsin CR. A grounded theory investigation into the psychosexual unmet needs of adolescent and young adult cancer survivor. J Adolesc Young Adult Oncol. 2016;5(2):135–45.

    Article  Google Scholar 

  26. Wettergren L, Kent EE, Mitchell SA, Zebrack B, Lynch CF, Rubenstein MB, et al. Cancer negatively impacts on sexual function in adolescents and young adults: the AYA HOPE study. Psycho-oncol. 2017;26(10):1632–9.

    Article  Google Scholar 

  27. Millar B, Patterson P, Desille N. Emerging adulthood and cancer: how unmet needs vary with time since treatment. Pallit Support Care. 2010;8:151–8.

    Article  Google Scholar 

  28. Fern LA, Taylor RM, Whelan J, Pearce S, Grew T, Brooman K, et al. The art of age-appropriate care: reflecting on a conceptual model of cancer experiences for teenager and young adults. Cancer Nurs. 2013;36(5):e27–37.

    Article  Google Scholar 

  29. Boyes AW, Clinton-McHarg T, Waller AE, Steele A, D’Este CA, Sanson-Fisher RW. Prevalence and correlates of the unmet supportive care needs of individuals diagnosed with a haematological malignancy. Acta Oncol. 2015;54:507–14.

    Article  Google Scholar 

  30. Barnett M, McDonnell G, DeRosa A, Schuler T, Philip E, Peterson L, et al. Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA). J Cancer Surviv. 2016;10:814–31.

    Article  Google Scholar 

  31. Federal Statistical Office Germany. Database Query 15 February 2016. https://www-genesis.destatis.de/genesis/online[accessed 27.11.18].

Download references

Funding

This study was funded by a grant from the German Cancer Aid (Grant No.: 110948). Role of the funding source: The German Cancer Aid granted the AYA-Leipzig study.

Author information

Authors and Affiliations

  1. Department of Medical Psychology and Medical Sociology, University of Leipzig, Philipp-Rosenthal-Str. 55, 04103, Leipzig, Germany

    Annekathrin Sender, Michael Friedrich, Katja Leuteritz, Anja Mehnert & Kristina Geue

  2. Medical Clinic II, Hospital St. Elisabeth and St. Barbara, Mauerstr. 5, 06110, Halle (Saale), Germany

    Erik Nowe

  3. Faculty of Managerial and Cultural Studies, University of Zittau/Goerlitz, 30 06 48, Goerlitz, Germany

    Yve Stöbel-Richter

  4. Integrated Research and Treatment Center (IFB), University Medical Center, Leipzig, Germany

    Yve Stöbel-Richter

Authors
  1. Annekathrin Sender
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Michael Friedrich
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Katja Leuteritz
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Erik Nowe
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Yve Stöbel-Richter
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Anja Mehnert
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Kristina Geue
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

The study design and assessments were conceptualized and developed by KG, YSR, AS, KL and MF. The implementation and execution of the study were coordinated by KG, AS, KL, FM and YSR. AS wrote an outline of the paper, which was carefully revised, edited and discussed by KG, KL, MF, AM, EN and YSR. All of the authors have read and approved the final manuscript.

Corresponding author

Correspondence to Annekathrin Sender.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

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

Sender, A., Friedrich, M., Leuteritz, K. et al. Unmet supportive care needs in young adult cancer patients: associations and changes over time. Results from the AYA-Leipzig study. J Cancer Surviv 13, 611–619 (2019). https://doi.org/10.1007/s11764-019-00780-y

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11764-019-00780-y

Keywords

Search

Navigation