Journal of Cancer Survivorship

, Volume 6, Issue 3, pp 239–250

Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study

  • Theresa H. M. Keegan
  • Daphne Y. Lichtensztajn
  • Ikuko Kato
  • Erin E. Kent
  • Xiao-Cheng Wu
  • Michelle M. West
  • Ann S. Hamilton
  • Brad Zebrack
  • Keith M. Bellizzi
  • Ashley W. Smith
  • and the AYA HOPE Study Collaborative Group
Article

DOI: 10.1007/s11764-012-0219-9

Cite this article as:
Keegan, T.H.M., Lichtensztajn, D.Y., Kato, I. et al. J Cancer Surviv (2012) 6: 239. doi:10.1007/s11764-012-0219-9

Abstract

Purpose

We described unmet information and service needs of adolescent and young adult (AYA) cancer survivors (15–39 years of age) and identified sociodemographic and health-related factors associated with these unmet needs.

Methods

We studied 523 AYAs recruited from seven population-based cancer registries, diagnosed with acute lymphocytic leukemia, Hodgkin’s lymphoma, non-Hodgkin’s lymphoma, germ cell cancer, or sarcoma in 2007–2008. Participants completed surveys a median of 11 months from diagnosis. Multivariable logistic regression analyses were used to estimate associations between unmet (information and service) needs and sociodemographic and health-related factors.

Results

More than half of AYAs had unmet information needs relating to their cancer returning and cancer treatments. AYAs needing services, but not receiving them, ranged from 29 % for in-home nursing to 75 % for a support group. The majority of AYAs who needed a pain management expert, physical/occupational therapist, mental health worker, or financial advice on paying for health care did not receive services. In multivariable analyses, older participants, men, participants of non-white race/ethnicity, and participants who reported less than excellent general health or fair/poor quality of care were more likely to report unmet information needs. Factors associated with both unmet service and information needs included physical health or emotional problems interfering with social activities or having ≥3 physical treatment-related symptoms.

Conclusions

Recently diagnosed AYA cancer survivors have substantial unmet information needs varying by demographic and health-related factors.

Implications for cancer survivors

We identified subgroups of AYA cancer survivors with high unmet needs that can be targeted for interventions and referrals.

Keywords

Adolescent Young adult Cancer survivor Information needs Service needs 

Copyright information

© Springer Science+Business Media, LLC 2012

Authors and Affiliations

  • Theresa H. M. Keegan
    • 1
    • 2
  • Daphne Y. Lichtensztajn
    • 1
  • Ikuko Kato
    • 3
  • Erin E. Kent
    • 4
    • 5
  • Xiao-Cheng Wu
    • 6
  • Michelle M. West
    • 7
  • Ann S. Hamilton
    • 8
  • Brad Zebrack
    • 9
  • Keith M. Bellizzi
    • 10
  • Ashley W. Smith
    • 11
  • and the AYA HOPE Study Collaborative Group
  1. 1.Cancer Prevention Institute of CaliforniaFremontUSA
  2. 2.School of MedicineStanford UniversityStanfordUSA
  3. 3.Department of Oncology and PathologyWayne State UniversityDetroitUSA
  4. 4.Cancer Prevention Fellowship, National Cancer InstituteNational Institutes of HealthBethesdaUSA
  5. 5.Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, National Cancer InstituteNational Institutes of HealthBethesdaUSA
  6. 6.Epidemiology Program, School of Public HealthLouisiana State University Health Sciences CenterNew OrleansUSA
  7. 7.Department of EpidemiologyUniversity of IowaIowa CityUSA
  8. 8.Keck School of Medicine at the University of Southern CaliforniaLos AngelesUSA
  9. 9.School of Social WorkUniversity of MichiganAnn ArborUSA
  10. 10.Department of Human Development and Family StudiesUniversity of ConnecticutMansfieldUSA
  11. 11.Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer InstituteNational Institutes of HealthBethesdaUSA