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

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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.

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Acknowledgments

This study is supported by contract numbers N01-PC-54402, N01-PC-54404, N01-PC-35136, N01-PC-35139, N01-PC-35142, N01-PC-35143, and N01-PC-35145.

AYA HOPE Study Collaborative Group:

California Cancer Registry/Public Health Institute (Sacramento, CA, USA): Rosemary Cress, DrPH (P.I.); Gretchen Agha; and Mark Cruz.

Fred Hutchinson Cancer Research Center (Seattle, WA, USA): Stephen M. Schwartz, Ph.D. (P.I.); Martha Shellenberger; and Tiffany Janes.

Karmanos Cancer Center (Detroit, MI, USA): Ikuko Kato, Ph.D. (P.I.); Ann Bankowski; and Marjorie Stock.

Louisiana State University (New Orleans, LA, USA): Xiao-Cheng Wu, M.D., MPH (P.I.); Vivien Chen; Bradley Tompkins

Cancer Prevention Institute of California (Fremont, CA, USA): Theresa Keegan, Ph.D., M.S. (P.I.); Laura Allen; Zinnia Loya; and Karen Hussain.

University of Iowa (Iowa City, IA, USA): Charles F. Lynch M.D., Ph.D. (P.I.); Michele M. West, Ph.D.; and Lori A. Odle, R.N.

University of Southern California (Los Angeles, CA, USA): Ann Hamilton, Ph.D. (P.I.); Jennifer Zelaya; Mary Lo; and Urduja Trinidad.

National Cancer Institute (Bethesda, MD, USA): Linda C. Harlan, BSN, MPH, Ph.D. (investigator); Ashley Wilder Smith, Ph.D., MPH (co-investigator); Sonja M. Stringer, MPH; and Gretchen Keel, BS, BA.

Consultants: Arnold Potosky, PhD.; Keith Bellizzi, Ph.D.; Karen Albritton, MD, Michael Link, MD; and Brad Zebrack, Ph.D., MSW.

Author information

Authors and Affiliations

  1. Cancer Prevention Institute of California, 2201 Walnut Avenue, Suite 300, Fremont, CA, 94538, USA

    Theresa H. M. Keegan & Daphne Y. Lichtensztajn

  2. School of Medicine, Stanford University, Stanford, CA, USA

    Theresa H. M. Keegan

  3. Department of Oncology and Pathology, Wayne State University, Detroit, MI, USA

    Ikuko Kato

  4. Cancer Prevention Fellowship, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA

    Erin E. Kent

  5. Office of Cancer Survivorship, Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA

    Erin E. Kent

  6. Epidemiology Program, School of Public Health, Louisiana State University Health Sciences Center, New Orleans, LA, USA

    Xiao-Cheng Wu

  7. Department of Epidemiology, University of Iowa, Iowa City, IA, USA

    Michelle M. West

  8. Keck School of Medicine at the University of Southern California, Los Angeles, CA, USA

    Ann S. Hamilton

  9. School of Social Work, University of Michigan, Ann Arbor, MI, USA

    Brad Zebrack

  10. Department of Human Development and Family Studies, University of Connecticut, Mansfield, CT, USA

    Keith M. Bellizzi

  11. Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Bethesda, MD, USA

    Ashley W. Smith

Authors
  1. Theresa H. M. Keegan
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  2. Daphne Y. Lichtensztajn
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  3. Ikuko Kato
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  4. Erin E. Kent
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  5. Xiao-Cheng Wu
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  6. Michelle M. West
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  7. Ann S. Hamilton
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  8. Brad Zebrack
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  9. Keith M. Bellizzi
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  10. Ashley W. Smith
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and the AYA HOPE Study Collaborative Group

Corresponding author

Correspondence to Theresa H. M. Keegan.

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Keegan, T.H.M., Lichtensztajn, D.Y., Kato, I. et al. Unmet adolescent and young adult cancer survivors information and service needs: a population-based cancer registry study. J Cancer Surviv 6, 239–250 (2012). https://doi.org/10.1007/s11764-012-0219-9

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  • DOI: https://doi.org/10.1007/s11764-012-0219-9

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