Journal Club
Open Access Article

Understanding the Functional Late Effects and Informational Needs of Adult Survivors of Childhood Cancer

Wendy McClellan

Jennifer R. Klemp

Hope Krebill

Robin Ryan

Eve-Lynn Nelson

Jyoti Panicker

Mukta Sharma

Kristin Stegenga

late effects, late effects of cancer treatment, information, Patient education, pediatric cancer, adult cancer survivors
ONF 2013, 40(3), 254-262. DOI: 10.1188/13.ONF.254-262

Purpose/Objectives: To report functional (physical and cognitive) late effects, experiences, and information needs of adult survivors of childhood cancer.

Design: Descriptive, mixed methods survey.

Setting: Two pediatric oncology programs in the Midwest.

Sample: Convenience sample of 272 young adult survivors.

Methods: Voluntary survey completion by young adult survivors regarding late effects, experiences, and educational needs to develop appropriate comprehensive care programs for care provision before, during, and after transition to adult care. Survey domains were identified from existing survivorship literature and focused on all aspects of survivorship; however, this article focuses on results specific to the functional domain.

Main Research Variables: Functional late effects, experiences, information needs, age, gender, and treatment intensity of young adult survivors of childhood cancer.

Findings: Response rate was 48%. Functional late effects, perceptions, and information needs all correlated with intensity of treatment (those survivors most heavily treated experienced the most symptoms). Survivors wanted more information about late effects and how to deal with them. Women wanted more information about fertility-related topics, and participants who received more intense treatment generally wanted more information. Brain tumor survivors perceived greater cognitive difficulties, cognitive late effects, fatigue, and financial difficulties.

Conclusions: Survivors experience myriad physical late effects and require ongoing access to information as needs change over time.

Implications for Nursing: Identifying new and innovative ways to reach survivors and better meet needs is important for care, research, and program development.

Knowledge Translation: The findings of the research underscore the importance of continuous learning opportunities for adult survivors of childhood cancer. The findings also highlight the need for healthcare teams to better understand the current and long-term needs of this population. In addition to traditional communication approaches, technologies such as social media and telemedicine can provide innovative ways to deliver patient-centered care.

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    American Academy of Pediatrics. (2009). Long-term follow-up care for pediatric cancer survivors. Pediatrics, 123, 906-915. doi:10.1542/peds.2008-3688
    Arnett, J. J. (2000). Emerging adulthood. A theory of development from the late teens through the twenties. American Psychologist, 55, 469-480.
    Arora, N. K., Hamilton, A. S., Potosky, A. L., Rowland, J. H., Aziz, N. M., Bellizzi, K. M., … Stevens, J. (2007). Population-based survivorship research using cancer registries: A study of non-Hodgkin lymphoma survivors. Journal of Cancer Survivorship, 1, 49-63. doi:10.1007/s11764-007-0004-3
    Centers for Disease Control and Prevention and the LIVESTRONG Foundation. (2004). A national action plan for cancer survivorship: Advancing public health strategies. Retrieved from
    Children's Oncology Group. (2008). Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers. Retrieved from
    Commission on Cancer. (2011). Cancer program standards 2012: Ensuring patient-centered care. Chicago, IL: American College of Surgeons.
    Ganz, P. A., Casillas, J., & Hahn, E. E. (2008). Ensuring quality care for cancer survivors: Implementing the survivorship care plan. Seminars in Oncology Nursing, 24, 208-217. doi:10.1016/j.soncn.2008.05.009
    Geenen, M. M., Cardous-Ubbink, M. C., Kremer, L. C., van den Bos, C., van der Pal, H. J., Heinen, R. C., … van Leeuwen, F. E. (2007). Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. JAMA, 297, 2705-2715. doi:10.1001/jama.297.24.2705
    Henderson, T. O., Hlubocky, F. J., Wroblewski, K. E., Diller, L., & Daugherty, C. K. (2010). Physician preferences and knowledge gaps regarding the care of childhood cancer survivors: A mailed survey of pediatric oncologists. Journal of Clinical Oncology, 28, 878-883. doi:10.1200/JCO.2009.25.6107
    Hewitt, M., Greenfield, S., & Stovall, E. (2006). From cancer patient to cancer survivor: Lost in transition. Washington, DC: National Academies Press.
    Hewitt, M., Weiner, S. L., & Simone, J. V. (2003). Childhood cancer survivorship: Improving care and quality of life. Washington, DC: National Academies Press.
    Howlader, N., Noone, A. M., Krapcho, M., Neyman, N., Aminou, R., Altekruse, S. F., … Cronin, K. A. (Eds.). (2011). SEER cancer statistics review, 1975-2009. Bethesda, MD: National Cancer Institute.
    Landier, W. (2007). Establishing and enhancing services for childhood cancer survivors: Long-term follow-up program resource guide. Arcadia, CA: Children's Oncology Group.
    National Cancer Institute. (2012). PDQ late effects of treatment for childhood cancer. Bethesda, MD: Author.
    Oeffinger, K. C., Mertens, A. C., Sklar, C. A., Kawashima, T., Hudson, M. M., Meadows, A. T., … Robison, L. L. (2006). Chronic health conditions in adult survivors of childhood cancer. New England Journal of Medicine, 355, 1572-1582. doi:10.1056/NEJMsa060185
    Oeffinger, K. C., & Wallace, W. H. (2006). Barriers to follow-up care of survivors in the United States and the United Kingdom. Pediatric Blood and Cancer, 46, 135-142. doi:10.1002/pbc.20614
    Patton, M. Q. (2002). Qualitative research and evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.
    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 and Cancer, 48, 673-677. doi:10.1002/pbc.21184