Abstract
Purpose
To examine whether childhood cancer survivors’ perceptions of the impact of cancer are related to quality of life (QOL) and psychological distress.
Methods
621 survivors (aged 18–39 years) completed a mailed survey assessing distress and QOL. Hierarchical linear regression models analyzed the independent effects of perceived impacts of cancer on distress and QOL and the extent to which positive and negative perceptions attenuated the effects of covariates on outcomes.
Results
After accounting for perceptions of cancer’s impact on their lives, employment/occupation status, marital/relationship status, and health problems were observed to be significant predictors of QOL and distress. Psychological distress and the mental health component of QOL appeared to be less influenced by sociodemographic status and health problems and more a function of how survivors perceive cancer as impacting their lives.
Conclusions
Results suggest that distress and QOL are partially a function of survivors’ perceptions of how cancer has affected them and continues to affect them in both positive and negative ways. Future research is needed to examine combinations of pharmacological, psychological and/or social interventions that are likely to result in better outcomes in this population.
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References
Green, D. M., Hyland, A., Chung, C. S., Zevon, M. A., & Hall, B. C. (1999). Cancer and cardiac mortality among 15-year survivors of cancer diagnosed during childhood or adolescence. Journal of Clinical Oncology, 17, 3207–3215.
Mertens, A., Yasui, Y., Neglia, J., Potter, J., Nesbit, M., Ruccione, K., et al. (2001). Late mortality experience in five-year survivors of childhood and adolescent cancer: The childhood cancer survivor study. Journal of Clinical Oncology, 19, 3163–3172.
Neglia, J. P., Friedman, D. L., Yasui, Y., Mertens, A. C., Hammond, S., Stovall, M., et al. (2001). Second malignant neoplasms in five-year survivors of childhood cancer: Childhood cancer survivor study. Journal of the National Cancer Institute, 93, 618–629.
Hudson, M. M., Strickland, D. K., Phipps, S., Srivastava, D. K., Ribeiro, R. C., Rubnitz, J. E., et al. (2000). Late effects of treatment in survivors of childhood acute myeloid leukemia. Journal of Clinical Oncology, 18, 3273–3279.
Schover, L. R. (1999). Psychosocial aspects of infertility and decisions about reproduction in young cancer survivors: A review. Medical and Pediatric Oncology, 33, 53–59.
Ness, K. K., & Gurney, J. G. (2007). Adverse late effects of childhood cancer and its treatment on health and performance. Annual Review of Public Health, 28, 279–302.
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 survivors of pediatric solid tumors. International Journal of Cancer, 83, 25–31.
Challinor, J., Miaskowski, C., Moore, I., Slaughter, R., & Franck, L. (2000). Review of research studies that evaluated the impact of treatment for childhood cancers on neurocognition and behavioral and social competence: Nursing implications. Journal of the Society of Pediatric Nurses, 5, 57–74.
Mulhern, R. K., Kepner, J. L., Thomas, P. R., Armstrong, F. D., Friedman, H. S., & Kun, L. E. (1998). Neuropsychologic functioning of survivors of childhood medulloblastoma randomized to receive conventional or reduced-dose craniospinal irradiation: A pediatric oncology group study. Journal of Clinical Oncology, 16, 1723–1728.
Raymond-Speden, E., Tripp, G., Lawrence, B., & Holdaway, D. (2000). Intellectual, neuropsychological, and academic functioning in long-term survivors of leukemia. Journal of Pediatric Psychology, 25, 59–68.
Mitby, P. A., Robison, L. L., & Whitton, J. A. (2003). Utilization of special education services and educational attainment among long-term survivors of childhood cancer: A report from the childhood cancer survivor study. Cancer, 97, 1115–1126.
Zebrack, B. J., Zevon, M. A., Turk, N., Nagarajan, R., Whitton, J., Robison, L. L., et al. (2007). Psychological distress in long-term survivors of solid tumors diagnosed in childhood: A report from the childhood cancer survivor study. Pediatric Blood & Cancer, 49, 47–51.
Zebrack, B. J., Zeltzer, L. K., Whitton, J., Mertens, A. C., Odom, L., Berkow, R., et al. (2002). Psychological outcomes in long-term survivors of childhood leukemia, hodgkin’s disease, and non-hodgkin’s lymphoma: A report from the childhood cancer survivor study. Pediatrics, 110, 42–52.
Zeltzer, L. K., Recklitis, C., Buckbinder, D., Zebrack, B., Casillas, J., Tsao, J. C. I., et al. (2009). Psychological status in childhood cancer survivors: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 27, 2396–2404.
Stuber, M., Christakis, D. A., Houskamp, B., & Kazak, A. E. (1996). Posttrauma symptoms in childhood leukemia survivors and their parents. Psychosomatics, 37, 254–261.
Hobbie, W. L., Stuber, M., Meeske, K., Wissler, K., Rourke, M. T., Ruccione, K., et al. (2000). Symptoms of posttraumatic stress in young adult survivors of childhood cancer. Journal of Clinical Oncology, 18, 4060–4066.
Gurney, J. G., Krull, K. R., Kadan-Lottick, N., Nicholson, H. S., Nathan, P. C., Zebrack, B., et al. (2009). Social outcomes in long-term survivors of childhood cancer. Journal of Clinical Oncology, 27, 2390–2395.
Noll, R., MacLean, W., Whitt, J., Kaleita, T., Stehbens, J., Waskerwitz, M., et al. (1997). Behavioral adjustment and social functioning of long-term survivors of childhood leukemia: Parent and teacher reports. Journal of Pediatric Psychology, 22, 827–841.
Zebrack, B., Gurney, J. G., Oeffinger, K. C., Whitton, J., Packer, R. J., Mertens, A. C., et al. (2004). Psychological outcomes in long-term survivors of childhood brain cancer: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 22, 999–1006.
Koocher, G. P., & O’Malley, J. E. (1981). The damocles syndrome. New York, McGraw-Hill: Psychosocial consequences of surviving childhood cancer.
Kangas, M., Henry, J. L., & Bryant, R. A. (2002). Posttraumatic stress disorder following cancer–a conceptual and empirical review. Clinical Psychology Review, 22, 499–524.
Fleer, J., Sleijfer, D., Hoekstra, H., Tuinman, M., Klip, E., & Hoekstra-Weebers, J. (2006). Objective and subjective predictors of cancer-related stress symptoms in testicular cancer survivors. Patient Education and Counseling, 64, 142–150.
Taieb, O., Moro, M. R., Baubet, T., Revah-Levy, A., & Flament, M. F. (2003). Posttraumatic stress symptoms after childhood cancer. European Child and Adolescent Psychiatry, 12, 255–264.
Cordova, M. J., & Andrykowski, M. A. (2003). Responses to cancer diagnosis and treatment: Posttraumatic stress and posttraumatic growth. Seminars in Clinical Neuropsychiatry, 8, 286–296.
Zebrack, B. J., Yi, J., Petersen, L., & Ganz, P. A. (2008). The impact of cancer and quality of life for long-term survivors. Psycho-Oncology, 17, 891–900.
Pemberger, S., Jagsch, R., Frey, E., Felder-Puig, R., Gadner, H., Kryspin-Exner, I., et al. (2005). Quality of life in long-term childhood cancer survivors and the relation of late effects and subjective well-being. Supportive Care in Cancer, 13, 49–56.
Tomich, P. L., & Helgeson, V. S. (2002). Five years later: A cross-sectional cmoparison of breast cancer survivors with healthy women. Psychooncology, 11, 154–169.
Taylor, S. E. (1983). Adjustment to threatening events: A theory of cognitive adaptation. American Psychologist, 38, 1161–1173.
Taylor, E. J. (2000). Transformation of tragedy among women surviving breast cancer. Oncology Nursing Forum, 27, 781–788.
Taylor, S. E., Lichtman, R. R., & Wood, J. V. (1984). Attributions, beliefs about control, and adjustment to breast cancer. Journal of Personality and Social Psychology, 46, 489–502.
Ganz, P. A., Desmond, K. A., Leedham, B., Rowland, J. H., Meyerowitz, B. E., & Belin, T. R. (2002). Quality of life in long-term, disease-free survivors of breast cancer: A follow-up study. Journal of the National Cancer Institute, 94, 39–49.
Robison, L. L., Armstrong, G. T., Boice, J. D., Chow, R. J., Davies, S. M., Donaldson, S. S., et al. (2009). The childhood cancer survivor study: A national cancer institute–supported resource for outcome and intervention research. Journal of Clinical Oncology, 27, 2308–2318.
Zeltzer, L. K., Lu, Q., Leisenring, W., Tsao, J. C. I., Recklitis, C., Armstrong, G., et al. (2008). Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: A report from the childhood cancer survivor study. Cancer Epidemiology, Biomarkers and Prevention, 17, 435–446.
Recklitis, C. J., Parsons, S. K., Mei-Chiung, S., Mertens, A., Robison, L. L., & Zeltzer, L. K. (2006). Factor structure of the brief symptom inventory–18 in adult survivors of childhood cancer: Results from the childhood cancer survivor study. Psychological Assessment, 18, 22–32.
Zebrack, B. (2009). Developing a new instrument to assess the impact of cancer in young adult survivors of childhood cancer. Journal of Cancer Survivorship, 3, 174.
Zebrack, B. J., Donohue, J. E., Gurney, J. G., Chesler, M. A., Bhatia, S., & Landier, W. (2010). Psychometric evaluation of the impact of cancer (ioc-cs) scale for young adult survivors of childhood cancer. Quality of Life Research, 19, 207–218.
Ware, J. E., & Sherbourne, C. D. (1992). The mos 36-item short-form health survey (sf-36). I. Conceptual framework and item selection. Medical Care, 30, 473–483.
Sloan, J. A. (2005). Statistical issues in the application of cancer outcome measures; in Lipscomb J, Gotay CC, Snyder C (eds): Outcomes assessment in cancer: Measures, methods, and applications (pp. 362–385). Cambridge: Cambridge University Press.
Derogatis, L. R., & Spencer, P. M. (1982). The brief symptom inventory (bsi): Administration, scoring and procedures manual. Baltimore: Clinical Psychometric Research.
Stuber, M. L., Meeske, K. A., Krull, K. R., Leisenring, W., Stratton, K., Kazak, A. E., et al. (2010). Prevalence and predictors of posttraumatic stress disorder in adult survivors of childhood cancer. Pediatrics, 125, e1124–e1134.
Kessler, R. C., & Walters, E. E. (1998). Epidemiology of dsm-iii-r major depression and minor depression among adolescents and young adults in the national comorbidity survey. Depression and Anxiety, 7, 3–14.
Sharp, L. K., Kinahan, K. E., Didwania, A., & Stolley, M. (2007). Quality of life in adult survivors of childhood cancer. Journal of Pediatric Oncology Nursing, 24, 220–226.
Recklitis, C., O’Leary, T., & Diller, L. (2003). Utility of routine psychological screening in the childhood cancer survivor clinic. Journal of Clinical Oncology, 21, 787–792.
Meeske, K., Ruccione, K., Globe, D. R., & Stuber, M. L. (2001). Posttraumatic stress, quality of life, and psychological distress in young adult survivors of childhood cancer. Oncology Nursing Forum, 28, 481–489.
Florin, T. A., Fryer, G. E., Miyoshi, T., et al. (2007). Physical inactivity in adult survivors of childhood acute lymphoblastic leukemia: A report from the childhood cancer survivor study. Cancer Epidemiology, Biomarkers and Prevention, 16, 1356–1363.
Ness, K. K., Mertens, A. C., Hudson, M. M., et al. (2005). Limitations on physical performance and daily activities among long-term survivors of childhood cancer. Annals of Internal Medicine, 143, 639–647.
Zebrack, B. J., Zeltzer, L. K., Whitton, J., Mertens, A. C., Odom, L., Berkow, R. L., et al. (2002). Psychological outcomes in long-term survivors of childhood leukemia, hodgkin’s disease and non-hodgkin’s lymphoma: A report from the childhood cancer survivor study. Pediatrics, 110, 42–52.
Nathan, P. C., Ness, K. K., Greenberg, M. L., et al. (2007). Health-related quality of life in adult survivors of childhood wilms tumor or neuroblastoma: A report from the childhood cancer survivor study. Pediatric Blood & Cancer, 49, 704–715.
Ness, K. K., Gurney, J. G., Zeltzer, L. K., et al. (2008). The impact of limitations in physical, executive, and emotional function on health-related quality of life among adult survivors of childhood cancer: A report from the childhood cancer survivor study. Archives of Physical and Medical Rehabilitation, 89, 128–136.
Mertens, A. C., Cotter, K. L., Foster, B. M., Zebrack, B. J., Hudson, M. M., Eshelman, D. A., et al. (2004). Improving health care for adult survivors of childhood cancer: Recommendations from a delphi panel of health policy experts. Health Policy, 69, 169–178.
Oeffinger, K. C., & Hudson, M. M. (2004). Long-term complications following childhood and adolescent cancer: Foundations for providing risk-based health care for survivors. CA: Cancer Journal for Clinicians, 54, 208–236.
Klosky, J., Cash, D., Buscemi, J., et al. (2008). Factors influencing long-term follow-up clinic attendance among survivors of childhood cancer. Journal of Cancer Survivorship, 2, 225–232.
Oeffinger, K. C., Mertens, A. C., Hudson, M. M., Gurney, J. G., Casillas, J., Chen, H., et al. (2004). Health care of young adult survivors of childhood cancer: A report from the childhood cancer survivor study. Annals of Family Medicine, 2, 61–70.
Nathan, P. C., Greenberg, M. L., Ness, K. K., et al. (2008). Medical care in long-term survivors of childhood cancer: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 26, 4401–4409.
Acknowledgments
This work funded through the US Department of Health and Human Services, National Institutes of Health, National Cancer Institute (K07 CA100380). Also, the author wishes to express gratitude for the support and assistance received from the following mentors and consultants: Lonnie Zeltzer, Patricia Ganz, Mark Chesler, Kathleen Ruccione, Ernie Katz, Ron Hays, Leslie Robison, Carolyn Gotay, and Marcia Leonard.
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Appendix 1: Impact of Cancer—CS, 45 items
Appendix 1: Impact of Cancer—CS, 45 items
Negative
Life challenges
-
1.
Worry about health
-
2.
Want to forget cancer
-
3.
Wonder why I got cancer
-
4.
Wonder why I survived
-
5.
Something I did caused cancer
-
6.
Angry about cancer
-
7.
Cancer controls my life
-
8.
Time is running out
-
9.
Afraid to die
-
10.
Worry I will die at young age
-
11.
Missed out on life
-
12.
Unsure about future
Thinking/memory problems
-
13.
Easy to make decisionsa
-
14.
Easy to learna
-
15.
Hard time thinking
-
16.
Trouble w/long-term memory
-
17.
Trouble w/short-term memory
Financial problems
-
18.
Financial problems from cancer
-
19.
Parents financial problems from cancer
-
20.
Trouble getting assistance/services
Positive
Body and health
-
21.
Lead healthy life
-
22.
Eat healthy diet
-
23.
Exercise
-
24.
Healthy as those w/o cancer
-
25.
Believe I’m attractive
-
26.
Like my body
-
27.
Self-confident
-
28.
Feel in control
Talking with parents
-
29.
Can talk with mom about cancer
-
30.
Can talk with dad about cancer
-
31.
Mom comfortable talking about cancer w/me
-
32.
Dad comfortable talking about cancer w/me
Personal growth
-
33.
Cancer part of self
-
34.
More mature than those without cancer
-
35.
Special bond with others with cancer
-
36.
Good things came from cancer
-
37.
Learned about self
Health literacy
-
38.
Know who to see for medical problems
-
39.
Feel doctor knows cancer effects
-
40.
Easy to talk to doctor about cancer
-
41.
Have all cancer info I need
-
42.
Know where to find cancer info
Socializing
-
43.
Make friends easily
-
44.
Avoid social activitiesa
-
45.
Left out of friends’ livesa
aReverse scoring
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Zebrack, B.J., Landier, W. The perceived impact of cancer on quality of life for post-treatment survivors of childhood cancer. Qual Life Res 20, 1595–1608 (2011). https://doi.org/10.1007/s11136-011-9893-8
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DOI: https://doi.org/10.1007/s11136-011-9893-8