Article

Health-Related Quality of Life in Childhood Cancer: State of the Science

Mary Ann Cantrell

health-related quality of life, children
ONF 2007, 34(1), 103-111. DOI: 10.1188/07.ONF.103-111

Purpose/Objectives: To summarize the theoretical understanding and empirical measurement of health-related quality of life (HRQOL) for childhood cancer survivors and to identify determinants of HRQOL for adolescents with cancer.

Data Sources: Published articles from 1985-2005. Key words included health, quality of life, childhood cancer, and survivorship.

Data Synthesis: Direct and indirect determinants of HRQOL for adolescents with cancer include physical health, perceived level of selfesteem, coping abilities, personality characteristics, hopefulness, social support, and overall experiences during treatment.

Conclusions: Understanding and influencing children's and adolescents' experiences in treatment have been suggested as keys in ameliorating psychosocial sequelae and positively influencing HRQOL in survivorship.

Implications for Nursing: Psychosocial nursing care interventions are needed to positively influence the determinants of HRQOL for children and adolescents with cancer.

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    References

    Absolom, K., Eiser, C., Greco, V., & Davies, H. (2004). Health promotion for survivors of childhood cancer: A minimal intervention. Patient Education and Counseling, 55, 379-384.
    Apajasalo, M., Sintonen, H., Simes, M.A., Hovi, L., Holmberg, C., Boyd, H., et al. (1996). Health-related quality of life of adults surviving malignancies in childhood. European Journal of Cancer, 32A, 1354-1358.
    Bennett, S.J. (1993). Relationships among selected antecedent variables and coping effectiveness in post-myocardial infarction patients. Research in Nursing and Health, 16, 131-139.
    Bhatia, S., Jenney, M.E., Bogue, M.K., Rockwood, T.H., Feusner, J.H., Friedman, D.L., et al. (2002). The Minneapolis-Manchester Quality instrument: Reliability and validity of the Adolescent Form. Journal of Clinical Oncology, 20, 4692-4698.
    Boman, K., & Bodegard, G. (2000). Long-term coping in childhood cancer survivors—Influence of illness, treatment and demographic background factors. Acta Paediatrica, 89, 105-111.
    Bradlyn, A.S. (2004). Health-related quality of life in pediatric oncology: Current status and future challenges. Journal of Pediatric Oncology Nursing, 21, 137-140.
    Cantrell, M.A., & Lupinacci, P. (2004). A predictive model of hopefulness for adolescents. Journal of Adolescent Health, 35, 478-485.
    Costain, K., Hewison, J., & Howes, M. (1993). Comparison of function-based model and meaning-based models of quality of life in oncology. Multidimensionality examined. Journal of Psychosocial Oncology, 11(4), 17-37.
    Decker, C., Phillips, C.R., & Haase, J.E. (2004). Information needs of adolescents with cancer. Journal of Pediatric Oncology Nursing, 21, 327-334.
    De Clercq, B., DeFruyt, F., Koot, H.M., & Benoit, Y. (2004). Quality of life in children surviving cancer: A personality and multi-informant perspective. Journal of Pediatric Psychology, 29, 579-590.
    Detmar, S.B., Aaronson, N.K., Wever, L.D., Muller, M., & Schornagel, J.H. (2000). How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality-of-life issues. Journal of Clinical Oncology, 18, 3295-3301.
    Detmar, S.B., Muller, M.J., Schornagel, J.H., Wever, L.D., & Aaronson, N.K. (2002). Health-related quality-of-life assessments and patient-physician communication: A randomized controlled trial. JAMA, 288, 3027-3034.
    Dolgin, M.J., Somer, E., Buchvald, E., & Zaizov, R. (1999). Quality of life in adolescent survivors of childhood cancer. Social Work in Health Care, 28, 31-43.
    Elkin, T.D., Phipps, S., Mulhern, R.K., & Fairclough, D. (1997). Psychological functioning of adolescent and young adult survivors of pediatric malignancy. Medical and Pediatric Oncology, 29, 582-588.
    Ellerton, M.L., Stewart, M.J., Ritchie, J.A., & Hirth, A.M. (1996). Social support in children with a chronic condition. Canadian Journal of Nursing Research, 28, 15-36.
    Enskar, K., Carlsson, M., Golsater, M., & Hamrin, E. (1997). Symptom distress and life situation in adolescents with cancer. Cancer Nursing, 20, 23-33.
    Evans, S.E., & Radford, M. (1995). Current lifestyle of young adults treated for cancer in childhood. Archives of Diseases in Childhood, 72, 423-426.
    Frydenberg, E., & Lewis, R. (1993). Boys play sport and girls turn to others: Age, gender, and ethnicity as determinants of coping. Journal of Adolescence, 16, 253-266.
    Gill, T.M., & Feinstein, A.R. (1994). A critical appraisal of the quality-of-life measurements. JAMA, 272, 619-626.
    Goertzel, L., & Goertzel, T. (1991). Health locus of control, self-concept, and anxiety in pediatric cancer patients. Psychological Reports, 68, 531-540.
    Goodwin, D.A., Boggs, S.R., & Graham-Pole, J. (1994). Development and validation of the Pediatric Oncology Quality of Life Scale. Psychological Assessment, 6, 321-328.
    Gray, R.E., Doan, B.D., Shermer, P., Fitzgerald, A.V., Berry, M.P., Jenkin, D., et al. (1992). Psychologic adaptation of survivors of childhood cancer. Cancer, 70, 2713-2721.
    Groer, M.W., Thomas, S.P., & Schnoffer, D. (1992). Adolescent stress and coping: A longitudinal study. Research in Nursing and Health, 15, 209-217.
    Haase, J.E. (2004). The adolescent resilience model as a guide to interventions. Journal of Pediatric Oncology Nursing, 21, 289-299.
    Haase, J.E., Heiney, S.P., Ruccione, K.S., & Stutzer, C. (1999). Research triangulation to derive meaning-based quality-of-life theory: Adolescent resilience model and instrument development. International Journal of Cancer, 12(Suppl.), 125-131.
    Haase, J.E., & Phillips, C.R. (2004). The adolescent/young adult experience. Journal of Pediatric Oncology Nursing, 21, 145-149.
    Hendricks, C.S., Hoffman, H.P., Roberston-Laxton, L., Tavakoli, A., Mathis, D., Hackett, D., et al. (2000). Hope as a predictor of health promoting behavior among rural southern early adolescents. Journal of Multicultural Nursing and Health, 6, 6-11.
    Hewitt, M., Weiner, S.L., & Simone, J.V. (Eds.). (2003). Childhood cancer survivorship: Improving care and quality of life. Washington, DC: National Academies Press.
    Hinds, P.S. (1988). Adolescent hopefulness in illness and health. Advances in Nursing Science, 10(3), 79-88.
    Hinds, P.S. (1990). Quality of life in children and adolescents with cancer. Seminars in Oncology Nursing, 6, 285-291.
    Hinds, P.S. (2000). Fostering coping by adolescents with cancer. Seminars in Oncology Nursing, 16, 317-327.
    Hinds, P.S. (2004). The hopes and wishes of adolescents with cancer and the nursing care that helps. Oncology Nursing Forum, 31, 927-933.
    Hinds, P.S., Baggott, C., DeSwarte-Wallace, J., Dodd, M., Haase, J., Hockenberry, M., et al. (2003). Functional integration of nursing research into a pediatric oncology cooperative group: Finding common ground [Online exclusive]. Oncology Nursing Forum, 30, E121-E126. Retrieved November 20, 2006, from http://www.ons.org/Publications/journals/ONF/Volume30/Issue6/pdf/935.pdf
    Hinds, P.S., Burghen, E.A., Haase, J.E., & Phillips, C.R. (2006). Advances in defining, conceptualizing, and measuring quality of life in pediatric patients with cancer. Oncology Nursing Forum, 33(1, Suppl. 1), 23-29.
    Hinds, P.S., Gattuso, J.S., Fletcher, A., Baker, E., Coleman, B., Jackson, T., et al. (2004). Quality of life as conveyed by pediatric patients with cancer. Quality of Life Research, 13, 761-772.
    Hinds, P.S., & Martin, J. (1988). Hopefulness and the self-sustaining process in adolescents with cancer. Nursing Research, 37, 336-340.
    Hollen, P.J. (2000a). A clinical profile to predict decision making, risk behaviors, clinical status, and health-related quality of life for cancer-surviving adolescents. Part 1. Cancer Nursing, 23, 247-257.
    Hollen, P.J. (2000b). A clinical profile to predict decision making, risk behaviors, clinical status, and health-related quality of life for cancer-surviving adolescents. Part 2. Cancer Nursing, 23, 337-343.
    Holmes, S., & Dickerson, J. (1987). The quality of life: Design and evaluation of a self-assessment instrument for use with cancer patients. International Journal of Nursing Studies, 24, 15-24.
    Hudson, M.M., Mertens, A.C., Yasui, Y., Hobbie, W., Chen, H., Gurney, J.G., et al. (2003). Health status of adult long-term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. JAMA, 290, 1583-1592.
    Kadan-Lottick, N.S., Robinson, L.L., Gurney, J.G., Neglia, J.P., Yasui, Y., Hayashi, R., et al. (2005). Childhood cancer survivors' knowledge about their past diagnosis and treatment: Childhood Cancer Survivor Study. JAMA, 287, 1832-1839.
    Katz, E.R., & Varni, J.W. (1993). Social support and social cognitive problem-solving in children with newly diagnosed cancer. Cancer, 71(Suppl. 10), 3314-3319.
    Keller, C., & Nicolls, R. (1990). Coping strategies of chronically ill adolescents and their parents. Issues in Comprehensive Pediatric Nursing, 13, 73-80.
    Koocher, G.P., O'Malley, J.E., Gogan, J.L., & Foster, D.J. (1980). Psychological adjustment among pediatric cancer survivors. Journal of Child Psychology and Psychiatry, 21, 163-173.
    Landier, W., Bhatia, S., Eshelman, D.A., Forte, K.J., Sweeney, T., Hester, A.L., et al. (2004). Development of risk-based guidelines for pediatric cancer survivors: The Children's Oncology Group long-term follow-up guidelines from the Children's Oncology Group Late Effects Committee and Nursing Discipline. Journal of Clinical Oncology, 24, 4979-4990.
    Langeveld, N.E., Grootenhuis, M.A., Voute, P.A., de Haan, R.J., & van den Bos, C. (2004). Quality of life, self-esteem and worries in young adult survivors of childhood cancer. Psycho-Oncology, 13, 867-881.
    Madan-Swain, A., Brown, R.T., Sexson, S.B., Baldwin, K., Pais, R., & Ragab, A. (1994). Adolescent cancer survivors. Psychosocial and familial adaptation. Psychosomatics, 35, 453-459.
    Mertens, A.C., Yasui, Y., Neglia, J.P., Potter, J.D., Nesbit, M.E., Ruccione, K., et al. (2001). Late mortality experience in five-year survivors of childhood cancer and adolescent cancer: The Childhood Cancer Survivor Study. Journal of Clinical Oncology, 19, 3163-3172.
    Monaco, G.P., & Smith, G. (2005). Young leukemia survivors needs post-treatment counseling. Oncology News International, 14(2), 39-40, 53, 61.
    Mulhern, R.K., Tyc, V.L., Phipps, S., Crom, D., Barclay, D., Greenwald, C., et al. (1995). Health-related behaviors of survivors of childhood cancer. Medical and Pediatric Oncology, 25, 159-165.
    Nelson, A.E. (2004). Resilience and quality of life in adolescents with cancer: Proceedings of APON's 5th annual State of the Science and Practice preconference session intervention to enhance resilience and quality of life in adolescents with cancer. Journal of Pediatric Oncology Nursing, 21, 288.
    Nelson, A.E., Haase, J., Kupst, M.J., Clarke-Steffen, L., & Brace-O'Neill, J. (2004). Consensus statements: Interventions to enhance resilience and quality of life in adolescents with cancer. Journal of Pediatric Oncology Nursing, 21, 305-307.
    Nelson, M.B., & Meeske, K. (2005). Recognizing health risks in childhood cancer survivors. Journal of the American Academy of Nurse Practitioners, 17, 96-103.
    Nelson, R. (2003). Childhood cancer survivors face long-term complications. Lancet, 362, 884.
    Neville, K. (1998). The relationships among uncertainty, social support, and psychological distress in adolescents recently diagnosed with cancer. Journal of Pediatric Oncology Nursing, 15, 37-46.
    Newby, W.L., Brown, R.T., Pawletko, T.M., Gold, S.H., & Whitt, K. (2000). Social skills and psychological adjustment of child and adolescent cancer survivors. Psycho-Oncology, 9, 113-126.
    Nichols, M.L. (1995). Social support and coping in young adolescents with cancer. Pediatric Nursing, 21, 235-240.
    Nirenberg, A. (2004). Who's minding the cure? Adult survivors of childhood cancer. American Journal for Nurse Practitioners, 8, 25-32.
    Noll, R.B., & Fairclough, D. (2004). Health-related quality of life: Developmental and psychometric issues. Journal of Pediatrics, 145, 8-9.
    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: A Cancer Journal for Clinicians, 54, 208-236.
    Olson, A.L., Boyle, W.E., Evans, M.W., & Zug, L.A. (1993). Overall function in rural childhood cancer survivors. The role of social competence and emotional health. Clinical Pediatrics, 32, 334-342.
    Overbaugh, K.A., & Sawin, K. (1992). Future life expectations and self-esteem of the adolescent survivor of childhood cancer. Journal of Pediatric Oncology Nursing, 9, 8-16.
    Parry, C., & Chesler, M.A. (2005). Thematic evidence of psychosocial thriving in childhood cancer survivors. Qualitative Health Research, 15, 1055-1073.
    Parsons, S.K., & Brown, A.P. (1998). Evaluation of quality of life of childhood cancer survivors: A methodological conundrum. Medical and Pediatric Oncology, 1(Suppl.), 46-53.
    Postma, A., Kingma, A., de Ruiter, J.H., Koops, H.S., Veth, R.P., Goeken, L.N., et al. (1992). Quality of life in bone tumor patients. Comparing limb salvage and amputation of the lower extremity. Journal of Surgical Oncology, 51, 47-51.
    Punyko, J.A., Gurney, J.G., Baker, K.S., Hayashi, R.J., Hudson, M.M., Liu, Y., et al. (in press). Physical impairment and social adaptation in adult survivors of childhood and adolescent rhabdomyosarcoma: A report from the Childhood Cancer Survivors Study. Psycho-Oncology.
    Rechner, M. (1990). Adolescents with cancer: Getting on with life. Journal of Pediatric Oncology Nursing, 7, 139-144.
    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.
    Recklitis, C.J., Parsons, S.K., Shih, M.C., Mertens, A., Robison, L.L., & Zeltzer, L. (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.
    Ritchie, M.A. (1992). Psychosocial functioning of adolescents with cancer: A developmental perspective. Oncology Nursing Forum, 19, 1497-1501.
    Ritchie, M.A. (2001). Self-esteem and hopefulness in adolescents with cancer. Journal of Pediatric Nursing, 16, 35-42.
    Santacroce, S.J., & Lee, Y. (2006). Uncertainty, posttraumatic stress, and health behavior in young adult childhood cancer survivors. Nursing Research, 55, 259-266.
    Schnoll, R.A., Knowles, J.C., & Harlow, L. (2002). Correlates of adjustment among cancer survivors. Journal of Psychosocial Oncology, 20, 37-59.
    Schwartz, C.L. (1999). Long-term survivors of childhood cancer: The late effects of therapy. Oncologist, 4, 45-54.
    Seitzman, R.L., Glover, D.A., Meadows, A.T., Mills, J.L., Nicholson, H.S., Robinson, L.L., et al. (2004). Self-concept in adult survivors of childhood acute lymphoblastic leukemia: A cooperative Children's Cancer Group and National Institutes of Health study. Pediatric Blood and Cancer, 42, 230-240.
    Shankar, S., Robinson, L., Jenney, M.E., Rockwood, T.H., Wu, E., Feusner, J., et al. (2005). Health-related quality of life in young survivors of childhood cancer using the Minneapolis-Manchester Quality of Life-Youth Form. Pediatrics, 115, 435-442.
    Sherman, R.S., Cooke, E., & Grant, M. (2005). Dialogue among survivors of hematopoietic cell transplantation: Support group themes. Journal of Psychosocial Oncology, 23, 1-24.
    Spirito, A., Stark, L.J., Gil, K.M., & Tyc, V.L. (1995). Coping with everyday and disease-related stressors by chronically ill children and adolescents. Journal of the American Academy of Adolescent Psychiatry, 34, 283-290.
    Sredl, D. (2004). Health related quality of life: A concept analysis. West African Journal of Nursing, 15, 9-19.
    Stam, H., Grootenhuis, M.A., Caron, H.N., & Last, B.F. (2006). Quality of life and current coping in young adult survivors of childhood cancer: Positive expectations about the future course of the disease were correlated with better quality of life. Psycho-Oncology, 15, 31-43.
    Stam, H., Grootenhuis, M.A., & Last, B.F. (2005). The course of life of survivors of childhood cancer. Psycho-Oncology, 14, 227-238.
    Stern, M., & Alvarez, A. (1992). Pregnant and parenting adolescents: A comparative analysis of coping response and psychosocial adjustment. Journal of Adolescent Research, 7, 469-493.
    Stern, M., Norman, S.L., & Zevon, M.A. (1993). Adolescents with cancer: Self-image and perceived social support as indexes of adaptation. Journal of Adolescent Research, 8, 124-142.
    Stuber, M.L., Kazak, A.E., Meeske, K., Barakat, L., Guthrie, D., Garnier, H., et al. (1997). Predictors of post traumatic stress symptoms in childhood cancer survivors. Pediatrics, 100, 958-964.
    Testa, M.A., & Simonson, D.C. (1996). Assessment of quality-of-life outcomes. New England Journal of Medicine, 334, 835-840.
    Thoits, P.A. (1986). Social support as coping assistance. Journal of Consulting and Clinical Psychology, 54, 416-423.
    Varni, J.W., Katz, E.R., Colegrove, R., Jr., & Dolgin, M. (1994). Perceived stress and adjustment of long-term survivors of childhood cancer. Journal of Psychosocial Oncology, 12(3), 1-16.
    Varni, J.W., Katz, E.R., Seid, M., Quiggins, D.J., & Friedman-Bender, A. (1998). The Pediatric Cancer Quality of Life Inventory-32 (PCQL-32): Reliability and validity. Cancer, 82, 1184-1196.
    Varni, J.W., Seid, M., Knight, T.S., Uzark, K., & Szer, I.S. (2002). The PedsQL 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making. Journal of Behavioral Medicine, 25, 175-193.
    Weekes, D.P., & Kagan, S.H. (1994). Adolescents completing cancer therapy: Meaning, perception, and coping. Oncology Nursing Forum, 21, 663-670.
    Wiener, L., Battles, H., Berstein, D., Long, L., Derdak, J., Mackall, C.L., et al. (2006). Persistent psychological distress in long-term survivors of pediatric sarcoma: The experience at a single institution. Psycho-Oncology, 15, 898-910.
    Woodgate, R.L. (2005). A different way of being. Adolescents' experiences with cancer. Cancer Nursing, 28, 8-15.
    Yarcheski, A., Scoloveno, M.A., & Mahon, N.E. (1994). Social support and well-being in adolescents: The mediating role of hopefulness. Nursing Research, 43, 288-292.
    Yeh, C.H. (2002). Health-related quality of life in pediatric patients with cancer. A structural equation approach with the Roy Adaptation Model. Cancer Nursing, 25, 74-80.
    Zebrack, B.J., & Chesler, M.A. (2002). Quality of life in childhood cancer survivors. Psycho-Oncology, 11, 132-141.
    Zebrack, B.J., & Zeltzer, L. (2003). Quality of life issues and cancer survivorship. Current Problems With Cancer, 27, 198-211.