Abstract
Goals
The purpose of the present study was the assessment of health-related quality of life in adult long-term survivors of childhood cancer and the detection of possible treatment- and cancer-related late effects. The relation of objective medical data and subjective appraisal was also examined by combining the doctor’s and the patient’s views of the perceived health status.
Patients and methods
Seventy-eight young adults at the age of at least 18 years who had been diagnosed with cancer in the years 1975–1995 and were off therapy at least 5 years with no evidence of disease participated. Cancer survivors completed self-rating instruments [SF-36 Health Survey, Nottingham Health Profile (NHP), Beck’s Depression Inventory (BDI), State-Trait Anxiety Inventory (STAI) trait-anxiety scale]; the doctor assessed the patient’s health by means of the Common Toxicity Criteria (CTCv2).
Main results
The cancer survivors showed a mostly higher-than-average positive subjective rating of the various areas of quality of life. In comparison to the general population, the cancer survivors showed lower extents of depression. In 64.1% of the cancer survivors, medical rating and self-assessment regarding the perceived health status corresponded. Cancer survivors who felt severely impaired regarding their subjectively perceived well-being showed worse results in some dimensions of quality of life than persons who subjectively felt mildly impaired. The so-called “unfortunate” persons showed the worst assessment of quality of life and the highest extent of depression and anxiety.
Conclusions
The results of the present study may be helpful in planning an appropriate multidisciplinary, long-term follow-up of childhood cancer survivors.
Similar content being viewed by others
References
APA (American Psychiatric Association) (1993) Practice guideline for major depressive disorder in adults. APA, Washington DC
Aaronson N (1990) Quality of life assessment in cancer clinical trials. In: Holland JC, Zittoun R (eds) Psychosocial aspects of oncology. Springer-Verlag, Berlin, Heidelberg, New York, pp 97–113
Apajasalo M, Sintonen H, Siimes MA, Hovi L, Holmberg C, Boyd H, Mäkelä A, Rautonen J (1996) Health-related quality of life of adults surviving malignancies in childhood. Eur J Cancer 32:1354–1358
Bullinger M (1991a) Erhebungsmethoden. In: Tüchler H, Lutz D (eds) Lebensqualität und Krankheit. Auf dem Weg zu einem medizinischen Kriterium Lebensqualität. Deutscher Ärzte-Verlag, Köln, pp 84–96
Bullinger M (1991b) Quality of life:Definition, conceptualization and implications—A methodologist’s view. Theor Surg 6:143–148
Bullinger M (1996) Erfassung der gesundheitsbezogenen Lebensqualität mit dem SF-36 Health Survey. Rehabilitation 35:XVII–XXX
Bullinger M, Kirchberger I (1998) SF-36. Fragebogen zum Gesundheitszustand. Hogrefe, Göttingen
Bullinger M, Ravens-Sieberer U, Siegrist J (2000) Gesundheitsbezogene Lebensqualität in der Medizin—eine Einführung. In: Bullinger M, Siegrist J, Ravens-Sieberer U (eds) Lebensqualitätsforschung aus medizinpsychologischer und -soziologischer Perspektive. Hogrefe, Göttingen, pp 11–21
Deleted in production
Dolgin MJ, Somer E, Buchvald E, Zaizov R (1999) Quality of life in adult survivors of childhood cancer. Soc Work Health Care 28:31–43
Elkin TD, Phipps S, Mulhern RK, Fairclough D (1997) Psychological functioning of adolescent and young adult survivors of pediatric malignancy. Med Pediatr Oncol 29:582–588
Felder-Puig R, Formann AK, Mildner A, Bretschneider W, Bucher B, Windhager R, Zoubek A, Puig S, Topf R (1998) Quality of life and psychosocial adjustment of young patients after treatment of bone cancer. Cancer 83:69–75
Filipp SH, Ferring D (1991) Zur inhaltlichen Bestimmung und Erfassung von Lebensqualität im Umfeld schwerer körperlicher Erkrankungen. Praxis der Klinischen Verhaltensmedizin und Rehabilitation 16:274–283
Frey E, Gadner H (2002) Krebs im Kindesalter – die Beherrschung der Grundkrankheit. 3. Spätfolgen nach Behandlung onkologischer Erkrankungen im Kindesalter. Padiatr Prax 61:421–433
Gray RE, Doan BD, Shermer P, FitzGerald AV, Berry MP, Jenkin D, Doherty MA (1992) Psychologic adaptation of survivors of childhood cancer. Cancer 70:2713–2721
Hautzinger M, Bailer M, Worall H, Keller F. (1994) Beck-Depressions-Inventar (BDI). Huber, Bern
Hobbie WL, Stuber M, Meeske K, Wissler K, Rourke MT, Ruccione K, Hinkle A, Kazak AE (2000) Symptoms of posttraumatic stress in young adult survivors of childhood cancer. J Clin Oncol 18:4060–4066
Humpl T, Fritsche M, Bartels U, Gutjahr P (2001) Survivors of childhood cancer for more than twenty years. Acta Oncol 40:44–49
Kohlmann T, Bullinger M, Kirchberger-Blumstein I (1997) Die deutsche Version des Nottingham Health Profile (NHP): Übersetzungsmethodik und psychometrische Validierung. Soz Präventivmed 42:175–185
Kurz R, Roos R (1996) Checkliste Pädiatrie. Thieme, Stuttgart
Lackner H, Benesch M, Schagerl S, Kerbl R, Schwinger W, Urban C (2000) Prospective evaluation of late effects after childhood cancer therapy with a follow-up over 9 years. Eur J Pediatr 159:750–758
Laux L, Glanzmann P, Schaffner P, Spielberger CD (1981) STAI. Das State-Trait-Angst-Inventar. Beltz Testgesellschaft, Weinheim
Mackie E, Hill J, Kondryn H, McNally R (2000) Adult psychosocial outcomes in long-term survivors of acute lymphoblastic leukaemia and Wilms’ tumor: A controlled study. Lancet 355:1310–1314
Meeske KA, Ruccione K, Globe DR, Stuber ML (2001) Posttraumatic stress, quality of life, and psychological distress in young adult survivors of childhood cancer. Oncol Nurs Forum 28:481–489
National Cancer Institute (1998) Common Toxicity Criteria Version 2. National Cancer Institute, Betheseda
Neglia JP, Nesbit ME (1993) Care and treatment of long-term survivors of childhood cancer. Cancer 71:3386–3391
Oeffinger KC, Eshelman DA, Tomlinson GE, Buchanan GR, Foster BM (2000) Grading of late effects in young adult survivors of childhood cancer followed in an ambulatory adult setting. Cancer 88:1687–1695
Osoba D (1991) Measuring the effect of cancer on quality of life. In:Osoba D (ed) Effect of Cancer on Quality of Life. CRC Press, Boca Raton, pp 25–40
Petermann F, Krischke N, Deuchert M (1994) Methodische Probleme bei der Erfassung der Lebensqualität. In: Petermann F, Bergmann KC (eds) Lebensqualität und Asthma. Quintessenz, München, pp 29–41
Phipps S, Steele RG, Hall K, Leigh L (2001) Repressive adaptation in children with cancer:a replication and extension. Health Psychology 20:445–451
Sklar CA (1999) Overview of the effects of cancer therapies:the nature, scale and breadth of the problem. Acta Paediatrica Supplemente 88:1–4
Slevin ML, Plant H, Lynch D, Drinkwater J, Gregory WM (1988) Who should measure quality of life, the doctor or the patient? Br J Cancer 57:109–112
Weissman MM (1992) The changing rate of major depression:Cross-national comparisons. JAMA 268:3098–3105
Zebrack B (2000) Cancer survivors and quality of life: A critical review of the literature. Oncol Nurs Forum 27: 1395–1401
Acknowledgments
The authors thank the Kinder-Krebs-Hilfe for supporting this study and Mrs. D. Rauchenwald and Mrs. G. Sonnleithner for their assistance in patient recruitment.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Pemberger, S., Jagsch, R., Frey, E. et al. Quality of life in long-term childhood cancer survivors and the relation of late effects and subjective well-being. Support Care Cancer 13, 49–56 (2005). https://doi.org/10.1007/s00520-004-0724-0
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00520-004-0724-0