Health-related quality of life in long-term survivors of relapsed childhood acute lymphoblastic leukemia
Stefan Essig, Nicolas X von der Weid, Marie-Pierre F Strippoli, Cornelia E Rebholz, Gisela Michel, Corina S Rueegg, Felix K Niggli, Claudia E Kuehni, Swiss Pediatric Oncology Group (SPOG), R Ammann, R Angst, M Beck Popovic, P Brazzola, J Greiner, H Hengartner, T Kuehne, K Leibundgut, F Niggli, L Nobile Buetti, A H Ozsahin, J Rischewski, M Grotzer, N von der Weid, Stefan Essig, Nicolas X von der Weid, Marie-Pierre F Strippoli, Cornelia E Rebholz, Gisela Michel, Corina S Rueegg, Felix K Niggli, Claudia E Kuehni, Swiss Pediatric Oncology Group (SPOG), R Ammann, R Angst, M Beck Popovic, P Brazzola, J Greiner, H Hengartner, T Kuehne, K Leibundgut, F Niggli, L Nobile Buetti, A H Ozsahin, J Rischewski, M Grotzer, N von der Weid
Abstract
Background: Relapses occur in about 20% of children with acute lymphoblastic leukemia (ALL). Approximately one-third of these children can be cured. Their risk for late effects is high because of intensified treatment, but their health-related quality of life (HRQOL) was largely unmeasured. Our aim was to compare HRQOL of ALL survivors with the general population, and of relapsed with non-relapsed ALL survivors.
Methodology/principal findings: As part of the Swiss Childhood Cancer Survivor Study (SCCSS) we sent a questionnaire to all ALL survivors in Switzerland who had been diagnosed between 1976-2003 at age <16 years, survived ≥5 years, and were currently aged ≥16 years. HRQOL was assessed with the Short Form-36 (SF-36), which measures four aspects of physical health and four aspects of mental health. A score of 50 corresponded to the mean of a healthy reference population. We analyzed data from 457 ALL survivors (response: 79%). Sixty-one survivors had suffered a relapse. Compared to the general population, ALL survivors reported similar or higher HRQOL scores on all scales. Survivors with a relapse scored lower in general health perceptions (51.6) compared to those without (55.8;p=0.005), but after adjusting for self-reported late effects, this difference disappeared.
Conclusion/significance: Compared to population norms, ALL survivors reported good HRQOL, even after a relapse. However, relapsed ALL survivors reported poorer general health than non-relapsed. Therefore, we encourage specialists to screen for poor general health in survivors after a relapse and, when appropriate, specifically seek and treat underlying late effects. This will help to improve patients' HRQOL.
Conflict of interest statement
Competing Interests: The authors have declared that no competing interests exist.
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References
- Linabery AM, Ross JA. Trends in childhood cancer incidence in the U.S. (1992–2004). Cancer. 2008;112:416–432.
- Michel G, von der Weid NX, Zwahlen M, Redmond S, Strippoli MP, et al. Incidence of childhood cancer in Switzerland: the Swiss Childhood Cancer Registry. Pediatr Blood Cancer. 2008;50:46–51.
- Gatta G, Zigon G, Capocaccia R, Coebergh JW, Desandes E, et al. Survival of European children and young adults with cancer diagnosed 1995–2002. Eur J Cancer. 2009;45:992–1005.
- Linabery AM, Ross JA. Childhood and adolescent cancer survival in the US by race and ethnicity for the diagnostic period 1975–1999. Cancer. 2008;113:2575–2596.
- Gaynon PS, Qu RP, Chappell RJ, Willoughby ML, Tubergen DG, et al. Survival after relapse in childhood acute lymphoblastic leukemia: impact of site and time to first relapse–the Children’s Cancer Group Experience. Cancer. 1998;82:1387–1395.
- Einsiedel HG, von Stackelberg A, Hartmann R, Fengler R, Schrappe M, et al. Long-term outcome in children with relapsed ALL by risk-stratified salvage therapy: results of trial acute lymphoblastic leukemia-relapse study of the Berlin-Frankfurt-Munster Group 87. J Clin Oncol. 2005;23:7942–7950.
- Michel G, Rebholz CE, von der Weid NX, Bergstraesser E, Kuehni CE. Psychological distress in adult survivors of childhood cancer: the Swiss Childhood Cancer Survivor study. J Clin Oncol. 2010;28:1740–1748.
- Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, et al. Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. JAMA. 2003;290:1583–1592.
- Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355:1572–1582.
- Asner S, Ammann RA, Ozsahin H, Beck-Popovic M, von der Weid NX. Obesity in long-term survivors of childhood acute lymphoblastic leukemia. Pediatr Blood Cancer. 2008;51:118–122.
- Pui CH, Cheng C, Leung W, Rai SN, Rivera GK, et al. Extended follow-up of long-term survivors of childhood acute lymphoblastic leukemia. N Engl J Med. 2003;349:640–649.
- Mody R, Li S, Dover DC, Sallan S, Leisenring W, et al. Twenty-five-year follow-up among survivors of childhood acute lymphoblastic leukemia: a report from the Childhood Cancer Survivor Study. Blood. 2008;111:5515–5523.
- Goldsby RE, Liu Q, Nathan PC, Bowers DC, Yeaton-Massey A, et al. Late-occurring neurologic sequelae in adult survivors of childhood acute lymphoblastic leukemia: a report from the Childhood Cancer Survivor Study. J Clin Oncol. 2010;28:324–331.
- Stam H, Grootenhuis MA, Caron HN, Last BF. Quality of life and current coping in young adult survivors of childhood cancer: positive expectations about the further course of the disease were correlated with better quality of life. Psychooncology. 2006;15:31–43.
- Zebrack BJ, Chesler MA. Quality of life in childhood cancer survivors. Psychooncology. 2002;11:132–141.
- Maunsell E, Pogany L, Barrera M, Shaw AK, Speechley KN. Quality of life among long-term adolescent and adult survivors of childhood cancer. Journal of Clinical Oncology. 2006;24:2527–2535.
- Harila MJ, Salo J, Lanning M, Vilkkumaa I, Harila-Saari AH. High health-related quality of life among long-term survivors of childhood acute lymphoblastic leukemia. Pediatric Blood & Cancer. 2010;55:331–336.
- Testa MA, Simonson DC. Assesment of quality-of-life outcomes. N Engl J Med. 1996;334:835–840.
- Bullinger M. Erfassung der gesundheitsbezogenen Lebensqualität mit dem SF-36-Health Survey Bundesgesundheitsbl, Gesundheitsforsch, Gesundheitsschutz. 2000;43:190–197.
- Reulen RC, Winter DL, Lancashire ER, Zeegers MP, Jenney ME, et al. Health-status of adult survivors of childhood cancer: a large-scale population-based study from the British Childhood Cancer Survivor Study. Int J Cancer. 2007;121:633–640.
- Moe PJ, Holen A, Glomstein A, Madsen B, Hellebostad M, et al. Long-term survival and quality of life in patients treated with a national all protocol 15–20 years earlier: IDM/HDM and late effects? Pediatr Hematol Oncol. 1997;14:513–524.
- Zeltzer LK, Lu Q, Leisenring W, Tsao JC, Recklitis C, et al. Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer Epidemiol Biomarkers Prev. 2008;17:435–446.
- Kuehni CE, Rueegg CS, Michel G, et al. Cohort profile: the Swiss Childhood Cancer Survivor Study. 2011. Int J Epidemiol accepted.
- Michel G, von der Weid NX, Zwahlen M, Adam M, Rebholz CE, et al. The Swiss Childhood Cancer Registry: rationale, organisation and results for the years 2001–2005. Swiss Medical Weekly. 2007;137:502–509.
- Robison LL, Mertens AC, Boice JD, Breslow NE, Donaldson SS, et al. Study design and cohort characteristics of the Childhood Cancer Survivor Study: a multi-institutional collaborative project. Med Pediatr Oncol. 2002;38:229–239.
- Hawkins MM, Lancashire ER, Winter DL, Frobisher C, Reulen RC, et al. The British Childhood Cancer Survivor Study: Objectives, methods, population structure, response rates and initial descriptive information. Pediatr Blood Cancer. 2008;50:1018–1025.
- Ware JE, Kosinski M, Dewey JE. Lincoln, RI: QualityMetric Incorporated; 2000. How to score version 2 of the SF-36®Health Survey.
- Morfeld M, Bullinger M, Nantke J, Brahler E. [The version 2.0 of the SF-36 Health Survey: results of a population-representative study]. Soz Praventivmed. 2005;50:292–300.
- Reulen RC, Zeegers MP, Jenkinson C, Lancashire ER, Winter DL, et al. The use of the SF-36 questionnaire in adult survivors of childhood cancer: evaluation of data quality, score reliability, and scaling assumptions. Health Qual Life Outcomes. 2006;4:77.
- Bellach BM. Experiences, results, perspectives]. Gesundheitswesen 61 Spec No; 1999. [The 1998 Federal Health Survey. pp. S55–56.
- Leplege A, Ecosse E, Verdier A, Perneger TV. The French SF-36 Health Survey: Translation, cultural adaptation and preliminary psychometric evaluation. Journal of Clinical Epidemiology. 1998;51:1013–1023.
- Apolone G, Mosconi P. The Italian SF-36 Health Survey: translation, validation and norming. J Clin Epidemiol. 1998;51:1025–1036.
- Ellert U, Bellach BM. Gesundheitswesen 61 Spec No; 1999. [The SF-36 in the Federal Health Survey–description of a current normal sample]. pp. S184–190.
- Kuehni CE, Strippoli MP, Rueegg CS, Rebholz CE, Bergstraesser E, et al. Educational achievement in Swiss childhood cancer survivors compared with the general population. 2011. Cancer accepted.
- Germann U. Neuchâtel: Bundesamt für Statistik; 2005. Abschlussbericht zur Volkszählung 2000.
- Sprangers MA, Schwartz CE. The challenge of response shift for quality-of-life-based clinical oncology research. Ann Oncol. 1999;10:747–749.
- O’Leary TE, Diller L, Recklitis CJ. The effects of response bias on self-reported quality of life among childhood cancer survivors. Qual Life Res. 2007;16:1211–1220.
- Filipp S-H, Ferring D. Zur inhaltlichen Bestimmung und Erfassung von Lebensqualität im Umfeld schwerer körperlicher Erkrankungen. Praxis der Klinischen Verhaltensmedizin und Rehabilitation. 1991;4:274–283.
- Parry C, Chesler MA. Thematic evidence of psychosocial thriving in childhood cancer survivors. Qual Health Res. 2005;15:1055–1073.
- Barakat LP, Alderfer MA, Kazak AE. Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. J Pediatr Psychol. 2006;31:413–419.
Source: PubMed