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Health-related quality of life in young survivors of childhood cancer

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Abstract

Purpose

Childhood cancer and its treatment may affect health-related quality of life (HRQoL) in childhood cancer survivors, but population-based studies in young survivors are scarce. We aimed to: (1) compare HRQoL between young survivors and population norms and (2) find factors that influence parent-reported HRQoL in survivors.

Methods

As part of the Swiss Childhood Cancer Survivor Study, a questionnaire was mailed to parents of survivors aged 8–16 years, registered in the Swiss Childhood Cancer Registry, ≥5 years after diagnosis. We used the KIDSCREEN-27 instrument to compare self- and parent-reported HRQoL between survivors (N = 425) and standardized norms in the five dimensions of physical well-being, psychological well-being, autonomy, peers and school environment (mean = 50, SD = 10). We then used multivariable linear regressions to test the influence of socio-demographic and cancer-related factors on HRQoL.

Results

Self-reported physical well-being was comparable to norms. Other HRQoL dimensions were higher than norms, with the highest mean = 52.2 (p < 0.001) for school environment. Parent-reported HRQoL in survivors was comparable to population norms; only physical well-being was lower (mean = 47.1, p < 0.001), and school environment was higher (mean = 51.1, p = 0.035). Parent-reported HRQoL was lower for survivors of CNS tumors (physical well-being: β = −5.27, p = 0.007; psychological well-being: β = −4.39, p = 0.044; peers β = −5.17, p = 0.028), survivors of neuroblastoma (psychological well-being β = −5.20, p = 0.047), and survivors who had had a relapse (physical well-being β = −5.41, p = 0.005).

Conclusions

Assessing HRQoL during follow-up care, with a focus on physical well-being, specific diagnoses (e.g., CNS tumor) and late complications (e.g., relapse) might help to early identify problems and offer support to survivors with reduced HRQoL.

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Acknowledgments

We thank all childhood cancer survivors and their parents who participated in our survey. We thank the study team of the SCCSS (Rahel Kuonen, Grit Sommer, Erika Brantschen-Berclaz, Julia Koch, Fabienne Liechti), the data managers of the SPOG (Claudia Anderegg, Nadine Beusch, Rosa-Emma Garcia, Franziska Hochreutener, Friedgard Julmy, Nadine Lanz, Heike Markiewicz, Genevieve Perrenoud, Annette Reinberger, Renate Siegenthaler, Verena Stahel) and the team of the SCCR (Vera Mitter, Elisabeth Kiraly, Marlen Spring, Christina Krenger, Priska Wölfli). We also thank Ben Spycher for his statistical advice, and Kali Tal for her editorial assistance. This study was supported by Cancer League Aargau (www.krebsliga-aargau.ch), the Bernese Cancer League (www.bernischekrebsliga.ch), and Swiss Cancer Research (grant 02631-08-2010). GM was funded by the Swiss National Science Foundation (GM: Ambizione-Fellowship-grant PZ00P3_121682, PZ00P3-141722). The work of the SCCR is supported by the Swiss Paediatric Oncology Group (www.spog.ch), Schweizerische Konferenz der kantonalen Gesundheitsdirektorinnen und –direktoren (www.gdk-cds.ch), Swiss Cancer Research (www.krebsforschung.ch), Kinderkrebshilfe Schweiz (www.kinderkrebshilfe.ch), Ernst-Göhner Stiftung, Stiftung Domarena, CSL Behring (www.cslbehring.ch) and National Institute of Cancer Epidemiology and Registration (www.nicer.ch).

Conflict of interest

The authors declare that they have no conflict of interest.

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Authors and Affiliations

  1. Institute of Social and Preventive Medicine, University of Bern, Finkenhubelweg 11, 3012, Bern, Switzerland

    L. Wengenroth, M. E. Gianinazzi, C. S. Rueegg, C. E. Kuehni & G. Michel

  2. Department of Health Sciences and Health Policy, University of Lucerne, Frohburgstrasse 3, Postfach 4466, 6002, Lucerne, Switzerland

    M. E. Gianinazzi, C. S. Rueegg & G. Michel

  3. Division of Pediatric Hematology/Oncology, University Children’s Hospital, Inselspital, Freiburgstrasse, 3010, Bern, Switzerland

    S. Lüer

  4. Department of Pediatric Oncology, University Children’s Hospital Zurich, Steinwiesstrasse 75, 8032, Zurich, Switzerland

    E. Bergstraesser

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  1. L. Wengenroth
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Wengenroth, L., Gianinazzi, M.E., Rueegg, C.S. et al. Health-related quality of life in young survivors of childhood cancer. Qual Life Res 24, 2151–2161 (2015). https://doi.org/10.1007/s11136-015-0961-3

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