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Self-reported health-related quality of life of children and adolescent survivors of extracranial childhood malignancies: a Finnish nationwide survey

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Abstract

Purpose

The purpose of this Finnish total cohort survey was to assess and compare the self-reported health-related quality of life (HRQL) in childhood cancer survivors to that of matched controls, to analyse demographic and disease-related factors explaining survivors’ HRQL, and to compare the results of two different HRQL instruments, 16D/17D and PedsQL™.

Methods

Questionnaires were mailed to 384 childhood cancer survivors and their randomly selected gender-, age- and living place-matched controls. Eligible survivors (aged 11–18 years) had been treated for extracranial malignancies ≤16 years of age, had survived ≥4 years after the diagnosis, and were currently free of cancer.

Results

Of them, 203 (52.9%) survivors and 266 (30.4%) controls replied. Survivors reported higher HRQL than their controls. Diagnostic group, additional non-cancer diagnosis, need of remedial education, and self-rated unhappiness correlated significantly with HRQL. The survivors of Wilms tumor, or neuroblastoma, had lower HRQL scores than the reference group (leukemia). The studied variables explained only 28% of the variation in HRQL scores among survivors. Instrument correlations were moderate (R = 0.40–0.65).

Conclusions

Our findings suggest that the diagnosis of Wilms tumor or neuroblastoma may carry substantial risks for lower HRQL. The available background variables, however, explained less than one-third of the variation in the HRQL scores. Thus, other factors than demographic or cancer-related seem to play a significant role as determinants of HRQL.

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Acknowledgments

This study was supported by research grants from The Finnish Cancer Society, The Cancer Society of South-West Finland, Nona and Kullervo Väre Foundation, and Turku University of Applied Sciences.

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Authors and Affiliations

  1. Department of Nursing Science, University of Turku, Turku, Finland

    Susanna Mört & Sanna Salanterä

  2. Department of Pediatrics, Turku University Hospital, Turku, Finland

    Jaakko Matomäki, Toivo T. Salmi & Päivi M. Lähteenmäki

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  1. Susanna Mört
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Correspondence to Susanna Mört.

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Mört, S., Salanterä, S., Matomäki, J. et al. Self-reported health-related quality of life of children and adolescent survivors of extracranial childhood malignancies: a Finnish nationwide survey. Qual Life Res 20, 787–797 (2011). https://doi.org/10.1007/s11136-010-9798-y

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