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™.
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.
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).
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.