Health-related Quality of Life in Adult Survivors of Childhood Wilms Tumor or Neuroblastoma: A Report from the Childhood Cancer Survivor Study

Background: Long-term survivors of Wilms tumor and neuroblastoma may experience significant late adverse effects from their disease and its therapy. Little is known, however, about the health-related quality of life experienced by these survivors.

Procedure: Health-related quality of life, measured by the 36-Item Short Form Health Survey (SF-36), was assessed from self-report in adult survivors of Wilms tumor (N = 654) and neuroblastoma (N = 432) who participated in the Childhood Cancer Survivor Study.

Results: More than 90% of the study population was 18-34 years old at interview, and 58% were females. There was no significant difference on any SF-36 subscale or summary scale between the two diagnostic groups. On average, survivors reported no decrement on the Physical Component Summary scale of the SF-36 when compared to population norms. However, both groups scored significantly below the population mean score (50) on the Mental Component Summary Scale of the SF-36 (Wilms tumor mean = 41.66, standard error = 2.19, P < 0.0001; neuroblastoma mean = 42.41, standard error = 2.23, P < 0.0001) reflecting decreased emotional health. Independent risk factors for lower scores on this scale included female gender, Native American race, unemployment, and household income below $20,000.

Conclusions: Adult survivors of childhood Wilms tumor and neuroblastoma do not differ from population norms on most health-related quality of life (HRQL) measures. These data, however, indicate that the emotional well being of adult survivors may be compromised. Health care providers should be aware of the risk of adverse outcomes in emotional health even many years after treatment and cure.