Prospective evaluation of legal difficulties and quality of life in adult survivors of childhood cancer

Abstract

Adult survivors of childhood cancer (ASCC), especially those of the central nervous system (CNS), have increased risks of educational and social difficulties. It is therefore hypothesized they are more likely to encounter legal difficulties (LDs), such as workplace discrimination and disability insurance denials, which may negatively affect their quality of life (QoL). We developed a survey to collect information on patients' legal needs. QoL was assessed using the Functional Assessment of Cancer Therapy (FACT). We prospectively approached 112 ASCC, 111 (99.1%) of whom completed the survey. The median age of respondents was 7 years at diagnosis and 31 years at survey completion. CNS tumors were the most common malignancy (32.4%). LDs were common overall (40.7%), though more prevalent in patients with CNS versus non-CNS tumors (58.6% vs. 32.3%; P = 0.023). The most prevalent LD was workplace discrimination (58.3%). On multivariate analysis, CNS tumor was the only variable significantly associated with LDs (OR = 4.49, P = 0.041). Individuals with LDs had lower QoL scores compared to those without LDs (79.96 versus 91.83 on the FACT; P = 0.005). On multivariate analysis, individuals with LDs had lower QoL scores (14.95 points lower on the FACT), which is both clinically and statistically significant (P = 0.047). Legal difficulties are common in adult survivors of childhood cancer, especially those with brain tumors. Furthermore, individuals with legal difficulties have worse quality of life. Research is needed to develop effective and accessible legal resource programs.