Concordance between self-reported symptoms and clinically ascertained peripheral neuropathy among childhood cancer survivors: the St. Jude Lifetime Cohort Study.

Background Childhood cancer survivors are at risk for motor and/or sensory neuropathy. The study evaluates concordance between self-report peripheral-neuropathy (PN) and clinically ascertained PN, and identifies factors associated with misclassification of PN among survivors. Methods The concordance between self-report and clinically ascertained PN was evaluated among 2,933 5+ year childhood cancer survivors (mean age 33.3, SD=8.9). The sensitivity, specificity, and accuracy of self-report peripheral motor neuropathy (PMN) and peripheral sensory neuropathy (PSN) were calculated with reference to clinically-assessed PN. Results Female survivors were more likely than male survivors to have clinically ascertained PMN (8.4% vs. 5.6%, P=0.004). For females, having either PSN or PMN the most sensitive, specific, and accurate self-reported symptom was endorsing 2+ symptoms on the self-report questionnaire (43.2%, 90.3%, and 85.2%, respectively), with kappa of 0.304. For males, having either PSN or PMN the most sensitive, specific, and accurate self-reported symptom was endorsing 2+ symptoms on the self-report questionnaire (38.8%, 90.5%, and 86.3%, respectively) with kappa of 0.242. Age at diagnosis, emotional-distress, and reporting pain in legs in the past 4-weeks were associated with an increased risk for false-positive reporting of PN. Race-White, age at assessment, and emotional -distress were associated with increased risk for false-negative reporting of PN. Conclusions Agreement between self-report and clinically-ascertained PN was poor in survivors. Choosing self-report versus clinical ascertain PN should be carefully considered. Impact The current study identifies the need for a self-report questionnaire that accurately assesses symptoms of PN among cancer survivors.