Parental concern can play an important role in overall management of children with serious chronic illness. We quantitatively assessed the concerns of parents of children with hydrocephalus, using the Hydrocephalus Concerns Questionnaire for parents (HCQ-P).
Over a 12-month study period, parents of 332 children with hydrocephalus (mean age 11.7 years, SD 3.8) attending a routinely scheduled out-patient clinic at the Hospital for Sick Children, Toronto, completed the HCQ-P.
HCQ-P scores were widely distributed, with mean maternal (N = 283) and paternal (N = 137) scores of 0.53 (SD 0.30) and 0.51 (SD 0.29), respectively (0 = least concerned, 1 = most concerned). Based on a multivariable regression model (adjusted R (2) = 0.49), important associations with greater maternal concern were: Worse child cognitive health (p