Parent- versus child-reported functional health status after the Fontan procedure

Abstract

Objective: We sought to compare perceptions of functional health status between children who had undergone a Fontan procedure and their parents.

Methods: Fontan procedure survivors 10 to 18 years of age were included in the study if the child completed the Child Health Questionnaire (CHQ) and the parent completed the parent form to assess the child's functional health status. Comparisons were made between raw domain scores for the parent- and child-completed CHQs.

Results: Between March 2003 and April 2004, 1078 Fontan survivors were screened. Of the 546 eligible and consented patients, 354 were 10-18 years of age and 328 parent/child pairs completed the CHQs. Parents reported significantly lower scores (worse functioning) for their children than the children reported for themselves in the domains of physical functioning (P < .01), impact on school or activities from emotional and behavioral problems (P < .01), impact on school or activities from physical health issues (P < .01), general behavior (P < .01), mental health (P < .01), self-esteem (P < .01), and general health perceptions (P < .01). No significant differences were noted for the domains of bodily pain, family cohesiveness, or family activities. For the physical functioning domain, factors contributing to lower scores for parent versus child reports included pulmonary artery anomalies and fenestration at the time of the Fontan operation. Lower parent-reported scores also were associated with more noncardiac health problems in the child.

Conclusions: Parents' perceptions of the functional health status of their children after the Fontan procedure were worse than the children's perceptions.

FIGURE 1

Fontan procedure study participants. ^a These 43 subjects reached 10 years of age after initial screening but before enrollment completion, thus becoming eligible to complete the CHQ-CF87. ^b 43 + 285 = 328 study patients.

FIGURE 2

Distribution of parent-completed CHQ (CHQ-PF50) domain z scores for the 328 subjects whose children completed the CHQ (CHQ-CF87). The middle line in each box indicates the median, asterisks indicate the means, the left and right edges of the boxes represent the 25th and 75th percentiles, respectively, and the whiskers indicate 1.5 times the interquartile range. Circles indicate outliers.

FIGURE 3

Differences in raw domain scores for the parent-completed CHQ (CHQ-PF50) for the 328 subjects whose children completed the CHQ (CHQ-CF87). The middle line in each box indicates the median, asterisks indicate the means, the left and right edges of the boxes represent the 25th and 75th percentiles, respectively, and the whiskers indicate 1.5 times the interquartile range. Circles indicate outliers. Significant differences between paired raw domain scores, determined with paired t tests and signed rank tests, are indicated.