Quality of Life in Pediatric Neurosurgery: Comparing Parent and Patient Perceptions

Background: In the pediatric neurosurgical population, understanding how to mitigate the effects of disease on children's physical ability, social and psychological well-being, and education can have lasting effects on their development and family. Understanding parents' perceptions of their children's health-related quality of life (HRQoL) is crucial in proper counseling, management of expectations, establishment of a healthy patient/parent-physician relationship, and understanding the role and impact of health care. In this study we sought to examine the differences between patient and parent perceptions of HRQoL and the factors that influence these differences.

Methods: A standardized survey (PedsQL Inventory) to assess physical, psychological, and social function and school performance was administered to both parents and patients in a general pediatric neurosurgery outpatient clinic from 2015-2018.

Results: 197 encounters with 179 patients occurred in the study period. There were 105 male and 92 female patients across various ethnic backgrounds. The most common diagnoses were tumor (23.4%) and vascular malformation (16.2%). Parent overall scores were lower than their children's (72.5 vs. 76.4, P < 0.01). Parent scores of physical function (74.3 vs. 78.7, P < 0.01) and overall psychosocial function (71.5 vs. 75.3, P < 0.01) were also lower. Parent scores in all domains of the PedsQL were correlated with overall score difference (P < 0.01), but only child scores of overall psychosocial (P < 0.03) and school function (P < 0.04) were correlated with overall score difference.

Conclusions: Parents have more negative assessments of their children's HRQoL compared with their children in all domains assessed by the PedsQL. Further research is needed to identify factors that contribute to these discrepancies.