LAUSR

Health-related Quality of Life (HRQoL) broadly encompasses many physical, economical, and psychosocial factors. In pediatric neurosurgery, patient and family HRQoL is an important factor as chronic, debilitating disease affects patients and their caregivers considerably. HRQoL affects a child's physical ability, social and psychological wellbeing, and educational performance. Understanding parental perception of their child's HRQoL is important to better understand family relationships and manage expectations. In this study we sought to examine the differences between patient and parent perceptions of HRQoL and the factors that influence these differences. A standardized survey was systematically administered by a healthcare provider in an outpatient neurosurgery clinic for a single neurosurgeon from 2015 to 2018. Surveys were administered to both patient and parents for each clinic visit. The survey tool assessed physical, psychological, and social function and school performance. Data were analyzed using IBM SPSS 26. This study was conducted under IRB approval. A total of 201 encounters with 182 patients were included. On average, parent and patient assessments of overall QoL differed by 10.5% (SD 10.4) and assessments of physical function by 13% (SD 16.9). Assessments of psychosocial wellbeing differed by 11.1% (SD 9.8). Across every domain assessed, parents' reported scores were lower than children's (P < .01). There was a negative correlation between patient psychosocial scores and overall score differences (r = −0.15, P < .03). Overall score differences were not influenced by race, ethnicity, age at diagnosis, or repeat procedures. Assessment of patient HRQoL often variwa between patients and their caregivers. Parents typically have more negative assessments of their children's HRQoL, and this difference presented as lower scores reported by parents compared to patients in our study. We believe that understanding these differences in perception will help guide supportive services and expectation management when caring for and counseling pediatric neurosurgical patients and their families.