Purpose:​ The purpose of this study was to elucidate changes in parents’ perceptions of health related quality of life (HRQOL), functional status, and caregiver burden in children with severe cerebral palsy (CP) following extensive orthopedic surgery and to determine the amount of nonmedical out-of-pocket expenses (NOOPEs) incurred during hospitalization.

Background:​ CP is the most common cause of childhood physical disability. Children with severe non-ambulatory CP have multiple complex medical problems and frequently develop hip dislocations and neuromuscular scoliosis;​ these require extensive orthopaedic surgical interventions to prevent progression. The surgical trajectory is costly, resource intensive, and complications are common. Decision-making needs to extend beyond anticipated physical and radiographic improvements to include patient-centered outcomes including HRQOL, functional status, caregiver impact, and financial burden. Currently, research on this second group of outcomes does not exist.

Methods:​ A single group prospective cohort study (N=48) design was used to measure changes pre- and post- surgery. NOOPEs were collected on a daily basis from parents during their child’s hospitalization. A linear mixed-model regression analysis for longitudinal data, incorporating serial patient measurements over one year, was used to assess changes in HRQOL, functional status, and caregiver impact using measures normed for this population (i.e., CPCHILD, ACEND). NOOPEs were calculated using descriptive statistics.

Results:​ Significant declines in HRQOL and functional status were noted at six weeks post-operative with return to baseline at three months. Long-term significant (p = .005) improvements, however, were noted beginning at six months. Caregiver impact did not change significantly over time. The total NOOPEs for the inpatient ranged from $59.00- $6977.50 (Median = $479.30) with 1971.5 missed hours from work.

Conclusion:​ Children with severe CP who undergo extensive orthopaedic surgery and their families experience improvements across a variety of patient-centered outcomes in the long-term following surgery. Nursing has a critical role in assisting families in decision-making around surgery and providing anticipatory guidance and support.