Post-operative trajectories in children with severe neurological impairment : a feasibility pilot study

Children with severe neurological impairment (SNI) have lifelong central nervous system disorders and frequently undergo major surgery to manage complex health conditions. Recent evidence suggests that some children with SNI experience unexpected post-operative functional decline (PoFD) that may be prolonged or permanent; however, PoFD remains poorly characterized in this population. Human adult and preclinical literature increasingly suggest that surgery-induced inflammation may contribute to post-operative decline, yet peri-operative inflammatory trajectories in children with SNI have not been examined. This pilot study evaluated the feasibility of conducting a prospective longitudinal peri-operative study in children with SNI undergoing major orthopedic surgery, while also generating preliminary data on early post-operative recovery patterns. Primary feasibility outcomes included quantitative measures (recruitment, protocol delivery, retention, and outcome completion) and qualitative evaluation of practicality, acceptability, and implementation. Secondary exploratory outcomes included child function measured using the Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire, child and caregiver quality of life, and the child’s peri-operative inflammatory profile. Fourteen participants were enrolled (9 SNI; 5 controls). Consent-to-approach proportions were 70% in the SNI group and 60% in controls, with recruitment improving over time as study procedures became more integrated within clinical workflows. Milestone-level adherence was 84% in the SNI group and 100% in controls; however, participant-level (caregiver-child) adherence was lower (46% SNI; 60% controls), reflecting challenges in sustaining complete longitudinal participation. Overall outcome completion was 83%. Qualitative findings demonstrated that feasibility was dynamic and strongly shaped by alignment with clinical workflows, outpatient logistics, and cumulative family burden. Participation appeared adaptive, with families often remaining engaged while modifying the extent and type of participation feasible over time. Exploratory findings demonstrated declines in function and caregiver quality of life among children with SNI at six weeks post-operatively, particularly in domains related to mobility, positioning, and comfort. Biomarker collection was highly feasible at peri-operative timepoints, but more limited during outpatient follow-up. This study demonstrates that prospective longitudinal peri-operative research in children with SNI is feasible when supported by flexible, family-centred study design and strong integration within clinical care systems, providing a foundation for future study on PoFD in this population.