Measures of health-related quality of life outcomes in pediatric neurosurgery: literature review
Desai, V. R., Gadgil, N., Saad, S., Raskin, J. S., and Lam, S. K.
BACKGROUND: Improving value in healthcare means optimizing outcomes while minimizing costs. The emerging pay-for-performance era requires understanding the impact of healthcare services on health-related quality of life (HRQoL). Pediatric and surgical subspecialties have yet to fully integrate HRQoL measures into practice. This study aims to review and characterize the HRQoL outcome measures across various pediatric neurosurgical diagnoses.
METHODS: A literature review was performed by searching PubMed and Google Scholar with search terms such as "health-related quality of life" and "pediatric neurosurgery" and then including the specific pathologies for which a HRQoL instrument was found (for example: "health-related quality of life" + "epilepsy"). Each measurement was evaluated based on content and purpose, relative strengths and weaknesses, and validity.
RESULTS: 68 articles were reviewed. Epilepsy, brain tumor, cerebral palsy, spina bifida, hydrocephalus, and scoliosis were diagnoses with published studies using disease-specific HRQoL instruments. General HRQoL instruments were also reported. Internal, test-retest, and/or inter-rater reliability varied across instruments, as did face, content, concurrent, and/or construct validity. Few instruments have been tested enough for robust reliability and validity. Significant variability exists in usage of these instruments in clinical studies within pediatric neurosurgery.
CONCLUSIONS: HRQoL instruments reported in pediatric neurosurgery are currently without standardized guidelines and thus exhibit high variability in use. Clinicians should support the development and application of these methodologies to optimize these instruments, promote standardization of research, improve performance measures to reflect clinically modifiable and meaningful measures, and ultimately lead the national discussion in healthcare quality and patient-centered care.