Effectiveness of the Chiari Health Index for Pediatrics instrument in measuring postoperative health-related quality of life in pediatric patients with Chiari malformation type I

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  • 1 Surgical Outcomes Center for Kids, Monroe Carell Jr. Children’s Hospital at Vanderbilt;
  • 2 Vanderbilt University School of Medicine; and
  • 3 Department of Biostatistics, Vanderbilt University Medical Center, Nashville, Tennessee;
  • 4 Department of Neurological Surgery, Mt. Sinai Hospital, New York, New York; and
  • 5 Department of Neurological Surgery, Vanderbilt University Medical Center, Nashville, Tennessee
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OBJECTIVE

The authors’ previously published work validated the Chiari Health Index for Pediatrics (CHIP), a new instrument for measuring health-related quality of life (HRQOL) for pediatric Chiari malformation type I (CM-I) patients. In this study, the authors further evaluated the CHIP to assess HRQOL changes over time and correlate changes in HRQOL to changes in symptomatology and radiological factors in CM-I patients who undergo surgical intervention. Strong HRQOL evaluation instruments are currently lacking for pediatric CM-I patients, creating the need for a standardized HRQOL instrument for this patient population. This study serves as the first analysis of the CHIP instrument’s effectiveness in measuring short-term HRQOL changes in pediatric CM-I patients and can be a useful tool in future CM-I HRQOL studies.

METHODS

The authors evaluated prospectively collected CHIP scores and clinical factors of surgical intervention in patients younger than 18 years. To be included, patients completed a baseline CHIP captured during the preoperative visit, and at least 1 follow-up CHIP administered postoperatively. CHIP has 2 domains (physical and psychosocial) comprising 4 components, the 3 physical components of pain frequency, pain severity, and nonpain symptoms, and a single psychosocial component. Each CHIP category is scored on a scale, with 0 indicating absent and 1 indicating present, with higher scores indicating better HRQOL. Wilcoxon paired tests, Spearman correlations, and linear regression models were used to evaluate and correlate HRQOL, symptomatology, and radiographic factors.

RESULTS

Sixty-three patients made up the analysis cohort (92% Caucasian, 52% female, mean age 11.8 years, average follow-up time 15.4 months). Dural augmentation was performed in 92% of patients. Of the 63 patients, 48 reported preoperative symptoms and 42 had a preoperative syrinx. From baseline, overall CHIP scores significantly improved over time (from 0.71 to 0.78, p < 0.001). Significant improvement in CHIP scores was seen in patients presenting at baseline with neck/back pain (p = 0.015) and headaches (p < 0.001) and in patients with extremity numbness trending at p = 0.064. Patients with syringomyelia were found to have improvement in CHIP scores over time (0.75 to 0.82, p < 0.001), as well as significant improvement in all 4 components. Additionally, improved CHIP scores were found to be significantly associated with age in patients with cervical (p = 0.009) or thoracic (p = 0.011) syrinxes.

CONCLUSIONS

The study data show that the CHIP is an effective instrument for measuring HRQOL over time. Additionally, the CHIP was found to be significantly correlated to changes in symptomatology, a finding indicating that this instrument is a clinically valuable tool for the management of CM-I.

ABBREVIATIONS CHIP = Chiari Health Index for Pediatrics; CM-I = Chiari malformation type I; HRQOL = health-related quality of life; HUI3 = Health Utilities Index Mark 3.

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Contributor Notes

Correspondence Georgina E. Sellyn: Monroe Carell Jr. Children’s Hospital at Vanderbilt, Nashville, TN. georgina.sellyn@vanderbilt.edu.

INCLUDE WHEN CITING Published online December 4, 2020; DOI: 10.3171/2020.7.PEDS20250.

Disclosures The authors report no conflict of interest concerning the materials or methods used in this study or the findings specified in this paper.

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