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Keywords

Arnold-Chiari malformation, Chiari malformation, hindbrain herniation, quality of life, syringomyelia, syrinx

 

Authors

  1. Mueller, Diane M.
  2. Oro', John J.

ABSTRACT

Objective: The Chiari Symptom Profile (CSP) was developed to provide a quantitative assessment of self-reported Chiari (CMI)-related symptoms and their impact on the individual's quality of life.

 

Methods: The instrument was developed in three phases. Phase I consisted of instrument development using exploratory item analysis from the literature and direct patient evaluations. The item pool was then analyzed and tested on a convenience sample of eight CMI patients. Interitem correlation matrix suggested redundancy of 13 questions. These items were discarded, resulting in a final questionnaire consisting of 57 items, measuring four realms: physical, functional, psychological, and social. Phases II and III tested the reliability and validity of the instrument using a large sample of patients diagnosed with Chiari/syringomyelia.

 

Results: Statistical analysis confirmed that the CSP has excellent validity and reliability with a Cronbach's alpha of .958 (p = .0001) and factor loadings ranging from .784 to .321.

 

Conclusion: The CSP is a self-reported, Chiari-/syringomyelia-specific instrument intended to provide a quantitative analysis of symptoms and their impact on the individual's quality of life. The CSP has shown statistically significant content validity, internal consistency, and test-retest reliability. The CSP will enhance the provider's understanding of Chiari-/syringomyelia-related symptoms, quantify the impact of self-reported symptoms on quality of life, help to determine if interventions are of benefit, and allow comparison of symptomatic improvement/outcome following different surgical techniques.