Development , validation , and incorporation of a small number of disease-specific patient-based instruments will improve the quality of research and care of CM-I patients
OBJECT Chiari malformation Type I ( CM-I ) is a common and often debilitating neurological disease .
Efforts to improve treatment of CM-I are impeded by inconsistent and limited methods of evaluating clinical outcomes .
The Chiari Symptom Profile: Development and Validation of a Chiari-/Syringomyelia-Specific Questionnaire
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 , result ing in a final question naire 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 underst and ing 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
Development , validation , and incorporation of a small number of disease-specific patient-based instruments will improve the quality of research and care of CM-I patients
OBJECT Chiari malformation Type I ( CM-I ) is a common and often debilitating neurological disease .
Efforts to improve treatment of CM-I are impeded by inconsistent and limited methods of evaluating clinical outcomes .