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Quality of Life in Individuals Affected by Arnold Chiari Malformation: Comparison and Validation of a Measurement Instrument

[ Vol. 18 , Issue. 4 ]

Author(s):

Antonio Martinez-Sabater*, Maria Luisa Ballestar-Tarin, Miriam Vazquez-Seoane, Lucia Mari-Avargues, Carlos Saus-Ortega and Maria del Carmen Casal-Angulo   Pages 388 - 396 ( 9 )

Abstract:


Background: Introduction. Arnold Chiari Malformation (ACM) type I is a pathology whose symptomatology has repercussions for the quality of life of those affected by it. Quality-of-life measurement instruments can allow the severity of the impact of Chiari type I malformation on patients’ lives to be monitored. The Chiari Symptom Profile (CSP) is a valid and reliable instrument designed for this purpose. The aim of the study was to adapt the CSP to Spanish and to explore the reliability and validity of this construct in the context of Spanish-speaking patients with ACM.

Methods: The English CSP instrument has a good internal validity and consistency. We used a standardized procedure for the linguistic validation of the translated scale. For the psychometric validation, we recruited 215 individuals with ACM and calculated the Cronbach&339;s alpha for the sample. The construct was validated by analyzing the age, sex, and presence of syringomyelia, as well as by correlating the results with the sickness impact profile 30 (SIP-30) questionnaire, which can also evaluate quality of life in this type of patient.

Results: The Spanish version of the CSP has good internal consistency and validity (Cronbach’s alpha of 0.90); age, sex, and the presence of syringomyelia does not significantly affect the quality of life of patients with ACM. There was a direct and significant correlation between the Spanish CSP and the validated SIP-30 questionnaire results (p < 0.05). Further analysis showed a positive correlation for the physical and psychological scopes of the CSP and SIP-30 questionnaires, but not for their functional and social scopes.

Conclusion: This version of the CSP is a valid and reliable instrument for measuring quality of life in patients with ACM in the Spanish context.

Keywords:

Quality of life, rare diseases, arnold-chiari malformation, validation studies, syringomyelia, validity, reliability.

Affiliation:

Nursing Department, Faculty of Nursing and Podiatry, University of Valencia, Valencia, Nursing Department, Faculty of Nursing and Podiatry, University of Valencia, Valencia, Nursing Department, Faculty of Nursing and Podiatry, University of Valencia, Valencia, Nursing Department, Faculty of Nursing and Podiatry, University of Valencia, Valencia, Nursing Department, Faculty of Nursing and Podiatry, University of Valencia, Valencia, Nursing Department, Faculty of Nursing and Podiatry, University of Valencia, Valencia

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