Title:Quality of Life in Individuals Affected by Arnold Chiari Malformation: Comparison and Validation of a Measurement Instrument
Volume: 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
Affiliation:
- Nursing Department, Faculty of Nursing and Podiatry, University of Valencia, Valencia,Spain
Keywords:
Quality of life, rare diseases, arnold-chiari malformation, validation studies, syringomyelia, validity, reliability.
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.