Development of a self-management behaviors questionnaire for cystic fibrosis

Study objectives: This study reports on the reliability and initial validation of a new measure, the Self-Management Questionnaire for Cystic Fibrosis (SMQ-CF), that assesses selfmanagement behaviors used by cystic fibrosis (CF) caregivers. Monitoring and treatment behaviors for respiratory disease, malabsorption and nutrition are included. Design: The study is divided into a pilot phase for development, reliability analysis and content validation and a construct validation phase to examine the relation between SMQ-CF, patient age, and disease status. It was hypothesized that self-management behavior increases as disease severity increases and that caregivers report less self-management behavior as a child matures. Setting: Subjects were recruited from three large urban CF Centers. Participants: Primary caregivers of CF children aged 0-18 years with mild to severe disease were surveyed. Measurements and Results: The SMQ-CF is a 46-item written questionnaire using 5-point response scales. Internal consistency was high (Cronbach's alpha = 0.95 for the total scale). Validity is supported by the results of factor and multivariate analyses. Twelve first-order factors were identified that are consistent with conceptual item groupings. Significant relationships were demonstrated among the SMQ-CF factors, patient age and disease status. The SMQ-CF predicted 35% of the variance in patient age and NIH Clinical Score. Conclusions: The SMQ-CF appears to be a reliable measure of self-management behavior in cystic fibrosis. The content validity and relationships with patient age and disease status support the utility of the behavioral measure for CF caregivers.