English abstract
Objective: Our study aimed to develop a survey that could be used by nurses during regular cystic fibrosis (CF) clinic visits, providing clinicians with a standardized means of longitudinally assessing and monitoring symptom progression in their patients. In addition, the use of this survey would provide an opportunity for patient engagement and relationship building, thereby enhancing patient education and improving adherence to treatment. This is the first such survey designed specifically for use in Arab populations. Methods: The Cystic Fibrosis Symptom Progression Survey (CF-SPS) was developed using previously published patient reported outcomes relating to pulmonary exacerbations in CF. It contains 10 items that provide a patient-focused account of symptoms. The survey was translated into Arabic and was completed by 12 patients on 139 occasions over 22 months. The psychometric properties of the survey were evaluated, as was the relationship between the survey findings and other known clinical measures of health status in CF. Results: The CF-SPS performs well as a psychometrically valid clinical tool, with good internal consistency as determined by Cronbach's alpha analysis. Our results suggest that the CF-SPS is able to identify significant declines in health status in line with routine clinical patient assessment (chest sounds, body mass index and admissions). As such it is a useful tool that can support clinical decision making in the care of Arabic speaking CF patients. Conclusion: We recommend the CF-SPSa (Arabic version) as a valid tool for the longitudinal monitoring of symptom progression in CF in Arabic speaking populations.
