Development of a core data set for pelvic floor disorder patients registry

Abstract

Objectives: Pelvic floor disorders (PFDs) are important public health concerns due to their increasing prevalence. Hence, there is an increasing need for developing systematically collected quality data to assist appropriate clinical decision-making. This study aimed to develop a core data set for patients with PFDs based on the PFDs registry. Methods: A descriptive cross-sectional study was conducted in 2019. Data were retrieved from electronic databases including PubMed, Embase and Google scholar. Available documents and data systems in clinical centers were also assessed. The Delphi technique was applied to reach a consensus about the data elements using a questionnaire. A panel of experts evaluated the content validity of the questionnaire. Results: We developed a dataset for PFDs that included two classes of data (65 data items) identified from the related literature. In the Delphi survey, 74 data elements were determined by the experts and final data were divided into two demographic and clinical categories that included 12 and 62 data elements, respectively. Conclusions: This dataset has the potential for standardizing the data by providing accurate, consistent, complete and uniform data elements. Furthermore, it can provide valuable research facilities for clinicians and researchers in the healthcare system resulting in improvement of the quality of care and containment of costs.

Designing a minimum data set for the information management system (registry) of spinal canal stenosis: An applied‐descriptive study

“…Most studies on the MDS have also used this classification. The examples include MDSs presented for C‐section anesthesia information management system, 16 traumatic brain injuries, 33 speech therapy, 34 cardiac electrophysiology, 35 patients suffering from pelvic floor disorders, 36 postmortem computed tomography report for anthropological biological profiling, 37 and COVID‐19 registry 18 . The reason for this classification has been the different nature and application of administrative and clinical data.…”

“…Considering the importance of registering socioeconomic data in patients with spinal canal stenosis, for the socioeconomic data class, seven data elements were proposed, all being approved by the experts except for ethnicity. Some of the data proposed in this class had differences from similar studies 36,38 . Considering the effect of type of occupation on the severity of disease as well as the patient's response to the treatment, four data elements were considered for describing the patient's job.…”

“…injuries, 33 speech therapy, 34 cardiac electrophysiology, 35 patients suffering from pelvic floor disorders, 36 postmortem computed tomography report for anthropological biological profiling, 37 and COVID-19 registry. 18 The reason for this classification has been the different nature and application of administrative and clinical data.…”

“…Some of the data proposed in this class had differences from similar studies. 36,38 Considering the effect of type of occupation on the severity of disease as well as the patient's response to the treatment, four data elements were considered for describing the patient's job.…”

“…Some of the data proposed in this class had differences from similar studies. 36 , 38 Considering the effect of type of occupation on the severity of disease as well as the patient's response to the treatment, four data elements were considered for describing the patient's job. Given the wide extent of occupations, for precise determination of the type of job, it was proposed that the job type be chosen based on the official list of Social Welfare Organization Jobs in Iran.…”