RESUMEN
OBJECTIVE: To implement a quality improvement based system to measure and improve data quality in an observational clinical registry to support a Learning Healthcare System. DATA SOURCE: ImproveCareNow Network registry, which as of September 2019 contained data from 314,250 visits of 43,305 pediatric Inflammatory Bowel Disease (IBD) patients at 109 participating care centers. STUDY DESIGN: The impact of data quality improvement support to care centers was evaluated using statistical process control methodology. Data quality measures were defined, performance feedback of those measures using statistical process control charts was implemented, and reports that identified data items not following data quality checks were developed to enable centers to monitor and improve the quality of their data. PRINCIPAL FINDINGS: There was a pattern of improvement across measures of data quality. The proportion of visits with complete critical data increased from 72 percent to 82 percent. The percent of registered patients improved from 59 percent to 83 percent. Of three additional measures of data consistency and timeliness, one improved performance from 42 percent to 63 percent. Performance declined on one measure due to changes in network documentation practices and maturation. There was variation among care centers in data quality. CONCLUSIONS: A quality improvement based approach to data quality monitoring and improvement is feasible and effective.
RESUMEN
OBJECTIVE: To examine the role of provider communication about psychosocial causes of abdominal pain and recommendations for psychosocial intervention during a gastroenterology clinic visit in predicting families' causal beliefs and perceptions of treatment acceptability. METHOD: Participants were 57 children with a diagnosed or suspected abdominal pain-related functional gastrointestinal disorder (FGID) presenting for an outpatient gastroenterology follow-up visit and their accompanying parent. Children and parents completed questionnaires assessing child anxiety and abdominal pain severity, recall of provider communication about causes of abdominal pain and recommendations for intervention, their own causal beliefs about pain, and perceived acceptability of cognitive behavioral therapy (CBT) and standard medical treatment (SMT) after reading descriptions of each treatment. Providers completed a questionnaire assessing their perceptions and communication about the causes of the child's abdominal pain and perceived acceptability of CBT. RESULTS: Provider communication about psychosocial causes and interventions was reported infrequently by parents, children, and providers. Parents rated psychosocial causes for abdominal pain as less likely than physical causes, and children and parents rated CBT as less acceptable than SMT. Parents' recall of provider communication about psychosocial causes was associated with their own causal beliefs about pain and their perceived acceptability of CBT. Children's and parents' recall of provider recommendations for psychosocial intervention was associated with their perceived acceptability of CBT. CONCLUSION: Results highlight the importance of provider communication about psychosocial contributors to abdominal pain and psychosocial interventions for children with FGIDs. Medical and mental health providers can partner to deliver care to children with FGIDs using a biopsychosocial approach.
Asunto(s)
Dolor Abdominal/psicología , Comunicación en Salud/normas , Conocimientos, Actitudes y Práctica en Salud , Aceptación de la Atención de Salud/psicología , Dolor Abdominal/etiología , Dolor Abdominal/terapia , Adolescente , Niño , Terapia Cognitivo-Conductual , Femenino , Humanos , Masculino , PadresRESUMEN
OBJECTIVES: The fecal pancreatic elastase-1 (FE-1) test is considered a simple, noninvasive, indirect measure of pancreatic function. We aimed to evaluate the performance of the FE-1 test compared with the direct pancreatic function test (PFT) with secretin stimulation in children. METHODS: Data of 70 children (6 months-17 years of age) who had both FE-1 test and PFT were analyzed. RESULTS: The average FE-1 concentration was 403â±â142âµg/g. Eleven children had concentrations below 200â µg/g, 23 between 201 to 500âµg/g, and 36 were above 500âµg/g. The average pancreatic elastase activity measured on direct stimulation was 49.1â±â38.6 âµmolâ·âminâ(-1)·âml(-1) and 11 children had activity below the established cutoff (10.5âµmolâ·âmin(-1)â·âml(-1)). Among the 11 children with pathologic PFT, 7 had normal FE-1, 4 were in the intermediate range (201-500âµg/g), and none were in the low range (<200âµg/g). Among the 59 children with normal direct PFT 11 (19%) had pathologic (<200âµg/g) and 19 (32%) had intermediate FE-1 tests. Twenty-nine children had both normal FE-1 concentration and normal PFT, giving a negative predictive value of 80%. The correlation between pancreatic elastase activity and FE-1 concentration was poor (râ=â0.190). The sensitivity of the FE-1 test was found to be 41.7%, whereas the specificity was 49.2%. The positive predictive value of the FE-1 test was only 14%. CONCLUSIONS: The FE-1 test is a simple, noninvasive, indirect method; however, ordering physicians should be aware of its limitations. It can give false-positive results and has low sensitivity in children with mild pancreatic insufficiency without cystic fibrosis and in those with isolated pancreatic enzyme deficiencies.