Continued statural growth in older adolescents and young adults with Crohn's disease and ulcerative colitis beyond the time of expected growth plate closure
Published January 22, 2020
Gupta N, Liu C, King E, Sylvester F, Lee D, Boyle B, Trauernicht A, Chen S, Colletti R, ImproveCareNow Network . Continued statural growth in older adolescents and young adults with Crohn's disease and ulcerative colitis beyond the time of expected growth plate closure. Inflamm Bowel Dis 2020
Determined the frequency of continued growth and compared the total height gain beyond the time of expected growth plate closure and the chronological age at achievement of final adult height in Crohn's disease (CD) vs ulcerative colitis (UC) and described height velocity curves in inflammatory bowel disease (IBD) compared with children in the National Health and Nutrition Examination Survey (NHANES).
Establishing the content validity of PROMIS Pediatric pain interference, fatigue, sleep disturbance, and sleep-related impairment measures in children with chronic kidney disease and Crohn’s disease
Published February 12, 2020
Forrest CB, Forrest KD, Clegg JL, de la Motte A, Amaral S, Grossman AB, Furth SL. Establishing the content validity of PROMIS Pediatric pain interference, fatigue, sleep disturbance, and sleep-related impairment measures in children with chronic kidney disease and Crohn’s disease. J Patient Rep Outcomes 2020; 4(1): 11
PROMIS Pediatric patient-reported outcome measures were developed with children from the general population, and their content validity has not been established in children with chronic disease. This study was done to evaluate the content validity of the PROMIS Pediatric Pain Interference and Fatigue measures in children 8–17 years-old with Crohn’s disease and the PROMIS Pediatric Fatigue, Sleep Disturbance, and Sleep-related Impairment measures for children 8–17 years-old with chronic kidney disease.
Measuring engagement in a collaborative learning health system: The case of ImproveCareNow
Published April 6, 2020
, , , , . Measuring engagement in a collaborative learning health system: The case of ImproveCareNow. Learn Health Sys 2020;e10225. https://doi.org/10.1002/lrh2.10225
Collaborative learning health systems have demonstrated improved outcomes for a range of different chronic conditions. Patient and healthcare provider engagement in these systems is thought to be associated with improved outcomes. We have adapted an observational framework to measure, and track over time, engagement in ImproveCareNow, a collaborative learning health system for children with inflammatory bowel disease.
Abdominal Pain After Pediatric Inflammatory Bowel Disease Diagnosis
Published September 8, 2020
Murphy, Lexa K.; Suskind, David L.; Qu, Pingping; Zhou, Chuan,; Gashi, Kaltrina; Kawamura, Joy S.; Palermo, Tonya M.
Although abdominal pain is a hallmark symptom of pediatric inflammatory bowel disease (IBD), limited research has examined pain during the first year after diagnosis. The purpose of this study is to examine prevalence, predictors, and impact of abdominal pain over the 12 months after pediatric IBD diagnosis using data from the ImproveCareNow (ICN) Network.
Organizing for collaboration: An actor-oriented architecture in ImproveCareNow
Published 2020
Seid, Michael; Hartley, David M; Dellal, George; Myers, Sarah; Margolis Peter A;
Collaborative learning health systems (CLHSs) enable patients, clinicians, researchers, and others to collaborate at scale to improve outcomes and generate new knowledge. An organizational framework to facilitate this collaboration is the actor-oriented architecture, composed of (a) actors (people, organizations, and databases) with the values and abilities to self-organize; (b) a commons where they create and share resources; and (c) structures, protocols, and processes that facilitate multiactor collaboration. CLHSs may implement a variety of changes to strengthen the actor-oriented architecture and enable more actors to create and share resources.