Technology-Enabled Health Care Collaboration in Pediatric Chronic Illness: Pre-post Interventional Study for Feasibility, Acceptability, and Clinical Impact of an Electronic Health Record–Linked Platform for Patient-Clinician Partnership

Background: Mobile health (mHealth) technology has the potential to support the Chronic Care Model\u27s vision of closed feedback loops and patient-clinician partnerships. Objective: This study aims to evaluate the feasibility, acceptability, and short-term impact of an electronic health record-linked mHealth platform (Orchestra) supporting patient and clinician collaboration through real-time, bidirectional data sharing. Methods: We conducted a 6-month prospective, pre-post, proof-of-concept study of Orchestra among patients and parents in the Cincinnati Children\u27s Hospital inflammatory bowel disease (IBD) and cystic fibrosis (CF) clinics. Participants and clinicians used Orchestra during and between visits to complete and view patient-reported outcome (PRO) measures and previsit plans. Surveys completed at baseline and at 3- and 6-month follow-up visits plus data from the platform were used to assess outcomes including PRO completion rates, weekly platform use, disease self-efficacy, and impact on care. Analyses included descriptive statistics; pre-post comparisons; Pearson correlations; and, if applicable, effect sizes. Results: We enrolled 92 participants (CF: n = 52 and IBD: n = 40), and 73% (67/92) completed the study. Average PRO completion was 61%, and average weekly platform use was 80%. Participants reported improvement in self-efficacy from baseline to 6 months (7.90 to 8.44; P = .006). At 6 months, most participants reported that the platform was useful (36/40, 90%) and had a positive impact on their care, including improved visit quality (33/40, 83%), visit collaboration (35/40, 88%), and visit preparation (31/40, 78%). PRO completion was positively associated with multiple indicators of care impact at 3 and 6 months. Conclusions: Use of an mHealth tool to support closed feedback loops through real-time data sharing and patient-clinician collaboration is feasible and shows indications of acceptability and promise as a strategy for improving pediatric chronic illness management

Appropriateness of Emergency Department Use in Pediatric Inflammatory Bowel Disease: A Quality Improvement Opportunity

We sought to characterize emergency department (ED) encounters for pediatric inflammatory bowel disease (IBD) to identify areas for prevention

Implementable Strategies and Exploratory Considerations to Reduce Costs Associated with Anti-TNF Therapy in Inflammatory Bowel Disease:

A health care system is needed where care is based on the best available evidence and is delivered reliably, efficiently, and less expensively (best care at lower cost). In gastroenterology, anti-tumor necrosis factor (anti-TNF) agents represent the most effective medical therapeutic option for patients with moderate-to-severe inflammatory bowel disease (IBD), but are very expensive and account for nearly a quarter of the cost of IBD care, representing a major area of present and future impact in direct health care costs. The ImproveCareNow Network, consisting of over 55 pediatric IBD centers, seeks ways to improve the value of care in IBD – curtailing unnecessary costs and promoting better health outcomes through systematic and incremental quality improvement initiatives. This report summarizes the key evidence to facilitate the cost-effective use of anti-TNF agents for patients with IBD. Our review outlines the scientific rationale for initiating cost-reducing measures in anti-TNF use and focuses on three implementable strategies and four exploratory considerations through practical clinical guidelines, as supported by existing evidence. Implementable strategies can be readily integrated into today’s daily practice, while exploratory considerations can guide research to support future implementation

Mycophenolate Mofetil-Related Enterocolitis and Weight Loss: A Pediatric Case Series

Mycophenolate mofetil (MMF) is an immunosuppressive medication utilized in the management of both autoimmune and solid organ transplant patients. Diarrhea is a common gastrointestinal side effect of MMF, but more severe forms of GI symptoms are described in renal transplant patients with a distinct pattern of histopathologic change, similar to graft-versus-host disease or Crohn's disease. This rare entity, commonly referred to as “MMF-related enterocolitis,” has been described in adult patients, mostly in renal transplant patients, and in only two pediatric renal transplant patients. In previously reported cases, symptoms and abnormal histopathology improve with dose reduction of MMF. We describe a series of three pediatric patients with varied underlying disease process who presented with severe diarrhea and histopathologic findings characteristic of MMF-related enterocolitis, who share a novel finding of weight loss as a complication of MMF-related enterocolitis in pediatric patients

Improving Pediatric Inflammatory Bowel Disease (IBD) Follow-Up

Standardization of Inflammatory Bowel Disease (IBD) care through participation in the ImproveCareNow (ICN) Network has improved outcomes for pediatric patients with IBD, but under the current care model, our improvements have plateaued. Current ICN model care guidelines recommend health supervision visits every six months. We identified a gap in our practice\u27s ability to ensure either a routine six month follow-up or a rapid follow-up after a disease flare, and a significant number of patients with active disease status during a six month period lacked timely reassessment after interventions or medication changes. Telemedicine provides an alternative method of care delivery to address these gaps, but has had limited use in patients with IBD. A multi-step approach to offer alternative follow-up care options via telemedicine was developed with potential impact on remission rates and quality of life. Short term goals of the pilot were to improve telemedicine access for patients with IBD were to 1) increase the percent of patients with active disease with a follow-up completed within two months of a visit from 40% to 70%, 2) increase the percent of patients with a visit scheduled within two months of their last sick visit from 20% to 70% (interim measure), 3) increase the number of eVisits from zero visits per month to two visits per month during pilot phase, 4) increase electronic communication with patients from zero messages per month to 200 messages per month, 5) no change in complications or adverse events (defined as an unplanned visit or ED (emergency department) encounter within 30 days of an eVisit. The expected outcomes of the e-visit model were to: maintain baseline care standards and health screening capabilities, improve access to care, and provide equivalent care delivery (no increase in the number of unplanned clinical encounters). Using the IHI model for improvement (Plan-Do-Study-Act) we have seen a progressive increase in the rate of patient signups for the electronic medical record patient portal, with a baseline median of 20% per clinic compared with a current median of approximately 70% after six months. We successfully implemented e-messaging in its pilot form among five providers and have seen steady uptake in patient use from 5 patient initiated messages during the first month to 76 messages/month over the past three months. E-visits have replaced a total of 32 visits to date. Medications, nutrition, and disease activity were appropriately screened and managed electronically without the need for a physical office visit by the treating gastroenterologist. Access to care was improved in that all patients completed their e-visits from their homes without missing school or work and did not require a physical office visit. One visit successfully identified worsening of the patient\u27s clinical course and resulted in a scheduled office visit request, but no unplanned office visits or ED visits have occurred. This report represents the first description of telemedicine use in routine clinical care in children with IBD. We anticipate continuing use of this novel mode of health care delivery in pediatrics in an effort to increase the proportion of patients seen for interval follow-up, after IBD diagnosis, or mild flare in an effort to target early treatment changes that should result in improved remission and patient reported outcomes. E-visits are less expensive and time consuming than traditional visits and may serve as an additional method of cost savings by matching care to a patient\u27s individual needs

Improving Pediatric Inflammatory Bowel Disease (IBD) Follow-Up

Standardization of Inflammatory Bowel Disease (IBD) care through participation in the ImproveCareNow (ICN) Network has improved outcomes for pediatric patients with IBD, but under the current care model, our improvements have plateaued. Current ICN model care guidelines recommend health supervision visits every six months. We identified a gap in our practice\u27s ability to ensure either a routine six month follow-up or a rapid follow-up after a disease flare, and a significant number of patients with active disease status during a six month period lacked timely reassessment after interventions or medication changes. Telemedicine provides an alternative method of care delivery to address these gaps, but has had limited use in patients with IBD. A multi-step approach to offer alternative follow-up care options via telemedicine was developed with potential impact on remission rates and quality of life. Short term goals of the pilot were to improve telemedicine access for patients with IBD were to 1) increase the percent of patients with active disease with a follow-up completed within two months of a visit from 40% to 70%, 2) increase the percent of patients with a visit scheduled within two months of their last sick visit from 20% to 70% (interim measure), 3) increase the number of eVisits from zero visits per month to two visits per month during pilot phase, 4) increase electronic communication with patients from zero messages per month to 200 messages per month, 5) no change in complications or adverse events (defined as an unplanned visit or ED (emergency department) encounter within 30 days of an eVisit. The expected outcomes of the e-visit model were to: maintain baseline care standards and health screening capabilities, improve access to care, and provide equivalent care delivery (no increase in the number of unplanned clinical encounters). Using the IHI model for improvement (Plan-Do-Study-Act) we have seen a progressive increase in the rate of patient signups for the electronic medical record patient portal, with a baseline median of 20% per clinic compared with a current median of approximately 70% after six months. We successfully implemented e-messaging in its pilot form among five providers and have seen steady uptake in patient use from 5 patient initiated messages during the first month to 76 messages/month over the past three months. E-visits have replaced a total of 32 visits to date. Medications, nutrition, and disease activity were appropriately screened and managed electronically without the need for a physical office visit by the treating gastroenterologist. Access to care was improved in that all patients completed their e-visits from their homes without missing school or work and did not require a physical office visit. One visit successfully identified worsening of the patient\u27s clinical course and resulted in a scheduled office visit request, but no unplanned office visits or ED visits have occurred. This report represents the first description of telemedicine use in routine clinical care in children with IBD. We anticipate continuing use of this novel mode of health care delivery in pediatrics in an effort to increase the proportion of patients seen for interval follow-up, after IBD diagnosis, or mild flare in an effort to target early treatment changes that should result in improved remission and patient reported outcomes. E-visits are less expensive and time consuming than traditional visits and may serve as an additional method of cost savings by matching care to a patient\u27s individual needs

Improving Health Maintenance Supervision in a Paediatric IBD Clinic

BACKGROUND: Previsit planning (PVP) has been an integral part of clinical care for paediatric patients with inflammatory bowel disease (IBD) at Cincinnati Children\u27s Hospital Medical Center since 2007. Over the past years, we have adopted several programmes to improve health maintenance supervision for our paediatric patients with IBD but did not have a sustainable way to provide health maintenance updates for every patient at every encounter that was concise and complete in the setting of an increasing patient population and fewer support staff to complete the work. METHODS: Using quality improvement methods, we completed several Plan-Do-Study-Act (PDSA) cycles aimed at improving our centre\u27s ability to provide complete health maintenance \u27bundle\u27 recommendations from 0% to 90% of patients over a period of 11 months. RESULTS: First steps included consensus gathering and summarising evidence into guidelines suitable for the group. PDSAs centred on consensus building from standardised guidelines, using empty checklists for simulated and real patients, and use of autofilled checklists. After several PDSA cycles, we have improved our ability to provide complete health maintenance PVP from 0% to nearly 100% with very little variation. CONCLUSION: Using the health maintenance PVP process, we can now sustainably provide health maintenance guidance for all outpatient clinic visits. We have begun to scale up this work and anticipate over the coming months that we will be able to expand the health maintenance PVP to provide complete PVP for over 90% of patients for any scheduled encounter including biologic infusion visits. We anticipate that using this reliable process we can improve remission rates and reduce preventable infections for these at-risk patients

Improving Health Maintenance Supervision in a Paediatric IBD Clinic

BACKGROUND: Previsit planning (PVP) has been an integral part of clinical care for paediatric patients with inflammatory bowel disease (IBD) at Cincinnati Children\u27s Hospital Medical Center since 2007. Over the past years, we have adopted several programmes to improve health maintenance supervision for our paediatric patients with IBD but did not have a sustainable way to provide health maintenance updates for every patient at every encounter that was concise and complete in the setting of an increasing patient population and fewer support staff to complete the work. METHODS: Using quality improvement methods, we completed several Plan-Do-Study-Act (PDSA) cycles aimed at improving our centre\u27s ability to provide complete health maintenance \u27bundle\u27 recommendations from 0% to 90% of patients over a period of 11 months. RESULTS: First steps included consensus gathering and summarising evidence into guidelines suitable for the group. PDSAs centred on consensus building from standardised guidelines, using empty checklists for simulated and real patients, and use of autofilled checklists. After several PDSA cycles, we have improved our ability to provide complete health maintenance PVP from 0% to nearly 100% with very little variation. CONCLUSION: Using the health maintenance PVP process, we can now sustainably provide health maintenance guidance for all outpatient clinic visits. We have begun to scale up this work and anticipate over the coming months that we will be able to expand the health maintenance PVP to provide complete PVP for over 90% of patients for any scheduled encounter including biologic infusion visits. We anticipate that using this reliable process we can improve remission rates and reduce preventable infections for these at-risk patients