Association of Care Coordination Experience and Health Services Use with Main Provider Type for Children with Inflammatory Bowel Disease.

OBJECTIVES: To describe care coordination experience for families of children with inflammatory bowel disease (IBD) and compare use of health services between families who identified a primary care physician (PCP) vs a gastroenterologist as a child's main provider. STUDY DESIGN: This is a cross-sectional survey of care coordination experiences and health services use for children 6-19 years old receiving care in the IBD program at a children's hospital during 2018. English-speaking parents completed the Family Experiences with Coordination of Care Survey about their child's main provider and reported past-year health services. Bivariate testing and multivariate logistic regression explored differences in care coordination experience and health services by main provider, adjusted for demographic and clinical variables. RESULTS: A total of 113 of 270 (42%) invited patients participated. Among 101 patients with complete data, 41% identified a PCP main provider. Performance on 5 of 16 Family Experiences with Coordination of Care indicators was higher for patients reporting a gastroenterologist vs a PCP main provider. However, having a PCP vs gastroenterologist main provider was associated with greater use of any past-year primary care services (adjusted proportion 94% vs 75%; P = .01) and of mental health services when needed (95% vs 60%; P < .01). Need for IBD-related hospitalization and emergency department visits did not differ between groups. CONCLUSIONS: Children with IBD may experience trade-offs in care coordination quality and important, non-disease-focused health services based on whom parents perceive as the main provider. Efforts to enhance cross-team coordination among families and primary and specialty care teams are needed to improve overall care quality.

A Prototype Exercise-Empowerment Mobile Video Game for Children With Cancer, and Its Usability Assessment: Developing Digital Empowerment Interventions for Pediatric Diseases.

BACKGROUND: Medical advances continue to improve morbidity and mortality of serious pediatric diseases, including cancer, driving research addressing diminished physical and psychological quality of life in children with these chronic conditions. Empowerment enhances resilience and positively influences health, disease, and therapy understanding. We describe the development and usability assessment of a prototype Empower Stars! mobile video game grounded in behavioral and exercise theories with the purpose of coupling physical exercise with empowerment over disease in children with cancer. METHODS: Academic faculty, health-care providers, and community video game developers collaborated in this project. The iPadAir was selected as a delivery platform for its accelerometer and gyroscope features facilitating exercise design. Unity multiplatform technology provided animation and audiovisual features for immediate player feedback. Javascript, C#, Photoshop, Flash, and SketchUp were used for coding, creating graphical assets, Sprite sheets, and printing files, respectively. 3D-printed handles and case backing were used to adapt the iPad for physical exercise. Game usability, engagement, and enjoyment were assessed via a multilevel study of children undergoing cancer chemotherapy, their parents, and pediatric cancer health-care providers. Feedback crucial for ongoing game development was analyzed. RESULTS: A prototype Empower Stars! mobile video game was developed for children 7-14 years old with cancer. Active, sedentary, educational, and empowerment-centered elements intermix for 20 min of exercise within a 30 min "one-day treatment" gameplay session involving superheroes, space exploration, metaphorical cancer challenges, life restoration on a barren planet, and innumerable star rewards. No player "dies." Usability assessment data analyses showed widespread enthusiasm for integrating exercise with empowerment over cancer and the game itself. Favorite elements included collecting star rewards and planet terraforming. Traveling in space and the Healthy Food Choice game were least liked. The need for improved gameplay instructions was expressed by all groups. The usability study provided essential feedback for converting the prototype into alpha version of Empower Stars! CONCLUSION: Adapting exercise empowerment-promoting video game technology to mobile platforms facilitates usability and widespread dissemination for children with cancer. We discuss broader therapeutic applicability in diverse chronic pediatric diseases, including obesity, asthma, cystic fibrosis, diabetes, and juvenile idiopathic arthritis.