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The investigators have developed a tool to facilitate self-management for children with medical complexity (complex, multisystem chronic diseases) called MyChildCMC (My Child's Complex Medical Condition). MyChildCMC is an online, phone application (app) that engages parents daily in ongoing monitoring of common, crosscutting acute symptoms, including respiratory distress, inadequate feeding/fluid intake, fever, altered mental status, pain, and seizure status. The MyChildCMC app also guides parents to recognize early warning signs for health deteriorations to avoid acute events (i.e., ED visits and/or hospitalizations).
Parent comments during the development of the MyChildCMC application revealed that the tool had potential in helping them manage their child's chronic conditions. This study will be the first to explore if online home monitoring using online technology is feasible, scalable, and can lead to improved CMC outcomes. This pilot feasibility trial for the MyChildCMC app will determine app feasibility and if successful, our approach will be a model for improving CMC care and reducing costs for families and children with medical complexity. Future MyChildCMC trials will integrate care coordination and a more robust alert system to help facilitate care and follow-up for patients.
Full description
Aim: Investigators will assess the impact of the MyChildCMC app by comparing outcomes for the child and caregiver with the following outcomes:
Child Quality of Life (QOL) Child Hospital and Emergency Department (ED) admissions Parent/Caregiver satisfaction with care Study participation rate Retention of intervention (intervention arm only) Adherence of intervention (intervention arm only)
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Inclusion and exclusion criteria
Participant Inclusion Criteria:
Children with complex medical conditions* ages 1 through 20 years with their primary caregiver (primary person caring for the child) who:
Exclusion Criteria:
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50 participants in 2 patient groups
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Data sourced from clinicaltrials.gov
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