Children With Medical Complexity Clinical Trial
Official title:
Self-management Intervention for Children With Chronic Medical Complexity: Pilot Feasibility Trial
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.
Aim: Investigators will assess the impact of the MyChildCMC app by comparing outcomes for the
child and caregiver with the following outcomes:
1. Child Quality of Life (QOL)
2. Child Hospital and Emergency Department (ED) admissions
3. Parent/Caregiver satisfaction with care
4. Study participation rate
5. Retention of intervention (intervention arm only)
6. Adherence of intervention (intervention arm only)
;
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