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N/A N=50 Randomized Other

Self-management Intervention for Children With Chronic Medical Complexity: Pilot Feasibility Trial

Children With Medical Complexity

Enrolled (actual)
50
Serious AEs
0.0%
Results posted
Oct 2024
Primary outcome: Primary: Patient Quality of Life (QOL) — 62.7; 54.4; 59.8; 51.9 score on a scale, range from 20 to 100 — p=>0.05

Study Design & Population

Study type
Interventional
Phase
N/A
Interventions
MyChildCMC app (Other)
Age
Pediatric, Adult · 1+ yrs
Sex
All
Sponsor
University of Utah
Primary completion
Mar 2020

Outcome Measures

OutcomeResultp-value
PRIMARY
Patient Quality of Life (QOL)
62.7; 54.4; 59.8; 51.9; 55.2; 50.8 >0.05
SECONDARY
Patient Emergency Department (ED)/Hospitalization
1.13; 0.85; 1.08; 0.88 0.882
SECONDARY
Number of Hospital Days
9.25; 1.08; 4.54; 2.46 <0.001 sig
SECONDARY
Parent/Caregiver Satisfaction With Care
26.93; 24.14 0.035 sig

Summary

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 trial for the MyChildCMC app was designed to determine preliminary impact by comparing outcomes (child QOL, child emergency department and hospital admissions, and parent/caregiver satisfaction with care) between the intervention and control groups. 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.

Eligibility 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:

  • have been seen at Primary Children's Hospital within 365 days,
  • own a smartphone or a tablet computer with Internet access, and
  • are English speaking *Physician diagnosis was used to determine CMC diagnosis

Exclusion Criteria

  • Critically ill children in imminent death
  • Non-English speakers
View full record on ClinicalTrials.gov →

Data sourced from ClinicalTrials.gov (NCT04470193). Outcome figures and adverse-event rates are extracted automatically from the registry's posted results and are provided for clinician reference, not as a substitute for the primary publication.

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