Infants with medical complexity (IMC) are a challenging population with more emergency department visits, inpatient stays, and higher healthcare costs than other children. IMC also experience lower quality emergency health care. The PI and team propose to adapt and put into place an emergency care action plan (ECAP) for IMC across four US hospitals, working directly with medical providers and families in each setting. After the tool is made available to providers and families, the PI and team will measure if the ECAP tool helps decrease the number of hospitalizations (primary research outcome) for IMC, as well as if the ECAP is feasible, acceptable, and useable for those using the ECAP over a one-year period.
Age 0 to 6 months
Admitted to the University of Vermont Medical Center, Cincinnati Children's Hospital, Children's Hospital of Philadelphia, or Colorado Children's Hospital Neonatal Intensive Care Unit (NICU),
Meets or is expected to meet Children with Medical Complexity status as determined by the treating NICU clinician and defined as "children with multiple significant chronic health problems including multiple organ systems, which result in functional limitations, high health care needs or utilization, and often require need for, or use of, medical technology."
Has three or more documented complex chronic conditions (CCCs)
Does not have a caregiver participant who agrees to their participation in the study to complete follow-up surveys
Does not intend to use the hospital or affiliated sites of which they were recruited from for care during the one-year trial period
Parallel
Emergency Care Action Plan
Other interventionAn Emergency Care Action Plan (ECAP) is a brief, pre-populated summary of suggested emergency management for children with medical complexity, embedded in a patient's electronic health record for access by providers in an emergency. Patients/families will have digital access to the ECAP and be given a paper copy. The patient's care team and caregiver(s) (parent/legal guardian) will collaborate to create an individualized ECAP containing the following content: caregiver contact information, patient summary, anticipated emergency presentations with suggested management, problem list (emergency relevant only), medication list, technology dependence, baseline important physical exam findings, baseline vital signs, allergies, advance directive information, contact information for established care providers, and other important information.
Hospitalization
Dichotomous variable for hospitalization vs. no hospitalization (yes/no)
Number of ED Visits
Number of ED visits
Usability
Will assess usability using an adaption of the System Usability Scale (SUS) and qualitative assessment of implementation barriers and facilitators (for intervention group only).
Acceptability
Will assess acceptability using an adaptation of the Theoretical Framework of Acceptability (TFA), including the following constructs: affective attitude, burden, intervention coherence, self-efficacy, and opportunity costs. Qualitative assessment of implementation barriers and facilitators (for intervention group only) will also elicit perspectives of acceptability.
Feasibility of Intervention
Will assess feasibility using an adaptation of the Feasibility of Intervention Measure (FIM), as well as a qualitative assessment of implementation barriers and facilitators (for intervention group only).
Caregiver Stress
Will measure caregiver self-perceived stress and compare between the intervention and standard care by using the University of Washington Caregiver Stress Scale 3-Item Short Form.
Caregiver Self-Efficacy
Will measure caregiver self-efficacy and compare between the intervention and standard care by using an adaptation of the Parent Measure of Self-Efficacy Managing a Child's Medications and Treatments, including assessment of self-efficacy in two domains: (1) healthcare information and decision-making, and (2) symptoms identification and management.
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