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Family-Reported Posthospitalization Outcomes for Children With Complex Chronic Disease
Patrick W Brady1,2,3, Marie Pfarr1,3,4, Barbara K Giambra2,3,5,6
1Division of Hospital Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio.
Insights
Families of children with complex chronic disease (CCD) found new measures for hospital-to-home transition effective. Many children did not return to baseline health within 30 days, highlighting the need for improved transition support.
Area of Science:
- Pediatric Healthcare
- Health Services Research
- Patient-Reported Outcomes
Background:
- Children with complex chronic disease (CCD) face significant challenges during hospital-to-home transitions, leading to high rates of unplanned healthcare use.
- Existing transition effectiveness measures often lack input from families of children with CCD, limiting their relevance and applicability.
- Developing family-centered outcomes is crucial for improving care transitions in this vulnerable population.
Purpose of the Study:
- To identify patient- and family-reported outcomes (PROs) that are most meaningful to families of children with CCD regarding hospital-to-home transition effectiveness.
- To assess the feasibility, acceptability, and variability of these family-identified PROs among recently discharged children with CCD.
- To develop and validate new PRO measures for transition effectiveness in pediatric complex chronic disease.
Main Methods:
- Family members of children with CCD participated in design sessions to develop and refine PRO measures for transition effectiveness.
- A prospective cohort study was conducted with 102 hospitalized children with CCD, collecting transition measures 7 days post-discharge.
- Transition measures were compared with 30-day unplanned readmission rates using correlation analysis to assess predictive validity.
Main Results:
- Families endorsed existing transition measures and co-created a 'Return to Baseline' measure, assessing progress toward pre-hospitalization status.
- In the cohort study, families reported high satisfaction with the transition measures, though many children (64.7% at 7 days, 62.4% at 30 days) had not returned to baseline health.
- Early return to baseline (at 7 days) concerning child health, routine, work, and sleep showed a moderate correlation with reduced 30-day unplanned readmissions.
Conclusions:
- Several family-centered transition measures were endorsed by families of children with CCD, indicating their relevance and acceptability.
- A significant proportion of children with CCD did not achieve baseline health status by 7 or 30 days post-hospitalization, underscoring transition difficulties.
- Future research on hospital-to-home transition interventions for children with CCD should incorporate PROs and health utilization outcomes to evaluate effectiveness.
Background And Objective:
Children with complex chronic disease (CCD) are at high risk for poor hospital-to-home transition and unplanned urgent health care use. Existing measures of transition effectiveness have rarely included families of children with CCD in their development and validation. We sought to identify patient- and family-reported outcomes (PROs) of transition effectiveness that matter most to families of children with CCD and to assess the feasibility, acceptability, and variation in each family-identified PRO among recently discharged families.
Methods:
We recruited family members of children with CCD to participate in design sessions to review existing and develop new PRO measures. We then conducted a prospective cohort study of hospitalized children with CCD, collecting transition measures 7 days after discharge. These measures were compared with 30-day unplanned readmission rates using Somers' D test of ordinal correlation.
Results:
Families endorsed existing transition effectiveness measures and co-created a Return to Baseline measure assessing progress toward prehospital baseline. In a prospective cohort of 102 children with CCD, families rated transition measures highly, although children often were not at baseline health by 7 (64.7%) or 30 days (62.4%). Return to baseline at 7 days with regards to child health, child routine, work schedule, and sleep was moderately correlated with unplanned 30-day readmission.
Conclusions:
Families of children with CCD endorsed several transition measures as family-centered. Many reported their child's health had not returned to baseline 7 and even 30 days after hospitalization. Future trials of hospital-to-home transition interventions in this population should include PROs and health utilization outcomes.
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