Family-Reported Posthospitalization Outcomes for Children With Complex Chronic Disease

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.

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.

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.

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.