Hospitalization Through Families' Eyes: Comparing Inpatient Care Quality for Children With Sickle Cell Disease and...

Sickle cell disease (SCD) is a chronic, inherited hemoglobinopathy that requires frequent hospitalization for disease-related complications. Canadian data on inpatient care is limited. This study compared caregiver-reported hospital experiences of children with SCD to those with cystic fibrosis (CF), a chronic, autosomal recessive condition with cumulative morbidities and frequent hospitalizations, within a provincial Canadian healthcare system.

Caregivers of pediatric patients with SCD or CF, hospitalized at tertiary children's hospitals in Alberta, completed the Alberta Pediatric Inpatient Experience Survey (APIES) between 2015 and 2019. Survey responses were linked to administrative inpatient records. Proportions of "top-box" responses (i.e., most positive) were calculated across 46 items spanning 12 care domains. Chi-square tests assessed group differences between SCD (n = 105) and CF (n = 60) respondents.

Caregivers of children with SCD reported significantly higher satisfaction compared to caregivers of CF on 16 of 46 survey items (p < 0.05), including domains related to provider communication, care coordination, and pain management. Notable differences included higher ratings in quietness around the child's hospital room (SCD: 64.8% vs. CF: 22.4%; p < 0.001) and provider knowledge of the child's medical history (SCD: 77.1% vs. CF: 40.0%; p < 0.001). No items were rated significantly lower by the SCD group.

Contrary to prior research conducted in the United States, caregivers of children with SCD in Alberta reported equal, or more positive, hospital experiences than children with CF. These findings emphasize the importance of capturing caregiver-reported outcomes to better understand and improve inpatient care for children in Canada.