512 - Caregiver Perspectives on Preventing Future Hospitalizations for Children with Medical Complexity

Publication Number: 1492.512

Priya Mathur, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Amanda Gatewood, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Joanna Thomson, Cincinnati Children's, Cincinnati, OH, United States; Carolyn Foster, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States; Danielle Gerber, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Jeffrey D. Colvin, Children's Mercy Hospitals and Clinics, Kansas City, MO, United States; Ryan Coller, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States

Background: Children with medical complexity (CMC) are hospitalized frequently. Caregivers play a critical role in identifying and mitigating hospitalization risk.

Objective: This study aimed to characterize and quantify caregiver perceptions of future hospitalization preventability.

Design/Methods: Two survey periods from Family CIRCLE, a nine-site, prospective, longitudinal cohort study following 718 caregiver/CMC dyads, were used in this analysis. Caregivers responded to two scaled questions assessing their self-efficacy managing their child's acute illness. Self-efficacy was categorized as low, mixed, or high. The study outcome was the presence/absence of the perception that the child's future hospitalizations could be prevented. Associations between caregiver acute illness self-efficacy and perceived future hospitalization preventability were examined using logistic regression clustered by site and adjusted for sociodemographic and clinical confounders. Caregivers also rated the preventability of hospitalization for specific conditions.

Results: Among 513 participants with exposure and outcome data, most (73.1%) caregivers perceived that future hospitalizations are preventable (Table 1). Caregivers with high acute illness self-efficacy were aOR 2.77 (95% CI 1.13-6.83) times more likely than caregivers with low acute illness self-efficacy to perceive that future hospitalizations are preventable (Figure 1). Most families perceived nearly all queried conditions were preventable >50% of the time. Over 70% of caregivers perceived that the majority of hospitalizations for growth, respiratory illness, constipation, and pain were preventable (Table 2).

Conclusion(s): Nearly three-quarters of caregivers in this national multisite study perceived that future hospitalizations could be prevented for CMC. Designing interventions focused on self-efficacy for managing acute illness and the identified conditions may be productive future research directions.

Table 1: Child, Caregiver, and Family Characteristics by Perception about Future Hospitalization Preventability
1 Caregiver acute illness self-efficacy categorized as "low" when answering low confidence for both questions ("I know when my child needs to be seen by a healthcare provider, if sick" and "I can tell when my child's symptoms worsen."), "high" if answering high confidence for both, "mixed: high/low" when answering high to question 1 and low to question 2, and "mixed: low/high" when answering low to question 1 and high to question 2.

Figure 1: Association Between Caregiver Acute Illness Self-Efficacy and Perception of Future Hospitalization Preventability
Ref: reference group; CMC: child with medical complexity; GED: general educational development; HS: high school
*p < 0.05, **p < 0.01
1 Caregiver acute illness self-efficacy categorized as "low" when answering low confidence for both questions ("I know when my child needs to be seen by a healthcare provider, if sick" and "I can tell when my child's symptoms worsen."), "high" if answering high confidence for both, "mixed: high/low" when answering high to question 1 and low to question 2, and "mixed: low/high" when answering low to question 1 and high to question 2.

Table 2: Reasons for which caregivers perceive future hospitalizations could be prevented 50% of the time or more
*Caregivers could choose "does not apply" if the child does not have the condition, e.g., asthma, tracheostomy, central line.