Caregiving and Confidence to Avoid Hospitalization for Children with Medical Complexity.

OBJECTIVE: To test associations between parent-reported confidence to avoid hospitalization and caregiving strain, activation, and health-related quality of life (HRQOL). STUDY DESIGN: In this prospective cohort study, enrolled parents of children with medical complexity (n = 75) from 3 complex care programs received text messages (at random times every 2 weeks for 3 months) asking them to rate their confidence to avoid hospitalization in the next month. Low confidence, as measured on a 10-point Likert scale (1 = not confident; 10 = fully confident), was defined as a mean rating <5. Caregiving measures included the Caregiver Strain Questionnaire, Family Caregiver Activation in Transition (FCAT), and caregiver HRQOL (Medical Outcomes Study Short Form 12 [SF12]). Relationships between caregiving and confidence were assessed with a hierarchical logistic regression and classification and regression trees (CART) model. RESULTS: The parents were mostly mothers (77%) and were linguistically diverse (20% spoke Spanish as their primary language), and 18% had low confidence on average. Demographic and clinical variables had weaker associations with confidence. In regression models, low confidence was associated with higher caregiver strain (aOR, 3.52; 95% CI, 1.45-8.54). Better mental HRQOL was associated with lower likelihood of low confidence (aOR, 0.89; 95% CI, 0.80-0.97). In the CART model, higher strain similarly identified parents with lower confidence. In all models, low confidence was not associated with caregiver activation (FCAT) or physical HRQOL (SF12) scores. CONCLUSIONS: Parents of children with medical complexity with high strain and low mental HRQOL had low confidence in the range in which intervention to avoid hospitalization would be warranted. Future work could determine how adaptive interventions to improve confidence and prevent hospitalizations should account for strain and low mental HRQOL.

Linking Parent Confidence and Hospitalization through Mobile Health: A Multisite Pilot Study.

OBJECTIVE: To evaluate the associations between parent confidence in avoiding hospitalization and subsequent hospitalization in children with medical complexity (CMC); and feasibility/acceptability of a texting platform, Assessing Confidence at Times of Increased Vulnerability (ACTIV), to collect repeated measures of parent confidence. STUDY DESIGN: This prospective cohort study purposively sampled parent-child dyads (n = 75) in 1 of 3 complex care programs for demographic diversity to pilot test ACTIV for 3 months. At random days/times every 2 weeks, parents received text messages asking them to rate confidence in their child avoiding hospitalization in the next month, from 1 (not confident) to 10 (fully confident). Unadjusted and adjusted generalized estimating equations with repeated measures evaluated associations between confidence and hospitalization in the next 14 days. Post-study questionnaires and focus groups assessed ACTIV's feasibility/acceptability. RESULTS: Parents were 77.3% mothers and 20% Spanish-speaking. Texting response rate was 95.6%. Eighteen hospitalizations occurred within 14 days after texting, median (IQR) 8 (2-10) days. When confidence was <5 vs ≥5, adjusted odds (95% CI) of hospitalization within 2 weeks were 4.02 (1.20-13.51) times greater. Almost all (96.8%) reported no burden texting, one-third desired more frequent texts, and 93.7% were very likely to continue texting. Focus groups explored the meaning of responses and suggested ACTIV improvements. CONCLUSIONS: In this demographically diverse multicenter pilot, low parent confidence predicted impending CMC hospitalization. Text messaging was feasible and acceptable. Future work will test efficacy of real-time interventions triggered by parent-reported low confidence.

Hospitalizations for Ambulatory Care-Sensitive Conditions among Children with Chronic and Complex Diseases.

OBJECTIVE: To evaluate ambulatory-care sensitive (ACS) hospitalizations for children with noncomplex chronic diseases (NC-CD) and children with medical complexity (CMC), and identify associations with ambulatory care characteristics. Although ACS hospitalizations are potentially preventable in general populations, the specific ambulatory care predictors and influence of medical complexity on them is poorly understood. STUDY DESIGN: Retrospective cohort study of NC-CD and CMC hospitalizations at a children's hospital during 2007-2014, excluding labor/delivery and children over 21 years. Pediatric medical complexity algorithm identified NC-CD or CMC. ACS hospitalizations were identified using Agency for Healthcare Research and Quality indicator definitions. Demographic and ambulatory care characteristics were compared between ACS and non-ACS hospitalizations with logistic regression clustered by patient. Measures of ambulatory care during 2 years before admission were explored with 20% random sample of general pediatrics discharges. RESULTS: Among 4035 children with NC-CD, 14.6% of 4926 hospitalizations were ACS hospitalizations. Among 5084 CMC, 5.3% of 14 390 discharges were ACS hospitalizations. Among NC-CD discharges, ACS hospitalizations were more likely with no prior-year outpatient visits (OR 1.4, 95% CI 1.1-1.7) and less likely with timely well checks (OR 0.8, 95% CI 0.6-0.9) and phone encounters in the month before admission (OR 0.5, 95% CI 0.2-1.0). Among CMC discharges, the only association observed was with provider continuity (OR 0.3, 95% CI 0.1- 1.0). CONCLUSIONS: Provider continuity may be associated with fewer CMC ACS hospitalizations, however, measures of ambulatory care were more consistently associated with ACS hospitalizations for NC-CD. CMC may need more precise ACS hospitalization definitions.