Income and Household Material Hardship in Children With Medical Complexity.

BACKGROUND AND OBJECTIVES: Household economic hardship negatively impacts child health but may not be adequately captured by income. We sought to determine the prevalence of household material hardship (HMH), a measure of household economic hardship, and to examine the relationship between household poverty and material hardship in a population of children with medical complexity. METHODS: We conducted a cross-sectional survey study of parents of children with medical complexity receiving primary care at a tertiary children's hospital. Our main predictor was household income as a percentage of the federal poverty limit (FPL): <50% FPL, 51% to 100% FPL, and >100% FPL. Our outcome was HMH measured as food, housing, and energy insecurity. We performed logistic regression models to calculate adjusted odds ratios of having ≥1 HMH, adjusted for patient and clinical characteristics from surveys and the Pediatric Health Information System. RESULTS: At least 1 material hardship was present in 40.9% of participants and 28.2% of the highest FPL group. Families with incomes <50% FPL and 51% to 100% FPL had ∼75% higher odds of having ≥1 material hardship compared with those with >100% FPL (<50% FPL: odds ratio 1.74 [95% confidence interval: 1.11-2.73], P = .02; 51% to 100% FPL: 1.73 [95% confidence interval: 1.09-2.73], P = .02). CONCLUSIONS: Poverty underestimated household economic hardship. Although households with incomes <100% FPL had higher odds of having ≥1 material hardship, one-quarter of families in the highest FPL group also had ≥1 material hardship.

Effect of Pharmacy Involvement in Transitions of Care for Children With Medical Complexity.

OBJECTIVE: The purpose of this study is to evaluate the effects of pharmacy integration into care transitions for children with medical complexity. These children are at a higher risk for medication errors and adverse effects because of their complex medication regimens. In addition, care transitions increase the risk for medication errors, especially during hospital-to-home transitions. METHODS: This was a retrospective chart review of patients enrolled in a complex care clinic who were discharged between September 1, 2021, and December 31, 2021, and who had received a discharge medication evaluation. Intervention categories were predetermined (medication reconciliation and clinical interventions) and documented. The primary outcome was to quantify and characterize the types of interventions made by the pharmacist. Descriptive statistics were used for data analysis. Continuous data were analyzed using Wilcoxon rank sum test, and correlation was measured using Spearman correlation values. RESULTS: A total of 92 clinic encounters for 60 patients were included, with a median patient age of 7 years (IQR, 5-12.3), median length of stay of 3.2 days (IQR, 1.2-5.7), and a median number of 18 discharge medications (IQR, 14.8-25). A total of 283 interventions were made, consisting of 192 (68%) clinical interventions and 91 (32%) medication reconciliation interventions. In addition, 82 (89%) of the clinic encounters had at least one pharmacist intervention. CONCLUSIONS: Pharmacist evaluation of a patient's discharge medication regimen clarifies and better optimizes the patient's medication regimen.

Accuracy of the Exeter Hospitalizations-Office Visits-Medical Conditions-Extra Care-Social Concerns Index for Identifying Children With Complex Chronic Medical Conditions in the Clinical Setting.

OBJECTIVE: Our objective was to determine the accuracy of a point-of-care instrument, the Hospitalizations-Office Visits-Medical Conditions-Extra Care-Social Concerns (HOMES) instrument, in identifying patients with complex chronic conditions (CCCs) compared to an algorithm used to identify patients with CCCs within large administrative data sets. METHODS: We compared the HOMES to Feudtner's CCCs classification system. Using administrative algorithms, we categorized primary care patients at a children's hospital into 3 categories: no chronic conditions, non-complex chronic conditions, and CCCs. We randomly selected 100 patients from each category. HOMES scoring was completed for each patient. We performed an optimal cut-point analysis on 80% of the sample to determine which total HOMES score best identified children with ≥1 CCC and ≥2 CCCs. Using the optimal cut points and the remaining 20% of the study population, we determined the odds and area under the curve (AUC) of having ≥1 CCC and ≥2 CCCs. RESULTS: The median (interquartile range [IQR]) age was 4 (IQR: 0, 8). Using optimal cut points of ≥7 for ≥1 CCC and ≥11 for ≥2 CCCs, the odds of having ≥1 CCC was 19 times higher than lower scores (odds ratio [OR] 19.1 [95% confidence interval [CI]: 9.75, 37.5]) and of having ≥2 CCCs was 32 times higher (OR 32.3 [95% CI: 12.9, 50.6]). The AUCs were 0.76 for ≥1 CCC (sensitivity 0.82, specificity 0.80) and 0.74 for ≥2 CCCs (sensitivity 0.92, specificity 0.74). CONCLUSIONS: The HOMES accurately identified patients with CCCs.

Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action.

Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a significant impact. The diagnostic odyssey undertaken as part of having a child with RD is immense and carries with it practical, emotional, relational, and contextual issues that are not well understood. Children with RD often have chronic and complex medical conditions requiring a complicated milieu of care by numerous clinical caregivers. They may feel isolated and may feel stigmas in settings of education, employment, and the workplace, or a lack a social support or understanding. Some parents report facing similar loneliness amidst a veritable medicalization of their homes and family lives. We searched the literature on psychosocial considerations for children with rare diseases in PubMed and Google Scholar in English until 15 April 2022, excluding publications unavailable in full text. The results examine RD and their psychosocial ramifications for children, families, and the healthcare system. The domains of the home, school, community, and medical care are addressed, as are the implications of RD management as children transition to adulthood. Matters of relevant healthcare, public policies, and more sophisticated translational research that addresses the intersectionality of identities among RD are proposed. Recommendations for interventions and supportive care in the aforementioned domains are provided while emphasizing calls to action for families, clinicians, investigators, and advocacy agents as we work toward establishing evidence-based care for children with RD.