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.

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.

Agreement of Provider and Parent Perceptions of Complex Care Medical Homes After a Care Management Intervention.

INTRODUCTION: Children with medical complexity frequently lack coordinated and family-centered care and are best cared for in a medical home. METHOD: We assessed concordance between provider and family perceptions of care management improvements during a prospective, 3-year study of nine complex care clinics and 42 primary care clinics. Using a pre-post design, we compared provider and parent perceptions of changes in care coordination and family-centered care responses using paired t tests, Spearman rank correlations, and linear regression. RESULTS: Provider scores significantly increased in every domain (range: 14.1 points [data management], 23.0 points [chronic care management]; p < .001). Parent perceptions improved only for shared decision making improved significantly (2.2 points, p < .01). DISCUSSION: These results indicate that it is possible to improve the medical home for children with medical complexity through a quality improvement initiative, but that provider perception of the improvement may be greater than parents' perceptions.

Caring for Children With Medical Complexity With the Emergency Information Form.

BACKGROUND AND OBJECTIVE: The American Academy of Pediatrics recommends an emergency information form (EIF) for children with medical complexity (CMC) to facilitate emergency care. We sought to increase the EIF completion rate at our children's hospital's CMC clinic and to evaluate the effect on caregiver and emergency department (ED) provider opinion of preparation, comfort, and communication. METHODS: We used a pre/post-quality improvement design. The main outcomes were (1) the proportion of completed EIFs and (2) caregiver and ED provider opinion of preparation, comfort, and communication, using a Likert scale survey (1, low; 5, high). RESULTS: Emergency information form completion increased from 3.1% (4/133) before the intervention to 47.0% (78/166) after (P < 0.001). Twenty-three providers completed presurveys, and 8 completed postsurveys. Seventy-two caregivers completed presurveys, and 38 completed postsurveys (25 with ED visit and 13 without). There were no changes in preparation, comfort, or communication for caregivers who had an ED visit after the intervention. For those without a postintervention ED visit, caregiver median scores rose for preparation (4 [interquartile range {IQR}, 3-5] vs 5 [IQR, 4-5], P = 0.02) and comfort (4 [IQR, 2.25-5] vs 5 [IQR, 4-5], P = 0.05). After the intervention, ED providers had increased median communication scores (3 [IQR, 2.75-4.25] vs 5 [IQR, 4-5], P = 0.02), whereas scores of preparation and comfort were unchanged. CONCLUSION: A quality improvement project at a CMC clinic increased EIF completion, caregiver preparation and comfort, and ED provider communication in emergencies.

Primary Care Preparation for Children with Medical Complexity for Emergency Encounters in the Community.

It can be difficult to assist children with medical complexities (CMC) in maintaining wellness outside of hospital and emergency department settings. This growing population, with high use of medical technology and specialty care, has created a challenge for community providers who may infrequently care for children with these rare disorders and needs. CMCs have increased hospitalization rates and emergency care use. It is not realistic to believe that emergency health providers will know how to manage every type of CMC when they present for emergency care. Primary care providers (PCPs) may be able to use the medical home to avoid some urgent visits, but when CMC need emergency services, an emergency information form may add great benefit and personalized care. This article assists PCPs in identifying and preparing CMCs and families to successfully interface with emergency services as well as prepare for disaster events. [Pediatr Ann. 2018;47(3):e102-e105.].

Primary-care providers' perceived barriers to integration of genetics services: a systematic review of the literature.

PURPOSE: We aimed to systematically review the literature to identify primary-care providers' perceived barriers against provision of genetics services. METHODS: We systematically searched PubMed and ERIC using key and Boolean term combinations for articles published from 2001 to 2012 that met inclusion/exclusion criteria. Specific barriers were identified and aggregated into categories based on topic similarity. These categories were then grouped into themes. RESULTS: Of the 4,174 citations identified by the search, 38 publications met inclusion criteria. There were 311 unique barriers that were classified into 38 categories across 4 themes: knowledge and skills; ethical, legal, and social implications; health-care systems; and scientific evidence. Barriers most frequently mentioned by primary-care providers included a lack of knowledge about genetics and genetic risk assessment, concern for patient anxiety, a lack of access to genetics, and a lack of time. CONCLUSION: Although studies reported that primary-care providers perceive genetics as being important, barriers to the integration of genetics medicine into routine patient care were identified. The promotion of practical guidelines, point-of-care risk assessment tools, tailored educational tools, and other systems-level strategies will assist primary-care providers in providing genetics services for their patients.

Effectiveness of exome and genome sequencing guided by acuity of illness for diagnosis of neurodevelopmental disorders.

Neurodevelopmental disorders (NDDs) affect more than 3% of children and are attributable to single-gene mutations at more than 1000 loci. Traditional methods yield molecular diagnoses in less than one-half of children with NDD. Whole-genome sequencing (WGS) and whole-exome sequencing (WES) can enable diagnosis of NDD, but their clinical and cost-effectiveness are unknown. One hundred families with 119 children affected by NDD received diagnostic WGS and/or WES of parent-child trios, wherein the sequencing approach was guided by acuity of illness. Forty-five percent received molecular diagnoses. An accelerated sequencing modality, rapid WGS, yielded diagnoses in 73% of families with acutely ill children (11 of 15). Forty percent of families with children with nonacute NDD, followed in ambulatory care clinics (34 of 85), received diagnoses: 33 by WES and 1 by staged WES then WGS. The cost of prior negative tests in the nonacute patients was $19,100 per family, suggesting sequencing to be cost-effective at up to $7640 per family. A change in clinical care or impression of the pathophysiology was reported in 49% of newly diagnosed families. If WES or WGS had been performed at symptom onset, genomic diagnoses may have been made 77 months earlier than occurred in this study. It is suggested that initial diagnostic evaluation of children with NDD should include trio WGS or WES, with extension of accelerated sequencing modalities to high-acuity patients.