A Multidisciplinary Home Visiting Program for Children With Medical Complexity.

OBJECTIVES: Given the high needs and costs associated with the care of children with medical complexity (CMC), innovative models of care are needed. Home-visiting care models are effective in subpopulations of pediatrics and medically complex adults, but there is no literature on this model for CMC. We describe the development and outcomes of a multidisciplinary program that provides comprehensive home-based primary care for CMC. METHODS: Medical records from our institution were reviewed for patients enrolled in our program from July 2013 through March 2019. Demographics, clinical characteristics, and health care use were collected. We compared the differences in pre- and postprogram enrollment health care use using Wilcoxon signed rank test. We applied Cox proportional hazard models to examine the association between the time-dependent postenrollment health care use and numbers of home visits. We collected total claims data for a subset of our patients to examine total costs of care. RESULTS: We reviewed data collected from 121 patients. With our findings, we demonstrate that enrollment in our program is associated with reductions in average length of stay. More home visits were associated with decreased emergency department visits and hospitalizations. We also observed in patients with available cost data that total costs of care decreased after enrollment into the program. CONCLUSIONS: Our model has the potential to improve health outcomes and be financially sustainable by providing home-based primary care to CMC.

Pediatric Palliative Care.

Pediatric palliative care and hospice medicine is a field in which a multidisciplinary team assists in the management and treatment of infants, children, and young adults with a serious condition. A therapeutic relationship is created among the team, patients, and their caregivers to address total pain. This encompasses exploration of physical pain, social, spiritual, and emotional pain. Patient-centered and family-centered shared decision-making is paramount when setting and revisiting goals of care with patients and their families. Consider a checklist when faced with a dying patient so that the family and team feel supported.

Intranasal fentanyl for initial treatment of vaso-occlusive crisis in sickle cell disease.

BACKGROUND: Analgesia administration for children with vaso-occlusive crises is often delayed in the emergency department. Intranasal fentanyl (INF) has been shown to be safe and effective in providing rapid analgesia for other painful conditions. Our objective was to determine if children with a vaso-occlusive crisis (VOC) who received initial treatment with INF compared to placebo achieved a greater decrease in pain score after 20 min. PROCEDURE: This was a randomized, double-blind, placebo-controlled trial. Children with sickle cell disease, 3-20 years old, not taking daily opiates were eligible for the study. Subjects who presented to the emergency department with a pain score ≥6 were randomized to either a single dose of INF (2 µg/kg, maximum 100 µg) or an equivalent volume of intranasal saline. Pain scores were obtained using a modified Wong-Baker FACES pain scale prior to the administration of study drug and at 10, 20, and 30 min afterward. Additional analgesic medication was given per standard protocol. RESULTS: Forty-nine subjects completed the study (24 fentanyl and 25 placebo). Subjects who received INF had a greater decrease in median pain score at 20 min compared to placebo (2 [interquartile range, (IQR) 0.5-4] vs. 1 [IQR 0-2], P = 0.048), but not at 10 or 30 min. There were no serious adverse events in either group. CONCLUSION: Children who received INF had a greater decrease in pain score at 20 min compared to those who received placebo. Further studies should evaluate how to best incorporate INF into the emergency care of a child with a VOC.

Yield of diagnostic tests in obese children with an elevated alanine aminotransferase.

AIM: Nonalcoholic fatty liver disease (NAFLD) is associated with obesity and affects roughly 10% of children. However, NAFLD is often diagnosed by exclusion - that is, obese children with an elevated alanine aminotransferase (ALT) are screened for other liver diseases in the absence of a biopsy. This testing is nonstandardized, and professional society recommendations differ. This study examines the yield of testing for disorders other than NAFLD in this patient population. METHODS: A retrospective study was performed in 120 obese, asymptomatic, noncholestatic children with an ALT ≥40 U/L and additional diagnostic testing. RESULTS: No patients were found to have Wilson's, hepatitis A, hepatitis B, hepatitis C, cytomegalovirus, alpha-1 antitrypsin deficiency, autoimmune hepatitis, celiac disease or Epstein-Barr virus. Only one patient (1/120) was identified with definite disease other than NAFLD, which was muscular dystrophy. The positive predictive value of a screening test was 5%, and the specificity was 97%. Of 70 children with an abdominal ultrasound, no significant abnormalities were identified. CONCLUSION: Extensive testing in asymptomatic, noncholestatic, obese children with an elevated ALT may be of limited diagnostic value and false-positive tests are likely. Large, prospective studies are needed to help focus the work up in this patient population.

Pediatric palliative care.

Progress in pediatric palliative care has gained momentum, but there remain significant barriers to the appropriate provision of palliative care to ill and dying children, including the lack of properly trained health care professionals, resources to finance such care, and scientific research, as well as a continued cultural denial of death in children. This article reviews the epidemiology of pediatric palliative care, special communication concerns, decision making, ethical and legal considerations, symptom assessment and management, psychosocial issues, provision of care across settings, end-of-life care, and bereavement. Educational and supportive resources for health care practitioners and families, respectively, are included.