Role of Primary Care in Bridging Gaps in the Health Care System for Vulnerable Children in the United States of America: A Sickle Cell Disease Case Study.

Sickle cell disease (SCD) is a life-threatening condition. Given the nature of the disease and associated complications with high mortality and morbidity rates, it is imperative that patients are diagnosed in early infancy, are established with specialists and general pediatric care immediately, and receive continuity in care. A percentage of patients diagnosed with SCD fall within a vulnerable, at-risk population. This population may face greater social barriers that lead to missed or late diagnosis and therefore delayed management, significantly increasing the risk of morbidity and mortality. Screening tools such as state newborn screens help to identify the diagnosis early. However, patients in vulnerable, at-risk populations who are not established in the health care system may not receive timely communication about their illness and necessary next steps for care. We present a case of a 12-month-old female who is an example of one of the many patients who despite having undergone newborn screening, fell through the cracks due to social barriers including housing instability, food insecurity, and lack of access to transportation. This paper emphasizes the need for and provides a real example of the benefit of access to longitudinal primary care for vulnerable patients. We also demonstrate the role of primary care in clearing the care gaps and coordinating services quickly to ultimately prevent life-threatening complications specifically for children with previously undiagnosed chronic illnesses.

Bridging the Cardiac Needs of a Large, Underserved Immigrant and Resettled Refugee Population.

OBJECTIVE: To describe a monthly outreach pediatric cardiology clinic established to better understand the cardiac needs of immigrant/resettled refugee children. STUDY DESIGN: Data obtained between 2014 and 2017 from a monthly pediatric cardiology clinic at a Federally Qualified Health Center were analyzed using descriptive statistics. RESULTS: A total of 366 patients (222 male, 61%) were evaluated. Indications for referral included murmur (242, 66%), nonexertional symptoms (31, 9%), exertional symptoms (16, 4%), history of cardiac surgery/transcatheter interventions (15, 4%), previous diagnosis of heart conditions without intervention (13, 4%), arrhythmia/bradycardia (13, 4%), and others (36, 10%). Echocardiograms were performed on 136 patients (67 were abnormal, 49%). The most common final diagnoses include innocent murmur in 201 (55%), simple congenital heart disease in 61 (16%), complex congenital heart disease in 3 (1%), and acquired heart disease in 3 (1%). A total of 15 patients (4%) were ultimately determined to require surgical or cardiac catherization as an intervention. Patients have been followed for a median of 0.7 years (range 0-3.3 years). CONCLUSIONS: Rates of abnormal echocardiograms suggest a greater likelihood of congenital or acquired heart disease at time of initial consultation compared with nonimmigrant/refugee populations. The most common indication for referral to the outreach pediatric cardiology clinic was a murmur. Collaborative efforts between physicians and support services are essential in assisting this vulnerable population access pediatric subspecialty care.

Neonatal volkmann ischemic contracture: case report and review of literature.

Background Neonatal Volkmann ischemic contracture in newborns is a devastating condition with lifelong consequences. Case Report We report a neonate born with necrotic skin lesions and bullae on right dorsal thenar aspect of hand, who subsequently developed compartment syndrome requiring fasciotomy. Review and Conclusion Necrotic skin lesions with/without swelling, bullae are invariably present at birth in these patients and should be recognized as a sentinel finding of underlying tissue ischemia/compartment syndrome. Early recognition and prompt surgical intervention can be limb saving. A range of radiologic abnormalities and contractures were noted in upto 84% of such patients followed long term. Hence, we recommend close follow-up until occurrence of epiphyseal fusion in these patients.