The Role of Human-Centered Design in Healthcare Innovation: a Digital Health Equity Case Study.

Healthcare delivery has become more complicated, particularly with the addition of digital tools and advanced technologies that can further exacerbate existing disparities. New approaches to solve complex, multi-faceted problems are needed. Human-centered design (HCD), also known as design thinking, is an innovative set of methods to develop solutions to these types of issues using collaborative, team-based, and empathetic approaches focused on end user experiences. Originally advanced in technology sectors, HCD has garnered growing attention in quality improvement, healthcare redesign, and public health and medical education. During the COVID-19 pandemic, our healthcare organization recognized notable differences in utilization of virtual (video-based) services among specific patient populations. In response, we mobilized, and using HCD, we collectively brainstormed ideas, rapidly developed prototypes, and iteratively adapted solutions to work toward addressing this digital divide and clinic and systems-level struggles with improving and maintaining digital health access. HCD approaches create a cohesive team-based structure that permits the dismantling of organizational hierarchies and departmental silos. Here we share lessons learned on implementing HCD into clinical care settings and how HCD can result in the development of site-specific, patient-centered innovations to address access disparities and to improve digital health equity.

EP300-related Rubinstein-Taybi syndrome: Highlighted rare phenotypic findings and a genotype-phenotype meta-analysis of 74 patients.

Pathogenic variants in the homologous and highly conserved genes-CREBBP and EP300-are causal for Rubinstein-Taybi syndrome (RSTS). CREBBP and EP300 encode histone acetyltransferases (HAT) that act as transcriptional co-activators, and their haploinsufficiency causes the pathology characteristic of RSTS by interfering with global transcriptional regulation. Though generally a well-characterized syndrome, there is a clear phenotypic spectrum; rare associations have emerged with increasing diagnosis that is critical for comprehensive understanding of this rare syndrome. We present 12 unreported patients with RSTS found to have EP300 variants discovered through gene sequencing and chromosomal microarray. Our cohort highlights rare phenotypic features associated with EP300 variants, including imperforate anus, retained fetal finger pads, and spina bifida occulta. Our findings support the previously noted prevalence of pregnancy-related hypertension/preeclampsia seen with this disease. We additionally performed a meta-analysis on our newly reported 12 patients and 62 of the 90 previously reported patients. We demonstrated no statistically significant correlation between phenotype severity (within the domains of intellectual disability and major organ involvement, as defined in our Methods section) and variant location and type; this is in contrast to the conclusions of some smaller studies and highlights the importance of large patient cohorts in characterization of this rare disease.

Pulling the Wool Off Our Eyes: Medical Child Abuse.

Medical child abuse (MCA) continues to remain a challenging form of abuse to recognize, diagnose, and manage. The perpetrators of MCA have some common features that may heighten the suspicion that a child is the victim of MCA. Once suspected, the development of a multidisciplinary care plan that incorporates all subspecialists and health care providers involved in the child's care is essential. A structured approach to record review can clarify the concerns and discrepancies as well assist in potential future testimony. The use of overt or covert video surveillance systems are potential modalities to aid in making the diagnosis of MCA. If called to testify, it is helpful to understand the court system. Risks to the child from MCA are great and include a high level of long-term morbidity and mortality. Understanding this diagnosis and having a plan in place to address it when suspected can prevent further harm to the child. [Pediatr Ann. 2020;49(8):e354-e358.].

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.

Historical Perspectives: Telemedicine in Neonatology.

Telemedicine is fast becoming integrated into health care as a way to increase access for patients, particularly across the urban/rural divide. Use of telemedicine in neonatology is a newer, yet rapidly expanding modality. This review outlines the history of telemedicine, the evolution of its current uses in neonatology, requirements for starting a telemedicine program, and potential future uses.

Hurricane Irma Impact on the Inpatient Population at a Tertiary Children's Hospital in Florida.

Hurricane Irma resulted in the evacuation of 6.3 million people in Florida in September, 2017. Our tertiary Children's Hospital activated our incident command center (ICC) 24 hours before storm landfall, and preparations were made to accommodate vulnerable pediatric patients (VPP) or children with medical complexity. Our ICC was active for 92 hours and the hospital was staffed with 467 associates and 40 physicians. Urgent operative and interventional radiology procedures were performed during the storm. Thirteen patients were transferred to our facility and 13 VPP were sheltered. During the lockdown period, our facility operated at 90 per cent capacity inclusive of VPP. Personnel were used in critical areas in the hospital, independent of their base units. There were no adverse outcomes or complications. Timely activation of ICC and deployment of Team A 24 hours before storm hit allowed for safe hospital operations. Planning for the inflow of patients is imperative to allow for preemptive deployment of staff and resources for inpatients, transfers, emergency room admissions, and VPP. VPP should be monitored regionally as they will consume hospital resources during natural disasters and must be accounted for to allow for safe and effective care delivery for all patients.

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.].

A pilot program to improve vaccination status for hospitalized children.

OBJECTIVES: Screening of immunization status at each health care encounter is recommended to improve immunization coverage rates but is often limited to primary care practices. A pilot intervention study was performed to ascertain the immunization status of hospitalized children and determine if development of an immunization plan before discharge would improve the vaccination status for such children. METHODS: On the basis of power calculations estimated to detect an increase in immunization status from 60% to 70% with 80% power, 356 randomly selected children were enrolled between March 6, 2012 and June 14, 2012. Immunization records were obtained, immunization status determined, and parent/guardian informed if catch-up dose(s) were needed. If parent requested vaccine dose(s), they were administered before discharge. RESULTS: Vaccination status was current per Advisory Committee on Immunization Practices guidelines in 73% of hospitalized children, and 27% children required catch-up dose(s) (200 doses for 95 children). Human papilloma virus vaccine (dose 1), varicella zoster vaccine (dose 2), and meningococcal conjugate vaccine were the most commonly identified dose(s) needed. Of those requiring catch-up dose(s), 25% were caught up, increasing vaccination status to 80% at 1-month post hospital discharge. CONCLUSIONS: This is the first study to determine the immunization status of hospitalized pediatric patients of all ages, including adolescents, providing new data on the immunization status of the inpatient pediatric population. A pilot intervention consisting of obtaining immunization records, determining immunization status, and discussing catch-up dose(s) before discharge resulted in improvement of immunization status, suggesting that the inpatient setting may be used along with many other national strategies to help address missed vaccination opportunities.

The effect of a patient- and family-centered care curriculum on pediatrics residents' patient-centeredness.

BACKGROUND: Patient- and family-centered care (PFCC) approaches to care are important in enhancing the patient-centeredness of the health care experience, yet little is known about the effectiveness of formal approaches for teaching patient-centeredness in residency. INTERVENTION: We developed and implemented a PFCC curriculum and assessed its impact on residents' self-perceptions of patient-centered behavior and practices. METHODS: We used a quasi-experimental, nonrandomized approach with a pretest-posttest design. An experimental group of 24 interns filled out the Patient Practitioner Orientation Scale (PPOS) before residency, and a control group of 18 graduating residents who had not been exposed to a PFCC curriculum also completed the PPOS. After 2 years of residency and exposure to a PFCC curriculum, interns in the experimental group repeated the PPOS. We compared mean total and subscale PPOS scores. RESULTS: There was no difference in baseline total or subscale PPOS scores between the experimental and control group. The mean total PPOS score for the experimental group after exposure to the curriculum was 4.55 (P  =  .45), reflecting no change in patient-centeredness. The 17 female interns in the intervention group were more patient centered (4.8 ± 0.36) than the 6 male interns (4.2 ± 0.38) (P  =  .005), scoring significantly higher (4.6 ± 0.39 versus 4.0 ± 0.38) in the sharing domain (P  =  .001). CONCLUSION: Interns' exposure to a PFCC curriculum did not result in a change in their perceived patient-centeredness. Most pediatrics residents at our children's hospital perceive themselves as patient and family centered at the start of residency and remain so throughout.