Expert Evaluation of Strategies to Modernize Newborn Screening in the United States.

Importance: Novel therapies, including cell and gene therapies, can radically improve outcomes among patients with rare disorders, especially if provided early. Newborn screening (NBS) could support early access to novel therapies, but the speed of new therapy development is a disruptive event for which the public health NBS system and state newborn screening programs are unprepared. Objective: To identify and evaluate possible solutions for modernizing NBS. Design, Setting, and Participants: In this survey study, NBS experts representing clinical research, federal or state advisory boards, patient advocacy groups, industry, or state laboratories completed an online survey in which they considered 20 potential solutions for modernizing NBS and rated each. Exposures: Participants considered 20 potential solutions in the 5 following domains: (1) timeliness of disorder review, (2) alternative mechanisms to offer screening for new disorders not currently part of NBS, (3) expanded data collection, (4) support for states, and (5) emerging methods of screening and their consequences. Main Outcomes and Measures: Mean ratings for each solution on efficacy, acceptability, feasibility, and sustainability. Results: The survey was completed by 40 NBS experts (median [range] age, 54 [37-73] years; 22 [55.0%] women). Participants acknowledged that substantial change is needed to prepare the NBS system for rapid expansion of novel therapies; on a scale of 0 (no change) to 10 (extensive change), the median (range) score was 8 (2-10), with 18 respondents (45.0%) believing that the NBS would need many new components or an entirely new system to accommodate the changes. All solutions for modernization were considered potentially efficacious by at least 23 respondents (57.5%). The 2 most strongly endorsed were to establish mechanisms for cross-state data coordination for provisional disorders (38 respondents [95.0%]) and create a network of regional screening laboratories (36 [90.0%]). These were closely followed by aligning programs across federal agencies (35 [87.5%]), expanding funding for research (34 [85.0%]), expanding funding to states (34 [85.0%]), building capacity to identify genetic variants and an associated clinical database (34 [85.0%]), and conducting surveillance to study long-term outcomes (34 [85.0%]). Conclusions and Relevance: In this study, there was consensus among experts that NBS needs to change if the system is to be prepared for a rapid increase in transformative therapies. To our knowledge, this is the first systematic inventory of potential solutions for modernizing NBS and expert perceptions of each. The findings suggest that the modernization of NBS will require the integration of highly rated solutions, strategic planning, and coordination among multiple stakeholders.

Level of inequality and the role of governance indicators in the coverage of reproductive maternal and child healthcare services: Findings from India.

BACKGROUND: Diligent monitoring of inequalities in the coverage of essential reproductive, maternal, new-born and child health related (RMNCH) services becomes imperative to smoothen the journey towards Sustainable Development Goals (SDGs). In this study, we aim to measure the magnitude of inequalities in the coverage of RMNCH services. We also made an attempt to divulge the relationship between the various themes of governance and RMNCH indices. METHODS: We used National Family Health Survey dataset (2015-16) and Public Affairs Index (PAI), 2016 for the analysis. Two summative indices, namely Composite Coverage Index (CCI) and Co-Coverage (Co-Cov) indicator were constructed to measure the RMNCH coverage. Slope Index of Inequality (SII) and Relative Index of Inequality (RII) were employed to measure inequality in the distribution of coverage of RMNCH. In addition, we have used Spearman's rank correlation matrix to glean the association between governance indicator and coverage indices. RESULTS & CONCLUSIONS: Our study indicates an erratic distribution in the coverage of CCI and Co-Cov across wealth quintiles and state groups. We found that the distribution of RII values for Punjab, Tamil Nadu, and West Bengal hovered around 1. Whereas, RII values for Haryana was 2.01 indicating maximum inequality across wealth quintiles. Furthermore, the essential interventions like adequate antenatal care services (ANC4) and skilled birth attendants (SBA) were the most inequitable interventions, while tetanus toxoid and Bacilli Calmette- Guerin (BCG) were least inequitable. The Spearman's rank correlation matrix demonstrated a strong and positive correlation between governance indicators and coverage indices.

Improving child health care in Botswana: what can be done?

Access to appropriate healthcare for children remains a challenge in Botswana, as evidenced by the under five mortality rate and integrated management of childhood illness indicators. Successful implementation of the integrated management of childhood illnesses strategy can drastically reduce child mortality through innovation, national health care worker training coverage, enhanced supervision and use of guidelines.

Trauma-Informed Care.

Most children will experience some type of trauma during childhood, and many children suffer from significant adversities. Research in genetics, neuroscience, and epidemiology all provide evidence that these experiences have effects at the molecular, cellular, and organ level, with consequences on physical, emotional, developmental, and behavioral health across the life span. Trauma-informed care translates that science to inform and improve pediatric care and outcomes. To practically address trauma and promote resilience, pediatric clinicians need tools to assess childhood trauma and adversity experiences as well as practical guidance, resources, and interventions. In this clinical report, we summarize current, practical advice for rendering trauma-informed care across varied medical settings.

Reported Barriers to Healthcare Access and Service Disruptions Caused by COVID-19 in Burkina Faso, Ethiopia, and Nigeria: A Telephone Survey.

The coronavirus disease 2019 (COVID-19) pandemic may have short-term and long-term impacts on health services across sub-Saharan African countries. A telephone survey in Burkina Faso, Ethiopia, and Nigeria was conducted to assess the effects of the pandemic on healthcare services from the perspectives of healthcare providers (HCPs) and community members. A total of 900 HCPs (300 from each country) and 1,797 adult community members (approximately 600 from each country) participated in the study. Adjusted risk ratios (ARRs) and 95% confidence intervals (CIs) were computed using modified Poisson regression. According to the HCPs, more than half (56%) of essential health services were affected. Child health services and HIV/surgical/other services had a slightly higher percentage of interruption (33%) compared with maternal health services (31%). A total of 21.8%, 19.3%, and 7.7% of the community members reported that their family members and themselves had difficulty accessing childcare services, maternal health, and other health services, respectively. Nurses had a lower risk of reporting high service interruptions than physicians (ARR, 0.85; 95% CI, 0.56-0.95). HCPs at private facilities (ARR, 0.71; 95% CI, 0.59-0.84) had a lower risk of reporting high service interruptions than those at governmental facilities. Health services in Nigeria were more likely to be interrupted than those in Burkina Faso (ARR, 1.38; 95% CI, 1.19-1.59). Health authorities should work with multiple stakeholders to ensure routine health services and identify novel and adaptive approaches to recover referral services, medical care, maternal and child health, family planning, immunization and health promotion, and prevention during the COVID-19 era.

Pathways to diagnosis of pediatric TB patients: A mixed methods study from India.

BACKGROUND: A significant proportion of pediatric tuberculosis (TB) patients go unnotified due to the challenges in diagnosis of TB among children. The experiences of this vulnerable group while going through the TB care cascade remain largely undocumented. The aim of this study was to explore the experiences of pediatric TB patients and families along the pathway to TB diagnosis and appropriate treatment in four cities of India. METHODS: The study used a mixed methods, single phased, embedded design. The primary qualitative and secondary quantitative data were collected simultaneously by interviewing families of 100 randomly selected Xpert MTB/RIF positive pediatric TB patients, under the pediatric TB project, in 4 Indian cities using a semi-structured questionnaire. The qualitative component was analyzed to deduce patterns and themes on the patient and family experiences. Descriptive statistics were used to quantify various events along the TB care pathway including various delays (patient, diagnosis and total) and number of providers visited by patients during the diagnostic process. RESULTS: The median patient, diagnostic and total delays were 3 (IQR: 2,5), 39 (IQR: 23, 91) and 43 days (IQR: 28.5, 98.5), respectively. Patients visited a median of 3 (IQR: 2,4) providers before accessing Xpert MTB/RIF testing. On an average, 68.4% of physicians ordered any test most of them being irrelevant for TB diagnosis. Qualitative data showed considerable suffering for children and their families before and after TB diagnosis including serious concerns of stigma, disruption in education and social life and recurrence of the disease. CONCLUSION: Our study highlights the significant physical and social distress that the children with TB and their families undergo along the TB care pathway. It also shows diagnostic delay in excess of a month during which multiple providers were met and the patients underwent several diagnostic tests, most of them being inappropriate. Efforts to make Xpert MTB/RIF testing more accessible and part of physicians' toolkit will be of considerable value to ease the complexity of TB diagnosis in children. In addition, communication strategy needs to be developed and implemented to generate awareness among general population around pediatric TB and its management.

Pediatric rheumatology in Africa: thriving amidst challenges.

BACKGROUND: Pediatric Rheumatology is an orphan specialty in Africa which is gradually gaining importance across the continent. MAIN BODY: This commentary discusses the current state of affairs in the sphere of Pediatric Rheumatology across Africa and offers practical strategies to navigate the challenges encountered in research, models of care, education and training. We outline the establishment, opportunities of growth and achievements of the Pediatric Society of the African League Against Rheumatism (PAFLAR). CONCLUSION: This commentary lays the foundation for establishment of a formidable framework and development of partnerships for the prosperity of Pediatric Rheumatology in Africa and beyond.

Transition from pediatric to adult aftercare for survivors of pediatric cancer in Newfoundland and Labrador: a qualitative study.

BACKGROUND: Childhood cancer survivors (CCSs) face increased risks during the period when they leave pediatric care and transition into adult-focused aftercare. We examined the experiences of CCSs entering adult-focused aftercare to gain a better understanding of current transition practices and barriers to transition, and to identify opportunities for improving care. METHODS: We conducted a qualitative study using in-person and telephone semi-structured interviews. Childhood cancer survivors who recently transitioned out of pediatric care and health care providers (HCPs) who provide care for CCSs in Newfoundland and Labrador were identified using purposive sampling. Participants were interviewed between July 2017 and March 2019. Data were analyzed using both qualitative descriptive and thematic analysis. RESULTS: We conducted interviews with 5 CCSs and 9 HCPs. All CCSs interviewed reported receiving aftercare through their pediatric oncology program; only 2 reported receiving any form of aftercare in the adult setting. The lack of a structured transition process for CCSs in the province emerged as a theme in this study. Interview participants identified several barriers to transition: the added challenges for survivors in rural areas, changes in the availability of services after the transition to adult-focused aftercare, challenges associated with navigating the adult system, and a lack of education on transitioning into adult aftercare. INTERPRETATION: We found that there was little preparation for the transition of CCSs into adult care, and their aftercare was disrupted. Programs serving CCSs have opportunities to improve care by standardizing and better supporting these transitions, for example through the development of context-appropriate educational resources.

Access to Optimal Emergency Care for Children.

Every year, millions of pediatric patients seek emergency care. Significant barriers limit access to optimal emergency services for large numbers of children. The American Academy of Pediatrics, American College of Emergency Physicians, and Emergency Nurses Association have a strong commitment to identifying these barriers, working to overcome them, and encouraging, through education and system changes, improved access to emergency care for all children.

Análisis del uso y funciones del silencio en la comunicación de los pro-fesionales sanitarios en una unidad de oncología pediátrica / Analysis of the use and functions of silence in the communication of healthcare professionals in a pediatric oncology unit

Existen diferentes tipos de silencio, con múltiples funciones, y cada uno puede provocar efectos diversos en la comunicación. En el ámbito sanitario una comunicación eficaz es fundamental para lograr que los pacientes comprendan lo que les sucede y se expresen con claridad y confianza ante los profesionales sanitarios. El silencio juega un papel clave en esta comunicación. Objetivo: Desarrollar un instrumento para conocer la importancia que tiene el silencio para los profesionales sanitarios y analizar de qué manera emplean el silencio en su comunicación con los pacientes. Métodos: En el estudio han participado 43 profesionales del ámbito de la Oncología Pediátrica. Este estudio propone una clasificación de los tipos de silencio en la comunicación sanitaria. Resultados: El silencio es heterogéneo y cumple diferentes funciones. Se comprueba que los profesionales sanitarios emplean distintos tipos de silencio, siendo los Silencios Neutros los más utilizados, a continuación, los Silencios Productivos y los menos empleados los Silencios Obstructivos. Aquel que más se usa es el que favorece la atención, el acompañamiento, la reflexión y la expresión, mientras que el silencio de poder y el de desconexión son los menos empleados. Conclusión: El instrumento de evaluación propuesto (Q-SPS) ha presentado buenos niveles de consistencia interna para esta muestra permitiendo establecer un perfil comparativo entre el uso del silencio por parte de los distintos profesionales del ámbito de la salud por lo que podría valorarse una investigación más exhaustiva con mayor volumen de participantes (AU)

There are different kinds of silence and each of them has multiple functions and can cause several effects. Regarding the health field, an effective communication is key to enable the patients to understand the situation and to express themselves with clarity and confidence in front of health professionals. Silence is also key in that communication. Objective: The aim of this study is to know the importance of silence amongst professionals and to analyze the way they use silence in their communication with patients. Methods: 43 professionals belonging to the Pediatric Oncology field have taken part in the study. This study proposes a classification of the kinds of silence referred to health communication and a pilot tool to evaluate the silence in that communication. Results: The outcomes confirm that silence is heterogeneous and fulfils different purposes. It has confirmed that health professionals use different kinds of silence, among which Neutral Silences are the most frequent, followed by Productive Silences and with Obstructive Silences as the least used Moreover, the one more used is that which boosts attention, accompaniment, reflection and expression, whereas the silence of power and the silence of disconnection are the least used.Conclusions: The proposed evaluation tool (Q-SPS) has shown good level of inner consistency for this sample, allowing for setting a comparative profile in the use of silence amongst different health professionals, so a more exhaustive research with a greater volume of participants could be assessed (AU)

Employing learning health system principles to advance research on severe neonatal and paediatric illness in Kenya.

We have worked to develop a Clinical Information Network (CIN) in Kenya as an early form of learning health systems (LHS) focused on paediatric and neonatal care that now spans 22 hospitals. CIN's aim was to examine important outcomes of hospitalisation at scale, identify and ultimately solve practical problems of service delivery, drive improvements in quality and test interventions. By including multiple routine settings in research, we aimed to promote generalisability of findings and demonstrate potential efficiencies derived from LHS. We illustrate the nature and range of research CIN has supported over the past 7 years as a form of LHS. Clinically, this has largely focused on common, serious paediatric illnesses such as pneumonia, malaria and diarrhoea with dehydration with recent extensions to neonatal illnesses. CIN also enables examination of the quality of care, for example that provided to children with severe malnutrition and the challenges encountered in routine settings in adopting simple technologies (pulse oximetry) and more advanced diagnostics (eg, Xpert MTB/RIF). Although regular feedback to hospitals has been associated with some improvements in quality data continue to highlight system challenges that undermine provision of basic, quality care (eg, poor access to blood glucose testing and routine microbiology). These challenges include those associated with increased mortality risk (eg, delays in blood transfusion). Using the same data the CIN platform has enabled conduct of randomised trials and supports malaria vaccine and most recently COVID-19 surveillance. Employing LHS principles has meant engaging front-line workers, clinical managers and national stakeholders throughout. Our experience suggests LHS can be developed in low and middle-income countries that efficiently enable contextually appropriate research and contribute to strengthening of health services and research systems.