Subject(s)
Child Health Services/standards , Child Health/standards , Disasters , Emergencies , Global Health/standards , Adolescent , Child , Child Health Services/organization & administration , Child, Preschool , Europe , Humans , Infant , Infant, Newborn , International Cooperation , Pediatrics , Societies, MedicalABSTRACT
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.
Subject(s)
Expert Testimony , Neonatal Screening/standards , Child Health Services/standards , Female , Humans , Infant, Newborn , Pregnancy , Quality Improvement , Surveys and Questionnaires , United StatesABSTRACT
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.
Subject(s)
Child Health Services/standards , Healthcare Disparities/trends , Maternal-Child Health Services/trends , Reproduction/physiology , Child , Family , Female , Government , Humans , India/epidemiology , Pregnancy , Prenatal Care/standards , Socioeconomic Factors , Sustainable Development/trendsABSTRACT
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.
Subject(s)
Child Health Services/organization & administration , Delivery of Health Care/organization & administration , Health Services Accessibility , Botswana , Child , Child Health Services/standards , Child Mortality , Child, Preschool , Delivery of Health Care/standards , Health Personnel/education , Health Personnel/organization & administration , HumansSubject(s)
Communicable Disease Control , Immunization Programs , Vaccination Coverage , Vaccine-Preventable Diseases , Child , Child Health Services/standards , Communicable Disease Control/methods , Communicable Disease Control/organization & administration , Communicable Disease Control/trends , Global Health , Health Services Accessibility , Health Services Needs and Demand , Humans , Immunization Programs/organization & administration , Immunization Programs/standards , Vaccine-Preventable Diseases/epidemiology , Vaccine-Preventable Diseases/prevention & controlABSTRACT
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.
Subject(s)
Wounds and Injuries , Child , Child Health Services/standards , HumansABSTRACT
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.
Subject(s)
COVID-19/epidemiology , Health Personnel/statistics & numerical data , Health Services Accessibility/statistics & numerical data , Health Services Accessibility/standards , Surveys and Questionnaires/statistics & numerical data , Adult , Aged , Burkina Faso/epidemiology , Child , Child Health Services/standards , Child Health Services/statistics & numerical data , Ethiopia/epidemiology , Female , Humans , Male , Maternal Health Services/standards , Maternal Health Services/statistics & numerical data , Middle Aged , Nigeria/epidemiology , Pregnancy , Telephone , Young AdultSubject(s)
COVID-19 , Child Health Services/standards , Disease Transmission, Infectious/prevention & control , Infection Control , Respiratory Function Tests , Respiratory Tract Diseases/diagnosis , COVID-19/epidemiology , COVID-19/prevention & control , COVID-19/transmission , Child , Child Health , Humans , Infection Control/instrumentation , Infection Control/methods , Infection Control/organization & administration , Quality Improvement , Respiratory Function Tests/adverse effects , Respiratory Function Tests/methods , Respiratory Function Tests/standards , Risk Assessment , SARS-CoV-2 , Safety Management/trendsABSTRACT
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.
Subject(s)
Communication Barriers , Delayed Diagnosis , Family Health , Health Knowledge, Attitudes, Practice , Social Stigma , Time-to-Treatment , Tuberculosis , Child , Child Health Services/organization & administration , Child Health Services/standards , Critical Pathways/organization & administration , Delayed Diagnosis/adverse effects , Delayed Diagnosis/prevention & control , Delayed Diagnosis/psychology , Diagnostic Techniques and Procedures/standards , Diagnostic Techniques and Procedures/statistics & numerical data , Education , Humans , India/epidemiology , Mycobacterium tuberculosis/genetics , Mycobacterium tuberculosis/isolation & purification , Parents , Surveys and Questionnaires , Time-to-Treatment/standards , Time-to-Treatment/statistics & numerical data , Tuberculosis/diagnosis , Tuberculosis/epidemiology , Tuberculosis/therapyABSTRACT
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.
Subject(s)
Child Health Services , Patient Care Management/methods , Pediatrics , Rheumatic Diseases , Rheumatology , Africa/epidemiology , Child , Child Health Services/organization & administration , Child Health Services/standards , Child Health Services/trends , Health Services Needs and Demand , Humans , Models, Organizational , Pediatrics/education , Pediatrics/trends , Practice Patterns, Physicians'/organization & administration , Rheumatic Diseases/epidemiology , Rheumatic Diseases/therapy , Rheumatology/education , Rheumatology/methods , Rheumatology/organization & administration , Rheumatology/trendsABSTRACT
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.
Subject(s)
Child Health Services/standards , Emergency Medical Services/standards , Health Services Accessibility , Quality of Health Care , Child , Guidelines as Topic , Humans , United StatesABSTRACT
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.
Subject(s)
Aftercare , Child Health Services/standards , Health Services Accessibility/standards , Neoplasms , Psychosocial Support Systems , Adolescent , Aftercare/methods , Aftercare/organization & administration , Aftercare/psychology , Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Child , Female , Health Services Needs and Demand , Humans , Male , Neoplasms/epidemiology , Neoplasms/psychology , Neoplasms/therapy , Newfoundland and Labrador/epidemiology , Qualitative Research , Quality Improvement , Reference Standards , Rural Health/standards , Transition to Adult Care/organization & administration , Transitional Care/standardsABSTRACT
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.
Subject(s)
Child Health Services/standards , Delivery of Health Care/standards , Health Services Accessibility/standards , Health Services Research , Quality Improvement , COVID-19/epidemiology , COVID-19/prevention & control , Child , Child, Preschool , Developing Countries , Diarrhea/epidemiology , Diarrhea/prevention & control , Humans , Infant , Infant, Newborn , Kenya/epidemiology , Malaria/epidemiology , Malaria/prevention & control , Pandemics , Pneumonia/epidemiology , Pneumonia/prevention & control , SARS-CoV-2ABSTRACT
OBJECTIVES: The coronavirus pandemic created significant, abrupt challenges to the delivery of ambulatory health care. Because tertiary medical centers limited elective in-person services, telehealth was rapidly enacted in settings with minimal previous experience to allow continued access to care. With this quality improvement (QI) initiative, we aimed to achieve a virtual visit volume of at least 75% of our prepandemic volume. We also describe patient and provider experience with telehealth services. METHODS: Our QI team identified the primary drivers contributing to low telehealth volume and developed a telehealth scheduling protocol and data tracking system using QI-based strategies. Patients and providers were surveyed on their telehealth experience. RESULTS: At the onset of the pandemic, weekly visit volume dropped by 65% (99 weekly visits; historical average of 281). Over the subsequent 3 weeks, using rapid Plan-Do-Study-Act cycles, we achieved our goal volume. In surveys, it was indicated that most participants had never before used telehealth (71% of patients; 82% of providers) yet reported high satisfaction (90% of patients; 81% of providers). Both groups expressed concern over the lack of in-person assessments. Most respondents were interested in future use of telehealth. CONCLUSIONS: With a QI-based approach, we successfully maintained access to care via telehealth services for pediatric pulmonary patients during the coronavirus pandemic and found high rates of satisfaction among patients and providers. Telehealth will likely continue to be a part of our health care delivery platform, expanding the reach of our services. Further work is needed to understand the effects on clinical outcomes.