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Background Strict visitor restrictions during the COVID-19 pandemic have been associated with staff moral distress in numerous clinical settings, yet little is known about effects on perceptions of pediatric end-of-life care. Objective To determine the effect of COVID-19 visitor restrictions on perceptions of quality of dying and death. Methods This was a cross-sectional survey of interdisciplinary staff caring for dying children in a cardiac intensive care unit with flexible visitation allowances compared with published policies reported in the literature at the time. Results No significant difference in perceptions of quality of dying and death was found between the prepandemic and pandemic periods despite similar clinical care provision. The relatively less stringent allowances at end of life did not adversely affect staff risk for infection. Conclusions The findings support affording some flexibility to visitation at end of life, which may mitigate negative staff perceptions of quality of dying and death. With the profound effects of COVID-19 on end-of-life care provision, these results may have implications for future global challenges.

There is significant uncertainty in describing prognosis and a lack of reliable entry criteria for palliative care studies in children with advanced heart disease (AHD). This study evaluates the utility of the surprise question-"Would you be surprised if this child died within the next year?"-to predict one-year mortality in children with AHD and assess its utility as entry criteria for future trials. This is a prospective cohort study of physicians and nurses caring for children (1 month-19 years) with AHD hospitalized ≥ 7 days. AHD was defined as single ventricle physiology, pulmonary vein stenosis or pulmonary hypertension, or any cardiac diagnosis with signs of advanced disease. Primary physicians were asked the surprise question and medical record review was performed. Forty-nine physicians responded to the surprise question for 152 patients. Physicians responded "No, I would not be surprised if this patient died" for 54 (36%) patients, 20 (37%) of whom died within 1 year, predicting one-year mortality with 77% sensitivity, 73% specificity, 37% positive predictive value, and 94% negative predictive value. Patients who received a "No" response had an increased 1-year risk of death (hazard ratio 7.25, p 0.001). Physician years of experience, subspecialty, and self-rated competency were not associated with the accuracy of the surprise question. The surprise question offers promise as a bedside screening tool to identify children with AHD at high risk for mortality and help physicians identify patients who may benefit from palliative care and advance care planning discussions.

Introduction Community Health Worker (CHW) programs have long been used to provide acute care for children and women in healthcare shortage areas, but their provision of comprehensive longitudinal care for chronic problems is rare. The Village Health Worker (VHW) program, initiated in 2007, is an example of a long standing “horizontal” CHW program in rural Southwestern Uganda that has delivered village-level care for chronic disease based on a biannual village health census that identifies individual and family health risks. To facilitate continuity of care for problems identified, health census data were electronically transformed into family-specific Family Health Sheets (FHS) in 2016 which summarize the pertinent demographic and health data for each family, as well as health topics the family would like to learn more about. The FHS, evaluated and discussed here, serves as an epidemiologically-informed “bedside” tool to help VHWs provide longitudinal care in their villages. Methods 48 VHWs in the program completed a survey on the utility of the FHS and 24 VHWs participated in small discussion groups. Responses were analyzed using both quantitative and standard conceptual content analysis models Results 46 out of 48 VHWs reported that the FHS made them a “much better VHW.” In addition to helping target interventions in child health, women’s health, and sanitation, the FHS assisted follow-up of non-communicable diseases in the community. In discussion groups, VHWs reported that the FHS helped them understand risks for future disease, facilitated earning stipends, and increased credibility and trust in the community. Limitations cited were the infrequent updates of the FHS, only biannually with the census, and the lack of cross-reference capability by health problem. Discussion The FHS supports VHWs in providing longitudinal and comprehensive healthcare of chronic diseases in their villages. Limitations, potential solutions, and future directions are discussed.

Objective Evaluate the effectiveness of home talks (HTs), a novel model of health education delivered by village health workers (VHWs) with primary-level education to rural African mothers. Talk recipients were assessed by health census to be at risk for ill-health in one of 5 ways: malnutrition, diarrhea, respiratory disease, HIV, and poverty due to family size. Methods Each participant received a pre-test, immediate post-test and delayed post-test on their assigned HT topic and a pre-test and delayed post-test on a randomly assigned control topic. Differences in scoring were examined against controls and over time using paired t-tests and general linear regression analysis, respectively. Results Subjects lost knowledge gained from the HTs over time, but what they retained at 3 months was far greater than what they learned about the control topics (p-values Conclusion Targeted HTs to people with health census-identified risk factors resulted in learning and significant retention of knowledge. Practice implications Positive behavioral change resulting from health education has been shown in diverse contexts. This personal model of home talk education by VHWs targeting vulnerable families is flexible and effective and may be used to improve community health in other impoverished settings worldwide.

Countries building sustainable, cardiac surgical care must ensure that the local health system has the capacity to support routine postoperative follow-up and generate the infrastructure required to provide timely diagnosis and management of common postoperative complications. Following valvular cardiac surgery, most patients will need management of residual symptoms of heart failure, adjustment and monitor of anticoagulation, administration of lifelong penicillin prophylaxis and guidance on how to navigate family planning. Anticoagulation has historically been seen as an insurmountable challenge in the rural poor; however, in this chapter, we present the PEN-Plus model for decentralized postoperative management—and provide insight into how its application can guide the way forward to support sustainable post-surgical capacity and appropriate patient follow-up in resource-constrained settings. Warfarin, for example, is a standard anticoagulant prescribed following most routine cardiovascular procedures, and its management requires careful consideration in under-resourced settings. Given its teratogenicity and associated untoward effects, if not managed properly, warfarin can present life threatening complications. As such, district hospitals must be equipped with the capacity to diagnose anticipated complications, to treat mild cases and to refer more severe cases of bleeding, valve thrombosis, or thromboembolic events toward tertiary levels of care in a timely and efficient manner. Patients must be counselled on the attendant risks of anticoagulation, and be provided education on how to maintain a consistent diet. Health systems must ensure that district hospitals have a reliable supply of both warfarin and INR testing supplies. Providers must be trained to diagnose and manage common ongoing complications including endocarditis, sternal wound infection and dehiscence, pericardial and pleural effusions, atrial fibrillation, valve thrombosis, valve dehiscence and hemolytic anemia. Furthermore, health systems need to set up comprehensive support systems for patients, including cardiac rehabilitation, nutritional, socioeconomic and mental health supports.

Cardiac surgery is an essential health service required to prevent mortality and morbidity among patients with valvular and other cardiac disease. Access to cardiac surgery has historically been limited in low and lower-middle income countries (LLMICs), especially among the rural poor. Decentralization of noncommunicable disease (NCD) care from national tertiary care hospitals to local district hospitals can help achieve equity and increase access to cardiac surgery. Within the described PEN-Plus model for NCD management, nurses at the district hospital level are trained to diagnose heart disease by simple physical examination and echocardiography, and manage heart disease using a locally validated protocol, with the assistance of cardiologists from large tertiary care hospitals. This decentralized model provides medical preoperative management and identifies patients eligible for cardiac surgery earlier in their natural history of disease. Case selection can be challenging in LLMICs, but must take into consideration the risks vs benefits of the cardiac surgery for each patient, age of the patient, disease severity, complexity of proposed surgery, local capacity in the operating room and intensive care unit, and likelihood of good surgical outcomes, all with an emphasis on equity. Decisions regarding types of interventions must be made with a patient-centered approach, taking into account not only medical information, but also social and cultural considerations. Cardiac surgery programs must have a national coordinator who is in close communication with local NCD nurses, national cardiologists, and cardiac surgery teams. This coordinator should maintain a dynamic database of patients eligible for surgery, as well as patients who have been operated on and require follow-up and anticoagulation.

Between 30% and 60% of hospital outpatient clinic patients were lost to follow-up. A defaulter-tracking service using performance-based remuneration for outreach workers, cutting across different clinical services, improved patient retention overall but varied by disease, with the poorest outcomes among patients with HIV., Among the many challenges facing health systems grappling with the explosive growth of chronic disease in Africa are continuity of care, particularly in poor, rural areas. We report the strategy, field experience, and results of an ongoing 6-year follow-up program operating in a rural district hospital in Kisoro, Uganda, that attempts to locate and reengage patients lost to follow-up (LTFU) from communities that are largely without phones, addresses, or paved roads. The program works with diverse hospital clinics, including chronic diseases, HIV, tuberculosis (TB), nutrition, and women's health, to identify patients who have not returned to care, employing a modest staff who spend about 20 days monthly making outreach visits by motorcycle in search of approximately 130 patients. We describe the organization of this unique “horizontal” program and report on follow-up outcomes between November 2015 to October 2016. Between 30% and 60% of patients were found to have lapses in care. The follow-up program was able to locate 64% of patients, with a reengagement rate of 54% to 92% (average, 69%) depending on the clinic. The program costs approximately US$5 per patient LTFU but about US$40 per patient maintained in care. The hospital-based follow-up program that cuts across diverse clinics and wards was novel and feasible in this rural sub-Saharan African setting.

Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children and families at end of life.To evaluate the Pediatric Intensive Care Unit Quality of Dying and Death (PICU-QODD) instrument and examine differences between disciplines and end-of-life circumstances.This cross-sectional survey included staff at a single center involved in pediatric CICU deaths from July 1, 2019, to June 30, 2021.Staff demographic characteristics, intensity of end-of-life care (mechanical support, open chest, or cardiopulmonary resuscitation [CPR]), mode of death (discontinuation of life-sustaining therapy, treatment limitation, comfort care, CPR, and brain death), and palliative care involvement.PICU-QODD instrument standardized score (maximum, 100, with higher scores indicating higher quality); global rating of quality of the moment of death and 7 days prior (Likert 11-point scale, with 0 indicating terrible and 10, ideal) and mode-of-death alignment with family wishes.Of 60 patient deaths (31 [52%] female; median [IQR] age, 4.9 months [10 days to 7.5 years]), 33 (55%) received intense care. Of 713 surveys (72% response rate), 246 (35%) were from nurses, 208 (29%) from medical practitioners, and 259 (36%) from allied health professionals. Clinical experience varied (298 [42%] ≤5 years). Median (IQR) PICU-QODD score was 93 (84-97); and quality of the moment of death and 7 days prior scores were 9 (7-10) and 5 (2-7), respectively. Cronbach α ranged from 0.87 (medical staff) to 0.92 (allied health), and PICU-QODD scores significantly correlated with global rating and alignment questions. Mean (SD) PICU-QODD scores were more than 3 points lower for nursing and allied health compared with medical practitioners (nursing staff: 88.3 [10.6]; allied health: 88.9 [9.6]; medical practitioner: 91.9 [7.8]; P .001) and for less experienced staff (eg,2 y: 87.7 [8.9];15 y: 91, P = .002). Mean PICU-QODD scores were lower for patients with comorbidities, surgical admissions, death following treatment limitation, or death misaligned with family wishes. No difference was observed with palliative care involvement. High-intensity care, compared with low-intensity care, was associated with lower median (IQR) rating of the quality of the 7 days prior to death (4 [2-6] vs 6 [4-8]; P = .001) and of the moment of death (8 [4-10] vs 9 [8-10]; P =.001).In this cross-sectional survey study of CICU staff, the PICU-QODD showed promise as a reliable and valid clinician measure of quality of dying and death in the CICU. Overall QODD was positively perceived, with lower rated quality of 7 days prior to death and variation by staff and patient characteristics. Our data could guide strategies to meaningfully improve CICU staff well-being and end-of-life experiences for patients and families.

This is a novel case of a 16-month-old boy with a history of prematurity with intrauterine growth restriction, severe failure to thrive, microcephaly, pachygyria, agenesis of the corpus callosum, and postnatal embolic stroke, who presented with new-onset diabetes mellitus with diabetic ketoacidosis in the setting of severe acute respiratory syndrome coronavirus 2 infection, with a course complicated by atypical hemolytic syndrome (aHUS). This patient demonstrated remarkable insulin resistance in the period before aHUS diagnosis, which resolved with the first dose of eculizumab therapy. There is increasing evidence that COVID-19 is associated with thrombotic disorders and that microangiopathic processes and complement-mediated inflammation may be implicated. In this case report, we describe a pediatric patient with COVID-19 and a new complement-mediated microangiopathic thrombotic disease. Because whole-exome sequencing and extensive workup returned without a clear etiology for aHUS, this is likely a COVID-19 triggered case of aHUS versus an idiopathic case that was unmasked by the infection.

The literature on the global burden of noncommunicable diseases (NCDs) contrasts a spiraling epidemic centered in low-income countries with low levels of awareness, risk factor control, infrastructure, personnel and funding. There are few data-based reports of broad and interconnected strategies to address these challenges where they hit hardest. Kisoro district in Southwest Uganda is rural, remote, over-populated and poor, the majority of its population working as subsistence farmers. This paper describes the 10-year experience of a tri-partite collaboration between Kisoro District Hospital, a New York teaching hospital, and a US-based NGO delivering hypertension services to the district. Using data from patient and pharmacy registers and a random sample of charts reviewed manually, we describe both common and often-overlooked barriers to quality care (clinic overcrowding, drug stockouts, provider shortages, visit non-adherence, and uninformative medical records) and strategies adopted to address these barriers (locally-adapted treatment guidelines, patient-clinic-pharmacy cost sharing, appointment systems, workforce development, patient-provider continuity initiatives, and ongoing data monitoring). We find that: 1) although following CVD risk-based treatment guidelines could safely allocate scarce medications to the highest-risk patients first, national guidelines emphasizing treatment at blood pressures over 140/90 mmHg ignore the reality of "stockouts" and conflict with this goal; 2) often-overlooked barriers to quality care such as poor quality medical records, clinic disorganization and local employment practices are surmountable; 3) cost-sharing initiatives partially fill the gap during stockouts of government supplied medications, but still may be insufficient for the poorest patients; 4) frequent prolonged lapses in care may be the norm for most known hypertensives in rural SSA, and 5) ongoing data monitoring can identify local barriers to quality care and provide the impetus to ameliorate them. We anticipate that our 10-year experience adapting to the complex challenges of hypertension management and a granular description of the solutions we devised will be of benefit to others managing chronic disease in similar rural African communities.

Introduction The medical community recognizes the importance of confronting structural racism and implicit bias to address health inequities. Several curricula aimed at teaching trainees about these issues are described in the literature. However, few curricula exist that engage faculty members as learners rather than teachers of these topics or target interdisciplinary audiences. Methods We developed a longitudinal case conference curriculum called Health Equity Rounds (HER) to discuss and address the impact of structural racism and implicit bias on patient care. The curriculum engaged participants across training levels and disciplines on these topics utilizing case-based discussion, evidence-based exercises, and two relevant conceptual frameworks. It was delivered quarterly as part of a departmental case conference series. We evaluated HER's feasibility and acceptability by tracking conference attendance and administering postconference surveys. We analyzed quantitative survey data using descriptive statistics and qualitatively reviewed free-text comments. Results We delivered seven 1-hour HER conferences at our institution from June 2016 to June 2018. A mean of 66 participants attended each HER. Most survey respondents (88% or more) indicated that HER promoted personal reflection on implicit bias, and 75% or more indicated that HER would impact their clinical practice. Discussion HER provided a unique forum for practitioners across training levels to address structural racism and implicit bias. Our aim in dissemination is to provide meaningful tools for others to adapt at their own institutions, recognizing that HER should serve as a component of larger, multifaceted efforts to decrease structural racism and implicit bias in health care.