Quality of Life in Ugandan Children and Young Adults After Surgery for Congenital Heart Disease: Mixed Methods Approach.

Background: Health-related quality of life (HRQOL) is a critical issue for patients undergoing surgery for congenital heart disease (CHD) but has never been assessed in a low-income country. We conducted a cross-sectional mixed methods study with age-matched healthy siblings serving as controls at the Uganda Heart Institute. Methods: One-hundred fifteen CHD pediatric and young adult patients and sibling control participants were recruited. Health-related quality of life was assessed using the Pediatric Quality of Life Inventory Version 4.0 in participants ages 5-17 and 36-Item Short Form Survey for young adults aged 18-25. A subset of 27 participants completed face-to-face interviews to supplement quantitative findings. Results: Eighty-six pediatric (age 5-17) sibling and parent pairs completed Peds QOL surveys, and 29 young adult (age 18-25) sibling pairs completed SF-36 surveys. One third of patients had surgery in Uganda. Ventricular septal defects and tetralogy of Fallot were the most common diagnoses. Health-related quality of life scores in patients were lower across all domains compared to control participants in children. Reductions in physical and emotional domains of HRQOL were also statistically significant for young adults. Variables associated with lower HRQOL score on multivariate analysis in pediatric patients were younger age in the physical and emotional domains, greater number of surgeries in the physical domain and surgery outside Uganda in the school domain. The only predictor of lower HRQOL score in young adults was surgery outside Uganda in the social domain. Qualitative interviews identified a number of themes that correlated with survey results including abandonment by family, isolation from peers and community, financial hardship and social stigmatization. Conclusion: Health-related quality of life was lower in Ugandan patients after CHD surgery than siblings. Younger patients and those who had surgery outside of Uganda had lower HRQOL. These data have important implications for patients undergoing CHD surgery in LMIC and have potential to inform interventions.

Effects of COVID-19 on paediatric cardiac centres in low-income and middle-income countries: a mixed-methods study.

OBJECTIVES: The aim of this study was to understand the effects of the COVID-19 pandemic on paediatric cardiac services in critical access centres in low-income and middle-income countries. DESIGN: A mixed-methods approach was used. SETTING: Critical access sites that participate in the International Quality Improvement Collaborative (IQIC) for congenital heart disease (CHD) were identified. PARTICIPANTS: Eight IQIC sites in low-income and middle-income countries agreed to participate. OUTCOME MEASURES: Differences in volume and casemix before and during the pandemic were identified, and semistructured interviews were conducted with programme representatives and analysed by two individuals using NVivo software. The qualitative component of this study contributed to a better understanding of the centres' experiences and to identify themes that were common across centres. RESULTS: In aggregate, among the seven critical access sites that reported data in both 2019 and 2020, there was a 20% reduction in case volume, though the reduction varied among programmes. Qualitative analysis identified a universal impact for all programmes related to Access to Care/Clinical Services, Financial Stability and Professional/Personal Issues for healthcare providers. CONCLUSIONS: Our study identified and quantified a significant impact of the COVID-19 pandemic on critical access to CHD surgery in low-income and middle-income countries, as well as a significant adverse impact on both the skilled workforce needed to treat CHD and on the institutions in which care is delivered. These findings suggest that the COVID-19 pandemic has been a major threat to access to care for children with CHD in resource-constrained environments and that this effect may be long-lasting beyond the global emergency. Efforts are needed to preserve vulnerable CHD programmes even during unprecedented pandemic situations.

Makerere University-Uganda Heart Institute collaborative cardiovascular disease training and research since 1988.

Background: Makerere University College of Health Sciences has been collaborating with the Uganda Heart Institute to build capacity for research, training and clinical care in cardiovascular medicine for the last 34 years to appropriately respond to rising societal needs for advanced cardiovascular care which was lacking before this period. Aim: To describe the major milestones in the MakCHS-UHI cardiovascular training collaboration and chart way for future collaborations. Method: This short communication highlights some of the salient features and important milestones in the collaboration journey of the two institutions. Conclusion: Clinical centres of excellence in specialised fields of health care, such as the Uganda Heart Institute for Cardiology, provide a conducive academic environment for MakCHS clinical scientists to provide high quality evidence-based care to meet societal needs.

Hand Colonization with Gram-Negative Organisms of Healthcare Workers Accessing the Cardiac Intensive Care Unit: A Cross-Sectional Study at the Uganda Heart Institute.

BACKGROUND: Hands of healthcare workers (HCWs) are vehicles for pathogens responsible for healthcare-associated infections (HAIs). Following the identification of Gram-negative organisms (GNOs) in all cases of HAIs in the cardiac intensive care unit (ICU), we sought to determine the burden of hand colonization with GNOs among healthcare workers who access the cardiac ICU. METHODS: We retrospectively reviewed results from surveillance cultures of fingertip imprints of HCWs who access the cardiac ICU at the Uganda Heart Institute. We collected data on staff category, isolates, and susceptibility to antibiotics. We analyzed the data using Microsoft Excel, and the results are summarized in proportions and percentages and presented in charts and tables. RESULTS: Fifty-six healthcare workers participated in the surveillance. 21 were ICU clinicians, 21 non-ICU clinicians, and 14 nonclinicians. GNOs were cultured in 19 (33.9%) HCWs, in which 8/19 (42.1%) were non-ICU clinicians, 6/19 (31.2%) ICU clinicians, and 5/19 (26.3%) nonclinicians. 32 isolates were identified, of which 47%, 28%, and 25% were cultured from non-ICU clinicians, nonclinicians, and ICU clinicians, respectively. Predominant isolates were Acinetobacter (34%), Citrobacter (21.9%), and Pseudomonas (21.9%). Antimicrobial resistance ranged from 4% to 90%. 9/28 (32.1%) isolates, predominantly Acinetobacter species (spp), were carbapenem resistant. 8/28 (28.6%) isolates, predominantly Citrobacter spp, were multidrug resistant. Resistance to ciprofloxacin and cefepime was low at 3.6% and 4.4%, respectively. CONCLUSION: Gram-negative organisms, predominantly Acinetobacter, Citrobacter, and Pseudomonas spp, were prevalent on the hands of HCWs who access the cardiac ICU irrespective of the staff category. Antimicrobial resistance was high, with multidrug resistance and carbapenem resistance common among Citrobacter spp and Acinetobacter spp, respectively. Resistance to cefepime and ciprofloxacin was low.

Making cardiac surgery feasible in African countries: Experience from Namibia, Uganda, and Zambia.

OBJECTIVES: Few African countries have the resources to provide optimal cardiac surgery care. We explored needs at cardiac surgery centers in Namibia, Zambia, and Uganda. Our objectives were (1) to determine the key variables to be included in a cardiac surgery needs assessment tool and (2) to highlight the current initiatives, challenges and opportunities, and future goals for cardiac surgery in these 3 countries. METHODS: We conducted in-depth interviews with stakeholders in each country as well as surveys of surgical facilities. We synthesized our findings using a health systems conceptual framework. Each program's current capacity was compared with a standardized definition of "adequate" surgical capacity. On the basis of these findings, we developed a formal needs assessment questionnaire for use in resource-constrained countries. RESULTS: Although each of these countries has adequate facilities and surgical expertise, they still lack key support staff and material resources. Training and mentorship programs are being built, and the sites participate in cardiovascular research. Yet a comprehensive, multidisciplinary approach-including palliative care and rehabilitation-is lacking, and patients in remote areas are not being served. These observations allowed us to define the variables in our needs assessment tool. CONCLUSIONS: Our study demonstrates the great potential that exists to expand cardiac surgery in Africa and highlights some of the major resource bottlenecks that may hinder the scale-up of surgical programs. Our needs assessment questionnaire will assist ministries of health in building sustainable cardiac surgery programs using innovative Afro-centric solutions.

Pediatric cardiovascular care in Uganda: Current status, challenges, and opportunities for the future.

In many developing countries, concerted action against common childhood infectious diseases has resulted in remarkable reduction in infant and under-five mortality. As a result, pediatric cardiovascular diseases are emerging as a major contributor to childhood morbidity and mortality. Pediatric cardiac surgery and cardiac catheterization interventions are available in only a few of Sub-Saharan African countries. In Uganda, open heart surgeries (OHSs) and interventional procedures for pediatric cardiovascular disease are only possible at the Uganda Heart Institute (UHI), having been started with the help of expatriate teams from the years 2007 and 2012, respectively. Thereafter, independent OHS and cardiac catheterization have been possible by the local team at the UHI since the year 2009 and 2013, respectively. The number of OHSs independently performed by the UHI team has progressively increased from 10 in 2010 to 35 in 2015, with mortality rates ranging from 0% to 4.1% over the years. The UHI pediatric catheterization team has independently performed an increasing number of procedures each year from 3 in 2013 to 55 in 2015. We herein describe the evolution and current status of pediatric cardiovascular care in Uganda, highlighting the unique aspects of its establishment, existing constraints, and future plans.

Chest closure without drainage after open patent ductus arteriosus ligation in Ugandan children: A non blinded randomized controlled trial.

BACKGROUND: There is clinical equipoise regarding post-operative management of patients with patent ductus arteriosus (PDA) without insertion of a chest drain. This study evaluated post operative outcomes of chest closure with or without a drain following Patent Ductus Arteriosus ligation among childen at Uganda Heart Instritute (UHI). METHODS: This was an open label randomized controlled trial of 62 children 12 years of age and below diagnosed with patent ductus arteriosus at Mulago National Teaching and Referral Hospital, Uganda. Participants were randomized in the ratio of 1:1 with surgical ligation of patent ductus arteriosus to either thoracotomy closure with a chest tube or without a chest tube. All participants received standard care and were monitored hourly for 24 hours then until hospital discharge. The combined primary endpoint consisted of significant pleural space accumulation of fluid or air, higher oxygen need or infection of the surgical site. Analysis was conducted by multivariable logistic regression analysis at 5 % significance level. RESULTS: We enrolled 62 participants, 46 (74 %) of whom were females. Their median age was 12 months (IQR: 8-36). Participants in the no-drain arm significantly had less post-operative complications compared to the drain arm (Unadjusted odds ratio [uOR]: 0.21, 95 % CI: 0.06-0.73, p = 0.015). This "protective effect" remained without statistical significance in the multivariable regression model (Adjusted odds ratio [aOR]: 0.07, 95 % CI: 0.00-2.50, p = 0.144). CONCLUSION: Children aged below 6 years with patent ductus arterious can safely and effectively have thoracotomy closure without using a drain in uncomplicated surgical ligation of the PDA. Chest drain was associated with post-operative complications. TRIAL REGISTRATION: The trial was registered in the Pan African Clinical Trials registry on 1st/July/2012, retrospectively registered. Identifier number PACTR201207000395469 .

Outcome of patients undergoing open heart surgery at the Uganda heart institute, Mulago hospital complex.

BACKGROUND: Heart disease is a disabling condition and necessary surgical intervention is often lacking in many developing countries. Training of the superspecialties abroad is largely limited to observation with little or no opportunity for hands on experience. An approach in which open heart surgeries are conducted locally by visiting teams enabling skills transfer to the local team and helps build to build capacity has been adopted at the Uganda Heart Institute (UHI). OBJECTIVES: We reviewed the progress of open heart surgery at the UHI and evaluated the postoperative outcomes and challenges faced in conducting open heart surgery in a developing country. METHODS: Medical records of patients undergoing open heart surgery at the UHI from October 2007 to June 2012 were reviewed. RESULTS: A total of 124 patients underwent open heart surgery during the study period. The commonest conditions were: venticular septal defects (VSDs) 34.7% (43/124), Atrial septal defects (ASDs) 34.7% (43/124) and tetralogy of fallot (TOF) in 10.5% (13/124). Non governmental organizations (NGOs) funded 96.8% (120/124) of the operations, and in only 4 patients (3.2%) families paid for the surgeries. There was increasing complexity in cases operated upon from predominantly ASDs and VSDs at the beginning to more complex cases like TOFs and TAPVR. The local team independently operated 19 patients (15.3%). Postoperative morbidity was low with arrhythmias, left ventricular dysfunction and re-operations being the commonest seen. Post operative sepsis occurred in only 2 cases (1.6%). The overall mortality rate was 3.2. CONCLUSION: Open heart surgery though expensive is feasible in a developing country. With increased direct funding from governments and local charities to support open heart surgeries, more cardiac patients access surgical treatment locally.