Can machine learning methods be used for identification of at-risk neonates in low-resource settings? A prospective cohort study.

INTRODUCTION: Timely identification of at-risk neonates (ARNs) in the community is essential to reduce mortality in low-resource settings. Tools such as American Academy of Pediatrics pulse oximetry (POx) and WHO Young Infants Clinical Signs (WHOS) have high specificity but low sensitivity to identify ARNs. Our aim was assessing the value of POx and WHOS independently, in combination and with machine learning (ML) from clinical features, to detect ARNs in a low/middle-income country. METHODS: This prospective cohort study was conducted in a periurban community in Pakistan. Eligible live births were screened using WHOS and POx along with clinical information regarding pregnancy and delivery. The enrolled neonates were followed for 4 weeks of life to assess the vital status. The predictive value to identify ARNs, of POx, WHOS and an ML model using maternal and neonatal clinical features, was assessed. RESULTS: Of 1336 neonates, 68 (5%) had adverse outcomes, that is, sepsis (n=40, 59%), critical congenital heart disease (n=2, 3%), severe persistent pulmonary hypertension (n=1), hospitalisation (n=8, 12%) and death (n=17, 25%) assessed at 4 weeks of life. Specificity of POx and WHOS to independently identify ARNs was 99%, with sensitivity of 19% and 63%,respectively. Combining both improved sensitivity to 70%, keeping specificity at 98%. An ML model using clinical variables had 44% specificity and 76% sensitivity. A staged assessment, where WHOS, POx and ML are sequentially used for triage, increased sensitivity to 85%, keeping specificity 75%. Using ML (when WHOS and POx negative) for community follow-up detected the majority of ARNs. CONCLUSION: Classic screening, combined with ML, can help maximise identifying ARNs and could be embedded in low-resource clinical settings, thereby improving outcome. Sequential use of classic assessment and clinical ML identifies the most ARNs in the community, still optimising follow-up clinical care.

Implementation evaluation of a medical student-led intervention to enhance students' engagement with research: Findings and lessons learned.

INTRODUCTION: Medical colleges globally have student organizations that serve to enable students' involvement in research. However, details of their approach and activities are seldom published to serve as learning for student organizations in other settings. The Student Research Forum (SRF), a student organization based at a private medical school in Pakistan aims to facilitate students in acquiring research skills. Following the observation of a downward trajectory of student initiative and interest, SRF leadership restructured the organization and improve its impact. This study describes the development and implementation evaluation of the interventions. METHODOLOGY: The operational framework was revised using the Theory of Change by the core group. Major interventions included enhanced social media and outreach coordination, research workshops, journal clubs, and mentorship to increase research output, mentorship opportunities, and knowledge of medical research; ultimately improving quality in research. The outcomes generated over the course of the study's duration from July 2019 to September 2021 were analyzed using the process metrics of reach, adoption, and efficacy. RESULTS: As a result of the interventions, SRF expanded its reach by conducting a total of 41 events during the duration of the study, facilitated by social media growth on each of SRF's online platforms, with a 300% increase in followers on Facebook, and a nationwide network of 91 student ambassadors. An annual workshop series taught research skills to more than 3800 participants. Students leading their own events, SRF featuring international speakers, and the abstracts submitted to SRF's annual conference, along with the conference's reach of 10,000 students, are seen as improvements in the ToC-informed interventions' adoption. The efficacy of the interventions manifested as the REACH program allocated 56 research projects to vetted applicants. CONCLUSION: The applied interventions have accelerated SRF's progress towards achieving its long-term outcome of increased quality in research as translated by increased research output quantity, mentorship, and knowledge of medical research. Further evaluation is required to assess the success of the ToC. As SRF continues to grow, a continued analysis of the implementation outcomes is imperative to gauge its effectiveness.

Recommendations for developing effective and safe paediatric and congenital heart disease services in low-income and middle-income countries: a public health framework.

The global burden of paediatric and congenital heart disease (PCHD) is substantial. We propose a novel public health framework with recommendations for developing effective and safe PCHD services in low-income and middle-income countries (LMICs). This framework was created by the Global Initiative for Children's Surgery Cardiac Surgery working group in collaboration with a group of international rexperts in providing paediatric and congenital cardiac care to patients with CHD and rheumatic heart disease (RHD) in LMICs. Effective and safe PCHD care is inaccessible to many, and there is no consensus on the best approaches to provide meaningful access in resource-limited settings, where it is often needed the most. Considering the high inequity in access to care for CHD and RHD, we aimed to create an actionable framework for health practitioners, policy makers and patients that supports treatment and prevention. It was formulated based on rigorous evaluation of available guidelines and standards of care and builds on a consensus process about the competencies needed at each step of the care continuum. We recommend a tier-based framework for PCHD care integrated within existing health systems. Each level of care is expected to meet minimum benchmarks and ensure high-quality and family centred care. We propose that cardiac surgery capabilities should only be developed at the more advanced levels on hospitals that have an established foundation of cardiology and cardiac surgery services, including screening, diagnostics, inpatient and outpatient care, postoperative care and cardiac catheterisation. This approach requires a quality control system and close collaboration between the different levels of care to facilitate the journey and care of every child with heart disease. This effort was designed to guide readers and leaders in taking action, strengthening capacity, evaluating impact, advancing policy and engaging in partnerships to guide facilities providing PCHD care in LMICs.

Neurodevelopment assessment of small for gestational age children in a community-based cohort from Pakistan.

BACKGROUND: Children born small for gestational age (SGA) may experience more long-term neurodevelopmental issues than those born appropriate for gestational age (AGA). This study aimed to assess differences in the neurodevelopment of children born SGA or AGA within a periurban community in Pakistan. METHODS: This was a prospective cohort study in which study participants were followed from the pilot Doppler cohort study conducted in 2018. This pilot study aimed to develop a pregnancy risk stratification model using machine learning on fetal Dopplers. This project identified 119 newborns who were born SGA (2.4±0.4 kg) based on International Fetal and Newborn Growth Consortium standards. We assessed 180 children (90 SGA and 90 AGA) between 2 and 4 years of age (76% of follow-up rate) using the Malawi Developmental Assessment Tool (MDAT). FINDINGS: Multivariable linear regression analysis comparing the absolute scores of MDAT showed significantly lower fine motor scores (ß: -0.98; 95% CI -1.90 to -0.06) among SGAs, whereas comparing the z-scores using multivariable logistic regression, SGA children had three times higher odds of overall z-scores ≤-2 (OR: 3.78; 95% CI 1.20 to 11.89) as compared with AGA children. INTERPRETATION: SGA exposure is associated with poor performance on overall MDAT, mainly due to changes in the fine motor domain in young children. The scores on the other domains (gross motor, language and social) were also lower among SGAs; however, none of these reached statistical significance. There is a need to design follow-up studies to assess the impact of SGA on child's neurodevelopmental trajectory and school performance.

Global Access to Comprehensive Care for Paediatric and Congenital Heart Disease.

Paediatric and congenital heart disease (PCHD) is common but remains forgotten on the global health agenda. Congenital heart disease is the most frequent major congenital anomaly, affecting approximately 1 in every 100 live births. In high-income countries, most children now live into adulthood, whereas in low- and middle-income countries, over 90% of patients do not get the care they need. Rheumatic heart disease is the most common acquired cardiovascular disease in children and adolescents. While almost completely eradicated in high-income countries, over 30-40 million people live with rheumatic heart disease in low- and middle-income countries. Challenges exist in the care for PCHD and, increasingly, adult congenital heart disease (ACHD) worldwide. In this review, we summarize the current status of PCHD and ACHD care through the health systems lens of workforce, infrastructure, financing, service delivery, information management and technology, and governance. We further highlight gaps in knowledge and opportunities moving forward to improve access to care for all those living with PCHD or ACHD worldwide.

Les cardiopathies pédiatriques et congénitales (CPC) sont fréquentes, mais demeurent dans l'angle mort des politiques de santé mondiale. La cardiopathie est l'anomalie congénitale majeure la plus fréquente; elle touche environ 1 naissance vivante sur 100. Dans les pays à revenus élevés, la plupart de ces enfants atteignent désormais l'âge adulte, tandis que dans ceux à revenus faibles ou moyens, plus de 90 % des patients n'obtiennent pas les soins dont ils ont besoin. La cardiopathie rhumatismale est la maladie cardiovasculaire acquise la plus fréquente chez les enfants et les adolescents. Alors qu'elle est pratiquement éradiquée dans les pays à revenus élevés, plus de 30 à 40 millions de personnes en sont atteintes dans les pays à revenus faibles et moyens. À l'échelle mondiale, il existe de nombreux obstacles aux soins des CPC et, de plus en plus, des cardiopathies congénitales chez l'adulte (CCA). Notre article de synthèse présente un résumé de l'état actuel des soins des CPC et des CCA en abordant plusieurs aspects des systèmes de santé : ressources humaines, infrastructures, financement, services offerts, gestion des renseignements, technologies de l'information et gouvernance. Nous mettons également en lumière des lacunes dans les connaissances et des avenues d'amélioration de l'accès aux soins pour les personnes atteintes de CPC et de CCA partout dans le monde.

Implementation evaluation of a leadership development intervention for improved family experience in a private paediatric care hospital, Pakistan.

BACKGROUND: A study from a tertiary care center in Pakistan demonstrated that a leadership development intervention led to improved family experience of care outcomes. The objective of the current paper is to assess the implementation of this intervention and identify barriers and facilitators to inform sustainability and scalability. METHODS: A working group designed the intervention using a theory-of-change model to strengthen leadership development to achieve greater employee engagement. The interventions included: i) purpose and vision through purpose-driven leadership skills trainings; ii) engaging managers via on-the-job mentorship programme for managers, iii) employee voice i.e., facilitation of upward communication to hear the employees using Facebook group and subsequently inviting them to lead quality improvement (QI) projects; and iv) demonstrating integrity by streamlining actions taken based on routine patient experience data. Implementation outcomes included acceptability, adoption, fidelity across degree & quality of execution and facilitators & barriers to the implementation. Data analyzed included project documentation records and posts on the Facebook group. Analysis indicated acceptability and adoption of the intervention by the employees as178 applications for different QI projects were received. Leadership sessions were delivered to 455 (75%) of the employees and social media communication was effective to engage employees. However, mentorship package was not rolled out nor the streamlined processes for action on patient experience data achieved the desired fidelity. Only 6 QI projects were sustained for at least a year out of the 18 approved by the working group. Facilitators included leadership involvement, real-time recognition and feedback and value-creation through participation by national and international celebrities. Challenges identified were the short length of the intervention and incentives not being institutionalized. The authors conclude that leadership development through short training sessions and on-going communications facilitated by social media were the key processes that helped achieve the outcomes. However, a long-term strategy is needed for individual managerial behaviours to sustain.

Corrigendum: A Nationwide Virtual Research Education Program for Medical Students in Pakistan: Methodological Framework, Feasibility Testing, and Outcomes.

[This corrects the article DOI: 10.3389/fpubh.2021.812130.].

Performance of a Risk Analytic Tool (Index of Tissue Oxygen Delivery "IDO2") in Pediatric Cardiac Intensive Care Unit of a Developing Country.

Objective: To determine the performance of a commercially available risk analytic tool (IDO2) to estimate the risk for SVO2 < 40% in patients admitted in cardiac intensive care unit (CICU). Methods: Medical and T3 records of all patients (aged 1 day to 12 years, weight >2 kg) who received care in the CICU between October 1st, 2019 and October 1st, 2020, had SvO2 lab(s) drawn during CICU course and whose data was transmitted to T3, were included. The average IDO2 Index was computed in the 30-min period immediately prior to each SvO2 measurement and used as a predictor score for SvO2 < 40%. Results: A total of 69 CICU admissions from 65 patients, median age 9.3 months (interquartile range 20.8) were identified. Surgical and medical patients were 61 (88%) and 8 (12%) respectively; 4 (5.7%) patients had single ventricle physiology. Tetralogy of Fallot n = 23 (33.3%) and ventricular septal defects 17 (24.6%) were major cardiac diagnosis. Sixty-one (89.9%) of the admissions were successfully discharged from the hospital. Of the 187-total included SvO2 labs, 17 (9%) were <40%. The AUC of estimating SvO2 < 40% IDO2 was 0.87 [confidence interval (CI): 0.79-0.94]. Average IDO2 above 75 had the highest absolute risk (42.11, CI: 20.25-66.50) and highest RR (4.63, CI: 2.31-9.28, p-value < 0.0001) of SvO2 < 40%. Conclusion: IDO2 performed well in estimating low SvO2 (<40%) in pediatric patients presenting to a CICU in a low resource setting. Future work is needed to determine the effect of this risk analytic tool on clinical outcomes in such a setting.

Generating Evidence From Contextual Clinical Research in Low- to Middle Income Countries: A Roadmap Based on Theory of Change.

Along with inadequate access to high-quality care, competing health priorities, fragile health systems, and conflicts, there is an associated delay in evidence generation and research from LMICs. Lack of basic epidemiologic understanding of the disease burden in these regions poses a significant knowledge gap as solutions can only be developed and sustained if the scope of the problem is accurately defined. Congenital heart disease (CHD), for example, is the most common birth defect in children. The prevalence of CHD from 1990 to 2017 has progressively increased by 18.7% and more than 90% of children with CHD are born in Low and Middle-Income Countries (LMICs). If diagnosed and managed in a timely manner, as in high-income countries (HICs), most children lead a healthy life and achieve adulthood. However, children with CHD in LMICs have limited care available with subsequent impact on survival. The large disparity in global health research focus on this complex disease makes it a solid paradigm to shape the debate. Despite many challenges, an essential aspect of improving research in LMICs is the realization and ownership of the problem around paucity of local evidence by patients, health care providers, academic centers, and governments in these countries. We have created a theory of change model to address these challenges at a micro- (individual patient or physician or institutions delivering health care) and a macro- (government and health ministries) level, presenting suggested solutions for these complex problems. All stakeholders in the society, from government bodies, health ministries, and systems, to frontline healthcare workers and patients, need to be invested in addressing the local health problems and significantly increase data to define and improve the gaps in care in LMICs. Moreover, interventions can be designed for a more collaborative and effective HIC-LMIC and LMIC-LMIC partnership to increase resources, capacity building, and representation for long-term productivity.

Development of an on-job mentorship programme to improve nursing experience for enhanced patient experience of compassionate care.

BACKGROUND: Evidence suggests improvement in nursing staff satisfaction, competence, and retention after implementation of evidence-based mentorship programmes. When guided by a framework of compassion, mentoring as a caring action can not only build healthy, transformative relationships but a similar behavior is reciprocated to patients which subsequently can drive patient experience of care. However, examples of on-job mentorship programs for nurses in low- and middle-income countries (LMIC) are limited. OBJECTIVE: The objective of the study was to develop an on-job nursing mentorship programme using a compassionate framework aimed at improving nurses' experience and thus enhancing patient experience in a tertiary care hospital in Pakistan. METHODS: Designed as an intervention development study, it was completed between January 2018-December 2019. The programme was developed by a team composed of service and nursing leadership, director patient experience of care and a compassion specialist using a theory of change model. The package followed a series of steps, a) identification of a framework, b) creation of working group c) needs assessment and d) multiple meetings to frame the model followed by implementing the preconditions for roll-out of the programme with the frontline staff. RESULTS: The eventual outcome was improving the patient's experience of compassion while the intermediate outcome was to have nurses demonstrate compassionate care. The pre-conditions were identified as: recruitment of staff with appropriate skills for pediatric care, provision of compassionate experience to the frontline nurses by addressing their specific pain points, development of competent head nurses as supervisors and creation of a compassionate culture. To ensure the pre-conditions, various interventions were planned with some implemented through the course of the study while others are in the process of being rolled out. These involved, inclusion of pediatric compassion specific module during orientation of new hires, creation of space to talk about compassionate skills with staff, provision of trainings and mentorship to create competent head nurses, and creating a culture that promoted and recognized compassionate care values. CONCLUSION: The approach helped to delineate feasible pathways for an on-job compassionate mentorship programme enhancing routine supervisors' role as facilitators of compassionate care.

Implementation and Evaluation of a Social Media-Based Communication Strategy to Enhance Employee Engagement: Experiences From a Children's Hospital, Pakistan.

Social media can complement organizational communication strategy which is integral to employee engagement. However, successful case studies which can allow replication are limited. The objective of the study is to describe the design, implementation, and evaluation of a social media-based communication strategy in a tertiary care hospital in Pakistan. The leadership of the pediatric service line developed an intervention plan to engage the employees with the newly reframed vision to improve patient and family experience. An online communication platform-Facebook page-was created for all employees of the pediatric service line. The strategy to influence employees was based on Cialdini's six principles of persuasion. Implementation of the strategy between October 2017 and December 2019 was evaluated for reach, discussion themes, and outcomes using the framework by Murdough (2009). Quantitative indicators included total posts, mean comments, and reactions per post. Posts were qualitatively analyzed with an emergent approach for insights into the discussion. The analysis revealed a total of 9,085 posts, with mean reactions per post of 8.4, mean comments of 7.2, and active viewership by 90% members on average. In terms of post types, photos were the highest (4,779), while videos were the lowest (1,163). Qualitative analysis indicated 54% of the posts were of the theme "inspirational and thought provoking," while the greatest engagement was generated on the theme "challenges and solution." The authors conclude that the strategy was successfully implemented to maintain active membership, engage employees in meaningful conversations, and have them express intent to execute quality improvement projects.

Use of artificial intelligence on Electroencephalogram (EEG) waveforms to predict failure in early school grades in children from a rural cohort in Pakistan.

Universal primary education is critical for individual academic growth and overall adult productivity of nations. Estimates indicate that 25% of 59 million primary age out of school children drop out and early grade failure is one of the factors. An objective and feasible screening measure to identify at-risk children in the early grades can help to design appropriate interventions. The objective of this study was to use a Machine Learning algorithm to evaluate the power of Electroencephalogram (EEG) data collected at age 4 in predicting academic achievement at age 8 among rural children in Pakistan. Demographic and EEG data from 96 children of a cohort along with their academic achievement in grade 1-2 measured using an academic achievement test of Math and language at the age of 7-8 years was used to develop the machine learning algorithm. K- Nearest Neighbor (KNN) classifier was used on different model combinations of EEG, sociodemographic and home environment variables. KNN model was evaluated using 5 Stratified Folds based on the sensitivity and specificity. In the current dataset, 55% and 74% failed in the mathematics and language test respectively. On testing data across each fold, the mean sensitivity and specificity was calculated. Sensitivity was similar when EEG variables were combined with sociodemographic, and home environment (Math = 58.7%, Language = 66.3%) variables but specificity improved (Math = 43.4% to 50.6% and Language = 32% to 60%). The model requires further validation for EEG to be used as a screening measure with adequate sensitivity and specificity to identify children in their preschool age who may be at high risk of failure in early grades.

Pilot phase experience of the International Quality Improvement Collaborative catheterization registry.

OBJECTIVES: To describe the development of a quality collaborative for congenital cardiac catheterization centers in low and middle-income countries (LMICs) including pilot study data and a novel procedural efficacy measure. BACKGROUND: Absence of congenital cardiac catheterization registries in LMICs led to the development of the International Quality Improvement Collaborative Congenital Heart Disease Catheterization Registry (IQIC-CHDCR). As a foundation for this initiative, the IQIC is a collaboration of pediatric cardiac surgical programs from LMICs. Participation in IQIC has been associated with improved patient outcomes. METHODS: A web-based registry was designed through a collaborative process. A pilot study was conducted from October through December 2017 at seven existing IQIC sites. Demographic, hemodynamic, and adverse event data were obtained and a novel tool to assess procedural efficacy was applied to five specific procedures. Procedural efficacy was categorized using ideal, adequate, and inadequate. RESULTS: A total of 429 cases were entered. Twenty-five adverse events were reported. The five procedures for which procedural efficacy was measured represented 48% of cases (n = 208) and 71% had complete data for analysis (n = 146). Procedure efficacy was ideal most frequently in patent ductus arteriosus (95%) and atrial septal defect (90%) device closure, and inadequate most frequently in coarctation procedures (100%), and aortic and pulmonary valvuloplasties (50%). CONCLUSIONS: The IQIC-CHDCR has designed a feasible collaborative to capture catheterization data in LMICs. The novel tool for procedural efficacy will provide valuable means to identify areas for quality improvement. This pilot study and lessons learned culminated in the full launch of the IQIC-CHDCR.

A Nationwide Virtual Research Education Program for Medical Students in Pakistan: Methodological Framework, Feasibility Testing, and Outcomes.

Introduction: Equipping young medical trainees with fundamental research skills can be a promising strategy to address the need for professionals who can understand and responsibly communicate evolving scientific evidence during a pandemic. Despite an ardent interest to partake in research, most educational institutions in Pakistan and other low-middle income countries have not yet adopted a comprehensive strategy for research skills education. The authors aimed to design and assess the feasibility of implementing the first nation-wide virtual research workshop for medical students in Pakistan. Methods: The course "Beginners Guide to Research," designed as a nation-wide virtual research workshop series, was conducted for medical students across Pakistan in June 2020. Four interactive live workshops took place online on alternate days from June 22nd, 2020, to June 27th, 2020, each lasting 1-2 h. Outcomes included: (i) reach, (ii) efficacy as indexed by pre-post change in score pertaining to knowledge and application of research and (iii) self-rated perceptions about understanding of research on a Likert scale. Results: 3,862 participants enrolled from 41 cities and 123 institutions. Enrolled participants belonged to the following provinces: Sindh (n = 1,852, 48.0%), Punjab (n = 1,767, 45.8%), Khyber Pakhtunkhwa (n = 109, 2.8%), Azad Jammu and Kashmir (n = 84, 2.2%) Balochistan (n = 42, 1.1%). We also saw a few registrations from international students (n = 8, 0.2%). Mean (SD) age of enrolled medical students was 21.1 (2.1) years, 2,453 (63.5%) participants were female and 2,394 (62.0%) were from private-sector medical colleges. Two thousand ninety-three participants participants filled out all four pre-test and post-test forms. The total median knowledge score improved from 39.7 to 60.3% with the highest improvements in concepts of research bioethics and literature search (p < 0.001) with greater change for females compared to males (+20.6 vs. +16.2%, p < 0.001) and private institutions compared to public ones (+16.2 vs. +22.1%, p < 0.001). Conclusion: The overwhelming enrollment and significant improvement in learning outcomes (>50% of baseline) indicate feasibility of a medical student-led research course during a pandemic, highlighting its role in catering to the research needs in the LMICs.

A Family-Centered Intervention to Monitor Children's Development in a Pediatric Outpatient Setting: Design and Feasibility Testing.

The patient experience team at a private tertiary care hospital used the Theory of Change to design a family-centered developmental monitoring intervention, building on an ongoing initiative. The design entailed (i) a monitoring form: Survey of Well-Being of Young Children (SWYC) being an easy parent-report measure; (ii) family support intervention: the Care for Child Development module to enhance parent-child interactions; (iii) timing: utilizing wait time to also enhance families' experience; (iv) the service providers: psychology trainees as volunteers; and (v) reinforcement: by the pediatrician in the regular consultation health visit capitalizing on the established rapport with families. All families with children under 5 years 5 months 31 days of age in selected acute, complex, and developmental care clinics were eligible. Feedback from stakeholders indicated that the monitoring process was useful and imparted important information for parents and pediatricians, while the trainees felt the experience to be significant for their own learning. The authors conclude that the designed intervention model for a family-centric approach was acceptable and feasible. Key recommendations have been presented for further scale-up.

Reduction of cardiac iron overload by optimising iron chelation therapy in transfusion dependent thalassaemia using cardiac T2* MRI: a quality improvement project from Pakistan.

OBJECTIVES: Cardiac T2* MRI (T2*CMR), for accurate estimation of myocardial siderosis, was introduced as part of a QI collaborative to optimise chelation therapy in order to improve cardiac morbidity in transfusion dependent thalassaemia (TDT) patients. We report the impact of this QI initiative from two thalassaemia centres from this collaborative. DESIGN AND SETTING: A key driver based quality initiative was implemented to improve chelation in TDT patients registered at these two centres in Karachi, Pakistan. Protocol optimisation and compliance to treatment through training, communication and feedback were used as the drivers for QI intervention. Preintervention variables (demographics, chelation history, T2*CMR, echocardiography and holters) were collected from January 2015 to December 2016) and compared with variables in the post implementation phase (January to December 2019). A standardised adverse event severity for chelators and its management was devised for safe drug therapy as well as ensuring compliance to the regimen. Preintervention and postintervention variables were compared using non-parametric test. P value<0.05 was statistically significant. RESULTS: 100 patients with TDT, median age 17 (9-34) years, were included. An increase or stabilisation of T2*CMR was documented in 82% patients in the postintervention phase especially in patients with severe myocardial iron overload (5.5 vs 5.3 ms, p <0.01). Significantly fewer patients had abnormal echocardiographic findings (3.5% vs 26%, p <0.05) in the postintervention versus preintervention period. CONCLUSION: This QI initiative improved the chelation therapy leading to improved cardiac status in TDT patients at the participating centres.

Exploring the influence of socio-cultural factors and environmental resources on the health related quality of life of children and adolescents after congenital heart disease surgery: parental perspectives from a low middle income country.

BACKGROUND: Health related quality of life (HRQOL) is an important indicator of long-term well-being, influenced by environmental factors such as family, culture, societal norms and available resources. This study aimed to explore parental perspectives on the influence of socio-cultural factors and environmental resources on the HRQOL of children and adolescents after congenital heart disease (CHD) surgery. METHODS: Using a descriptive, qualitative design, semi-structured interviews of children/adolescents who had CHD surgery in this low-middle income country (LMIC) were collected between July to December 2017. There were 20 families enrolled, which included 18 parent dyads (mother and father) and two single mothers, making a total of 38 participants. Initial inductive analysis was further refined using the Social Ecological Model as an analytic lens. RESULTS: At the intrapersonal level, unrealistic expectations of surgery, residual CHD symptoms and difficulty maintaining educational progress were of great concern. There were low levels of health literacy and understanding about CHD among family and friends, however, strong kinship ties were an important resource at the interpersonal level. These families lived in poverty and mothers often carried the sole burden of care for their sick children. At the institutional level, there were unclear expectations of the child's needs at school, and parents had poor access to psychological, family-planning and genetic counselling, and poor access to CHD education resources. At a sociocultural level, religion and trust in God were important coping factors, however, CHD was a gendered experience with particular concerns around scarring and the marriageability of girls. Parents noted the deficit of antenatal and specialist CHD services and felt the consequence of a lack of a universal health care system at the public policy level. CONCLUSION: Socio-ecological factors have the potential to explain the issues and challenges that children living in LMIC experience with CHD after surgery. The study findings will help to inform future interventions to be implemented in countries like Pakistan.

Health-related quality of life in adult CHD surgical patients in a low middle-income country: a mixed-methods study.

BACKGROUND AND OBJECTIVES: This mixed-methods study aimed to assess health-related quality of life in young adults with CHD following surgery in a low middle-income country, Pakistan. Despite the knowledge that geographic, cultural and socio-economic factors may shape the way health and illness is experienced and managed and consequently determine a person's health-related quality of life, few health-related quality of life studies are conducted in low middle-income countries. This deficit is pronounced in CHD, so there is little guidance for patient care. METHODS: The study utilised concurrent, mixed methods. Adults with CHD (n = 59) completed health-related quality of life surveys (PedsQLTM 4.0 Generic Core Scale, PedsQLTM Cognitive Functioning Scale and PedsQLTM 3.0 Cardiac Module). Semi-structured interview data were collected from a nested sub-sample of 17 participants and analysed using qualitative content analysis, guided by the revised Wilson-Cleary model of health-related quality of life. RESULTS: The lowest health-related quality of life domain was emotional with the mean score (71.61 ± 20.6), followed by physical (78.81 ± 21.18) and heart problem (79.41 ± 18.05). There was no statistical difference in general or cardiac-specific health-related quality of life between mild, moderate or complex CHD. Qualitative findings suggested low health-related quality of life arose from a reduced capacity to contribute to family life including family income and gender. A sense of reduced marriageability and fear of dependency were important socio-cultural considerations. CONCLUSIONS: CHD surgical patients in this low-income country experience poor health-related quality of life, and contributing factors differ to those reported for high-income countries. Socio-cultural understandings should underpin assessment, management and care-partnering with young adults with CHD following surgical correction.

Establishment of a thalassaemia major quality improvement collaborative in Pakistan.

OBJECTIVES: The aim of this study was to establish multidisciplinary care for patients with transfusion-dependent thalassaemia (TDT) by creating a TDT quality improvement (QI) collaborative in a resource-constrained setting. This study presents our initial experience of creating this collaborative, the baseline characteristics of the participants, the proposed QI interventions and the outcome metrics of the collaborative. DESIGN AND SETTING: TDT QI collaborative is a database comprising patients with TDT from four centres in Karachi, Pakistan. Study variables included symptoms of cardiac or endocrine dysfunction, physical examination including anthropometry and Tanner staging, chelation therapy, results of echocardiography, T2* cardiac MRI (CMR) and serum ferritin. The main outcome of this collaborative was improvement in TDT-related morbidity and mortality. Interventions addressing the key drivers of outcome were designed and implemented. RESULTS: At the time of reporting, the total number of patients in this database was 295. Most patients reported cardiac symptoms corresponding to New York Heart Association class 2. Approximately half (52%, n=153) of the patients demonstrated severe myocardial iron overload (T2* <10 ms). Majority of the patients (58%, n=175) were not on adequate chelation therapy. There was no difference in echocardiographic measures of systolic and diastolic left ventricle among the different spectrums of iron overloaded myocardium. CONCLUSION: Using T2* CMR and endocrine testing, we have identified significant burden of iron siderosis in our patients with TDT. Lack of adequate iron load assessment and standardised management was observed. Interventions designed to target these key drivers of outcome are the unique part of this QI-based TDT registry.