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1.
BMC Health Serv Res ; 22(1): 944, 2022 Jul 23.
Artículo en Inglés | MEDLINE | ID: mdl-35870912

RESUMEN

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.


Asunto(s)
Liderazgo , Mejoramiento de la Calidad , Niño , Atención a la Salud , Hospitales Privados , Humanos , Pakistán
2.
Catheter Cardiovasc Interv ; 97(1): 127-134, 2021 01 01.
Artículo en Inglés | MEDLINE | ID: mdl-32294315

RESUMEN

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.


Asunto(s)
Cardiopatías Congénitas , Mejoramiento de la Calidad , Cateterismo Cardíaco/efectos adversos , Niño , Cardiopatías Congénitas/diagnóstico por imagen , Cardiopatías Congénitas/terapia , Humanos , Proyectos Piloto , Sistema de Registros , Resultado del Tratamiento
3.
BMC Nurs ; 20(1): 175, 2021 Sep 18.
Artículo en Inglés | MEDLINE | ID: mdl-34537031

RESUMEN

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.

4.
Cardiol Young ; 30(8): 1126-1137, 2020 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-32633708

RESUMEN

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.


Asunto(s)
Calidad de Vida , Humanos , Pakistán , Encuestas y Cuestionarios , Adulto Joven
5.
Catheter Cardiovasc Interv ; 94(7): 984-988, 2019 Dec 01.
Artículo en Inglés | MEDLINE | ID: mdl-31424620

RESUMEN

A 72-year-old man with prior history of coronary artery bypass grafting and sternal wire infection presented with non-ST-segment elevation myocardial infarction. His coronary angiogram revealed stenosis of the distal left main coronary artery (LMCA) and a pseudoaneurysm of saphenous venous graft (SVG) to right posterior descending artery. Patient developed ventricular fibrillation during admission, and postcardiopulmonary resuscitation, a pulsatile chest mass was observed which was diagnosed with computed tomography as a chest wall collection resulting from rupture of the pseudo-aneurysm. He underwent percutaneous coronary intervention of the LMCA with drug-eluting stents followed by successful coil embolization of the SVG pseudoaneurysm. Patient had an uneventful recovery postprocedure.


Asunto(s)
Aneurisma Falso/etiología , Aneurisma Roto/etiología , Puente de Arteria Coronaria/efectos adversos , Estenosis Coronaria/complicaciones , Hematoma/etiología , Infarto del Miocardio sin Elevación del ST/complicaciones , Vena Safena/trasplante , Anciano , Aneurisma Falso/diagnóstico por imagen , Aneurisma Falso/terapia , Aneurisma Roto/diagnóstico por imagen , Aneurisma Roto/terapia , Estenosis Coronaria/diagnóstico por imagen , Estenosis Coronaria/terapia , Stents Liberadores de Fármacos , Embolización Terapéutica , Hematoma/diagnóstico por imagen , Humanos , Masculino , Infarto del Miocardio sin Elevación del ST/diagnóstico por imagen , Infarto del Miocardio sin Elevación del ST/terapia , Intervención Coronaria Percutánea/instrumentación , Vena Safena/diagnóstico por imagen , Resultado del Tratamiento
6.
Cardiol Young ; 29(4): 467-474, 2019 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-30940265

RESUMEN

OBJECTIVE: The objective of this study was to assess differences in myocardial systolic and diastolic function and vascular function in children 2-5 years of age born to diabetic as compared to non-diabetic mothers. METHODS: This study was a retrospective cohort conducted in 2016 at The Aga Khan University Hospital, Karachi, Pakistan. It included children between 2 and 5 years of age born to mothers with and without exposure to diabetes in utero (n = 68 in each group) and who were appropriate for gestational age. Myocardial morphology and function using echocardiogram and carotid intima media thickness (cIMT) and pulse wave velocity was performed to evaluate cardiac function as well as macrovascular remodelling in these children. Multiple linear regression was used to compare the groups. RESULTS: There was no significant difference in cardiac morphology, myocardial systolic and diastolic function, and macrovascular assessment between the exposed and unexposed groups of AGA children. Subgroup analysis demonstrated a significantly decreased mitral E/A ratio in children whose mothers were on medications as compared to those on dietary control (median [IQR] = 1.7 [1.6-1.9] and 1.56 [1.4-1.7], respectively, p = 0.02), and a higher cIMT in children whose mothers were on medication as compared to controls (0.48 [0.44-0.52] and 0.46 [0.44-0.50], respectively, p = 0.03). CONCLUSION: In utero exposure to uncontrolled maternal diabetes has an effect on the cardiovascular structure and function in children aged 2-5 years. However, future work requires long-term follow-up from fetal to adult life to assess these changes over the life course.


Asunto(s)
Enfermedades Cardiovasculares/diagnóstico por imagen , Enfermedades Cardiovasculares/etiología , Hiperglucemia/complicaciones , Embarazo en Diabéticas , Efectos Tardíos de la Exposición Prenatal , Remodelación Vascular , Adulto , Sistema Cardiovascular/patología , Grosor Intima-Media Carotídeo , Preescolar , Diástole , Ecocardiografía , Femenino , Humanos , Modelos Lineales , Masculino , Madres , Pakistán , Embarazo , Análisis de la Onda del Pulso , Estudios Retrospectivos , Medición de Riesgo , Factores de Riesgo , Sístole , Adulto Joven
7.
Am Heart J ; 188: 1-10, 2017 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-28577664

RESUMEN

BACKGROUND: Exercise stress echocardiography (ESE) can unmask ventricular dysfunction in asymptomatic patients with congenital heart disease (CHD), but its acquisition and interpretation is often challenging, and the method has not been validated in CHD. This study aimed to evaluate the feasibility of ESE using Doppler imaging and to assess myocardial response to exercise in patients with biventricular (BiV) and univentricular (UniV) circulation after CHD repair. METHODS: In this single-center prospective study, we recruited 55 participants (17 females), median age 14 years (8-22 years). Our analysis categorized participants in these three groups: with structurally normal hearts as controls (n=21), with BiV circulation (n=20) and with UniV circulation (n=14). We acquired ESE images of the systemic ventricle including pulsed-wave flow and spectral tissue Doppler imaging (TDI) of lateral free wall before and immediately after standard, symptom-limited exercise tests on an electronically braked cycle ergometer. RESULTS: During ESE we obtained inflow E-wave and TDI systolic (S') and early diastolic (E') velocities in 93% to 100% of participants at rest and in 90% to 100% of participants post exercise. Feasibility to obtain Doppler imaging parameter was the same across study groups. The myocardial response to exercise was increase in heart rate (HR), S' and inflow E-wave velocity in all participants. Patients with BiV circulation had preserved ventricular function at rest. While patients with UniV circulation had low S', E', and E-wave velocities at rest in comparison to controls and to BiV group (all P<.001), both patients with BiV and UniV circulation showed significant increases in HR, S' velocity and inflow E-wave velocity post exercise, with magnitudes of these increases higher in controls than in the BiV and UniV group. The S' and E' velocities were strongly associated with lower percent predicted peak oxygen consumption VO2 (rs=0.614 and rs=0.64, respectively, both P<.001). CONCLUSION: ESE with Doppler imaging is a practical noninvasive diagnostic method and sufficiently robust for the assessment of morphologic LV/systemic ventricles under exercise in patients after biventricular and univentricular CHD repair. Although patients with BiV and UniV circulation had both preserved myocardial response to exercise, the magnitude of this response was the lowest in patients with UniV circulation.


Asunto(s)
Procedimientos Quirúrgicos Cardíacos , Ecocardiografía Doppler/métodos , Ecocardiografía de Estrés/métodos , Cardiopatías Congénitas/diagnóstico , Ventrículos Cardíacos/fisiopatología , Contracción Miocárdica/fisiología , Función Ventricular Izquierda/fisiología , Adolescente , Niño , Estudios Transversales , Ejercicio Físico/fisiología , Estudios de Factibilidad , Femenino , Estudios de Seguimiento , Cardiopatías Congénitas/fisiopatología , Cardiopatías Congénitas/cirugía , Ventrículos Cardíacos/diagnóstico por imagen , Humanos , Masculino , Consumo de Oxígeno , Estudios Prospectivos , Adulto Joven
8.
Am Heart J ; 179: 87-98, 2016 09.
Artículo en Inglés | MEDLINE | ID: mdl-27595683

RESUMEN

BACKGROUND: Relief of postoperative right ventricular outflow tract (RVOT) obstruction with transcatheter pulmonary valve replacement (TPVR) results in functional improvement in the short term which we investigated at baseline (BL), early follow-up (FU), and midterm FU after TPVR. METHODS: Echocardiography and cardiopulmonary exercise testing were performed at BL and at early (median 6 months) and midterm FU (median 2.5years) after TPVR. RESULTS: Patients with RVOT obstruction (n=22, median age 17years) were studied. The max RVOT Doppler gradient fell from BL to early FU (60±24 to 26±8mm Hg, P<.001). Left ventricular (LV) end-diastolic and stroke volume increased at early FU (both P<.001) without further change, whereas LV ejection fraction improved throughout FU (P<.001). LV end-systolic and diastolic eccentricity (leftward septal displacement) improved early (both P≤.003), and end-diastolic eccentricity improved further at midterm FU (P=.02). Furthermore, whereas mitral inflow A wave velocity increased (P=.003), the LV A' velocity declined early (P=.007) without further change at midterm. RV systolic and early diastolic function was impaired at BL. Whereas RV strain improved partially at early and midterm FU (P≤.02), RV E' velocity did not improve throughout FU. Mildly impaired LV strain at BL fully recovered by midterm FU (P≤.002). Peak oxygen uptake improved at early and midterm FU (all P≤.003). CONCLUSIONS: Patients with RVOT obstruction had biventricular systolic and diastolic dysfunction at BL. Relieving RVOT obstruction with TPVR reduced adverse ventricular and compensatory atrioventricular interaction, resulting in progressive biventricular functional improvement and remodeling at early and midterm FU.


Asunto(s)
Cateterismo Cardíaco , Implantación de Prótesis de Válvulas Cardíacas , Válvula Pulmonar/cirugía , Obstrucción del Flujo Ventricular Externo/cirugía , Adolescente , Adulto , Niño , Diástole , Ecocardiografía Doppler en Color , Prueba de Esfuerzo , Femenino , Humanos , Imagen por Resonancia Magnética , Masculino , Válvula Pulmonar/diagnóstico por imagen , Válvula Pulmonar/fisiopatología , Volumen Sistólico , Sístole , Resultado del Tratamiento , Disfunción Ventricular/diagnóstico por imagen , Disfunción Ventricular/fisiopatología , Obstrucción del Flujo Ventricular Externo/diagnóstico por imagen , Obstrucción del Flujo Ventricular Externo/fisiopatología , Adulto Joven
9.
J Pediatr Hematol Oncol ; 38(5): 378-83, 2016 07.
Artículo en Inglés | MEDLINE | ID: mdl-27164519

RESUMEN

OBJECTIVE: To describe the initial experience and demographics of T2* cardiac magnetic resonance-based myocardial-iron quantification of transfusion-dependent thalassemia-major (TM) patients from Pakistan and the correlation with serum ferritin. METHODS: Eligible TM patients presenting between April 2014 and April 2015 to Aga Khan University Hospital, Pakistan, for T2*CMR were included. The severity of myocardial-iron deposition was defined as follows: normal T2*>20 ms, mild-moderate T2*10 to 20 ms, and severe T2*<10 ms. Cardiac symptoms were classified using the NYHA functional classification. Echocardiographic systolic and diastolic functions were performed. Continuous variables were presented as the median (minimum-maximum value). Correlation was measured using the Spearman rank correlation. Multivariate logistic regression was used to determine factors associated with the NYHA functional class. RESULTS: A total of 83 patients (49 male and 34 female) with TM, age 19 (5 to 45) years at presentation for T2*CMR, were reviewed. At presentation, 70% of the patients were classified as NYHA class II or worse. T2*<20 ms was observed in 62.6% of the patients, with 47% showing severe iron deposition (T2<10 ms). No correlation of T2*<20 ms (r=-0.157, P=0.302) and T2*<10 ms (r=-0.128, P=0.464) was observed with serum ferritin. On multivariate analysis, lower T2* values correlated with a worsening NYHA functional class. CONCLUSIONS: There is a high prevalence of severe myocardial iron load in Pakistani TM patients. Serum ferritin did not correlate with T2* values. Lower T2* was the only clinical factor associated with the NYHA functional class.


Asunto(s)
Enfermedades Endémicas , Siderosis/etiología , Talasemia beta/complicaciones , Adolescente , Adulto , Cardiomiopatías/diagnóstico por imagen , Cardiomiopatías/etiología , Niño , Preescolar , Ecocardiografía , Femenino , Ferritinas/sangre , Humanos , Hierro/metabolismo , Sobrecarga de Hierro , Imagen por Resonancia Magnética , Masculino , Persona de Mediana Edad , Pakistán , Siderosis/diagnóstico por imagen , Adulto Joven , Talasemia beta/epidemiología
10.
Catheter Cardiovasc Interv ; 82(4): 569-73, 2013 Oct 01.
Artículo en Inglés | MEDLINE | ID: mdl-23483660

RESUMEN

A relatively rare occurrence, the incidence of ventricular septal defect (VSD) complicating penetrating cardiac trauma has been reported at 4.5%. Closing such defects may be challenging especially in an unstable patient where cardiopulmonary bypass may exponentially increase the surgical risk. In such patients, catheter-based device closure is a reliable and effective alternative. We describe case of a 30 year old man who presented with a stab wound to his anterior mediastinum. His injuries involved laceration to right and left ventricles and a VSD. His lacerations were repaired on a beating heart and the VSD was not addressed due to patient hemodynamic instability. The VSD was semi-electively closed using a 24 mm Amplatzer™ device as the patient demonstrated significant left to right shunt. Post-device closure, the patient developed hemolysis attributed to an intra- device residual leak. The hemolysis resolved without any complications by conservative medical management. At latest follow-up the patient is in NYHA functional class I-II.


Asunto(s)
Cateterismo Cardíaco/instrumentación , Lesiones Cardíacas/terapia , Dispositivo Oclusor Septal , Tabique Interventricular/lesiones , Heridas Punzantes/terapia , Adulto , Cateterismo Cardíaco/efectos adversos , Ecocardiografía Doppler en Color , Ecocardiografía Tridimensional , Lesiones Cardíacas/diagnóstico , Lesiones Cardíacas/fisiopatología , Hemodinámica , Hemólisis , Humanos , Masculino , Diseño de Prótesis , Resultado del Tratamiento , Tabique Interventricular/fisiopatología , Heridas Punzantes/diagnóstico , Heridas Punzantes/fisiopatología
11.
Arch Dis Child ; 108(4): 258-263, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36288921

RESUMEN

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.


Asunto(s)
Retardo del Crecimiento Fetal , Recién Nacido Pequeño para la Edad Gestacional , Embarazo , Femenino , Niño , Humanos , Recién Nacido , Preescolar , Edad Gestacional , Estudios de Cohortes , Estudios Prospectivos , Pakistán/epidemiología , Proyectos Piloto
12.
BMJ Paediatr Open ; 7(1)2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37918940

RESUMEN

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.


Asunto(s)
Cardiopatías Congénitas , Tamizaje Neonatal , Recién Nacido , Lactante , Embarazo , Femenino , Humanos , Niño , Estados Unidos , Estudios Prospectivos , Tamizaje Neonatal/métodos , Cardiopatías Congénitas/diagnóstico , Oximetría/métodos , Aprendizaje Automático
13.
CJC Pediatr Congenit Heart Dis ; 2(6Part B): 453-463, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-38205434

RESUMEN

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.

14.
PLoS One ; 18(8): e0290867, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37651371

RESUMEN

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.


Asunto(s)
Investigación Biomédica , Estudiantes de Medicina , Humanos , Benchmarking , Impulso (Psicología) , Hormona Liberadora de Hormona del Crecimiento
15.
BMJ Glob Health ; 8(5)2023 05.
Artículo en Inglés | MEDLINE | ID: mdl-37142298

RESUMEN

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.


Asunto(s)
Países en Desarrollo , Cardiopatías Congénitas , Humanos , Niño , Salud Pública , Cardiopatías Congénitas/cirugía , Sistema de Registros , Continuidad de la Atención al Paciente
16.
Front Pediatr ; 10: 846074, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35722489

RESUMEN

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.

18.
Pediatr Cardiol ; 32(6): 759-65, 2011 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-21455751

RESUMEN

The morphology of the large intrapulmonary arteries (PAs) in pulmonary hypertension (PH) has received limited attention. Dilation, pruning, abrupt tapering, and tortuosity of PAs occur, but whether different patients have distinct PA phenotypes is unknown. Pulmonary arteriograms from 41 pediatric patients with PH were blindly reviewed by four experts who assigned each angiogram one of three designations: straight (S), tortuous (T), or ambiguous (A). Hemodynamic variables and outcomes were compared to the phenotypes. Thirty patients were either T (19) or S (11); 11 were A. The phenotypes were not associated with age. Tortuous patients had higher PA pressure and resistance than the S group and less likely to react to inhaled nitric oxide than S patients (p < 0.05). Clinical outcomes were similar for the three groups. Thus, in PH patients two subtypes of PA morphology can often be discerned, a reflection of variability in PA tortuosity. These morphological subtypes have differing hemodynamic characteristics. The mechanism(s) underlying these differences is unknown, but neither hydrodynamic factors nor duration of PH are fully explanatory. Because PA morphology might reveal information regarding the biology of pathological remodeling, it might prove enlightening to assess the large PA phenotype in future studies of PH.


Asunto(s)
Angiografía/métodos , Hipertensión Pulmonar/diagnóstico por imagen , Arteria Pulmonar/diagnóstico por imagen , Presión Esfenoidal Pulmonar , Adolescente , Niño , Preescolar , Hipertensión Pulmonar Primaria Familiar , Femenino , Estudios de Seguimiento , Humanos , Hipertensión Pulmonar/fisiopatología , Lactante , Masculino , Pronóstico , Arteria Pulmonar/fisiopatología , Estudios Retrospectivos , Índice de Severidad de la Enfermedad , Adulto Joven
19.
Front Health Serv ; 1: 739655, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-36926480

RESUMEN

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.

20.
Front Pediatr ; 9: 764239, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34956976

RESUMEN

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.

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