scholarly journals What was the impact of the first wave of COVID-19 on the delivery of care to children and adults with congenital heart disease? A qualitative study using online forums

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e049006
Author(s):  
Jo Wray ◽  
Christina Pagel ◽  
Adrian H Chester ◽  
Fiona Kennedy ◽  
Sonya Crowe
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Qualitative Study ◽  
Service Delivery ◽  
Congenital Heart ◽  
Healthcare Providers ◽  
Discussion Forums ◽  
Related Factors ◽  
Delivery Of Care ◽  
The Impact

ObjectivesGlobally, healthcare systems have been stretched to the limit by the COVID-19 pandemic. Significant changes have had to be made to the way in which non-COVID-19-related care has been delivered. Our objective was to understand, from the perspective of patients with a chronic, life-long condition (congenital heart disease, CHD) and their parents/carers, the impact of COVID-19 on the delivery of care, how changes were communicated and whether healthcare providers should do anything differently in a subsequent wave of COVID-19 infections.Design and settingQualitative study involving a series of asynchronous discussion forums set up and moderated by three patient charities via their Facebook pages.ParticipantsPatients with CHD and parents/carers of patients with CHD.Main outcome measuresQualitative responses to questions posted on the discussion forums.ResultsThe forums ran over a 6-week period and involved 109 participants. Following thematic analysis, we identified three themes and 10 subthemes related to individual condition-related factors, patient-related factors and health professional/centre factors that may have influenced how patients and parents/carers experienced changes to service delivery as a result of COVID-19. Specifically, respondents reported high levels of disruption to the delivery of care, inconsistent advice and messaging and variable communication from health professionals, with examples of both excellent and very poor experiences of care reported. Uncertainty about follow-up and factors related to the complexity and stability of their condition contributed to anxiety and stress.ConclusionsThe importance of clear, consistent communication cannot be over-estimated. Our findings, while collected in relation to patients with CHD, are not necessarily specific to this population and we believe that they reflect the experiences of many thousands of people with life-long conditions in the UK. Recommendations related to communication, service delivery and support during the pandemic may improve patients’ experience of care and, potentially, their outcomes.

scholarly journals The impact of the first wave of COVID-19 on those with lifelong conditions: a case study of congenital heart disease

2021 ◽  
Author(s):  
Jo Wray ◽  
Christina Pagel ◽  
Adrian H. Chester ◽  
Fiona Kennedy ◽  
Sonya Crowe
Keyword(s):  
Health Care ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Service Delivery ◽  
Congenital Heart ◽  
Discussion Forums ◽  
Care Providers ◽  
Related Factors ◽  
Delivery Of Care ◽  
The Impact

AbstractObjectivesGlobally, health care systems have been stretched to the limit by the COVID-19 pandemic. Significant changes have had to be made to the way in which non-COVID-19 related care has been delivered. Our objective was to understand, from the perspective of patients with a chronic, life-long condition (congenital heart disease, CHD) and their parents/carers, the impact of COVID-19 on the delivery of care, how changes were communicated and whether health care providers should do anything differently in a subsequent wave of COVID-19 infections.Design and settingA series of asynchronous discussion forums set up and moderated by three patient charities via their Facebook pages.ParticipantsPatients with CHD and parents/carers of patients with CHD.Main outcome measuresQualitative responses to questions posted on the discussion forums.ResultsThe forums ran over a 6-week period and involved 111 participants. Following thematic analysis of the transcripts, we identified three themes and ten subthemes related to individual condition-related factors, patient-related factors and health professional/centre factors that may have influenced how patients and parents/carers experienced changes to service delivery as a result of COVID-19.ConclusionsOur findings, whilst collected in relation to patients with CHD, are not necessarily specific to this population and we believe reflect the experiences of many thousands of people with life-long conditions in the UK. Drawing on what participants told us in the discussion forums, we have developed recommendations related to communication, service delivery and support during the pandemic that would, we think, improve patients’ experience of care and, potentially, their outcomes. Although the data were collected specifically in relation to COVID-19, a number of these recommendations are relevant to the wider delivery of care to patients with chronic underlying health conditions and reflect principles of good communication and service delivery.

The impact of medical interventions on admission characteristics in children with congenital heart disease and cardiomyopathy

2020 ◽  
pp. 1-8
Author(s):  
Rohit S. Loomba ◽  
Jacqueline Rausa ◽  
Vincent Dorsey ◽  
Ronald A. Bronicki ◽  
Enrique G. Villarreal ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Length Of Stay ◽  
Congenital Heart ◽  
Unit Length ◽  
Channel Blockers ◽  
Regression Analyses ◽  
Converting Enzyme Inhibitors ◽  
Medical Interventions ◽  
The Impact

Abstract Introduction: Children with congenital heart disease and cardiomyopathy are a unique patient population. Different therapies continue to be introduced with large practice variability and questionable outcomes. The purpose of this study is to determine the impact of various medications on intensive care unit length of stay, total length of stay, billed charges, and mortality for admissions with congenital heart disease and cardiomyopathy. Materials and methods: We identified admissions of paediatric patients with cardiomyopathy using the Pediatric Health Information System database. The admissions were then separated into two groups: those with and without inpatient mortality. Univariate analyses were conducted between the groups and the significant variables were entered as independent variables into the regression analyses. Results: A total of 10,376 admissions were included these analyses. Of these, 904 (8.7%) experienced mortality. Comparing patients who experienced mortality with those who did not, there was increased rate of acute kidney injury with an odds ratio (OR) of 5.0 [95% confidence interval (CI) 4.3 to 5.8, p < 0.01], cardiac arrest with an OR 7.5 (95% CI 6.3 to 9.0, p < 0.01), and heart transplant with an OR 0.3 (95% CI 0.2 to 0.4, p < 0.01). The medical interventions with benefit for all endpoints after multivariate regression analyses in this cohort are methylprednisolone, captopril, enalapril, furosemide, and amlodipine. Conclusions: Diuretics, steroids, angiotensin-converting enzyme inhibitors, calcium channel blockers, and beta blockers all appear to offer beneficial effects in paediatric cardiomyopathy admission outcomes. Specific agents within each group have varying effects.

scholarly journals Parental experience of the neuromotor development of children with congenital heart disease: an exploratory qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Elena Mitteregger ◽  
Martina Wehrli ◽  
Manuela Theiler ◽  
Jana Logoteta ◽  
Irina Nast ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Qualitative Study ◽  
Motor Development ◽  
Congenital Heart ◽  
Healthcare Professionals ◽  
Qualitative Content Analysis ◽  
First Year ◽  
First Year Of Life ◽  
Neuromotor Development

Abstract Background Children with severe congenital heart disease (CHD) are a group of children at risk for neurodevelopmental impairments. Motor development is the first domain to show a delay during the first year of life and may significantly contribute to parental concerns, stress, and difficulties in early child-parent attachment. Thus, the aim of the study was to better understand the wishes and concerns of parents of children with CHD and explore their experience of their children’s neuromotor development in the first year of life. Methods In this qualitative study, fourteen families were recruited. Their children were aged 1–3 years and had undergone open heart surgery within the first 6 months of life. Semi-structured interviews were audio-recorded and transcribed. The data was explored within an expert group, and a qualitative content analysis was conducted using VERBI MAXQDA software 2020. The study was conducted in accordance with the COREQ checklist. Results Parents of children with CHD reported several burdens and needs. Parental burdens concerned the child’s motor development, their own physical and psychological strain, and difficulties in communication with healthcare professionals. The needs, parents reported included supporting their child’s motor development, a medical coordinator, and better communication between healthcare professionals and parents. During the first phase of their children’s illness, parents underwent a dynamic transitional phase and expressed the need to rely on themselves, to trust their children’s abilities, and to regain self-determination in order to strengthen their self-confidence. Conclusions It is essential to involve parents of children with CHD at an early stage of decision-making. Parents are experts in their children and appreciate medical information provided by healthcare professionals. Interprofessional teamwork, partnering with parents, and continuous support are crucial to providing the best possible care for children and their families. Family-centred early motor intervention for CHD children might counteract the effect of parental overprotection and improve children’s motor development and thus strengthen child-parent interaction. In future work, we aim to evaluate a family-centred early motor intervention for children with CHD developed on the basis of this qualitative study. Trial registration Not applicable.

scholarly journals Cyanotic congenital heart disease: Impact on growth and endocrine functions.

2021 ◽  
Vol 28 (10) ◽  
pp. 1477-1483
Author(s):  
Muhammad Sohail Arshad ◽  
Waqas Imran Khan ◽  
Arif Zulqarnain ◽  
Hafiz Muhammad Anwar-ul-Haq ◽  
Mudasser Adnan
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Pulmonary Stenosis ◽  
Tertiary Care ◽  
Cyanotic Congenital Heart Disease ◽  
P Value ◽  
Common Diagnosis ◽  
Significant Difference ◽  
The Impact

Objective: To find out the impact of Cyanotic Congenital Heart Disease (CCHD) on growth and endocrine functions at a tertiary care child healthcare facility of South Punjab. Study Design: Case Control study. Setting: Department of Pediatric Cardiology and Department of Pediatric Endocrinology, Institute of Child’s Health (ICH), Multan, Pakistan. Period: December 2018 to March 2020. Material & Methods: During the study period, a total of 53 cases of Echocardiography confirmed CCHD were registered. Along with 53 cases, 50 controls during the study period were also enrolled. Height, weight, body mass index (BMI) along with hormonal and biochemical laboratory investigations were done. Results: There was no significant difference between gender and age among cases and controls (p value>0.05). Most common diagnosis of CCHD among cases, 24 (45.3%) were Tetralogy of Fallot (TOF) followed by 9 (17.0%) transposition of the great arteries (TGA) with Ventricular Septal Defect (VSD) with Pulmonary Stenosis (PS). Mean weight of CCHD cases was significantly lower in comparison to controls (21.19+6.24 kg vs. 26.48+8.1 kg, p value=0.0003). Blood glucose was significantly lower among cases in comparison to controls (77.58+14.58 mg/dl vs. 87.25+11.82 mg/dl, p value=0.0004). No significant difference was found in between cases and controls in terms of various hormone levels studied (p value>0.05) except Insulin-like Growth Factor-1 (IGF-1) levels (p value<0.0001). Conclusion: Children with cyanotic congenital heart disease seem to have negative effects on nutrition and growth. Change in pituitary-adrenal axis is suspected while pituitary-thyroid axis seemed to be working fine among CCHD cases. Serum glucose and IGF-1 levels were significantly decreased among CCHD cases.

scholarly journals IMPACT Registry and National Pediatric Cardiology Quality Improvement Collaborative: Contributions to Quality in Congenital Heart Disease

2019 ◽  
Vol 10 (1) ◽  
pp. 72-80 ◽  
Author(s):  
Gerard R. Martin ◽  
Jeffrey B. Anderson ◽  
Robert N. Vincent
Keyword(s):  
Congenital Heart Disease ◽  
Quality Improvement ◽  
Heart Disease ◽  
Congenital Heart ◽  
Pediatric Cardiology ◽  
Device Closure ◽  
Stent Angioplasty ◽  
Quality Improvement Collaborative ◽  
The Common ◽  
The Impact

The IMproving Pediatric and Adult Congenital Treatments (IMPACT) Registry and the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) are two efforts initiated to improve outcomes in the congenital heart disease field. The IMPACT Registry is focused on evaluating the use, risks, adverse events (AEs), and outcomes associated with diagnostic and common interventional catheterization procedures in all children and adults with congenital heart disease. Utilizing a modular approach, the common procedures include diagnostic cardiac catheterization, atrial septal defect device closure, patent ductus arteriosus device closure, pulmonary valvuloplasty, aortic valvuloplasty, balloon and stent angioplasty of coarctation of the aorta, pulmonary artery balloon stent angioplasty, transcatheter pulmonary valve replacement, and electrophysiology procedures including radiofrequency ablation. To date, important observations on the common procedures have been made and a risk stratification methodology has been created to allow comparisons between centers in AEs and quality improvement activity. The registry is open to international participation. The NPC-QIC was developed to reduce mortality and improve the quality of life of infants with Hypoplastic Left Heart Syndrome (HLHS) during the interstage period between discharge from the Norwood operation and admission for the bidirectional Glenn procedure. Mortality in the interstage has been reduced by 44%. The IMPACT Registry and the NPC-QIC have demonstrated value to the congenital heart disease community. The IMPACT Registry, however, has not yet demonstrated an impact on patient outcomes. The NPC-QIC, which combines both a registry with a learning collaborative with specific aims, key drivers, and change strategies, has made more significant gains with reductions in variation, growth failures, and mortality.

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