One-year outcomes and intervention waiting time of patients admitted with congenital heart disease at Kenyatta National Hospital, Kenya

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CHD is found in 8–15 babies per 1,000 live births. Delayed diagnosis and long waiting time to intervention may lead to poor outcome. The objective was to establish the one-year post diagnosis outcome, the waiting time from diagnosis to intervention and factors associated with one-year post diagnosis mortality. Methods This was a retrospective review of patient records for patient with CHD admitted to Kenyatta National Hospital (KNH) from 1st January 2016 to December 2021. We collected data and entered it into REDCap and then analyzed using R. Results We reviewed 1,703 patient records for the study. At diagnosis, a majority of the patients were children aged less than one year (53.6%) with 56.6% males. At one-year post-diagnosis, the mortality rate was 36.1%. Only 69 (37%) received recommended surgical intervention within one-year with a median time 59 (10–208) days. While 44 (67%) had undergone recommended catheterization within one year with median of 95 (13.5-188.8) days. Those whose intervention was outside the country took 349 (10.8-703.8) days to get intervention. Older children and those with Tetralogy of Fallot (TOF) were more likely to die. Conclusion Few children with CHD receive the recommended interventions. There is a long waiting time from diagnosis to intervention. Mortality for patients with CHD remains high. There are many gaps in the documentation for patients with CHD at KNH. There is need to shorten time taken from diagnosis to intervention for patients with CHD and to improve documentation for patients with CHD at KNH. Kenya Congenital Heart disease diagnosis interventions outcomes Figures Figure 1 Introduction Congenital heart disease (CHD) is the commonest birth defect worldwide, affecting millions of newborns every year[ 1 – 8 ]. CHD is a clinically significant structural heart disease present at birth with inclusion of few other lesions that manifest later in life but with the risk factors being present at birth. Noteworthy, although evidence indicates that Africa has the lowest regional prevalence of CHD[ 3 ], the prevalence of CHD is estimated at about 8–15 per 1,000 live births[ 1 , 8 ]. Congenital heart diseases are broad and the widely used terms are as per the International Paediatric and Congenital Cardiac Code (IPCCC) and the International Classification of Diseases (ICD-11)[ 9 ]. Some studies in Africa have established that among children admitted in paediatric wards with heart disease, congenital heart diseases are the most common with Ventricular Septal Defect (VSD) being the commonest CHD followed by Patent Ductus Arteriosus (PDA) and Tetralogy of Fallot (TOF) [ 1 , 3 , 10 , 11 ]. Such studies in Kenya did not collect data from all units where cardiac patients are admitted and therefore may not be a true reflection of the hospital status. The common CHDs in children are much the same ones that present in adulthood such as atrial septal defect (ASD), Tetralogy of Fallot (TOF), ventricular septal defect (VSD) and Patent Ductus Arteriosus (PDA). However, in adulthood, they may present with complications such as pulmonary hypertension, Eisenmenger, heart failure, arrhythmias, infective endocarditis and stroke, and have been shown to worsen with age[ 12 – 15 ]. Congenital heart diseases are common anomalies that increase morbidity and mortality among children and adolescents[ 1 , 8 , 16 – 18 ], and whose outcomes can vary significantly depending on the region in which the patients live. In more developed countries, better outcomes are typically seen, whereas in countries like Africa and those with less development, the outcomes are often poor or not well documented[ 19 – 23 ]. Delay in intervention may portend worse outcomes. In addition, the number of cases diagnosed with CHD in Kenya that need surgical interventions is probably more than the number of operations carried out[ 21 ]. Delayed diagnosis and long waiting time to intervention may lead to deaths before intervention is undertaken or poor outcome when the intervention is finally undertaken[ 13 , 23 – 26 ]. Globally, access to healthcare and diagnostic technologies are known to substantially impact the reported birth prevalence of CHD as early diagnosis and prompt referral to an intervention center before complications arise may improve outcomes[ 19 , 22 ]. In Africa, obtaining medical care is challenging, and this is especially true for infants born with CHD, as many of them probably go undiagnosed. In the Sub-Saharan Africa, Kenya included, inadequate healthcare workforce and medical facilities are prevalent, leading to delayed diagnosis and limited treatment options [ 19 , 26 ]. Thus, some patients end up being diagnosed late or are referred out of the country. Some may not afford the cost of care for such interventions. Additionally, critical forms of CHD rarely receive the medical interventions that can significantly improve or even save their lives[ 21 , 27 , 28 ]. Prenatal screening and newborn screening programs would improve outcomes by providing an opportunity for early referral to the appropriate place for intervention, although in Africa these are also often not well developed, with limited access to echocardiography and limited treatment options[ 16 , 26 – 28 ]. These factors may lead to poor outcomes. Whereas in areas where resources, health workforce and appropriate facilities are available, there is early diagnosis, prompt intervention and possibly good outcomes. There are few centers that have Cardiology services for CHD in Kenya. As of 2022, there were three public facilities with diagnostic and interventional Cardiology services for CHDs in Kenya – Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenyatta National Hospital in Nairobi and Coast General Teaching and Referral Hospital in Mombasa to which most patients from other public hospitals with suspected or confirmed CHD are referred for intervention and follow up. Despite the significant attempts towards building an evidence base for CHD in Africa[ 2 , 4 , 5 , 11 , 16 , 18 , 26 , 29 – 32 ], there still remains a limitation of accurate data on CHD burden, waiting time before intervention, and post-diagnostic outcomes in the Kenya and at large the Sub-Saharan Africa region. In addition, the number of patients with congenital cardiac disease on follow up at KNH and their outcome is unknown. This study therefore sought to generate the information that may also be used for other research around CHD in KNH as well as for advocacy and planning purposes in the region where interventions are thought to be low or with poor outcomes [ 13 , 17 , 21 , 23 – 26 ]. Methods Aim The aims were to establish one-year post diagnosis outcome, the waiting time from diagnosis to intervention and factors associated with one-year post diagnosis mortality. Study design This was a cross-sectional study where records of all patients who had been admitted at KNH for the period 2016 to 2021 with a diagnosis of CHD and those with at least one year follow up in clinic were retrospectively reviewed. The one year follow up data formed the time point for the cross-sectional study to calculate point prevalence. The patient records were reviewed for one-year post-diagnosis outcome and the waiting time from diagnosis to intervention. Study area and population Kenyatta National Hospital (KNH) is one of the two national referral public hospitals in Kenya for patients with congenital heart disease. It is based in Nairobi, the capital city of Kenya. It has personnel and facilities for diagnosis, medical management, catherization and surgery for some CHD. The KNH medical records department has clinical diagnosis for patients who have ever been admitted. Study population The study population included all patients diagnosed with a congenital heart disease from January 2016 to December 2021 and who had ever been admitted at KNH and with at least one year follow up in clinic. Records of patients listed as having heart disease but without supporting evidence from the investigation reports in their medical records file, those with patients with iatrogenic heart diseases, heart defects caused by trauma and preterm neonates diagnosed to have a patent foramen ovale and/or patent ductus arteriosus were excluded from the study as these may not be considered as being truly CHDs. Variables : The data collected included: age, gender, residence/home county, diagnosis and classification of the diagnosis (as per International Classification of Diseases (ICD-10)), intervention done, place where intervention was done, team that did the intervention, time from diagnosis to intervention and one-year post diagnosis status (outcome). Outcome was defined as being alive or dead. Waiting time was calculated retrospectively as the duration from when diagnosis and recommendation was made to the time the intervention took place. This data was retrieved from the medical records and entered into the study data collection form. Data collection procedures Data was collected in 2022 after ethical approval. The medical records of all patients diagnosed with CHD were retrieved from the KNH health information office and their medical records reviewed for relevance and the data required abstracted. Follow-up telephone calls for patients whose medical records did not have the required information were called to fill up gaps missing data [ 33 ]. The missing data was obtained from the patient/parent/guardian after explanation of the reasons for the call and seeking verbal informed consent from them on phone. The data required from each patient was entered into a data abstraction tool on the Research Electronic Data Capture (REDCap). Any incomplete fields or false data entry were flagged up by REDCap and actioned upon as appropriate. Most of the cardiac clinical diagnosis were recorded as what the Paediatric cardiologists diagnosed based on transthoracic echocardiogram findings. For those who had undergone extra investigations and surgeries, the final diagnosis after all the investigations and surgery is what was documented as the diagnosis. Data analysis The data was analyzed using the R statistical package, version 4.3.1. To establish the one-year post diagnosis mortality of patients who had been admitted in KNH from January 2016 to December 2021 for Congenital Heart Disease, the total number of patients who had died by one-year post diagnosis was the numerator while the total number of patients diagnosed with CHD over the study period was the denominator. The missing data was reported as missing or unknown as a fraction of the category under consideration. Results Table 1 Study patient characteristics Variable (N = 1703, %) Age group in years at first diagnosis ≤ 1 month 20(1.2) > 1month to 5–12 years 56(3.3) > 12–17 years 20(1.2) 18–30 years 14(0.8) > 30–40 years 21(1.2) > 40 years 9(0.5) Not documented 412(24.2) Gender Female 739(43.4) Male 694(40.8) Not documented 270(15.8) Ever been pregnant (n = 739, female adults) 6(0.8) Facility of first referral (source) KNH wards/units 374(22.0) Referred from a private hospital/doctor 198(11.6) Referred from another public hospital 570(33.5) Self-referral 25(1.4) Not documented 536(31.5) Socio-demographics, diagnosis and recommended treatment for CHD patients As shown in Table 1 , a total of 1703 patients were enrolled in the study. The majority (53.6%) of these patients were under one year old at diagnosis. There were more females (43.4%) than males (40.8%), and out of these females, only 6 had ever been pregnant. Among these patients at first diagnosis, 33.5% were referred from other public hospitals, 22.0% were from within KNH, while 11.6% were from private hospitals as indicated in Table 1 . More than eighty percent of these cases of congenital heart disease (CHD) were diagnosed at Kenyatta National Hospital (KNH). As shown in Table 2 , upon CHD diagnosis, medical management was initially recommended for 43.2% of these patients, while surgery was recommended for 14.1%, with the majority (77.5%) of surgeries being recommended in Kenya. Catheterization and conservative management were recommended for 3.8% and 3.3% of the patients, respectively. The majority (62.9%) of patients recommended for surgery did not undergo the surgery, or this information was unavailable. The majority (97.1%) of surgeries were performed at KNH, with an average waiting time from diagnosis to surgery being 59 days (IQR: 10–208 days). Of the patients recommended for catheterization, 67.7% underwent the procedure, primarily at KNH, with an average waiting time to catheterization of 95 days (IQR: 13.5-188.8 days). Among patients referred for surgery outside the county, only 13% underwent the surgery. Among the 7 patients who sought treatment out of the country, the waiting time to treatment was 349 days (IQR: 10.8-703.8 days), as shown in Table 2 Table 2 Diagnosis and recommended treatment among CHD patients Variable (N = 1703, %) Facility of CHD diagnosis Kenyatta National Hospital 1511(88.7) Other/Unknown 192(11.3) Recommended intervention at diagnosis Medical management 735(43.2) Inoperable/Conservative management 57(3.3) Surgery in Kenya 186(10.9) Catheterization in Kenya 65(3.8) Referral out of the country for surgery 54(3.2) Not documented 606(35.6) Recommended Surgical Intervention in Kenya taken place (n = 186) Yes 69(37.1) No/Unknown 117(62.9) Place of surgical intervention for those advised on local surgery (n = 69) Kenyatta National Hospital 67(97.1) Mater Hospital - Kenya 1(1.4) India-Manipal 1(1.4) Referred out of the country for surgery (n = 54) Yes 7(13.0) No 10(18.5) Unknown 37(68.5) Time to intervention (median, (IQR)) (days) 59 (10–208) Recommended Catheterization in Kenya(n = 65) Yes 44(67.7) No 10(15.4) Unknown 11(16.9) Place of Catheterization in Kenya(n = 44) Kenyatta National Hospital 43(97.7) Mater Hospital 1(2.3) Time to Catheterization (median, (IQR)) (days) 95 (13.5-188.8) Country of intervention (For those who referred out of the country) (n = 7) India 5(71.4) Israel 1(14.3) Spain 1(14.3) Time to intervention for those referred abroad (median, (IQR)) (days) 349 (10.8-703.8) Outcome at one year and waiting time Figure 1 shows the mortality at 1 year whereby of the 1703 patients admitted with CHD, 56.4% (n = 961) were alive, 36.1% (n = 615) died, and 7.5% (n = 127) with unknown status. Figure 1 : One-year outcomes of patients admitted with congenital heart disease at Kenyatta National Hospital, Kenya Older children and those with Tetralogy of Fallot (TOF) were more likely to die than those without with adjusted odds for age of 1.99 (95%CI 1.21–3.34). Discussion From this study, a majority of the patients (53.6%) were children aged less than one year. As manifestations of CHD are often detected during the perinatal period and early infancy through routine screenings, clinical evaluations, and diagnostic imaging techniques, a number of studies have recorded younger patients presenting with CHDs [ 34 – 36 ]. There may be fewer older patients possibly due to early deaths for children with CHD and thus fewer survive into older age groups hence fewer older patients presenting for admission into hospital[ 23 , 37 ]. Most of the patients were referred by other health workers for cardiac evaluation (67%) as would be expected for a referral facility. The patients came from across the country although the counties near Nairobi had a higher concentration. Distance to a health facility has been a known factor in seeking care services[ 36 , 38 ]. Only 37% had received the recommended surgical intervention within an year, with median waiting time to surgery of 59 (10–208) days. This is comparable to a study by Azeez where 44% had received intervention for cyanotic CHD in children under 18 years[ 35 ]. In this study 67% had undergone the recommended catheterization within one year with time to catheterization being median of 95 (13.5-188.8) days. In this study, the number of cases diagnosed with CHD and advised on interventions was more than the number of interventions carried out as has been documented previously[ 21 , 36 ]. At diagnosis 54 (2.2%) of the patients were referred abroad for further intervention, with a median time of 349 (10.8-703.8) days from diagnosis to intervention for this group. The significant delay from diagnosis to intervention may mostly be attributed to financial constraints. These findings support evidence from existing studies which found that patients may not be in a position to cater for the costs of the recommended care and thus take long to get the intervention or do not get the intervention at all[ 17 , 21 , 26 , 37 – 40 ]. At diagnosis 57 (3.4%) were deemed inoperable and were counselled on palliative care. This may be an indication of delayed diagnosis when complications have already set in. This is true as there is not a countrywide spread of diagnostic capability and adequate facilities for CHDs, leading to delayed diagnosis and appropriate intervention options as seen in other studies as well [ 19 ]. Mortality was considerably high (36%) and children diagnosed with TOF were more likely to die than those without with adjusted odds for age of 1.99 (95%CI 1.21–3.34). Some studies have reported mortality as high as 50% in some centers more so in low-income countries [ 23 – 25 ]. Older children were more likely to die than those aged less than one year. This may be due to more complications as they grow older[ 23 , 37 ]. Some of the patients may have been diagnosed late or referred out of the country, yet they did not go as shown in this study. Some may not afford the cost of care for such interventions. Mortality rates from CHD tend to be higher in developing countries than in developed countries due to a combination of socioeconomic, healthcare, and infrastructural challenges. The lack of prompt and ready access to prenatal care and diagnostic resources frequently leads to undetected or late diagnosis of CHD, which in turn may result in delayed interventions and higher mortality rates. The problem is probably worsened by the inadequate healthcare infrastructure, including shortages of skilled healthcare professionals, specialized pediatric cardiac facilities, and surgical expertise, which restrict access to life-saving treatments and surgeries. Additionally, socioeconomic factors like poverty, malnutrition, and the absence of clean water and sanitation exacerbate the susceptibility to CHD complications and infections, which, in turn, elevates mortality rates. Due to the scarcity of resources and healthcare infrastructure, individuals born with CHD in low-resource countries are probably at a significantly higher risk of mortality than those in high-income countries where advanced medical care and resources are more accessible. To address this disparity, a multidisciplinary approach is required, including investments in healthcare infrastructure, training of healthcare professionals, and implementation of public health initiatives to improve prenatal care, early detection, and access to life-saving interventions. Admittedly, in this study, the high mortality may have been due to a selection bias of only admitted patients. The CHD patients who are likely to be admitted are the ones with complications or with comorbidities. These are the same ones more likely to die than the stable CHD patients being treated as outpatients. The high mortality is may be an indication of need for early diagnosis and intervention. The patient records contained a substantial amount of missing data. As the records were not created for research purposes, they had a greater amount of missing information [ 41 ]. Originally, we had planned to contact the patients to obtain the missing data, but many could not be reached using the contact information they provided. It is possible that the number of patients who received the intervention is higher than what was reported, as some may have received the intervention at other private facilities and their follow-up was transferred to those facilities, making them untraceable in the KNH health information system. Missing data is a significant challenge in many studies, particularly in retrospective studies where up to 55% of the data may be missing [ 42 , 43 ]. Study limitations and minimization The present study utilized a retrospective design, which is subject to certain methodological constraints. A prospective study would offer a more comprehensive and precise assessment of the outcome measures examined herein. Additionally, the study relied on patient medical records, which are susceptible to missing information. To address this, whenever information was lacking, patients were contacted by telephone to clarify the necessary details. While this approach minimized the number of incomplete records, it was not possible to reach all patients. The incomplete records were documented and were incorporated into the report delivered to the hospital, which may serve as a foundation for enhancing the quality of documentation and care provided within the hospital. Finally, the health information department at KNH maintains and associates the medical record file number with the patient's clinical diagnosis exclusively for those ever admitted to KNH. It does not connect the diagnosis and the medical record file number for individuals who have received treatment as outpatients or in specialist clinics if they have never been admitted to KNH. This approach may introduce a selection bias of patients with poor outcomes, as those who have been admitted may be sicker and have a higher likelihood of experiencing a poor outcome. Conclusion Based on this study, it is evident that the majority of individuals diagnosed with CHD do not receive the recommended interventions, particularly in areas with limited resources. The lengthy time period between diagnosis and intervention is mainly due to issues related to access and affordability of these interventions. Mortality rates for CHD patients remain high in low-income environments. There are numerous gaps in the documentation for CHD patients at KNH, and it is crucial to reduce the time taken from diagnosis to intervention for these patients. Enhancing the medical records for CHD patients is essential to ensure that all relevant details, including recommended interventions, time to intervention, and patient outcomes, are captured. Abbreviations ASD Atrial Septal Defect CHD Congenital Heart diseases ICD International Classification of Diseases IPCCC International Paediatric and Congenital Cardiac Code IQR Inter- Quartile Range KNH Kenyatta National Hospital KNH-UoN ERC Kenyatta National Hospital – University of Nairobi Ethics and Research Committee (KNH-UoN ERC MTRH Moi Teaching and Referral Hospital PDA Patent Ductus Arteriosus REDCap Research Electronic Data Capture ToF Tetralogy of Fallot VSD Ventricular Septal Defect Declarations Ethical approval, consent and publication The study was carried out after approval (P250/04/2021) from the Kenyatta National Hospital – University of Nairobi Ethics and Research Committee (KNH-UoN ERC). This being largely a retrospective study using patient records, we obtained waiver of individual patient consent from the KNH-UON ERC. We obtained approval for verbal consent witnessed by a third party for those patients whose medical records did not have full information, and phone interviews were conducted. Those patients or guardians deemed in need of further attention were referred to the appropriate places for emotional and psychosocial support such as the patient support center within KNH. The ERC approval included presentation in scientific conferences and publication of findings. Consent for publication Not applicable as there is not contain data from any individual person. However, there was consent for publication was obtained from the KNH-UoN ERC and from all authors. Availability of data and materials Data and other materials used for this research are under the custody of the Kenyatta National Hospital (KNH) research and programs department (https://knh.or.ke/index.php/medical-research-programs/). They can be obtained on permission from the KNH administration and the ERC. Competing interests The authors declare that they have no competing interests. Clinical trial number Not applicable Funding Funding for data collection was obtained from Medical Research and Programs department at Kenyatta National Hospital. No additional financial assistance was received for the conceptualization or conduct of this study. Author contributions Conceptualization, design, and development of the data collection software, as well as data collection, analysis, interpretation, and drafting of the manuscript were overseen by BOO. DK contributed to the design and development of the data collection software, data collection, analysis, and interpretation, and also provided assistance in revising the manuscript. EK contributed to the design and data collection, and also aided in interpretation and revision of the manuscript. EC, NG, and CYJ all contributed to the design and data collection, and also participated in the revision of the manuscript. 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BMC Med Res Methodol. 2022;22(122):1–9. Dziadkowiec O, Durbin J, Muralidharan VJ, Novak M, Cornett B. Improving the Quality and Design of Retrospective Clinical Outcome Studies that Utilize Electronic Health Records. HCA Healthc J Med. 2020;1(3):131–8. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 07 Apr, 2026 Reviews received at journal 08 Oct, 2025 Reviews received at journal 01 Oct, 2025 Reviewers agreed at journal 30 Sep, 2025 Reviewers agreed at journal 29 Sep, 2025 Reviewers agreed at journal 25 Sep, 2025 Reviewers invited by journal 18 Sep, 2025 Editor invited by journal 26 Aug, 2025 Editor assigned by journal 25 Aug, 2025 Submission checks completed at journal 25 Aug, 2025 First submitted to journal 16 Aug, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-7386594","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":521723840,"identity":"9d1b0caf-c1dc-4035-96d2-b6196f01c500","order_by":0,"name":"Bonface Ombaba 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Kimani","email":"","orcid":"","institution":"Kenyatta National Hospital","correspondingAuthor":false,"prefix":"","firstName":"Esther","middleName":"","lastName":"Kimani","suffix":""},{"id":521723850,"identity":"be3bc970-4055-4f65-bfa7-7556efad6677","order_by":3,"name":"Emily Chesire","email":"","orcid":"","institution":"Moi Teaching and Referral Hospital","correspondingAuthor":false,"prefix":"","firstName":"Emily","middleName":"","lastName":"Chesire","suffix":""},{"id":521723853,"identity":"cbb34ef8-f810-4d2f-b2f9-475696bd7b17","order_by":4,"name":"Naomi Gachara","email":"","orcid":"","institution":"Kenyatta National Hospital","correspondingAuthor":false,"prefix":"","firstName":"Naomi","middleName":"","lastName":"Gachara","suffix":""},{"id":521723854,"identity":"94b13278-6602-4668-bfa4-8ab93ff009ae","order_by":5,"name":"Christine Yuko-Jowi","email":"","orcid":"","institution":"University of Nairobi","correspondingAuthor":false,"prefix":"","firstName":"Christine","middleName":"","lastName":"Yuko-Jowi","suffix":""},{"id":521723856,"identity":"3c8be9ea-60b4-4011-9530-eac38bef704e","order_by":6,"name":"Jalemba Aluvaala","email":"","orcid":"","institution":"University of Nairobi","correspondingAuthor":false,"prefix":"","firstName":"Jalemba","middleName":"","lastName":"Aluvaala","suffix":""},{"id":521723857,"identity":"b7e814d6-2436-4c5b-a0e2-06d551ec561e","order_by":7,"name":"Fred Were","email":"","orcid":"","institution":"University of Nairobi","correspondingAuthor":false,"prefix":"","firstName":"Fred","middleName":"","lastName":"Were","suffix":""}],"badges":[],"createdAt":"2025-08-16 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07:19:52","extension":"html","order_by":6,"title":"","display":"","copyAsset":false,"role":"acdc-reference","size":109814,"visible":true,"origin":"","legend":"","description":"","filename":"earlyproof.html","url":"https://assets-eu.researchsquare.com/files/rs-7386594/v1/58f22dfd45c31a19ea0964c1.html"},{"id":92478182,"identity":"8757e640-2947-466c-b281-0ede5fbcc4b8","added_by":"auto","created_at":"2025-09-30 07:27:52","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":104243,"visible":true,"origin":"","legend":"\u003cp\u003eOne-year outcomes of patients admitted with congenital heart disease at KNH, Kenya\u003c/p\u003e","description":"","filename":"Figure1timetointerventionBMC.png","url":"https://assets-eu.researchsquare.com/files/rs-7386594/v1/69aa8d7988315d18a594f79e.png"},{"id":92479009,"identity":"876540a4-c508-4997-bbd0-ae8d166fa892","added_by":"auto","created_at":"2025-09-30 07:35:52","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1051689,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7386594/v1/f5bec173-6e7c-4f69-967d-29f1c25c01cb.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"One-year outcomes and intervention waiting time of patients admitted with congenital heart disease at Kenyatta National Hospital, Kenya","fulltext":[{"header":"Introduction","content":"\u003cp\u003eCongenital heart disease (CHD) is the commonest birth defect worldwide, affecting millions of newborns every year[\u003cspan additionalcitationids=\"CR2 CR3 CR4 CR5 CR6 CR7\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. CHD is a clinically significant structural heart disease present at birth with inclusion of few other lesions that manifest later in life but with the risk factors being present at birth. Noteworthy, although evidence indicates that Africa has the lowest regional prevalence of CHD[\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e], the prevalence of CHD is estimated at about 8\u0026ndash;15 per 1,000 live births[\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Congenital heart diseases are broad and the widely used terms are as per the International Paediatric and Congenital Cardiac Code (IPCCC) and the International Classification of Diseases (ICD-11)[\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eSome studies in Africa have established that among children admitted in paediatric wards with heart disease, congenital heart diseases are the most common with Ventricular Septal Defect (VSD) being the commonest CHD followed by Patent Ductus Arteriosus (PDA) and Tetralogy of Fallot (TOF) [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. Such studies in Kenya did not collect data from all units where cardiac patients are admitted and therefore may not be a true reflection of the hospital status. The common CHDs in children are much the same ones that present in adulthood such as atrial septal defect (ASD), Tetralogy of Fallot (TOF), ventricular septal defect (VSD) and Patent Ductus Arteriosus (PDA). However, in adulthood, they may present with complications such as pulmonary hypertension, Eisenmenger, heart failure, arrhythmias, infective endocarditis and stroke, and have been shown to worsen with age[\u003cspan additionalcitationids=\"CR13 CR14\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eCongenital heart diseases are common anomalies that increase morbidity and mortality among children and adolescents[\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan additionalcitationids=\"CR17\" citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e], and whose outcomes can vary significantly depending on the region in which the patients live. In more developed countries, better outcomes are typically seen, whereas in countries like Africa and those with less development, the outcomes are often poor or not well documented[\u003cspan additionalcitationids=\"CR20 CR21 CR22\" citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. Delay in intervention may portend worse outcomes. In addition, the number of cases diagnosed with CHD in Kenya that need surgical interventions is probably more than the number of operations carried out[\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Delayed diagnosis and long waiting time to intervention may lead to deaths before intervention is undertaken or poor outcome when the intervention is finally undertaken[\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan additionalcitationids=\"CR24 CR25\" citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eGlobally, access to healthcare and diagnostic technologies are known to substantially impact the reported birth prevalence of CHD as early diagnosis and prompt referral to an intervention center before complications arise may improve outcomes[\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. In Africa, obtaining medical care is challenging, and this is especially true for infants born with CHD, as many of them probably go undiagnosed. In the Sub-Saharan Africa, Kenya included, inadequate healthcare workforce and medical facilities are prevalent, leading to delayed diagnosis and limited treatment options [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. Thus, some patients end up being diagnosed late or are referred out of the country. Some may not afford the cost of care for such interventions. Additionally, critical forms of CHD rarely receive the medical interventions that can significantly improve or even save their lives[\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e, \u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. Prenatal screening and newborn screening programs would improve outcomes by providing an opportunity for early referral to the appropriate place for intervention, although in Africa these are also often not well developed, with limited access to echocardiography and limited treatment options[\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan additionalcitationids=\"CR27\" citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. These factors may lead to poor outcomes. Whereas in areas where resources, health workforce and appropriate facilities are available, there is early diagnosis, prompt intervention and possibly good outcomes.\u003c/p\u003e\u003cp\u003eThere are few centers that have Cardiology services for CHD in Kenya. As of 2022, there were three public facilities with diagnostic and interventional Cardiology services for CHDs in Kenya \u0026ndash; Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenyatta National Hospital in Nairobi and Coast General Teaching and Referral Hospital in Mombasa to which most patients from other public hospitals with suspected or confirmed CHD are referred for intervention and follow up.\u003c/p\u003e\u003cp\u003eDespite the significant attempts towards building an evidence base for CHD in Africa[\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan additionalcitationids=\"CR30 CR31\" citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e], there still remains a limitation of accurate data on CHD burden, waiting time before intervention, and post-diagnostic outcomes in the Kenya and at large the Sub-Saharan Africa region. In addition, the number of patients with congenital cardiac disease on follow up at KNH and their outcome is unknown. This study therefore sought to generate the information that may also be used for other research around CHD in KNH as well as for advocacy and planning purposes in the region where interventions are thought to be low or with poor outcomes [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan additionalcitationids=\"CR24 CR25\" citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e].\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e\u003ch2\u003eAim\u003c/h2\u003e\u003cp\u003eThe aims were to establish one-year post diagnosis outcome, the waiting time from diagnosis to intervention and factors associated with one-year post diagnosis mortality.\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eStudy design\u003c/h3\u003e\n\u003cp\u003eThis was a cross-sectional study where records of all patients who had been admitted at KNH for the period 2016 to 2021 with a diagnosis of CHD and those with at least one year follow up in clinic were retrospectively reviewed. The one year follow up data formed the time point for the cross-sectional study to calculate point prevalence. The patient records were reviewed for one-year post-diagnosis outcome and the waiting time from diagnosis to intervention.\u003c/p\u003e\n\u003ch3\u003eStudy area and population\u003c/h3\u003e\n\u003cp\u003eKenyatta National Hospital (KNH) is one of the two national referral public hospitals in Kenya for patients with congenital heart disease. It is based in Nairobi, the capital city of Kenya. It has personnel and facilities for diagnosis, medical management, catherization and surgery for some CHD. The KNH medical records department has clinical diagnosis for patients who have ever been admitted.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eStudy population\u003c/strong\u003e\u003cp\u003eThe study population included all patients diagnosed with a congenital heart disease from January 2016 to December 2021 and who had ever been admitted at KNH and with at least one year follow up in clinic. Records of patients listed as having heart disease but without supporting evidence from the investigation reports in their medical records file, those with patients with iatrogenic heart diseases, heart defects caused by trauma and preterm neonates diagnosed to have a patent foramen ovale and/or patent ductus arteriosus were excluded from the study as these may not be considered as being truly CHDs.\u003c/p\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eVariables\u003c/b\u003e: The data collected included: age, gender, residence/home county, diagnosis and classification of the diagnosis (as per International Classification of Diseases (ICD-10)), intervention done, place where intervention was done, team that did the intervention, time from diagnosis to intervention and one-year post diagnosis status (outcome). Outcome was defined as being alive or dead. Waiting time was calculated retrospectively as the duration from when diagnosis and recommendation was made to the time the intervention took place. This data was retrieved from the medical records and entered into the study data collection form.\u003c/p\u003e\n\u003ch3\u003eData collection procedures\u003c/h3\u003e\n\u003cp\u003eData was collected in 2022 after ethical approval. The medical records of all patients diagnosed with CHD were retrieved from the KNH health information office and their medical records reviewed for relevance and the data required abstracted. Follow-up telephone calls for patients whose medical records did not have the required information were called to fill up gaps missing data [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e]. The missing data was obtained from the patient/parent/guardian after explanation of the reasons for the call and seeking verbal informed consent from them on phone. The data required from each patient was entered into a data abstraction tool on the Research Electronic Data Capture (REDCap). Any incomplete fields or false data entry were flagged up by REDCap and actioned upon as appropriate. Most of the cardiac clinical diagnosis were recorded as what the Paediatric cardiologists diagnosed based on transthoracic echocardiogram findings. For those who had undergone extra investigations and surgeries, the final diagnosis after all the investigations and surgery is what was documented as the diagnosis.\u003c/p\u003e\u003cdiv id=\"Sec7\" class=\"Section2\"\u003e\u003ch2\u003eData analysis\u003c/h2\u003e\u003cp\u003eThe data was analyzed using the R statistical package, version 4.3.1. To establish the one-year post diagnosis mortality of patients who had been admitted in KNH from January 2016 to December 2021 for Congenital Heart Disease, the total number of patients who had died by one-year post diagnosis was the numerator while the total number of patients diagnosed with CHD over the study period was the denominator. The missing data was reported as missing or unknown as a fraction of the category under consideration.\u003c/p\u003e\u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eStudy patient characteristics\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eVariable\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(N\u0026thinsp;=\u0026thinsp;1703, %)\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003eAge group in years at first diagnosis\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026le;\u0026thinsp;1 month\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e20(1.2)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026gt;\u0026thinsp;1month to \u0026lt;\u0026thinsp;1year\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e893(52.4)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u0026ndash;5 years\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e258(15.2)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026gt;\u0026thinsp;5\u0026ndash;12 years\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e56(3.3)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026gt;\u0026thinsp;12\u0026ndash;17 years\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e20(1.2)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e18\u0026ndash;30 years\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e14(0.8)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026gt;\u0026thinsp;30\u0026ndash;40 years\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e21(1.2)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u0026gt;\u0026thinsp;40 years\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e9(0.5)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNot documented\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e412(24.2)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eGender\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eFemale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e739(43.4)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMale\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e694(40.8)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNot documented\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e270(15.8)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEver been pregnant (n\u0026thinsp;=\u0026thinsp;739, female adults)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e6(0.8)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eFacility of first referral (source)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKNH wards/units\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e374(22.0)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eReferred from a private hospital/doctor\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e198(11.6)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eReferred from another public hospital\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e570(33.5)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSelf-referral\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e25(1.4)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNot documented\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e536(31.5)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e\u003ch2\u003eSocio-demographics, diagnosis and recommended treatment for CHD patients\u003c/h2\u003e\u003cp\u003eAs shown in Table \u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e, a total of 1703 patients were enrolled in the study. The majority (53.6%) of these patients were under one year old at diagnosis. There were more females (43.4%) than males (40.8%), and out of these females, only 6 had ever been pregnant. Among these patients at first diagnosis, 33.5% were referred from other public hospitals, 22.0% were from within KNH, while 11.6% were from private hospitals as indicated in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. More than eighty percent of these cases of congenital heart disease (CHD) were diagnosed at Kenyatta National Hospital (KNH).\u003c/p\u003e\u003cp\u003eAs shown in Table \u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e, upon CHD diagnosis, medical management was initially recommended for 43.2% of these patients, while surgery was recommended for 14.1%, with the majority (77.5%) of surgeries being recommended in Kenya. Catheterization and conservative management were recommended for 3.8% and 3.3% of the patients, respectively.\u003c/p\u003e\u003cp\u003eThe majority (62.9%) of patients recommended for surgery did not undergo the surgery, or this information was unavailable. The majority (97.1%) of surgeries were performed at KNH, with an average waiting time from diagnosis to surgery being 59 days (IQR: 10\u0026ndash;208 days). Of the patients recommended for catheterization, 67.7% underwent the procedure, primarily at KNH, with an average waiting time to catheterization of 95 days (IQR: 13.5-188.8 days). Among patients referred for surgery outside the county, only 13% underwent the surgery. Among the 7 patients who sought treatment out of the country, the waiting time to treatment was 349 days (IQR: 10.8-703.8 days), as shown in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eDiagnosis and recommended treatment among CHD patients\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"2\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eVariable\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(N\u0026thinsp;=\u0026thinsp;1703, %)\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003eFacility of CHD diagnosis\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKenyatta National Hospital\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1511(88.7)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eOther/Unknown\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e192(11.3)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eRecommended intervention at diagnosis\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMedical management\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e735(43.2)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eInoperable/Conservative management\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e57(3.3)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSurgery in Kenya\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e186(10.9)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCatheterization in Kenya\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e65(3.8)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eReferral out of the country for surgery\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e54(3.2)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNot documented\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e606(35.6)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eRecommended Surgical Intervention in Kenya taken place (n\u0026thinsp;=\u0026thinsp;186)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e69(37.1)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo/Unknown\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e117(62.9)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePlace of surgical intervention for those advised on local surgery (n\u0026thinsp;=\u0026thinsp;69)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKenyatta National Hospital\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e67(97.1)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMater Hospital - Kenya\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1(1.4)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eIndia-Manipal\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1(1.4)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eReferred out of the country for surgery (n\u0026thinsp;=\u0026thinsp;54)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e7(13.0)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e10(18.5)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUnknown\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e37(68.5)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTime to intervention (median, (IQR)) (days)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e59 (10\u0026ndash;208)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eRecommended Catheterization in Kenya(n\u0026thinsp;=\u0026thinsp;65)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e44(67.7)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e10(15.4)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUnknown\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e11(16.9)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePlace of Catheterization in Kenya(n\u0026thinsp;=\u0026thinsp;44)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKenyatta National Hospital\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e43(97.7)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMater Hospital\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1(2.3)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTime to Catheterization (median, (IQR)) (days)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e95 (13.5-188.8)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e\u003cp\u003e\u003cb\u003eCountry of intervention (For those who referred out of the country) (n\u0026thinsp;=\u0026thinsp;7)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eIndia\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5(71.4)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eIsrael\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1(14.3)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eSpain\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1(14.3)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTime to intervention for those referred abroad (median, (IQR)) (days)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e349 (10.8-703.8)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eOutcome at one year and waiting time\u003c/h3\u003e\n\u003cp\u003eFigure \u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e shows the mortality at 1 year whereby of the 1703 patients admitted with CHD, 56.4% (n\u0026thinsp;=\u0026thinsp;961) were alive, 36.1% (n\u0026thinsp;=\u0026thinsp;615) died, and 7.5% (n\u0026thinsp;=\u0026thinsp;127) with unknown status.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003cp\u003eFigure \u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e: One-year outcomes of patients admitted with congenital heart disease at Kenyatta National Hospital, Kenya\u003c/p\u003e\u003cp\u003eOlder children and those with Tetralogy of Fallot (TOF) were more likely to die than those without with adjusted odds for age of 1.99 (95%CI 1.21\u0026ndash;3.34).\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eFrom this study, a majority of the patients (53.6%) were children aged less than one year. As manifestations of CHD are often detected during the perinatal period and early infancy through routine screenings, clinical evaluations, and diagnostic imaging techniques, a number of studies have recorded younger patients presenting with CHDs [\u003cspan additionalcitationids=\"CR35\" citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]. There may be fewer older patients possibly due to early deaths for children with CHD and thus fewer survive into older age groups hence fewer older patients presenting for admission into hospital[\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. Most of the patients were referred by other health workers for cardiac evaluation (67%) as would be expected for a referral facility. The patients came from across the country although the counties near Nairobi had a higher concentration. Distance to a health facility has been a known factor in seeking care services[\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eOnly 37% had received the recommended surgical intervention within an year, with median waiting time to surgery of 59 (10\u0026ndash;208) days. This is comparable to a study by Azeez where 44% had received intervention for cyanotic CHD in children under 18 years[\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. In this study 67% had undergone the recommended catheterization within one year with time to catheterization being median of 95 (13.5-188.8) days. In this study, the number of cases diagnosed with CHD and advised on interventions was more than the number of interventions carried out as has been documented previously[\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]. At diagnosis 54 (2.2%) of the patients were referred abroad for further intervention, with a median time of 349 (10.8-703.8) days from diagnosis to intervention for this group. The significant delay from diagnosis to intervention may mostly be attributed to financial constraints. These findings support evidence from existing studies which found that patients may not be in a position to cater for the costs of the recommended care and thus take long to get the intervention or do not get the intervention at all[\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e, \u003cspan additionalcitationids=\"CR38 CR39\" citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. At diagnosis 57 (3.4%) were deemed inoperable and were counselled on palliative care. This may be an indication of delayed diagnosis when complications have already set in. This is true as there is not a countrywide spread of diagnostic capability and adequate facilities for CHDs, leading to delayed diagnosis and appropriate intervention options as seen in other studies as well [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eMortality was considerably high (36%) and children diagnosed with TOF were more likely to die than those without with adjusted odds for age of 1.99 (95%CI 1.21\u0026ndash;3.34). Some studies have reported mortality as high as 50% in some centers more so in low-income countries [\u003cspan additionalcitationids=\"CR24\" citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. Older children were more likely to die than those aged less than one year. This may be due to more complications as they grow older[\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. Some of the patients may have been diagnosed late or referred out of the country, yet they did not go as shown in this study. Some may not afford the cost of care for such interventions. Mortality rates from CHD tend to be higher in developing countries than in developed countries due to a combination of socioeconomic, healthcare, and infrastructural challenges. The lack of prompt and ready access to prenatal care and diagnostic resources frequently leads to undetected or late diagnosis of CHD, which in turn may result in delayed interventions and higher mortality rates. The problem is probably worsened by the inadequate healthcare infrastructure, including shortages of skilled healthcare professionals, specialized pediatric cardiac facilities, and surgical expertise, which restrict access to life-saving treatments and surgeries. Additionally, socioeconomic factors like poverty, malnutrition, and the absence of clean water and sanitation exacerbate the susceptibility to CHD complications and infections, which, in turn, elevates mortality rates. Due to the scarcity of resources and healthcare infrastructure, individuals born with CHD in low-resource countries are probably at a significantly higher risk of mortality than those in high-income countries where advanced medical care and resources are more accessible. To address this disparity, a multidisciplinary approach is required, including investments in healthcare infrastructure, training of healthcare professionals, and implementation of public health initiatives to improve prenatal care, early detection, and access to life-saving interventions. Admittedly, in this study, the high mortality may have been due to a selection bias of only admitted patients. The CHD patients who are likely to be admitted are the ones with complications or with comorbidities. These are the same ones more likely to die than the stable CHD patients being treated as outpatients. The high mortality is may be an indication of need for early diagnosis and intervention.\u003c/p\u003e\u003cp\u003eThe patient records contained a substantial amount of missing data. As the records were not created for research purposes, they had a greater amount of missing information [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. Originally, we had planned to contact the patients to obtain the missing data, but many could not be reached using the contact information they provided. It is possible that the number of patients who received the intervention is higher than what was reported, as some may have received the intervention at other private facilities and their follow-up was transferred to those facilities, making them untraceable in the KNH health information system. Missing data is a significant challenge in many studies, particularly in retrospective studies where up to 55% of the data may be missing [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e, \u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e].\u003c/p\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003eStudy limitations and minimization\u003c/h2\u003e\u003cp\u003eThe present study utilized a retrospective design, which is subject to certain methodological constraints. A prospective study would offer a more comprehensive and precise assessment of the outcome measures examined herein. Additionally, the study relied on patient medical records, which are susceptible to missing information. To address this, whenever information was lacking, patients were contacted by telephone to clarify the necessary details. While this approach minimized the number of incomplete records, it was not possible to reach all patients. The incomplete records were documented and were incorporated into the report delivered to the hospital, which may serve as a foundation for enhancing the quality of documentation and care provided within the hospital.\u003c/p\u003e\u003cp\u003eFinally, the health information department at KNH maintains and associates the medical record file number with the patient's clinical diagnosis exclusively for those ever admitted to KNH. It does not connect the diagnosis and the medical record file number for individuals who have received treatment as outpatients or in specialist clinics if they have never been admitted to KNH. This approach may introduce a selection bias of patients with poor outcomes, as those who have been admitted may be sicker and have a higher likelihood of experiencing a poor outcome.\u003c/p\u003e\u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eBased on this study, it is evident that the majority of individuals diagnosed with CHD do not receive the recommended interventions, particularly in areas with limited resources. The lengthy time period between diagnosis and intervention is mainly due to issues related to access and affordability of these interventions. Mortality rates for CHD patients remain high in low-income environments. There are numerous gaps in the documentation for CHD patients at KNH, and it is crucial to reduce the time taken from diagnosis to intervention for these patients. Enhancing the medical records for CHD patients is essential to ensure that all relevant details, including recommended interventions, time to intervention, and patient outcomes, are captured.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eASD\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eAtrial Septal Defect\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eCHD\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eCongenital Heart diseases\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eICD\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eInternational Classification of Diseases\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eIPCCC\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eInternational Paediatric and Congenital Cardiac Code\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eIQR\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eInter- Quartile Range\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eKNH\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eKenyatta National Hospital\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eKNH-UoN ERC\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003e Kenyatta National Hospital \u0026ndash; University of Nairobi Ethics and Research Committee (KNH-UoN ERC\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eMTRH\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eMoi Teaching and Referral Hospital\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003ePDA\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003ePatent Ductus Arteriosus\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eREDCap\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eResearch Electronic Data Capture\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eToF\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eTetralogy of Fallot\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eVSD\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eVentricular Septal Defect\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"Declarations","content":"\u003ch2\u003eEthical approval, consent and publication\u003c/h2\u003e\n\u003cp\u003eThe study was carried out after approval (P250/04/2021) from the Kenyatta National Hospital \u0026ndash; University of Nairobi Ethics and Research Committee (KNH-UoN ERC). This being largely a retrospective study using patient records, we obtained waiver of individual patient consent from the KNH-UON ERC. We obtained approval for verbal consent witnessed by a third party for those patients whose medical records did not have full information, and phone interviews were conducted. \u0026nbsp;Those patients or guardians deemed in need of further attention were referred to the appropriate places for emotional and psychosocial support such as the patient support center within KNH. The ERC approval included presentation in scientific conferences and publication of findings.\u003c/p\u003e\n\u003ch2\u003eConsent for publication\u003c/h2\u003e\n\u003cp\u003eNot applicable as there is not contain data from any individual person. However, there was consent for publication was obtained from the KNH-UoN ERC and from all authors.\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eAvailability of data and materials\u003c/h2\u003e\n\u003cp\u003eData and other materials used for this research are under the custody of the Kenyatta National Hospital (KNH) research and programs department (https://knh.or.ke/index.php/medical-research-programs/). They can be obtained on permission from the KNH administration and the ERC.\u0026nbsp;\u003c/p\u003e\n\u003ch2\u003eCompeting interests\u003c/h2\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003ch2\u003eClinical trial number\u003c/h2\u003e\n\u003cp\u003eNot applicable\u003c/p\u003e\n\u003ch2\u003eFunding\u003c/h2\u003e\n\u003cp\u003eFunding for data collection was obtained from Medical Research and Programs department at Kenyatta National Hospital. No additional financial assistance was received for the conceptualization or conduct of this study.\u003c/p\u003e\n\u003ch2\u003eAuthor contributions\u003c/h2\u003e\n\u003cp\u003eConceptualization, design, and development of the data collection software, as well as data collection, analysis, interpretation, and drafting of the manuscript were overseen by BOO. DK contributed to the design and development of the data collection software, data collection, analysis, and interpretation, and also provided assistance in revising the manuscript. EK contributed to the design and data collection, and also aided in interpretation and revision of the manuscript. EC, NG, and CYJ all contributed to the design and data collection, and also participated in the revision of the manuscript. MJA and FNW aided in interpretation and revision of the manuscript\u003c/p\u003e\n\u003ch2\u003eAcknowledgements\u003c/h2\u003e\n\u003cp\u003eNot applicable.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAbdelrahman O, Diab R. Prevalence and Pattern of Congenital Heart Disease Among Children in Khartoum State, Sudan: A Reflection of the Current Cardiac Profile. Cureus. 2022;14(1):e21196.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBatte A, Lwabi P, Lubega S, Kiguli S, Otwombe K, Chimoyi L, et al. Wasting, underweight and stunting among children with congenital heart disease presenting at Mulago hospital, Uganda. BMC Pediatr. 2017;17(1):10.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eLiu Y, Chen S, Zuhlke L, Black GC, Choy MK, Li N, et al. Global birth prevalence of congenital heart defects 1970\u0026ndash;2017: updated systematic review and meta-analysis of 260 studies. Int J Epidemiol. 2019;48(2):455\u0026ndash;63.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eTantchou TJC, Ambassa JC, Butera G, Giamberti A, Sadeu JC. Occurrence and pattern of congenital heart diseases in a rural area of sub-Saharan Africa. Cardiovasc J Afr. 2011;22(2):63\u0026ndash;6.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eEkure EN, Adeyemo A, Liu H, Sokunbi O, Kalu N, Martinez AF, et al. Exome Sequencing and Congenital Heart Disease in Sub-Saharan Africa. Circ Genom Precis Med. 2021;14(1):e003108.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eHoffman JI. The global burden of congenital heart disease. Cardiovasc J Afr. 2013;24(4):141\u0026ndash;5.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eRossouw B. Congenital heart disease in Africa threatens Sustainable Development Goals. South Afr J Crit Care. 2021; 37(1).\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eWu W, He J, Shao X. Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990\u0026ndash;2017. Med (Baltim). 2020;99(23):e20593.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eFranklin RCG, Beland MJ, Colan SD, Walters HL, Aiello VD, Anderson RG, et al. Nomenclature for congenital and Paediatric cardiac disease: The International Paediatric and Congenital Cardiac Code (IPCCC) and the Eleventh Iteration of the International Classification of Diseases (ICD-11). Cardiol Young. 2017;27:1872\u0026ndash;938.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eGachoka LN, Omuga BO. Characteristics of children with heart disease aged 0\u0026ndash;12 years in Kenyatta National Hospital Paediatric wards, Kenya. Int J Adv Res. 2018;6(8):981\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eZikarg YT, Yirdaw CT, Aragie TG. 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Curr Heart Fail Rep. 2016;13(5):247\u0026ndash;54.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eEdwin F, Zuhlke L, Farouk H, Mocumbi AO, Entsua-Mensah K, Delsol-Gyan D, et al. Status and Challenges of Care in Africa for Adults with Congenital Heart Defects. World J Pediatr Congenit Heart Surg. 2017;8(4):495\u0026ndash;501.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eEkure EN, Kalu N, Sokunbi OJ, Kruszka P, Olusegun-Joseph AD, Ikebudu D, et al. Clinical epidemiology of congenital heart disease in Nigerian children, 2012\u0026ndash;2017. Birth Defects Res. 2018;110(16):1233\u0026ndash;40.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eNamuyonga J, Mocumbi AO. Pulmonary Hypertension in Children across Africa: The Silent Threat. Int J Pediatr. 2021; 9998070.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eZimmerman M, Sable C. Congenital heart disease in low-and-middle-income countries: Focus on sub-Saharan Africa. 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Incidence and mortality trend of congenital heart disease at the global, regional, and national level, 1990\u0026ndash;2017. Medicine. 2020;99(23):e20593.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eAwori MN, Ojuka D, Marangu D, Bannon P. Current status of the pediatric congenital heart disease management pathway in low and low-middle income countries: A review. Afr Annals Thorac Cardiovasc Surg. 2023;15(5):42\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eBanothu KK, Kumar A, Agarwal S, Sankar J, Kabra SK, Lodha R. Outcomes of Children with Unoperated Congenital Heart Disease Admitted to PICU-A Single-Center Experience. Indian J Pediatr. 2022;89(11):1073\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eKamdem F, Koum DK, Hamadou B, Yemdji M, Luma H, Doualla MS, et al. 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Heart. 2013;99(21):1554\u0026ndash;61.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eTalari K, Goyal M. Retrospective studies \u0026ndash; utility and caveats. J Royal Coll Physicians Edinb. 2020;50(4):398\u0026ndash;402.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eOkpara C, Edokwe C, Loannidis G, Papaioannou A, Adachi JD, Thabane L. The reporting and handling of missing data in longitudinal studies of older adults is suboptimal: a methodological survey of geriatric journals. BMC Med Res Methodol. 2022;22(122):1\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eDziadkowiec O, Durbin J, Muralidharan VJ, Novak M, Cornett B. Improving the Quality and Design of Retrospective Clinical Outcome Studies that Utilize Electronic Health Records. HCA Healthc J Med. 2020;1(3):131\u0026ndash;8.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bped","sideBox":"Learn more about [BMC Pediatrics](http://bmcpediatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bped/default.aspx","title":"BMC Pediatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Kenya, Congenital Heart disease, diagnosis, interventions, outcomes","lastPublishedDoi":"10.21203/rs.3.rs-7386594/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7386594/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eIntroduction:\u003c/h2\u003e\u003cp\u003eCongenital Heart diseases (CHD) are clinically significant structural heart disease present at birth. CHD is found in 8\u0026ndash;15 babies per 1,000 live births. Delayed diagnosis and long waiting time to intervention may lead to poor outcome. The objective was to establish the one-year post diagnosis outcome, the waiting time from diagnosis to intervention and factors associated with one-year post diagnosis mortality.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eThis was a retrospective review of patient records for patient with CHD admitted to Kenyatta National Hospital (KNH) from 1st January 2016 to December 2021. We collected data and entered it into REDCap and then analyzed using R.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003e We reviewed 1,703 patient records for the study. At diagnosis, a majority of the patients were children aged less than one year (53.6%) with 56.6% males. At one-year post-diagnosis, the mortality rate was 36.1%. Only 69 (37%) received recommended surgical intervention within one-year with a median time 59 (10\u0026ndash;208) days. While 44 (67%) had undergone recommended catheterization within one year with median of 95 (13.5-188.8) days. Those whose intervention was outside the country took 349 (10.8-703.8) days to get intervention. Older children and those with Tetralogy of Fallot (TOF) were more likely to die.\u003c/p\u003e\u003ch2\u003eConclusion\u003c/h2\u003e\u003cp\u003eFew children with CHD receive the recommended interventions. There is a long waiting time from diagnosis to intervention. Mortality for patients with CHD remains high. There are many gaps in the documentation for patients with CHD at KNH. There is need to shorten time taken from diagnosis to intervention for patients with CHD and to improve documentation for patients with CHD at KNH.\u003c/p\u003e","manuscriptTitle":"One-year outcomes and intervention waiting time of patients admitted with congenital heart disease at Kenyatta National Hospital, Kenya","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-09-30 07:19:48","doi":"10.21203/rs.3.rs-7386594/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2026-04-07T05:59:32+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-08T18:56:10+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-10-01T14:15:13+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"1405546883073394973821692272682303205","date":"2025-09-30T20:02:03+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"75459485541924559117357831727532875209","date":"2025-09-29T07:26:12+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"110751019892133867820059122416849761493","date":"2025-09-25T20:27:58+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-09-18T09:53:24+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-08-26T06:00:28+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-08-25T06:09:15+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-08-25T06:07:55+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Pediatrics","date":"2025-08-16T09:30:16+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-pediatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bped","sideBox":"Learn more about [BMC Pediatrics](http://bmcpediatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bped/default.aspx","title":"BMC Pediatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"46ea09ad-006f-4ca5-8bec-dd45c39ee5cd","owner":[],"postedDate":"September 30th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2026-04-19T17:53:19+00:00","versionOfRecord":[],"versionCreatedAt":"2025-09-30 07:19:48","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-7386594","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7386594","identity":"rs-7386594","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}