Methods to estimate access to care and the effect of interventions on the outcomes of congenital disorders

Blencowe, Hannah; Moorthie, Sowmiya; Darlison, Matthew; Gibbons, Stephen; Modell, Bernadette

doi:10.1007/s12687-018-0359-3

Cited by 12 publications

(10 citation statements)

References 63 publications

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“…Overview of interventions for and outcomes of neural tube defect–affected pregnancies. Adapted from Blencowe, et al . 1 Including maximizing the control and appropriate medications for chronic conditions, including epilepsy and diabetes, with preconception optimization of medication to reduce risk.…”

Section: Methodsmentioning

confidence: 99%

“…For countries without data, the proportion of women and infants with access to a comprehensive package of optimal services, including diagnostic and specialist services such as urology and padiatric surgery, was estimated using an approach previously developed for the Modell Global Database where access to services is estimated based on the current infant mortality rate (Appendix S4, online only) . As eTOPFAs for NTDs are affected not only by the availability of prenatal diagnosis by prenatal ultrasound scan but also by the legal status, national policy, and local clinical and cultural practices of eTOPFA in each country, an adapted approach was undertaken (Appendix S5, online only) . For countries with no observational data, we assumed that the comprehensive package of optimal services includes routine antenatal ultrasound screening for structural abnormalities.…”

Section: Methodsmentioning

confidence: 99%

“…8,28 As eTOPFAs for NTDs are affected not only by the availability of prenatal diagnosis by prenatal ultrasound scan but also by the legal status, national policy, and local clinical and cultural practices of eTOPFA in each country, an adapted approach was undertaken (Appendix S5, online only). 28,29 For countries with no observational data, we assumed that the comprehensive package of optimal services includes routine antenatal ultrasound screening for structural abnormalities. In countries for which birth registry data on eTOPFAs are available, reported rates are used.…”

Section: Estimation Of Access To Servicesmentioning

confidence: 99%

“…Overview of interventions for and outcomes of neural tube defect-affected pregnancies. Adapted from Blencowe, et al28 1 Including maximizing the control and appropriate medications for chronic conditions, including epilepsy and diabetes, with preconception optimization of medication to reduce risk 2. Including information on eTOPFAs where they are legal and where it is the parental choice, prognosis and long-term outcomes, and plans for delivery 3.…”

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confidence: 99%

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Estimates of global and regional prevalence of neural tube defects for 2015: a systematic analysis

Blencowe

Kancherla

Moorthie

et al. 2018

Annals of the New York Academy of Sciences

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230

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Neural tube defects (NTDs) are associated with substantial mortality, morbidity, disability, and psychological and economic costs. Many are preventable with folic acid, and access to appropriate services for those affected can improve survival and quality of life. We used a compartmental model to estimate global and regional birth prevalence of NTDs (live births, stillbirths, and elective terminations of pregnancy) and subsequent under-5 mortality. Data were identified through web-based reviews of birth defect registry databases and systematic literature reviews. Meta-analyses were undertaken where appropriate. For 2015, our model estimated 260,100 (uncertainty interval (UI): 213,800-322,000) NTD-affected birth outcomes worldwide (prevalence 18.6 (15.3-23.0)/10,000 live births). Approximately 50% of cases were elective terminations of pregnancy for fetal anomalies (UI: 59,300 (47,900-74,500)) or stillbirths (57,800 (UI: 35,000-88,600)). Of NTD-affected live births, 117,900 (ß75%) (UI: 105,500-186,600) resulted in under-5 deaths. Our systematic review showed a paucity of high-quality data in the regions of the world with the highest burden. Despite knowledge about prevention, NTDs remain highly prevalent worldwide. Lack of surveillance and incomplete ascertainment of affected pregnancies make NTDs invisible to policy makers. Improved surveillance of all adverse outcomes is needed to improve the robustness of total NTD prevalence estimation, evaluate effectiveness of prevention through folic acid fortification, and improve outcomes through care and rehabilitation.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Estimation Of Access To Servicesmentioning

confidence: 99%

mentioning

confidence: 99%

See 2 more Smart Citations

Estimates of global and regional prevalence of neural tube defects for 2015: a systematic analysis

Blencowe

Kancherla

Moorthie

et al. 2018

Annals of the New York Academy of Sciences

Self Cite

230

233

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“…A systematic review showed a paucity of high‐quality data in the regions of the world with the highest burden. (Blencowe, Kancherla, Moorthie, et al, ; Blencowe, Moorthie, Petrou, et al, ).…”

Section: Prevention and Control Of Neural Tube Defects (Ntds)mentioning

confidence: 98%

Achieving the targets of sustainable development goals (2030 agenda) for congenital disorders in Asia: Bottlenecks and interventions

Thong

2019

American J of Med Genetics Pt C

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which included a set of 17 measurable "sustainable development goals" (SDGs).The SDGs included targets to end preventable deaths of newborns and children under 5 years of age by 2030, universal health care coverage, reduction of premature mortality from noncommunicable diseases (NCDs) by 33% as well as support the development and research for medicines for both communicable and NCDs. Although some successes were achieved in combating communicable diseases and improved childhood mortality rates, health systems in Asia are generally characterized by lack of accurate epidemiological information on congenital disorders, lack of human and financial resources, and inadequate focus on public health strategies to ensure targeted interventions, low level knowledge on congenital disorders amongst the community and healthcare providers and the ethical dilemma of managing rare congenital disorders in an environment of low national health expenditures. These bottlenecks must be addressed systematically and interventions such as the use of innovative epidemiological tools to overcome lack of data, increased efforts to standardize rare disease nomenclature and classification and renewed interest in birth defects registries by countries in the region must be considered. Targeted curative and public health approaches currently used in thalassaemia and neural tube defects may be used for other congenital disorders in Asian countries. The implementation of congenital disorders-related research, prevention, care, and treatment delivery services must be integrated into existing health systems in order to be effective to achieve the targets of SDG2030.

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Surgically Correctable Congenital Anomalies: Reducing Morbidity and Mortality in the First 8000 Days of Life

et al. 2023

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Background Congenital anomalies are a leading cause of morbidity and mortality worldwide. We aimed to review the common surgically correctable congenital anomalies with recent updates on the global disease burden and identify the factors affecting morbidity and mortality. Method A literature review was done to assess the burden of surgical congenital anomalies with emphasis on those that present within the first 8000 days of life. The various patterns of diseases were analyzed in both low-and middleincome countries (LMIC) and high-income countries (HIC).Results Surgical problems such as digestive congenital anomalies, congenital heart disease and neural tube defects are now seen more frequently. The burden of disease weighs more heavily on LMIC. Cleft lip and palate has gained attention and appropriate treatment within many countries, and its care has been strengthened by global surgical partnerships. Antenatal scans and timely diagnosis are important factors affecting morbidity and mortality. The frequency of pregnancy termination following prenatal diagnosis of a congenital anomaly is lower in many LMIC than in HIC. Conclusion Congenital heart disease and neural tube defects are the most common congenital surgical diseases; however, easily treatable gastrointestinal anomalies are underdiagnosed due to the invisible nature of the condition. Current healthcare systems in most LMICs are still unprepared to tackle the burden of disease caused by congenital anomalies. Increased investment in surgical services is needed.

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Methods to estimate access to care and the effect of interventions on the outcomes of congenital disorders

Cited by 12 publications

References 63 publications

Estimates of global and regional prevalence of neural tube defects for 2015: a systematic analysis

Estimates of global and regional prevalence of neural tube defects for 2015: a systematic analysis

Achieving the targets of sustainable development goals (2030 agenda) for congenital disorders in Asia: Bottlenecks and interventions

Surgically Correctable Congenital Anomalies: Reducing Morbidity and Mortality in the First 8000 Days of Life

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