Factors contributing to successful trauma registry implementation in low- and middle-income countries: A systematic review

St-Louis, Etienne; Paradis, Tiffany; Landry, Tara; Poenaru, Dan

doi:10.1016/j.injury.2018.10.007

Cited by 25 publications

(18 citation statements)

References 38 publications

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“…A majority of registries are formed and operated in high-income countries, where there is the presence of established health care systems to ease patients with respect to costs and follow-up appointments and the invaluable use of electronic health records. However, although they face unique challenges and obstacles [29], a number of registries are being successfully operated in LMICs [30,31], and the data obtained have a great impact on patient care and further research in a setting where there is a lack of availability of organized data.…”

Section: Benefits Of a Patient Registrymentioning

confidence: 99%

Assessing Health-Related Quality of Life, Morbidity, and Survival Status for Individuals With Down Syndrome in Pakistan (DS-Pak): Protocol for a Web-Based Collaborative Registry

Siddiqui¹,

Ladak²,

Kazi³

et al. 2021

JMIR Res Protoc

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Background Down syndrome is the most common chromosomal disorder, with a global incidence of 1 in 700 live births. However, the true prevalence, associated morbidities, and health-related quality of life (HRQOL) of these individuals and their families are not well documented, especially in low- and middle-income countries such as Pakistan. Disease-specific documentation in the form of a collaborative registry is required to better understand this condition and the associated health outcomes. This protocol paper describes the aims and processes for developing the first comprehensive, web-based collaborative registry for Down syndrome in a Pakistani cohort. Objective This study aims to assess the HRQOL, long-term survival, and morbidity of individuals with Down syndrome by using a web-based collaborative registry. Methods The registry data collection will be conducted at the Aga Khan University Hospital and at the Karachi Down Syndrome Program. Data will be collected by in-person interviews or virtually via telephone or video interviews. Participants of any age and sex with Down syndrome (trisomy 21) will be recruited. After receiving informed consent and assent, a series of tablet-based questionnaires will be administered. The questionnaires aim to assess the sociodemographic background, clinical status, and HRQOL of the participants and their families. Data will be uploaded to a secure cloud server to allow for real-time access to participant responses by the clinicians to plan prompt interventions. Patient safety and confidentiality will be maintained by using multilayer encryption and unique coded patient identifiers. The collected data will be analyzed using IBM SPSS Statistics for Windows, Version 22.0 (IBM Corporation), with the mean and SD of continuous variables being reported. Categorical variables will be analyzed with their percentages being reported and with a P value cutoff of .05. Multivariate regression analysis will be conducted to identify predictors related to the HRQOL in patients with Down syndrome. Survival analysis will be reported using the Kaplan-Meier survival curves. Results The web-based questionnaire is currently being finalized before the commencement of pilot testing. This project has not received funding at the moment (ethical review committee approval reference ID: 2020-3582-11145). Conclusions This registry will allow for a comprehensive understanding of Down syndrome in low- and middle-income countries. This can provide the opportunity for data-informed interventions, which are tailored to the specific needs of this patient population and their families. Although this web-based registry is a proof of concept, it has the potential to be expanded to national, regional, and international levels. International Registered Report Identifier (IRRID) PRR1-10.2196/24901

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Section: Benefits Of a Patient Registrymentioning

confidence: 99%

Assessing Health-Related Quality of Life, Morbidity, and Survival Status for Individuals With Down Syndrome in Pakistan (DS-Pak): Protocol for a Web-Based Collaborative Registry

Siddiqui¹,

Ladak²,

Kazi³

et al. 2021

JMIR Res Protoc

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“…Prior efforts to establish a trauma registry in Sri Lanka failed due to incomplete data entry, excessive workload, politically controlled processes, and the biggest challenge in an LMIC, funding 15. This new registry established a straightforward method to collect reproducible data.…”

Section: Lessons Learnt From Establishing the Trauma Registrymentioning

confidence: 99%

“…Quality improvement in trauma systems must be continually assessed through the registry to pursue effective measures and discontinue ones that do not improve outcomes 15. The WHO recommends implementation of morbidity and mortality conferences and preventable death reviews 23.…”

Section: Lessons Learnt From Establishing the Trauma Registrymentioning

confidence: 99%

Establishment of a road traffic trauma registry for northern Sri Lanka

et al. 2020

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Road traffic injuries are a neglected global public health problem. Over 1.25 million people are killed each year, and middle-income countries, which are motorising rapidly, are the hardest hit. Sri Lanka is dealing with an injury-related healthcare crisis, with a recent 85% increase in road traffic fatality rates. Road traffic crashes now account for 25 000 injuries annually and 10 deaths daily. Development of a trauma registry is the foundation for injury control, care and prevention. Five northern Sri Lankan provinces collaborated with Jaffna Teaching Hospital to develop a local electronic registry. The Centre for Clinical Excellence and Research was established to provide organisational leadership, hardware and software were purchased, and data collectors trained. Initial data collection was modified after implementation challenges were resolved. Between 1 June 2017 and 30 September 2017, 1708 injured patients were entered into the registry. Among these patients, 62% were male, 76% were aged 21–50, 71.3% were motorcyclists and 34% were in a collision with another motorcyclist. There were frequent collisions with uncontrolled livestock (12%) and with fixed objects (14%), and most patients were transported by private vehicles without prehospital care. Head (n=315) and lower extremity (n=497) injuries predominated. Establishment of a trauma registry in low-income and middle-income countries is a significant challenge and requires invested local leadership; the most challenging issue is ongoing funding. However, this pilot registry provides a valuable foundation, identifying unique injury mechanisms, establishing priorities for prevention and patient care, and introducing the concept of an organised system to this region.

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“…Patient data registries are a powerful tool for the collection of data in trauma research. 9 10 Registry data may be used for comparative effectiveness and cost-effectiveness research and may guide the development of standardized trauma protocols (STP). One retrospective cohort study investigating the use of an STP at a level-1 trauma center in Colombia found improved outcomes after STP implementation.…”

Section: Introductionmentioning

confidence: 99%

Neurotrauma Registry Implementation in Colombia: A Qualitative Assessment

Johnson

Oak

Griswold

et al. 2021

JNRP

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Objectives Latin America is among several regions of the world that lacks robust data on injuries due to neurotrauma. This research project sought to investigate a multi-institution brain injury registry in Colombia, South America, by conducting a qualitative study to identify factors affecting the creation and implementation of a multi-institution TBI registry in Colombia before the establishment of the current registry. Methods Key informant interviews and participant observation identified barriers and facilitators to the creation of a TBI registry at three health care institutions in this upper-middle-income country in South America. Results The study identified barriers to implementation involving incomplete clinical data, limited resources, lack of information and technology (IT) support, time constraints, and difficulties with ethical approval. These barriers mirrored similar results from other studies of registry implementation in low- and middle-income countries (LMICs). Ease of use and integration of data collection into the clinical workflow, local support for the registry, personal motivation, and the potential future uses of the registry to improve care and guide research were identified as facilitators to implementation. Stakeholders identified local champions and support from the administration at each institution as essential to the success of the project. Conclusion Barriers for implementation of a neurotrauma registry in Colombia include incomplete clinical data, limited resources and lack of IT support. Some factors for improving the implementation process include local support, personal motivation and potential uses of the registry data to improve care locally. Information from this study may help to guide future efforts to establish neurotrauma registries in Latin America and in LMICs.

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Factors contributing to successful trauma registry implementation in low- and middle-income countries: A systematic review

Cited by 25 publications

References 38 publications

Assessing Health-Related Quality of Life, Morbidity, and Survival Status for Individuals With Down Syndrome in Pakistan (DS-Pak): Protocol for a Web-Based Collaborative Registry

Assessing Health-Related Quality of Life, Morbidity, and Survival Status for Individuals With Down Syndrome in Pakistan (DS-Pak): Protocol for a Web-Based Collaborative Registry

Establishment of a road traffic trauma registry for northern Sri Lanka

Neurotrauma Registry Implementation in Colombia: A Qualitative Assessment

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