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Impact of regionalisation of a national rheumatic heart disease registry: the Ugandan experience
  1. Emmy Okello1,2,
  2. Chris T Longenecker3,4,
  3. Amy Scheel5,
  4. Twalib Aliku6,
  5. Joselyn Rwebembera1,7,
  6. Grace Mirembe8,
  7. Craig Sable5,
  8. Peter Lwabi1,
  9. Andrea Beaton5
  1. 1 Uganda Heart Institute, Kampala, Uganda
  2. 2 School of Medicine, Makerere University, Kampala, Uganda
  3. 3 Department of Medicine, Case Western Reserve University School of Medicine, Cleveland, Ohio, USA
  4. 4 Division of Cardiology, University Hospitals of Cleveland, Cleveland, Ohio, USA
  5. 5 Division of Cardiology, Children’s National Health System, Washington DC, USA
  6. 6 School of Medicine, Gulu University, Gulu, Uganda
  7. 7 Mbarara University of Sciences and Technology, Mbarara, Uganda
  8. 8 Joint Clinical Research Centre, Kampala, Uganda
  1. Correspondence to Dr Andrea Beaton, Division of Cardiology, Children’s National Health System, Washington DC 20010, USA; abeaton{at}childrensnational.org

Abstract

Objectives Rheumatic heart disease (RHD) remains a major driver of cardiovascular morbidity and mortality in low-resource settings. Registry-based care for RHD has been advocated as a powerful tool to improve clinical care and track quality metrics. Data collected through an RHD registry may also reveal epidemiological and geospatial trends, as well as insight into care utilisation. Uganda established a central RHD registry at the country’s only tertiary cardiac centre in 2010. In 2014 RHD care and registry enrolment expanded to the Western region and in 2015 to the North. Here, we examine the geographical distribution of RHD cases in Uganda and the impact of registry expansion.

Methods A retrospective search of the Ugandan national RHD registry was preformed to capture all cases of acute rheumatic fever or clinical RHD from January 2010 through July 2016. A geospatial analysis revealed that the density of detected cases (cases/100 000 district residents) reflected proximity to an RHD registry enrolment centre. Regionalisation improved the number of cases detected in the regions of expansion and improved retention of patients in care.

Results and conclusions RHD appears to have uniform distribution throughout Uganda with geographical clustering surrounding RHD registry enrolment centres reflecting access to care, rather than differences in prevalence. Higher rates of case detection and improved retention in care with regionalisation highlight the urgent need for decentralisation of cardiovascular services. Future studies should examine sustainable models for cardiovascular care delivery, including task shifting of clinical care and echocardiography and use of telemedicine.

  • rheumatic fever
  • valvular disease
  • epidemiology

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Footnotes

  • Contributors EO planned the study, analysed data and coauthored the first manuscript draft. CTL, AS, TA, JR, GM, CS and PL planned the study and critically reviewed the manuscript for scientific content. AB planned the study, analysed the data and coauthored the first manuscript draft.

  • Funding This work was supported by the Children’s National Global Health Initiative. Further support came from the Medtronic Global Health Foundation, Gift of Life International and General Electric.

  • Competing interests None declared.

  • Ethics approval Approval for this study was granted by the institutional review boards at Children’s National Health System, Washington DC (Pro00000451), Case Western Reserve University, Cleveland, Ohio (03-13-42), Makerere University College of Health Science, Kampala, Uganda (REF 2013–072) and the Uganda National Council for Science and Technology.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement All deidentified study data are available for use on request to the corresponding author.

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