{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,1]],"date-time":"2026-05-01T21:21:07Z","timestamp":1777670467094,"version":"3.51.4"},"reference-count":36,"publisher":"Georg Thieme Verlag KG","issue":"05","license":[{"start":{"date-parts":[[2023,11,1]],"date-time":"2023-11-01T00:00:00Z","timestamp":1698796800000},"content-version":"vor","delay-in-days":31,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"funder":[{"name":"American Heart Association Strategically Focused Research Network","award":["20SFRN35380042"],"award-info":[{"award-number":["20SFRN35380042"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Appl Clin Inform"],"published-print":{"date-parts":[[2023,10]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>\n          Objective\u2003Most rheumatic heart disease (RHD) registries are static and centralized, collecting epidemiological and clinical data without providing tools to improve care. We developed a dynamic cloud-based RHD case management application with the goal of improving care for patients with RHD in Uganda.<\/jats:p><jats:p>\n          Methods\u2003The Active Community Case Management Tool (ACT) was designed to improve community-based case management for chronic disease, with RHD as the first test case. Global and local partner consultation informed selection of critical data fields and prioritization of application functionality. Multiple stages of review and revision culminated in user testing of the application at the Uganda Heart Institute.<\/jats:p><jats:p>\n          Results\u2003Global and local partners provided feedback of the application via survey and interview. The application was well received, and top considerations included avenues to import existing patient data, considering a minimum data entry form, and performing a situation assessment to tailor ACT to the health system setup for each new country. Test users completed a postuse survey. Responses were favorable regarding ease of use, desire to use the application in regular practice, and ability of the application to improve RHD care in Uganda. Concerns included appropriate technical skills and supports and potential disruption of workflow.<\/jats:p><jats:p>\n          Conclusion\u2003Creating the ACT application was a dynamic process, incorporating iterative feedback from local and global partners. Results of the user testing will help refine and optimize the application. The ACT application showed potential for utility and integration into existing care models in Uganda.<\/jats:p>","DOI":"10.1055\/s-0043-1774812","type":"journal-article","created":{"date-parts":[[2023,11,2]],"date-time":"2023-11-02T00:30:49Z","timestamp":1698885049000},"page":"866-877","source":"Crossref","is-referenced-by-count":3,"title":["Development and User Testing of a Dynamic Tool for Rheumatic Heart Disease Management"],"prefix":"10.1055","volume":"14","author":[{"given":"Sarah R.","family":"de Loizaga","sequence":"additional","affiliation":[{"name":"The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States"},{"name":"Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jafesi","family":"Pulle","sequence":"additional","affiliation":[{"name":"Uganda Heart Institute, Mulago Hospital, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joselyn","family":"Rwebembera","sequence":"additional","affiliation":[{"name":"Uganda Heart Institute, Mulago Hospital, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica","family":"Abrams","sequence":"additional","affiliation":[{"name":"Division of Paediatric Cardiology, Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa"},{"name":"Reach, Cape Town, South Africa"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jenifer","family":"Atala","sequence":"additional","affiliation":[{"name":"Uganda Heart Institute, Mulago Hospital, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emily","family":"Chesnut","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kristen","family":"Danforth","sequence":"additional","affiliation":[{"name":"Department of Global Health & Division of Cardiology, University of Washington, Seattle, Washington, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ndate","family":"Fall","sequence":"additional","affiliation":[{"name":"The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nicholas","family":"Felicelli","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Karen","family":"Lapthorn","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Chris T.","family":"Longenecker","sequence":"additional","affiliation":[{"name":"Department of Global Health & Division of Cardiology, University of Washington, Seattle, Washington, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Neema W.","family":"Minja","sequence":"additional","affiliation":[{"name":"Uganda Heart Institute, Mulago Hospital, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ryan A.","family":"Moore","sequence":"additional","affiliation":[{"name":"The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States"},{"name":"Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Riley","family":"Morrison","sequence":"additional","affiliation":[{"name":"Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jeremiah","family":"Mwangi","sequence":"additional","affiliation":[{"name":"Reach, Geneva, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Doreen","family":"Nakagaayi","sequence":"additional","affiliation":[{"name":"Uganda Heart Institute, Mulago Hospital, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Miriam","family":"Nakitto","sequence":"additional","affiliation":[{"name":"Uganda Heart Institute, Mulago Hospital, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Craig","family":"Sable","sequence":"additional","affiliation":[{"name":"Department of Cardiology, Children's National Medical Center, Washington, District of Columbia, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Amy","family":"Sanyahumbi","sequence":"additional","affiliation":[{"name":"Division of Pediatric Cardiology, Department of Pediatrics, Baylor College of Medicine, Texas Children's Hospital, Houston, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rachel","family":"Sarnacki","sequence":"additional","affiliation":[{"name":"Department of Cardiology, Children's National Medical Center, Washington, District of Columbia, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jenipher","family":"Thembo","sequence":"additional","affiliation":[{"name":"Uganda Heart Institute, Mulago Hospital, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sophie La","family":"Vincente","sequence":"additional","affiliation":[{"name":"Reach, Geneva, Switzerland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David","family":"Watkins","sequence":"additional","affiliation":[{"name":"Department of Global Health & Division of Cardiology, University of Washington, Seattle, Washington, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Liesl","family":"Z\u00fchlke","sequence":"additional","affiliation":[{"name":"Division of Cardiology and Paediatric Cardiology, Department of Medicine\/Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa"},{"name":"South African Medical Research Council, Cape Town, South Africa"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emmy","family":"Okello","sequence":"additional","affiliation":[{"name":"Uganda Heart Institute, Mulago Hospital, Kampala, Uganda"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andrea","family":"Beaton","sequence":"additional","affiliation":[{"name":"The Heart Institute, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States"},{"name":"Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Judith W.","family":"Dexheimer","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Cincinnati School of Medicine, Cincinnati, Ohio, United States"},{"name":"Division of Emergency Medicine and Department of Biomedical Informatics, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"194","published-online":{"date-parts":[[2023,11,1]]},"reference":[{"issue":"25","key":"ref1","first-page":"2982","article-title":"Global burden of cardiovascular diseases and risk factors, 1990-2019: update from the GBD 2019 Study","volume":"76","author":"G A Roth","year":"2020","journal-title":"J Am Coll Cardiol"},{"issue":"05","key":"ref2","doi-asserted-by":"crossref","first-page":"375","DOI":"10.1001\/jamacardio.2018.0385","article-title":"The burden of cardiovascular diseases among US states, 1990-2016","volume":"3","author":"G A Roth","year":"2018","journal-title":"JAMA Cardiol"},{"issue":"08","key":"ref3","doi-asserted-by":"crossref","first-page":"713","DOI":"10.1056\/NEJMoa1603693","article-title":"Global, regional, and national burden of rheumatic heart disease, 1990-2015","volume":"377","author":"D A Watkins","year":"2017","journal-title":"N Engl J Med"},{"issue":"22","key":"ref4","doi-asserted-by":"crossref","first-page":"4515","DOI":"10.3390\/ijerph16224515","article-title":"Risk factors for acute rheumatic fever: literature review and protocol for a case-control study in New Zealand","volume":"16","author":"M G Baker","year":"2019","journal-title":"Int J Environ Res Public Health"},{"issue":"19","key":"ref5","doi-asserted-by":"crossref","first-page":"e016851","DOI":"10.1161\/JAHA.120.016851","article-title":"Contemporary incidence and prevalence of rheumatic fever and rheumatic heart disease in Australia using linked data: the case for policy change","volume":"9","author":"J M Katzenellenbogen","year":"2020","journal-title":"J Am Heart Assoc"},{"issue":"07","key":"ref6","doi-asserted-by":"crossref","first-page":"1893","DOI":"10.3201\/eid2707.203045","article-title":"Ethnically disparate disease progression and outcomes among acute rheumatic fever patients in New Zealand, 1989-2015","volume":"27","author":"J Oliver","year":"2021","journal-title":"Emerg Infect Dis"},{"issue":"20","key":"ref7","first-page":"555","article-title":"Acute rheumatic fever and rheumatic heart disease among children\u2013American Samoa, 2011-2012","volume":"64","author":"A Beaudoin","year":"2015","journal-title":"MMWR Morb Mortal Wkly Rep"},{"issue":"16","key":"ref8","doi-asserted-by":"crossref","first-page":"e020992","DOI":"10.1161\/JAHA.120.020992","article-title":"Rheumatic heart disease in the United States: forgotten but not gone: results of a 10 year multicenter review","volume":"10","author":"S R de Loizaga","year":"2021","journal-title":"J Am Heart Assoc"},{"key":"ref9","doi-asserted-by":"crossref","first-page":"15084","DOI":"10.1038\/nrdp.2015.84","article-title":"Acute rheumatic fever and rheumatic heart disease","volume":"2","author":"J R Carapetis","year":"2016","journal-title":"Nat Rev Dis Primers"},{"issue":"24","key":"ref10","doi-asserted-by":"crossref","first-page":"e010223","DOI":"10.1161\/JAHA.118.010223","article-title":"How many doses make a difference? An analysis of secondary prevention of rheumatic fever and rheumatic heart disease","volume":"7","author":"J L de Dassel","year":"2018","journal-title":"J Am Heart Assoc"},{"issue":"03","key":"ref11","first-page":"CD002227","article-title":"Penicillin for secondary prevention of rheumatic fever","volume":"2002","author":"J Manyemba","year":"2002","journal-title":"Cochrane Database Syst Rev"},{"issue":"04","key":"ref12","doi-asserted-by":"crossref","first-page":"124","DOI":"10.5830\/CVJA-2013-022","article-title":"Benzathine penicillin adherence for secondary prophylaxis among patients affected with rheumatic heart disease attending Mulago Hospital","volume":"24","author":"C Musoke","year":"2013","journal-title":"Cardiovasc J S Afr"},{"issue":"11","key":"ref13","doi-asserted-by":"crossref","first-page":"e004037","DOI":"10.1161\/CIRCOUTCOMES.117.004037","article-title":"Rheumatic heart disease treatment cascade in Uganda","volume":"10","author":"C T Longenecker","year":"2017","journal-title":"Circ Cardiovasc Qual Outcomes"},{"issue":"03","key":"ref14","doi-asserted-by":"crossref","first-page":"227","DOI":"10.1016\/j.gheart.2013.08.011","article-title":"Benzathine penicillin G for the management of RHD: concerns about quality and access, and opportunities for intervention and improvement","volume":"8","author":"R Wyber","year":"2013","journal-title":"Glob Heart"},{"issue":"01","key":"ref15","doi-asserted-by":"crossref","first-page":"63","DOI":"10.1016\/j.gheart.2014.10.001","article-title":"A qualitative examination of secondary prophylaxis in rheumatic heart disease: factors influencing adherence to secondary prophylaxis in Uganda","volume":"10","author":"D M Huck","year":"2015","journal-title":"Glob Heart"},{"issue":"01","key":"ref16","doi-asserted-by":"crossref","first-page":"166","DOI":"10.1186\/s12872-016-0344-x","article-title":"Sharing success - understanding barriers and enablers to secondary prophylaxis delivery for rheumatic fever and rheumatic heart disease","volume":"16","author":"J Chamberlain-Salaun","year":"2016","journal-title":"BMC Cardiovasc Disord"},{"issue":"01","key":"ref17","doi-asserted-by":"crossref","first-page":"201","DOI":"10.1186\/s12939-017-0700-1","article-title":"Enablers and barriers to secondary prophylaxis for rheumatic fever among M\u0101ori aged 14-21 in New Zealand: a framework method study","volume":"16","author":"H Barker","year":"2017","journal-title":"Int J Equity Health"},{"issue":"01","key":"ref18","doi-asserted-by":"crossref","first-page":"68","DOI":"10.4103\/apc.APC_135_17","article-title":"Prevention and control of rheumatic heart disease: overcoming core challenges in resource-poor environments","volume":"11","author":"S Dougherty","year":"2018","journal-title":"Ann Pediatr Cardiol"},{"issue":"09","key":"ref19","doi-asserted-by":"crossref","first-page":"755","DOI":"10.1002\/hec.839","article-title":"Why do the sick not utilise health care? The case of Zambia","volume":"12","author":"C Hjortsberg","year":"2003","journal-title":"Health Econ"},{"issue":"02","key":"ref20","doi-asserted-by":"crossref","first-page":"93","DOI":"10.3390\/ijerph2007040002","article-title":"Inequities in the global health workforce: the greatest impediment to health in sub-Saharan Africa","volume":"4","author":"S C Anyangwe","year":"2007","journal-title":"Int J Environ Res Public Health"},{"issue":"03","key":"ref21","doi-asserted-by":"crossref","first-page":"225","DOI":"10.2471\/BLT.08.051599","article-title":"The health worker shortage in Africa: are enough physicians and nurses being trained?","volume":"87","author":"Y Kinfu","year":"2009","journal-title":"Bull World Health Organ"},{"issue":"20","key":"ref22","doi-asserted-by":"crossref","first-page":"e337","DOI":"10.1161\/CIR.0000000000000921","article-title":"Contemporary diagnosis and management of rheumatic heart disease: implications for closing the gap: a scientific statement from the American Heart Association","volume":"142","author":"R K Kumar","year":"2020","journal-title":"Circulation"},{"issue":"05","key":"ref23","doi-asserted-by":"crossref","first-page":"284","DOI":"10.1038\/nrcardio.2013.34","article-title":"Position statement of the World Heart Federation on the prevention and control of rheumatic heart disease","volume":"10","author":"B Remenyi","year":"2013","journal-title":"Nat Rev Cardiol"},{"issue":"04","key":"ref24","doi-asserted-by":"crossref","first-page":"535","DOI":"10.1016\/j.ahj.2012.01.003","article-title":"Rationale and design of a global rheumatic heart disease registry: the REMEDY study","volume":"163","author":"G Karthikeyan","year":"2012","journal-title":"Am Heart J"},{"issue":"02","key":"ref25","doi-asserted-by":"crossref","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","article-title":"Research electronic data capture (REDCap)\u2013a metadata-driven methodology and workflow process for providing translational research informatics support","volume":"42","author":"P A Harris","year":"2009","journal-title":"J Biomed Inform"},{"issue":"02","key":"ref26","doi-asserted-by":"crossref","first-page":"e20190580","DOI":"10.1542\/peds.2019-0580","article-title":"Improving information sharing for youth in foster care","volume":"144","author":"M V Greiner","year":"2019","journal-title":"Pediatrics"},{"issue":"01","key":"ref27","doi-asserted-by":"crossref","first-page":"e000469","DOI":"10.1136\/tsaco-2020-000469","article-title":"Maximizing the potential of trauma registries in low-income and middle-income countries","volume":"5","author":"L Rosenkrantz","year":"2020","journal-title":"Trauma Surg Acute Care Open"},{"issue":"04","key":"ref28","doi-asserted-by":"crossref","first-page":"649","DOI":"10.1038\/s41591-022-01738-x","article-title":"Priorities for cancer research in low- and middle-income countries: a global perspective","volume":"28","author":"C S Pramesh","year":"2022","journal-title":"Nat Med"},{"issue":"06","key":"ref29","doi-asserted-by":"crossref","first-page":"521","DOI":"10.1111\/j.1467-842X.2005.tb00243.x","article-title":"Assessment of a register-based rheumatic heart disease secondary prevention program in an Australian Aboriginal community","volume":"29","author":"S Eissa","year":"2005","journal-title":"Aust N Z J Public Health"},{"issue":"06","key":"ref30","doi-asserted-by":"crossref","first-page":"227","DOI":"10.5830\/CVJA-2015-058","article-title":"An open-access, mobile compatible, electronic patient register for rheumatic heart disease (\u2018eRegister\u2019) based on the World Heart Federation's framework for patient registers","volume":"26","author":"J van Dam","year":"2015","journal-title":"Cardiovasc J S Afr"},{"key":"ref31","first-page":"50","article-title":"Adequate adherence to benzathine penicillin secondary prophylaxis following the diagnosis of rheumatic heart disease by echocardiographic screening","volume":"130","author":"N Culliford-Semmens","year":"2017","journal-title":"N Z Med J"},{"issue":"01","key":"ref32","doi-asserted-by":"crossref","first-page":"e010981","DOI":"10.1136\/heartasia-2017-010981","article-title":"Impact of regionalisation of a national rheumatic heart disease registry: the Ugandan experience","volume":"10","author":"E Okello","year":"2018","journal-title":"Heart Asia"},{"issue":"04","key":"ref33","doi-asserted-by":"crossref","first-page":"1007","DOI":"10.4338\/ACI-2016-03-RA-0036","article-title":"Usability and workflow evaluation of \u201cRhEumAtic Disease activitY\u201d (READY). A mobile application for rheumatology patients and providers","volume":"7","author":"P Y Yen","year":"2016","journal-title":"Appl Clin Inform"},{"issue":"08","key":"ref34","doi-asserted-by":"crossref","first-page":"780","DOI":"10.1056\/NEJMe1705840","article-title":"Rheumatic heart disease - an iceberg in tropical waters","volume":"377","author":"E Marijon","year":"2017","journal-title":"N Engl J Med"},{"issue":"12","key":"ref35","doi-asserted-by":"crossref","first-page":"881","DOI":"10.2471\/BLT.14.148874","article-title":"A telemedicine network for remote paediatric cardiology services in north-east Brazil","volume":"93","author":"SdaS Mattos","year":"2015","journal-title":"Bull World Health Organ"},{"issue":"06","key":"ref36","first-page":"471","article-title":"Impact of telemedicine in the screening for congenital heart disease in a center from northeast Brazil","volume":"62","author":"J S de Ara\u00fajo","year":"2016","journal-title":"J Trop Pediatr"}],"container-title":["Applied Clinical Informatics"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/www.thieme-connect.de\/products\/ejournals\/pdf\/10.1055\/s-0043-1774812.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,11,2]],"date-time":"2023-11-02T00:31:17Z","timestamp":1698885077000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.thieme-connect.de\/DOI\/DOI?10.1055\/s-0043-1774812"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,10]]},"references-count":36,"journal-issue":{"issue":"05","published-online":{"date-parts":[[2023,10,18]]},"published-print":{"date-parts":[[2023,10]]}},"URL":"https:\/\/doi.org\/10.1055\/s-0043-1774812","archive":["Portico","CLOCKSS"],"relation":{},"ISSN":["1869-0327"],"issn-type":[{"value":"1869-0327","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,10]]}}}