Evaluating the implementation of a dynamic digital application to enable community-based decentralisation of rheumatic heart disease case management in Uganda: protocol for a hybrid type III effectiveness-implementation study
Emmy Okello,
Craig Sable,
David A Watkins,
Chris T Longenecker,
Jessica Abrams,
Andrea Zawacki Beaton,
Joselyn Rwebembera,
Jenifer Atala,
Jafesi Pulle,
Rachel Sarnacki,
Nicholas Ollberding,
Ndate Fall,
Yanfang Su,
Linda Oyella,
Kristen Danforth,
Neema W Minja,
Sarah R de Loizaga,
Jenipher Kamarembo,
Francis Odong,
Haddy Nalubwama,
Doreen Nakagaayi,
Judith W Dexheimer
Affiliations
Emmy Okello
Department of Medicine, Makerere University College of Health Sciences, Kampala, Uganda
Craig Sable
11 Department of Cardiology, Children’s National Medical Center, Washington, District of Columbia, USA
David A Watkins
Department of Global Health, University of Washington, Seattle, Washington, USA
Chris T Longenecker
Division of Cardiology, University of Washington School of Medicine, Seattle, Washington, USA
Jessica Abrams
Division of Paediatric Cardiology, Department of Paediatrics and Child Health, University of Cape Town Faculty of Health Sciences, Rondebosch, South Africa
Andrea Zawacki Beaton
5 The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USA
Joselyn Rwebembera
4 Department of Adult Cardiology, Uganda Heart Institute Ltd, Kampala, Uganda
Jenifer Atala
3 Rheumatic Heart Disease Research Collaborative, Uganda Heart Institute, Kampala, Uganda
Jafesi Pulle
3 Rheumatic Heart Disease Research Collaborative, Uganda Heart Institute, Kampala, Uganda
Rachel Sarnacki
11 Department of Cardiology, Children’s National Medical Center, Washington, District of Columbia, USA
Nicholas Ollberding
7 Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio, USA
Ndate Fall
2Cincinnati Children’s Hospital Medical Center, Rheumatology, Cincinnati, United States of America
Yanfang Su
Department of Global Health, University of Washington, Seattle, Washington, USA
Linda Oyella
3 Rheumatic Heart Disease Research Collaborative, Uganda Heart Institute, Kampala, Uganda
Kristen Danforth
1 Department of Global Health, University of Washington, Seattle, Washington, USA
Neema W Minja
2 Kilimanjaro Clinical Research Institute (KCRI), Moshi, Tanzania, United Republic of
Sarah R de Loizaga
5 The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USA
Jenipher Kamarembo
3 Rheumatic Heart Disease Research Collaborative, Uganda Heart Institute, Kampala, Uganda
Francis Odong
3 Rheumatic Heart Disease Research Collaborative, Uganda Heart Institute, Kampala, Uganda
Haddy Nalubwama
10 Department is Obstetrics and Gynaecology, Makerere University College of Health Sciences, Kampala, Uganda
Doreen Nakagaayi
4 Department of Adult Cardiology, Uganda Heart Institute Ltd, Kampala, Uganda
Judith W Dexheimer
12 Department of Biomedical Informatics, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USA
Introduction Rheumatic heart disease (RHD) affects over 39 million people worldwide, the majority in low-income and middle-income countries. Secondary antibiotic prophylaxis (SAP), given every 3–4 weeks can improve outcomes, provided more than 80% of doses are received. Poor adherence is strongly correlated with the distance travelled to receive prophylaxis. Decentralising RHD care has the potential to bridge these gaps and at least maintain or potentially increase RHD prophylaxis uptake. A package of implementation strategies was developed with the aim of reducing barriers to optimum SAP uptake.Methods and analysis A hybrid implementation-effectiveness study type III was designed to evaluate the effectiveness of a package of implementation strategies including a digital, cloud-based application to support decentralised RHD care, integrated into the public healthcare system in Uganda. Our overarching hypothesis is that secondary prophylaxis adherence can be maintained or improved via a decentralisation strategy, compared with the centralised delivery strategy, by increasing retention in care. To evaluate this, eligible patients with RHD irrespective of their age enrolled at Lira and Gulu hospital registry sites will be consented for decentralised care at their nearest participating health centre. We estimated a sample size of 150–200 registrants. The primary outcome will be adherence to secondary prophylaxis while detailed implementation measures will be collected to understand barriers and facilitators to decentralisation, digital application tool adoption and ultimately its use and scale-up in the public healthcare system.Ethics and dissemination This study was approved by the Institutional Review Board (IRB) at Cincinnati Children’s Hospital Medical Center (IRB 2021-0160) and Makerere University School of Medicine Research Ethics Committee (Mak-SOMREC-2021-61). Participation will be voluntary and informed consent or assent (>8 but <18) will be obtained prior to participation. At completion, study findings will be communicated to the public, key stakeholders and submitted for publication.
