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.

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.

Bridging community and clinic through digital health: Community-based adaptation of a mobile phone-based heart failure program for remote communities in Uganda.

Background: In Uganda, limited healthcare access has created a significant burden for patients living with heart failure. With the increasing use of mobile phones, digital health tools could offer an accessible platform for individualized care support. In 2016, our multi-national team adapted a mobile phone-based program for heart failure self-care to the Ugandan context and found that patients using the system showed improvements in their symptoms and quality of life. With approximately 84% of Ugandans residing in rural communities, the Medly Uganda program can provide greater benefit for communities in rural areas with limited access to care. To support the implementation of this program within rural communities, this study worked in partnership with two remote clinics in Northern Uganda to identify the cultural and service level requirements for the program. Methods: Using the principles from community-based research and user-centered design, we conducted a mixed-methods study composed of 4 participatory consensus cycles, 60 semi-structured interviews (SSI) and 8 iterative co-design meetings at two remote cardiac clinics. Patient surveys were also completed during each SSI to collect data related to cell phone access, community support, and geographic barriers. Qualitative data was analyzed using inductive thematic analysis. The Indigenous method of two-eyed seeing was also embedded within the analysis to help promote local perspectives regarding community care. Results: Five themes were identified. The burden of travel was recognized as the largest barrier for care, as patients were travelling up to 19 km by motorbike for clinic visits. Despite mixed views on traditional medicine, patients often turned to healers due to the cost of medication and transport. With most patients owning a non-smartphone (n = 29), all participants valued the use of a digital tool to improve equitable access to care. However, to sustain program usage, integrating the role of village health teams (VHTs) to support in-community follow-ups and medication delivery was recognized as pivotal. Conclusion: The use of a mobile phone-based digital health program can help to reduce the barrier of geography, while empowering remote HF self-care. By leveraging the trusted role of VHTs within the delivery of the program, this will help enable more culturally informed care closer to home. Supplementary Information: The online version contains supplementary material available at 10.1186/s44247-023-00020-5.

Establishment of a cardiac telehealth program to support cardiovascular diagnosis and care in a remote, resource-poor setting in Uganda.

INTRODUCTION: To address workforce shortages and expand access to care, we developed a telemedicine program incorporating existing infrastructure for delivery of cardiovascular care in Gulu, Northern Uganda. Our study had three objectives: 1) assess feasibility and clinical impact 2) evaluate patient/parent satisfaction and 3) estimate costs. METHODS: All cardiology clinic visits during a two-year study period were included. All patients received an electrocardiogram and echocardiogram performed by a local nurse in Gulu which were stored and transmitted to the Uganda Heart Institute in the capital of Kampala for remote consultation by a cardiologist. Results were relayed to patients/families following cardiologist interpretation. The following telemedicine process was utilized: 1) clinical intake by nurse in Gulu; 2) ECG and echocardiography acquisition in Gulu; 3) echocardiography transmission to the Uganda Heart Institute in Kampala, Uganda; 4) remote telemedicine consultation by cardiologists in Kampala; and 5) communication of results to patients/families in Gulu. Clinical care and technical aspects were tracked. Diagnoses and recommendations were analyzed by age groups (0-5 years, 6-21 years, 22-50 years and > 50 years). A mixed methods approach involving interviews and surveys was used to assess patient satisfaction. Healthcare sector costs of telemedicine-based cardiovascular care were estimated using time-driven activity-based costing. RESULTS: Normal studies made up 47%, 55%, 76% and 45% of 1,324 patients in the four age groups from youngest to oldest. Valvular heart disease (predominantly rheumatic heart disease) was the most common diagnosis in the older three age groups. Medications were prescribed to 31%, 31%, 24%, and 48% of patients in the four age groups. The median time for consultation was 7 days. A thematic analysis of focus group transcripts displayed an overall acceptance and appreciation for telemedicine, citing cost- and time-saving benefits. The cost of telemedicine was $29.48/visit. CONCLUSIONS: Our data show that transmission and interpretation of echocardiograms from a remote clinic in northern Uganda is feasible, serves a population with a high burden of heart disease, has a significant impact on patient care, is favorably received by patients, and can be delivered at low cost. Further study is needed to better assess the impact relative to existing standards of care and cost effectiveness.