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.

A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy.

Background: Epilepsy is associated with stigma and negatively impacts the lives of people living with epilepsy (PLWE) and their immediate families. More understanding of the stigma and discrimination experienced by PLWE in sub-Saharan Africa is needed. Methods: In a cross-sectional, mixed methods study, forty- eight PLWE who met the study inclusion criteria were enrolled. In depth interviews and focus group discussions were conducted and were audiotaped and transcribed verbatim. Analysis was conducted using a thematic, constant comparative approach with an emphasis on dominant themes. Perceived stigma was measured using the Kilifi epilepsy stigma score. Associations between socio-demographic factors and Kilifi epilepsy stigma score were assessed. Results: The median age of the study participants was 25 years, with median age (IQR) of epilepsy onset of 12 (6-18) years. The prevalence of high-perceived stigma was 31.9% (15/48). Seizure frequency was associated with high levels of perceived stigma (p-value of 0.038). Psychological abuse, rejections at home, places of employment and schools, poor relationships and intimacy and unmet engagements in social activities were cited as the perceived stigmatizing aspects among PLWE. Conclusion: In this Ugandan sample perceived stigma remains unacceptably high and interventions to address it are urgently needed in our settings.

A mixed-methods, cross-sectional study of perceived stigma among Ugandans with epilepsy

Background: Epilepsy is associated with stigma and negatively impacts the lives of people living with epilepsy (PLWE) and their immediate families. More understanding of the stigma and discrimination experienced by PLWE in sub-Saharan Africa is needed. Methods: In a cross-sectional, mixed methods study, forty- eight PLWE who met the study inclusion criteria were enrolled. In depth interviews and focus group discussions were conducted and were audiotaped and transcribed verbatim. Analysis was conducted using a thematic, constant comparative approach with an emphasis on dominant themes. Perceived stigma was measured using the Kilifi epilepsy stigma score. Associations between socio-demographic factors and Kilifi epilepsy stigma score were assessed. Results: The median age of the study participants was 25 years, with median age (IQR) of epilepsy onset of 12 (6-18) years. The prevalence of high-perceived stigma was 31.9% (15/48). Seizure frequency was associated with high levels of perceived stigma (p-value of 0.038). Psychological abuse, rejections at home, places of employment and schools, poor relationships and intimacy and unmet engagements in social activities were cited as the perceived stigmatizing aspects among PLWE. Conclusion: In this Ugandan sample perceived stigma remains unacceptably high and interventions to address it are urgently needed in our settings.

Household Economic Consequences of Rheumatic Heart Disease in Uganda.

Background: Rheumatic heart disease (RHD) has declined dramatically in wealthier countries in the past three decades, but it remains endemic in many lower-resourced regions and can have significant costs to households. The objective of this study was to quantify the economic burden of RHD among Ugandans affected by RHD. Methods: This was a cross-sectional cost-of-illness study that randomly sampled 87 participants and their households from the Uganda National RHD registry between December 2018 and February 2020. Using a standardized survey instrument, we asked participants and household members about outpatient and inpatient RHD costs and financial coping mechanisms incurred over the past 12 months. We used descriptive statistics to analyze levels and distributions of costs and the frequency of coping strategies. Multivariate Poisson regression models were used to assess relationships between socioeconomic characteristics and utilization of financial coping mechanisms. Results: Most participants were young or women, demonstrating a wide variation in socioeconomic status. Outpatient and inpatient costs were primarily driven by transportation, medications, and laboratory tests, with overall RHD direct and indirect costs of $78 per person-year. Between 20 and 35 percent of households experienced catastrophic healthcare expenditure, with participants in the Northern and Western Regions 5-10 times more likely to experience such hardship and utilize financial coping mechanisms than counterparts in the Central Region, a wealthier area. Increases in total RHD costs were positively correlated with increasing use of coping behaviors. Conclusion: Ugandan households affected by RHD, particularly in lower-income areas, incur out-of-pocket costs that are very high relative to income, exacerbating the poverty trap. Universal health coverage policy reforms in Uganda should include mechanisms to reduce or eliminate out-of-pocket expenditures for RHD and other chronic diseases.

Barriers to epilepsy care in Central Uganda, a qualitative interview and focus group study involving PLWE and their caregivers.

BACKGROUND: Epilepsy is a common neurological disease with substantial impact on the subject and their caretakers. This exploratory study identified barriers to care for persons living with epilepsy (PLWE) to develop a culturally acceptable nurse led self-management intervention for PLWE previously developed in the United States. METHODS: The study involving 48 participants (31 PLWE and 17 caregivers) with in depth interviews and focus groups was conducted. We obtained insights into barriers to care in PLWE and their caregivers. Using a thematic analytic procedure emphasizing the dominant themes the qualitative responses were analyzed. Median age of PLWE was 24 years (IQR 19-30), and10 (52.6%) were male. The median age of epilepsy onset was 12 years (IQR 6-18), range of 1-37 years. The median age of caregivers was 50 years (IQR 45-50.5), with a range of 18-78 years. Seventy five percent of caregivers (6/8) were females. RESULTS: Three major areas of perceived barriers involving individual, family or community and provider and healthcare system barriers to epilepsy care emerged. Individual factors like limited epilepsy knowledge and medication non-adherence were reported to be key barriers to epilepsy care. Caregiver burden and lack of family support as well as poor health care access were identified from the family and health care systems. CONCLUSIONS: The main barrier to epilepsy care is limited epilepsy knowledge in PLWE and their caregivers. Improving epilepsy care awareness and knowledge within communities and appropriate health care provider service for epilepsy would help reduce epilepsy barriers and improve care.

Motivations of women in Uganda living with rheumatic heart disease: A mixed methods study of experiences in stigma, childbearing, anticoagulation, and contraception.

BACKGROUND: Rheumatic heart disease (RHD) is a leading cause of premature mortality in low- and middle-income countries (LMICs). Women of reproductive age are a unique and vulnerable group of RHD patients, due to increased risk of cardiovascular complications and death during pregnancy. Yet, less than 5% of women of childbearing age with RHD in LMICs use contraceptives, and one in five pregnant women with RHD take warfarin despite known teratogenicity. It is unclear whether this suboptimal contraception and anticoagulant use during pregnancy is due to lack of health system resources, limited health literacy, or social pressure to bear children. METHODS: We conducted a mixed methods study of 75 women living with RHD in Uganda. Questionnaires were administered to 50 patients. Transcripts from three focus groups with 25 participants were analyzed using qualitative description methodology. RESULTS: Several themes emerged from the focus groups, including pregnancy as a calculated risk; misconceptions about side-effects of contraceptives and anticoagulation; reproductive decision-making control by male partners, in-laws, or physicians; abandonment of patients by male partners; and considerable stigma against heart disease patients for both their reproductive and financial limitations (often worse than that directed against HIV patients). All questionnaire respondents were told by physicians that their hearts were not strong enough to support a pregnancy. Only 14% used contraception while taking warfarin. All participants felt that society would look poorly on a woman who cannot have children due to a heart condition. CONCLUSIONS: To our knowledge, this is the first qualitative study of female RHD patients and their attitudes toward cardiovascular disorders and reproduction. Our results suggest that health programs targeting heart disease in LMICs must pay special attention to the needs of women of childbearing age. There are opportunities for improved family/societal education programs and community engagement, leading to better outcomes and patient empowerment.

Community Perceptions of Barriers to Stroke Recovery and Prevention in Greater Kampala, Uganda: Implications for Policy and Practice.

OBJECTIVE: Stroke risk and stroke burden are increasing in Sub Saharan Africa. Qualitative analysis was used to assess perceived barriers to stroke recovery and prevention in an urban/suburban Ugandan population in order to refine and implement a promising nurse and peer-led self-management intervention previously conducted in the United States. METHODS: In depth interviews and focus groups were conducted with 48 participants (stroke survivors, caretakers, and those at risk for stroke. All interviews and focus groups were audiotaped, transcribed verbatim, and analyzed using content analysis, with an emphasis on dominant themes. RESULTS: Three major domains of perceived barriers to stroke recovery and prevention emerged from the data: (1) Individual barriers (PTSD, stress, resistance to seeking care, medication non-adherence, unhealthy lifestyles, functional impairment, and a paucity of stroke knowledge); (2) Family/community barriers (lack of family and community support and caretaker burden); and (3) Provider and healthcare system barriers (lack of access and inadequate follow-up). Importantly, participants in this study identified a pressing need for increasing stroke awareness in the community as part of recovery and prevention efforts. CONCLUSIONS: Stroke risk reduction efforts implemented at the patient, community, and healthcare system levels are needed. These efforts could, perhaps, be modeled along the lines of a previous very successful public health initiative to reduce HIV burden in Uganda.

A qualitative examination of secondary prophylaxis in rheumatic heart disease: factors influencing adherence to secondary prophylaxis in Uganda.

BACKGROUND: Rheumatic heart disease (RHD) is the most common cause of heart disease among Ugandans age 15 to 49 years. Secondary prophylaxis with monthly injection of benzathine penicillin is effective in preventing recurrence of acute rheumatic fever and worsening of RHD, but adherence rates are poor in Uganda. OBJECTIVES: This study sought to identify health behaviors, attitudes, and health care system factors that influence adherence to RHD secondary prophylaxis. METHODS: We conducted 5 structured focus groups with 36 participants on monthly penicillin injections for RHD in Kamplala, Uganda. Transcripts were analyzed using qualitative description analysis and health behavior models. RESULTS: Most participants were female (64%), from an urban area (81%), and had family income less than US$1 daily (69%). Ages ranged from 14 to 58 years. Median prophylaxis duration was 1.42 years and 58% were adherent (≥80% of injections). Key facilitators include perceived worsening of disease with missing injections, personal motivation, a reminder system for injections, supportive family and friends, and a positive relationship with health care providers. Barriers to adherence include lack of resources for transportation and medications, fear of injection pain, poor patient-provider communication, and poor availability of clinics and providers able to give injections. CONCLUSIONS: We identified key facilitators and barriers to secondary prophylaxis for RHD from the patient perspective framed within the socioecological model. Our findings provide direction for intervention development to improve national RHD secondary prophylaxis.