Elly Katabira
Current Organizations / Institutes
The organizations/institutes from the scholar's latest article
Previous Organizations / Institutes
The organizations / institutes from the scholar's other articles in the past ten years
Research Subjects
Research Interests
Elly Katabira has a total of 234 co-authors. Here are the top co-authors by number of shared publications:
- Mark Kaddumukasa
Department of Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda
17 shared publications - Martha Sajatovic
Case Western Reserve University School of Medicine Cleveland Ohio USA
14 shared publications - Edward Ddumba
St. Francis Hospital Nsambya Affiliated to Uganda Martyrs University, Kampala, Uganda
5 shared publications - James Kayima
Uganda Heart Institute, Kampala, Uganda
5 shared publications - Levicatus Mugenyi
MRC/UVRI and LSHTM Uganda Research Unit, Entebbe, Uganda
5 shared publications - Nelson Kaulukusi Sewankambo
Makerere University, Kampala, Uganda
5 shared publications
Latest Publications
- Open Access
- 13 October 2026
- Published by Springer Nature in Research Involvement and Engagement
- Vol. 12 (1) , 168
Co-designing engagement principles for involving children and young people in palliative care research in low- and middle-income settings
- 13 October 2026
- Published by Springer Nature in Research Involvement and Engagement
- Vol. 12 (1) , 168
Open AccessCo-designing engagement principles for involving children and young people in palliative care research in low- and middle-income settings
- Open Access
- 1 January 2026
- Published by Wiley in Stroke Research and Treatment
- Vol. 2026 (1)
Dyslipidemia and Associated Factors Among a High‐Risk Population for Stroke: A Cross‐Sectional Study
Aims: Dyslipidemia is a major modifiable risk factor for stroke; however, it is poorly understood among patients at risk of stroke in Uganda. This study is aimed at determining the prevalence of dyslipidemia and identifying associated factors among a Ugandan sample at risk for stroke. Methods: This was a hospital based cross‐sectional study conducted across three Ugandan sites. The serum lipid levels were determined following the National Cholesterol Education Program guidelines. Data were analyzed with STATA employing univariable and multivariable logistic regression. Statistical significance was set at p < 0.05. Results: We enrolled 247 study participants with a mean age (SD) of 55.4 (12.0) years. Majority of the participants were female, n = 168 (68%). About 81% ( N = 199) had elevated serum lipid levels. Sixty‐one (24.7%) had elevated levels of total serum cholesterol, whereas half of female participants had abnormally low levels of HDL cholesterol. About a third ( N = 82 and 84, respectively) had elevated serum LDL and triglycerides. Nearly 40% ( N = 98) were obese and 23.5% had a sedentary lifestyle ( N = = 58). Only 20.2% ( N = 50) were receiving lipid lowering drugs. Prior family stroke history and personal history of stroke had lower odds of 58% (AOR = 0.42, 95% CI: 0.20–0.88, p = 0.022); and 64% (AOR = 0.36, 95% CI: 0.17–0.76, p = 0.008), respectively, of having dyslipidemia. Conclusions: Approximately four in five Ugandans at risk of stroke have dyslipidemia. The majority also have low HDL‐c levels. Implementation of systematic screening and provision of statin therapy among those at high risk for stroke is urgently needed to reduce stroke burden in Uganda. Trial Registration: ClinicalTrials.gov identifier: NCT04685408
- 1 January 2026
- Published by Wiley in Stroke Research and Treatment
- Vol. 2026 (1)
Open AccessDyslipidemia and Associated Factors Among a High‐Risk Population for Stroke: A Cross‐Sectional Study
Aims: Dyslipidemia is a major modifiable risk factor for stroke; however, it is poorly understood among patients at risk of stroke in Uganda. This study is aimed at determining the prevalence of dyslipidemia and identifying associated factors among a Ugandan sample at risk for stroke. Methods: This was a hospital based cross‐sectional study conducted across three Ugandan sites. The serum lipid levels were determined following the National Cholesterol Education Program guidelines. Data were analyzed with STATA employing univariable and multivariable logistic regression. Statistical significance was set at p < 0.05. Results: We enrolled 247 study participants with a mean age (SD) of 55.4 (12.0) years. Majority of the participants were female, n = 168 (68%). About 81% ( N = 199) had elevated serum lipid levels. Sixty‐one (24.7%) had elevated levels of total serum cholesterol, whereas half of female participants had abnormally low levels of HDL cholesterol. About a third ( N = 82 and 84, respectively) had elevated serum LDL and triglycerides. Nearly 40% ( N = 98) were obese and 23.5% had a sedentary lifestyle ( N = = 58). Only 20.2% ( N = 50) were receiving lipid lowering drugs. Prior family stroke history and personal history of stroke had lower odds of 58% (AOR = 0.42, 95% CI: 0.20–0.88, p = 0.022); and 64% (AOR = 0.36, 95% CI: 0.17–0.76, p = 0.008), respectively, of having dyslipidemia. Conclusions: Approximately four in five Ugandans at risk of stroke have dyslipidemia. The majority also have low HDL‐c levels. Implementation of systematic screening and provision of statin therapy among those at high risk for stroke is urgently needed to reduce stroke burden in Uganda. Trial Registration: ClinicalTrials.gov identifier: NCT04685408
- Open Access
- 14 October 2022
- Published by Wolters Kluwer Health in Medicine
- Vol. 101 (41) , e31012
Cognitive functioning and prevalence of seizures among older persons in Uganda: A hospital-based, cross-sectional study
There is limited data on the prevalence of seizures and dementia among older persons in Uganda. We evaluated cognitive functioning, and the prevalence and factors associated with seizures among older persons attending an outpatient medical clinic in Uganda. We randomly selected older adults (60 years and above) attending Kiruddu National Referral Hospital medical outpatient clinics between October 2020 and March 2021. We excluded individuals with a history of head injury, brain tumors, mental retardation, co-morbidity with HIV and patients who have had recent brain surgery. Cognitive functioning was assessed using the Identification for Dementia in Elderly Africans (IDEA) tool. We enrolled 407 participants, with a median (inter-quartile range) age of 67 (64–73) years. Majority were female (n = 292, 71.7%). The prevalence of seizure was 1.5% (95% confidence interval [CI]: 0.7–3.3). All 6 participants reported generalized tonic-clonic seizure type. Self-reported seizure was associated with being female (adjusted prevalence ratio [aPR]: 0.79, 95%CI: 0. 67–0.93, P = .02) and residing in Mukono district (aPR: 17.26, 95%CI: 1.64–181.55, P = .018). Overall, 114 (28.1%) participants had cognitive deficit; 9 (2.2%) dementia and 105 (25.9%) impaired cognition. Cognitive deficit was independently associated with female gender (aPR: 0.61, 95%CI: 0.44–0.85, P = .003), formal employment (aPR: 0.53, 95%CI: 0.35–0.81, P = .003), age 70–74 (aPR: 1.69, 95%CI: 1.00–2.86, P = .049), and ≥ 75 years (aPR: 2.81, 95%CI: 1.71–4.61, P = .001). Prevalence of seizures among participants with cognitive deficit was 5.3% (6/114). Among older persons attending a medical clinic in Uganda, almost one-third had cognitive deficit with seizure prevalence being higher among these individuals.
- 14 October 2022
- Published by Wolters Kluwer Health in Medicine
- Vol. 101 (41) , e31012
Open AccessCognitive functioning and prevalence of seizures among older persons in Uganda: A hospital-based, cross-sectional study
There is limited data on the prevalence of seizures and dementia among older persons in Uganda. We evaluated cognitive functioning, and the prevalence and factors associated with seizures among older persons attending an outpatient medical clinic in Uganda. We randomly selected older adults (60 years and above) attending Kiruddu National Referral Hospital medical outpatient clinics between October 2020 and March 2021. We excluded individuals with a history of head injury, brain tumors, mental retardation, co-morbidity with HIV and patients who have had recent brain surgery. Cognitive functioning was assessed using the Identification for Dementia in Elderly Africans (IDEA) tool. We enrolled 407 participants, with a median (inter-quartile range) age of 67 (64–73) years. Majority were female (n = 292, 71.7%). The prevalence of seizure was 1.5% (95% confidence interval [CI]: 0.7–3.3). All 6 participants reported generalized tonic-clonic seizure type. Self-reported seizure was associated with being female (adjusted prevalence ratio [aPR]: 0.79, 95%CI: 0. 67–0.93, P = .02) and residing in Mukono district (aPR: 17.26, 95%CI: 1.64–181.55, P = .018). Overall, 114 (28.1%) participants had cognitive deficit; 9 (2.2%) dementia and 105 (25.9%) impaired cognition. Cognitive deficit was independently associated with female gender (aPR: 0.61, 95%CI: 0.44–0.85, P = .003), formal employment (aPR: 0.53, 95%CI: 0.35–0.81, P = .003), age 70–74 (aPR: 1.69, 95%CI: 1.00–2.86, P = .049), and ≥ 75 years (aPR: 2.81, 95%CI: 1.71–4.61, P = .001). Prevalence of seizures among participants with cognitive deficit was 5.3% (6/114). Among older persons attending a medical clinic in Uganda, almost one-third had cognitive deficit with seizure prevalence being higher among these individuals.
- Open Access
- 14 June 2021
- Published by JMIR Publications Inc. in JMIR mHealth and uHealth
- Vol. 9 (6) , e17418
Acceptability of a Mobile Phone Support Tool (Call for Life Uganda) for Promoting Adherence to Antiretroviral Therapy Among Young Adults in a Randomized Controlled Trial: Exploratory Qualitative Study
Background: Adherence to treatment is critical for successful treatment outcomes. Although factors influencing antiretroviral therapy (ART) adherence vary, young adults are less likely to adhere owing to psychosocial issues such as stigma, ART-related side effects, and a lack of access to treatment. The Call for Life Uganda (CFLU) mobile health (mHealth) tool is a mobile phone–based technology that provides text messages or interactive voice response functionalities through a web interface and offers 4 modules of support. Objective: This study aims to describe the acceptability and feasibility of a mobile phone support tool to promote adherence to ART among young adults in a randomized controlled trial. Methods: An exploratory qualitative design with a phenomenological approach at 2 study sites was used. A total of 17 purposively selected young adults with HIV infection who had used the mHealth tool CFLU from 2 clinics were included. In total, 11 in-depth interviews and 1 focus group discussion were conducted to examine the following topics: experience with the CFLU tool (benefits and challenges), components of the tool, the efficiency of the system (level of comfort, ease, or difficulty in using the system), how CFLU resolved adherence challenges, and suggestions to improve CFLU. Participants belonged to 4 categories of interest: young adults on ART for the prevention of mother-to-child transmission, young adults switching to or on the second-line ART, positive partners in an HIV-discordant relationship, and young adults initiating the first-line ART. All young adults had 12 months of daily experience using the tool. Data were analyzed using NVivo version 11 software (QSR International Limited) based on a thematic approach. Results: The CFLU mHealth tool was perceived as an acceptable intervention; young adults reported improvement in medication adherence, strengthened clinician-patient relationships, and increased health knowledge from health tips. Appointment reminders and symptom reporting were singled out as beneficial and helped to address the problems of forgetfulness and stigma-related issues. HIV-related stigma was reported by a few young people. Participants requested extra support for scaling up CFLU to make it more youth friendly. Improving the tool to reduce technical issues, including network outages and a period of software failure, was suggested. They suggested that in addition to digital solutions, other support, including the promotion of peer support meetings and the establishment of a designated space and staff members for youth, was also important. Conclusions: This mHealth tool was an acceptable and feasible strategy for improving ART adherence and retention among young adults in resource-limited settings. Trial Registration: ClinicalTrials.gov NCT02953080; https://clinicaltrials.gov/ct2/show/NCT02953080
- 14 June 2021
- Published by JMIR Publications Inc. in JMIR mHealth and uHealth
- Vol. 9 (6) , e17418
Open AccessAcceptability of a Mobile Phone Support Tool (Call for Life Uganda) for Promoting Adherence to Antiretroviral Therapy Among Young Adults in a Randomized Controlled Trial: Exploratory Qualitative Study
Background: Adherence to treatment is critical for successful treatment outcomes. Although factors influencing antiretroviral therapy (ART) adherence vary, young adults are less likely to adhere owing to psychosocial issues such as stigma, ART-related side effects, and a lack of access to treatment. The Call for Life Uganda (CFLU) mobile health (mHealth) tool is a mobile phone–based technology that provides text messages or interactive voice response functionalities through a web interface and offers 4 modules of support. Objective: This study aims to describe the acceptability and feasibility of a mobile phone support tool to promote adherence to ART among young adults in a randomized controlled trial. Methods: An exploratory qualitative design with a phenomenological approach at 2 study sites was used. A total of 17 purposively selected young adults with HIV infection who had used the mHealth tool CFLU from 2 clinics were included. In total, 11 in-depth interviews and 1 focus group discussion were conducted to examine the following topics: experience with the CFLU tool (benefits and challenges), components of the tool, the efficiency of the system (level of comfort, ease, or difficulty in using the system), how CFLU resolved adherence challenges, and suggestions to improve CFLU. Participants belonged to 4 categories of interest: young adults on ART for the prevention of mother-to-child transmission, young adults switching to or on the second-line ART, positive partners in an HIV-discordant relationship, and young adults initiating the first-line ART. All young adults had 12 months of daily experience using the tool. Data were analyzed using NVivo version 11 software (QSR International Limited) based on a thematic approach. Results: The CFLU mHealth tool was perceived as an acceptable intervention; young adults reported improvement in medication adherence, strengthened clinician-patient relationships, and increased health knowledge from health tips. Appointment reminders and symptom reporting were singled out as beneficial and helped to address the problems of forgetfulness and stigma-related issues. HIV-related stigma was reported by a few young people. Participants requested extra support for scaling up CFLU to make it more youth friendly. Improving the tool to reduce technical issues, including network outages and a period of software failure, was suggested. They suggested that in addition to digital solutions, other support, including the promotion of peer support meetings and the establishment of a designated space and staff members for youth, was also important. Conclusions: This mHealth tool was an acceptable and feasible strategy for improving ART adherence and retention among young adults in resource-limited settings. Trial Registration: ClinicalTrials.gov NCT02953080; https://clinicaltrials.gov/ct2/show/NCT02953080
- Open Access
- 7 December 2020
- Published by Springer Nature in BMC Nephrology
- Vol. 21 (1) , 1-13
Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study
Background: The prevalence of chronic kidney disease is on the rise globally and in sub-Saharan Africa. Due to its “silent” nature, many patients often present with advanced disease. At this point options for care are often limited to renal replacement therapies such as hemodialysis and kidney transplantation. In resource limited settings, these options are associated with catastrophic expenditures and increased household poverty levels. Early palliative care interventions, if shown to ensure comparable quality of life (QoL), can significantly mitigate this by focusing care on comfort, symptom control and QoL rather than primarily on prolonging survival. Methods: A mixed methods longitudinal study, recruiting patients with End Stage Renal Disease (ESRD) on hemodialysis or conservative management and following them up over 12 months. The study aims are to: 1) measure and compare the health-related quality of life (HRQoL) scores of patients with ESRD receiving hemodialysis with those receiving conservative management, 2) measure and compare the palliative care needs and outcomes of patients in the two groups, 3) explore the impact of treatment modality and demographic, socio-economic and financial factors on QoL and palliative care needs and outcomes, 4) review patient survival over 12 months and 5) explore the patients’ lived experiences. The Kidney Disease Quality Of Life Short Form version 1.3 (KDQOL-SF) will be used to measure HRQoL; the African Palliative Care Association Palliative care Outcome Score (APCA POS) and the Palliative care Outcome Score for renal symptoms (POS-S Renal) will be used to assess palliative care needs and outcomes; and semi-structured in-depth interviews to explore the patients’ experiences of living with ESRD. Data collection will be carried out at 0, 3, 6, 9 and 12 months. Discussion: To the best of our knowledge, no similar study has been conducted in sub-Saharan Africa. This will be an important step towards raising awareness of patients’ need and preferences and the strengths and limitations of available health care services for ESRD in resource limited settings.
- 7 December 2020
- Published by Springer Nature in BMC Nephrology
- Vol. 21 (1) , 1-13
Open AccessHealth-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study
Background: The prevalence of chronic kidney disease is on the rise globally and in sub-Saharan Africa. Due to its “silent” nature, many patients often present with advanced disease. At this point options for care are often limited to renal replacement therapies such as hemodialysis and kidney transplantation. In resource limited settings, these options are associated with catastrophic expenditures and increased household poverty levels. Early palliative care interventions, if shown to ensure comparable quality of life (QoL), can significantly mitigate this by focusing care on comfort, symptom control and QoL rather than primarily on prolonging survival. Methods: A mixed methods longitudinal study, recruiting patients with End Stage Renal Disease (ESRD) on hemodialysis or conservative management and following them up over 12 months. The study aims are to: 1) measure and compare the health-related quality of life (HRQoL) scores of patients with ESRD receiving hemodialysis with those receiving conservative management, 2) measure and compare the palliative care needs and outcomes of patients in the two groups, 3) explore the impact of treatment modality and demographic, socio-economic and financial factors on QoL and palliative care needs and outcomes, 4) review patient survival over 12 months and 5) explore the patients’ lived experiences. The Kidney Disease Quality Of Life Short Form version 1.3 (KDQOL-SF) will be used to measure HRQoL; the African Palliative Care Association Palliative care Outcome Score (APCA POS) and the Palliative care Outcome Score for renal symptoms (POS-S Renal) will be used to assess palliative care needs and outcomes; and semi-structured in-depth interviews to explore the patients’ experiences of living with ESRD. Data collection will be carried out at 0, 3, 6, 9 and 12 months. Discussion: To the best of our knowledge, no similar study has been conducted in sub-Saharan Africa. This will be an important step towards raising awareness of patients’ need and preferences and the strengths and limitations of available health care services for ESRD in resource limited settings.
- Open Access
- 13 December 2019
- Published by Wiley in Epilepsia Open
- Vol. 5 (1) , 80-85
Knowledge and attitudes about sudden death in epilepsy among people living with epilepsy and their healthcare providers in Mulago Hospital, Uganda: A cross‐sectional study
Objective: The objective of the study was to assess level of knowledge and attitudes of SUDEP among people living with epilepsy (PLWE) and healthcare workers providing epilepsy care in Uganda.Methods: This cross‐sectional study of 48 PLWE and 19 epilepsy care providers used a tailored questionnaire to evaluate epilepsy and SUDEP knowledge, frequency of SUDEP discussion, reasons for not discussing SUDEP, timing of SUDEP discussions, and perceived patient reactions to being provided information on SUDEP.Results: Median PLWE sample age was 25 (IQR; 19‐34) years, 10 (20.8%) were male, median age of onset of epilepsy 12 (IQR; 6‐18) years. Half of the PLWE reported that they had never heard of SUDEP. Most PLWE desired detailed information regarding SUDEP and preferred this information during the subsequent visits. Healthcare provider sample mean age was 35.7 (22.8) years, 12 (63.2%) were male and composed of 4 physicians (21.1%). Only 15% (3/20) of providers discussed SUDEP with their patients while 85% (17/20) have never discussed it. The main reasons for not discussing SUDEP were not knowing enough about SUDEP (89.5%) and no adequate support network available (30%). Providers that discussed SUDEP (100%) reported that negative reactions were the most common patient response.Significance: In this Ugandan sample, most PLWE are not aware of SUDEP and epilepsy care providers rarely discuss SUDEP with their patients or patient caregivers. Negative reactions to SUDEP discussions are common but not universal. There is an urgent need for epilepsy educational programs in clinics and targeted communities addressing SUDEP.
- 13 December 2019
- Published by Wiley in Epilepsia Open
- Vol. 5 (1) , 80-85
Open AccessKnowledge and attitudes about sudden death in epilepsy among people living with epilepsy and their healthcare providers in Mulago Hospital, Uganda: A cross‐sectional study
Objective: The objective of the study was to assess level of knowledge and attitudes of SUDEP among people living with epilepsy (PLWE) and healthcare workers providing epilepsy care in Uganda.Methods: This cross‐sectional study of 48 PLWE and 19 epilepsy care providers used a tailored questionnaire to evaluate epilepsy and SUDEP knowledge, frequency of SUDEP discussion, reasons for not discussing SUDEP, timing of SUDEP discussions, and perceived patient reactions to being provided information on SUDEP.Results: Median PLWE sample age was 25 (IQR; 19‐34) years, 10 (20.8%) were male, median age of onset of epilepsy 12 (IQR; 6‐18) years. Half of the PLWE reported that they had never heard of SUDEP. Most PLWE desired detailed information regarding SUDEP and preferred this information during the subsequent visits. Healthcare provider sample mean age was 35.7 (22.8) years, 12 (63.2%) were male and composed of 4 physicians (21.1%). Only 15% (3/20) of providers discussed SUDEP with their patients while 85% (17/20) have never discussed it. The main reasons for not discussing SUDEP were not knowing enough about SUDEP (89.5%) and no adequate support network available (30%). Providers that discussed SUDEP (100%) reported that negative reactions were the most common patient response.Significance: In this Ugandan sample, most PLWE are not aware of SUDEP and epilepsy care providers rarely discuss SUDEP with their patients or patient caregivers. Negative reactions to SUDEP discussions are common but not universal. There is an urgent need for epilepsy educational programs in clinics and targeted communities addressing SUDEP.
- Open Access
- 13 December 2019
- Published by JMIR Publications Inc. in JMIR Preprints
Acceptability of a Mobile Phone Support Tool (Call for Life Uganda) for Promoting Adherence to Antiretroviral Therapy Among Young Adults in a Randomized Controlled Trial: Exploratory Qualitative Study (Preprint)
BACKGROUND Adherence to treatment is critical for successful treatment outcomes. Although factors influencing antiretroviral therapy (ART) adherence vary, young adults are less likely to adhere owing to psychosocial issues such as stigma, ART-related side effects, and a lack of access to treatment. The Call for Life Uganda (CFLU) mobile health (mHealth) tool is a mobile phone–based technology that provides text messages or interactive voice response functionalities through a web interface and offers 4 modules of support. OBJECTIVE This study aims to describe the acceptability and feasibility of a mobile phone support tool to promote adherence to ART among young adults in a randomized controlled trial. METHODS An exploratory qualitative design with a phenomenological approach at 2 study sites was used. A total of 17 purposively selected young adults with HIV infection who had used the mHealth tool CFLU from 2 clinics were included. In total, 11 in-depth interviews and 1 focus group discussion were conducted to examine the following topics: experience with the CFLU tool (benefits and challenges), components of the tool, the efficiency of the system (level of comfort, ease, or difficulty in using the system), how CFLU resolved adherence challenges, and suggestions to improve CFLU. Participants belonged to 4 categories of interest: young adults on ART for the prevention of mother-to-child transmission, young adults switching to or on the second-line ART, positive partners in an HIV-discordant relationship, and young adults initiating the first-line ART. All young adults had 12 months of daily experience using the tool. Data were analyzed using NVivo version 11 software (QSR International Limited) based on a thematic approach. RESULTS The CFLU mHealth tool was perceived as an acceptable intervention; young adults reported improvement in medication adherence, strengthened clinician-patient relationships, and increased health knowledge from health tips. Appointment reminders and symptom reporting were singled out as beneficial and helped to address the problems of forgetfulness and stigma-related issues. HIV-related stigma was reported by a few young people. Participants requested extra support for scaling up CFLU to make it more youth friendly. Improving the tool to reduce technical issues, including network outages and a period of software failure, was suggested. They suggested that in addition to digital solutions, other support, including the promotion of peer support meetings and the establishment of a designated space and staff members for youth, was also important. CONCLUSIONS This mHealth tool was an acceptable and feasible strategy for improving ART adherence and retention among young adults in resource-limited settings. CLINICALTRIAL ClinicalTrials.gov NCT02953080; https://clinicaltrials.gov/ct2/show/NCT02953080
- 13 December 2019
- Published by JMIR Publications Inc. in JMIR Preprints
Open AccessAcceptability of a Mobile Phone Support Tool (Call for Life Uganda) for Promoting Adherence to Antiretroviral Therapy Among Young Adults in a Randomized Controlled Trial: Exploratory Qualitative Study (Preprint)
BACKGROUND Adherence to treatment is critical for successful treatment outcomes. Although factors influencing antiretroviral therapy (ART) adherence vary, young adults are less likely to adhere owing to psychosocial issues such as stigma, ART-related side effects, and a lack of access to treatment. The Call for Life Uganda (CFLU) mobile health (mHealth) tool is a mobile phone–based technology that provides text messages or interactive voice response functionalities through a web interface and offers 4 modules of support. OBJECTIVE This study aims to describe the acceptability and feasibility of a mobile phone support tool to promote adherence to ART among young adults in a randomized controlled trial. METHODS An exploratory qualitative design with a phenomenological approach at 2 study sites was used. A total of 17 purposively selected young adults with HIV infection who had used the mHealth tool CFLU from 2 clinics were included. In total, 11 in-depth interviews and 1 focus group discussion were conducted to examine the following topics: experience with the CFLU tool (benefits and challenges), components of the tool, the efficiency of the system (level of comfort, ease, or difficulty in using the system), how CFLU resolved adherence challenges, and suggestions to improve CFLU. Participants belonged to 4 categories of interest: young adults on ART for the prevention of mother-to-child transmission, young adults switching to or on the second-line ART, positive partners in an HIV-discordant relationship, and young adults initiating the first-line ART. All young adults had 12 months of daily experience using the tool. Data were analyzed using NVivo version 11 software (QSR International Limited) based on a thematic approach. RESULTS The CFLU mHealth tool was perceived as an acceptable intervention; young adults reported improvement in medication adherence, strengthened clinician-patient relationships, and increased health knowledge from health tips. Appointment reminders and symptom reporting were singled out as beneficial and helped to address the problems of forgetfulness and stigma-related issues. HIV-related stigma was reported by a few young people. Participants requested extra support for scaling up CFLU to make it more youth friendly. Improving the tool to reduce technical issues, including network outages and a period of software failure, was suggested. They suggested that in addition to digital solutions, other support, including the promotion of peer support meetings and the establishment of a designated space and staff members for youth, was also important. CONCLUSIONS This mHealth tool was an acceptable and feasible strategy for improving ART adherence and retention among young adults in resource-limited settings. CLINICALTRIAL ClinicalTrials.gov NCT02953080; https://clinicaltrials.gov/ct2/show/NCT02953080
- Open Access
- 17 July 2019
- Published by Springer Nature in BMC Neurology
- Vol. 19 (1) , 1-10
Barriers to epilepsy care in Central Uganda, a qualitative interview and focus group study involving PLWE and their caregivers
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. 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. 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. 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.
- 17 July 2019
- Published by Springer Nature in BMC Neurology
- Vol. 19 (1) , 1-10
Open AccessBarriers to epilepsy care in Central Uganda, a qualitative interview and focus group study involving PLWE and their caregivers
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. 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. 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. 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.
- Open Access
Treatment with commonly used antiretroviral drugs induces a type I/III interferon signature in the gut in the absence of HIV infection
Tenofovir disoproxil fumarate (TDF) and emtricitabine (FTC) are used for HIV treatment and prevention. Previously, we found that topical rectal tenofovir gel caused immunological changes in the mucosa. Here we assessed the effect of oral TDF/FTC in three HIV pre-exposure prophylaxis trials, two with gastrointestinal and one with cervicovaginal biopsies. TDF/FTC induced type I/III interferon-related (IFN I/III) genes in the gastrointestinal tract, but not blood, with strong correlations between the two independent rectal biopsy groups (Spearman r=0.91) and between the rectum and duodenum (r=0.81). Gene set testing also indicated stimulation of type I/III pathways in the ectocervix, as well as of cellular proliferation in the duodenum. mRNA sequencing, digital droplet PCR, proteomics, and immunofluorescence staining confirmed IFN I/III pathway stimulation in the gastrointestinal tract. Thus, oral TDF/FTC stimulates an IFN-I/III signature throughout the gut, which could increase antiviral efficacy but also cause chronic immune activation in HIV prevention and treatment settings.
Open AccessTreatment with commonly used antiretroviral drugs induces a type I/III interferon signature in the gut in the absence of HIV infection
Tenofovir disoproxil fumarate (TDF) and emtricitabine (FTC) are used for HIV treatment and prevention. Previously, we found that topical rectal tenofovir gel caused immunological changes in the mucosa. Here we assessed the effect of oral TDF/FTC in three HIV pre-exposure prophylaxis trials, two with gastrointestinal and one with cervicovaginal biopsies. TDF/FTC induced type I/III interferon-related (IFN I/III) genes in the gastrointestinal tract, but not blood, with strong correlations between the two independent rectal biopsy groups (Spearman r=0.91) and between the rectum and duodenum (r=0.81). Gene set testing also indicated stimulation of type I/III pathways in the ectocervix, as well as of cellular proliferation in the duodenum. mRNA sequencing, digital droplet PCR, proteomics, and immunofluorescence staining confirmed IFN I/III pathway stimulation in the gastrointestinal tract. Thus, oral TDF/FTC stimulates an IFN-I/III signature throughout the gut, which could increase antiviral efficacy but also cause chronic immune activation in HIV prevention and treatment settings.