Quality of life of persons with epilepsy in Mahenge, an onchocerciasis-endemic area in Tanzania: A cross-sectional study.

OBJECTIVE: This study investigated the quality of life (QoL) of adults with epilepsy living in Mahenge, an onchocerciasis-endemic area in Tanzania with a high prevalence of onchocerciasis-associated epilepsy (OAE). METHODS: Between February and December 2020, persons with epilepsy (PWE) were recruited from four rural villages in Mahenge: Mdindo, Msogezi, Mzelezi, and Sali. For PWE who could not answer the questionnaire due to their mental or physical disability, a family member was asked to answer the questions instead. The Quality of Life in Epilepsy Inventory-31 (QOLIE-31) questionnaire used contained seven domains. The raw domain scores were transformed to 0-100% subscales, with higher scores indicating better QoL. The global QoL was calculated from the subscales using the overall QOLIE-31 score formula. RESULTS: In total, 96 PWE were enrolled in the study with a median age of 28 (range: 18-60) years, of whom 45 (47%) were male. The questionnaires were answered by PWE (54.8%) or one of their family members (45.2%). Most PWE were single (81%), and half never attended school. About two-thirds (65%) of PWE were suspected of having OAE, and a third (31%) had a history of head nodding seizures. Most PWE were treated with phenobarbital (85.4%) and had high treatment adherence (96.9%). Still, the number of seizures per week ranged from 0 to 7, with a median of one. The mean global QOLIE-31 score was 66.9 (range: 38.3-92.1) out of 100.0. Predictors of lower QoL were living in Sali Village and experiencing seizures the week before the interview. In contrast, completing primary school and switching to second-line anti-seizure medication were predictors of higher QoL. CONCLUSION: In order to improve the QoL of PWE in Mahenge, it is vital to optimize anti-seizure medication regimens to decrease the frequency of seizures and to increase the schooling of PWE.

A qualitative assessment of the perceived acceptability and feasibility of eHARTS, a mobile application for transition readiness assessment for adolescents living with HIV in South Africa.

South Africa has the highest burden of adolescents living with HIV (ALHIV) in the world. The transition from pediatric to adult centered HIV care is a vulnerable period during which many clinical outcomes of ALHIV suffer. Transition readiness assessments may help ALHIV transition from pediatric to adult care to improve their health outcomes. Here, we evaluated the perceived acceptability and feasibility of a mobile health (mHealth) application, eHARTS, to determine transition readiness for ALHIV in South Africa. We conducted in-depth interviews with adolescents (n = 15) and healthcare providers (n = 15) at three government-supported hospitals in KwaZulu-Natal, South Africa. We used a semi-structured interview guide comprising of open-ended questions based on the unified theory of acceptance and use of technology. We did a thematic analysis of the data using an iterative, team-based coding approach to develop themes that were representative of the participants' perspectives on the acceptability and feasibility of eHARTS. We found that most participants found eHARTS to be acceptable because of its simplicity and lack of stigma. Participants believed eHARTS was feasible as it could easily be administered within a hospital setting and integrated into regular clinic activity without disrupting patient care. Additionally, eHARTS was found to have great utility for adolescents and healthcare providers. Clinicians saw it as a valuable tool to engage adolescents and prepare them for transition. Despite concerns that eHARTS may give adolescents a wrong impression about immediate transition, participants suggested that eHARTS be framed in an empowering way as they prepare for transition to adult care. Our data showed that eHARTS is a simple, mobile transition assessment tool with perceived acceptability and feasibility for use in HIV clinics in South Africa for ALHIV. It is particularly useful for ALHIV and transitioning to adult care as it can help identify gaps in readiness for transition.