Jessica Trawin

Post-discharge death is a key contributor to pediatric mortality in sub-Saharan Africa. To address this period’s morbidity and mortality, evidence is needed to inform resource prioritization and policy development. No studies have been conducted in Rwanda, limiting understanding of post-discharge mortality. This study aimed to determine the incidence of and risk factors for post-discharge mortality among children under five admitted with suspected sepsis in Rwanda’s rural and urban healthcare settings. We conducted a prospective, epidemiologic cohort study of post-discharge mortality in children ages 0–60 months admitted for suspected or confirmed infection in two Rwandan hospitals, one rural (Ruhengeri) and one urban (Kigali), from May 2022 to February 2023. We collected clinical, laboratory, and sociodemographic data on admission and follow-up vital statistics at 2-, 4-, and 6-months post-discharge. Of 1218 children enrolled, 115 (9.4%) died, with half in-hospital (n = 57, 4.7%) and half post-discharge (n = 58, 4.7%). Post-discharge mortality was lower in the 6–60-month cohort (n = 30, 3.5%) than in the 0–6-month cohort (10%) and higher in Kigali (n = 37, 10.3%) vs. Ruhengeri (n = 21, 2.7%). Median time to post-discharge death was 38 days (IQR: 16-97.5) in the 0–6-month cohort and 33 days (IQR: 12–76) in the 6–60-month cohort. In the 0–6 months’ cohort, malnutrition (weight-for-age z-score < -3) increased the odds of post-discharge death (aOR 3.31, 95% CI 1.28-8.04), while higher maternal education was protective (aOR 0.15, 95% CI 0.03-0.85). Significant factors in the 6–60-month cohort included an abnormal Blantyre Coma Scale (aOR 3.28, 95% CI 1.47-7.34), travel time to care >;1 hour (aOR 3.54, 95% CI 1.26-9.93), and referral for higher care (aOR 4.13, 95% CI 1.05-16.27). Children aged <2 months within the 0–6 month cohort exhibited the highest cumulative mortality risk. Post-discharge mortality among Rwandan children remains a challenge, requiring interventions like caregiver counselling, follow-up visits, and community health worker monitoring to reduce mortality rates.

Introduction: Post-discharge mortality among children following an acute illness in low-resource settings is high and demands urgent attention. We aimed to assess the impact of Smart Discharges, a mortality prevention risk-differentiated approach to peri-discharge care among children under five years admitted with suspected sepsis. Methods: We conducted a before-after two-phase study with staggered implementation at six hospitals in Uganda. During a baseline period (Phase-1), clinical prediction algorithms for post-discharge mortality were developed based on clinical and socio-demographic data collected at hospital admission. Outcomes, primarily mortality within six months of discharge, were compared against an interventional period (Phase-2). In the Smart Discharges intervention each family was given soap, a mosquito net, their risk category (low/medium/high/very high), counselling, and educational materials regardless of risk stratification, after which the intensity of recommended follow-up care was determined by age (0-6, 6-60 months) and predicted post-discharge mortality risk. Results: Overall, 13,051 children were enrolled: Phase-1, n=6,955; Phase-2, n=6,096. Characteristics were similar between groups, including mean predicted post-discharge mortality risk (6.3% Phase-1 vs. 5.9% Phase-2). With Smart Discharges, 2,331/3,891 (59.9%) medium/high/very high-risk families attending all their scheduled visits. The observed post-discharge mortality rate was 439 (6.3%) in Phase-1 vs. 296 (4.9%) in Phase-2; adjusted hazard ratio 0.77 (95%CI 0.67 to 0.90) favouring the intervention. In Phase-1, 1,313 (18.9%) children were re-admitted to hospital vs. 1,024 (16.8%) in Phase-2. Conclusion: A simple approach of risk assessment paired with education and engagement through scheduled follow-up after discharge is an appropriate strategy to improve child survival in low-resource settings.

Under-five children in low- and middle-income countries remain at high risk of death after hospital discharge. However, few studies have systematically assessed discharge processes or facility readiness to support safe transitions of care. This study aimed to assess health facility readiness to provide pediatric discharge care for children under five years of age and current discharge practices in a nationally representative sample of health facilities in Uganda. A cross-sectional health facility scan was conducted between October 2020 and May 2021 at 36 facilities providing inpatient pediatric care in Uganda. Primary outcomes included: (1) facility readiness for pediatric discharge, defined as availability of infrastructure, technology, forms/job aids, and equipment; and (2) observed discharge care practices, including caregiver counselling, provision of take-home materials, post-discharge risk assessment, referrals, and clinical assessments on the day of discharge. Secondary outcomes included discrepancies between reported versus observed discharge care practices, discharge relevant admission practices, as well as caregiver and health worker satisfaction. Thiry-six health facilities were enrolled and 180 pediatric discharge observations, 180 caregivers, and 180 health workers were assessed. Hospitals had higher readiness scores in infrastructure (p < 0.001), technology (p = 0.006), and equipment (p = 0.021) than health centres. Hospitals also performed better in the provision of discharge risk assessment, clinical assessment on the day of discharge, follow-up, and provision of take-home materials. In contrast, health centres more consistently provided discharge counselling (p = 0.021) and had higher counselling topic scores (p < 0.001). Overall, 82.8% of discharges included a clinical assessment, 31.1% included a follow-up referral, and 26.1% included a risk assessment. Observed practices often diverged from reported procedures. These findings identified several priority areas for quality improvement in both resource availability and discharge care delivery in all settings. Standardizing discharge policies and tools may strengthen discharge care and may be used as a guide to inform national-level pediatric discharge policies.

Mortality following hospital discharge remains a significant threat to child health, particularly in resource-limited settings. The Smart Discharges risk-prediction models use simple clinical, socio-behavioral, and point-of-care lab test variables to successfully predict children at the highest risk of death after hospital admission for infection to guide a risk-based approach to post-discharge care. In Rwanda, we externally validated five models derived from the prior Smart Discharges Uganda studies in a new cohort of children ages 0 days to 60 months admitted for suspected sepsis at two hospitals. We evaluated model performance using metrics including area under the receiver operating characteristic curve (AUROC), Brier score, and test characteristics (e.g., sensitivity, specificity). Performance was visualized through ROC and gain curves and calibration plots. Of 1218 total children (n = 413, Kigali; n = 805, Ruhengeri), 1161 lived to discharge (95.3%) and 1123 of those completed 6-month follow-up (96.7%). The overall rate of post-discharge mortality was 4.8% (n = 58). All five prediction models tested achieved an area under the receiver-operating curve (AUROC) greater than 0.7 (range 0.706 - 0.738). Low outcome rates resulted in moderately wide confidence intervals. Model degradation ranged from 1.1% to 7.7%, as determined by the percent reduction in AUROC between the internal validation of the original Ugandan cohort and the external Rwandan cohort. Calibration plots showed good calibration for all models at predicted probabilities below 10%. There were too few outcomes to assess calibration among those at the highest predicted risk levels. Discrimination was good with minimal degradation of the model despite low outcome rates. Future work to assess model calibration among the highest risk groups is required to ensure models are broadly generalizable to all children with suspected sepsis in Rwanda and in similar, resource-limited settings.

PURPOSE: To assess the acceptability of integrated screening for cervical cancer and HIV in the community setting. METHODS: We developed surveys for patients and community health workers (CHWs) who participated in the Advances in Screening and Prevention in Reproductive Cancers (ASPIRE) Mayuge trial that compared self-collected human papillomavirus testing at home versus community health meetings in Mayuge district, Uganda. Quantitative data were summarized using descriptive statistics. Open-ended questions were analyzed using an inductive approach with thematic content analysis. RESULTS: We conducted 102 patient surveys and 31 CHW surveys between June and August 2021. Ninety-nine percent of patients and 100% of CHWs indicated that they would find the addition of an HIV test to their self-collected cervical cancer test acceptable. The most frequently stated reasons in favor of adding an HIV test to the ASPIRE Mayuge cervical cancer screening pathways were time-saving, privacy, and support from other women and CHWs. The most frequently stated reasons against integrated screening were related to concerns about confidentiality, most often in reference to women's family members and other women in their village. CONCLUSION: Integrated community-based cervical cancer and HIV testing would be highly acceptable to both women and CHWs.

The World Health Organization (WHO) Integrated Management of Childhood Illness (IMCI) guidelines recognize the importance of discharge planning to ensure continuation of care at home and appropriate follow-up. However, insufficient attention has been paid to post discharge planning in many hospitals contributing to poor implementation. To understand the reasons for suboptimal discharge, we evaluated the pediatric discharge process from hospital admission through the transition to care within the community in Ugandan hospitals. This mixed methods prospective study enrolled 92 study participants in three phases: patient journey mapping for 32 admitted children under-5 years of age with suspected or proven infection, discharge process mapping with 24 pediatric healthcare workers, and focus group discussions with 36 primary caregivers and fathers of discharged children. Data were descriptively and thematically analyzed. We found that the typical discharge process is often not centered around the needs of the child and family. Discharge planning often does not begin until immediately prior to discharge and generally does not include caregiver input. Discharge education and counselling are generally limited, rarely involves the father, and does not focus significantly on post-discharge care or follow-up. Delays in the discharge process itself occur at multiple points, including while awaiting a physical discharge order and then following a discharge order, mainly with billing or transportation issues. Poor peri-discharge care is a significant barrier to optimizing health outcomes among children in Uganda. Process improvements including initiation of early discharge planning, improved communication between healthcare workers and caregivers, as well as an increased focus on post-discharge care, are key to ensuring safe transitions from facility-based care to home-based care among children recovering from severe illness.

Background In many low-resourced settings, self-collected HPV-based cervical cancer screening (SCS) is being rolled out through task shifting to community health workers (CHWs). Process evaluations are needed to ensure SCS programs are effective and translate to community-based contexts. Methods The Advances in Screening and Prevention in Reproductive Cancers (ASPIRE) study in Mayuge, Uganda was a two-arm, pragmatic randomized trial comparing two SCS implementation strategies facilitated by CHWs: Door-to-door and Community health day recruitment. This adjunct study uses the RE-AIM evaluation framework to assess the Reach, Efficacy, Adoption, Implementation and Maintenance of each implementation strategy in a subpopulation using process data collected throughout the trial. Results Of the trial population (n=2019), 781 women participated in both the baseline and exit surveys (door-to-door: n=406; community health day: n=375) and are included in this analysis. Both implementation strategies demonstrated high Reach, Efficacy, Adoption, Implementation and Maintenance. Trial consent rate was high and 100% of consenting participants in both arms participated in SCS (Reach). Follow-up rates among HPV positive participants were also high in both arms (door-to-door: 84% and community health day: 74%) (Efficacy). The intervention employed 61 CHWs, 7 nurses, 3 health facilities and other local staff within the health system to implement the intervention (Adoption). The community health day arm received HPV screening results and visual inspection with acetic acid (VIA) quicker than the door-to-door arm, but reported higher dissatisfaction with wait times (Implementation). While women had knowledge of cervical cancer symptoms and prevention measures at six-months post-intervention, no one in either arm recalled that cervical cancer could be asymptomatic (Maintenance). Conclusion Both SCS implementation strategies performed well, demonstrating high Reach, Efficacy, Adoption, Implementation and Maintenance throughout participating communities. Implementing pragmatic approaches including task-shifting to CHWs can reduce health worker burden and improve screening access in low-resourced, community-based settings.

Effective approaches to improve coverage of self-collected human papillomavirus (HPV)-based cervix screening (SCS) as well as attendance at treatment for HPV-positive participants are needed to inform policy on optimal integration of cervical cancer screening programs within existing infrastructure in low-resource settings. ASPIRE Mayuge was a pragmatic cluster-randomized trial in rural Mayuge district, Uganda, comparing the superiority of two recruitment implementation strategies for SCS: Door-to-Door versus Community Health Day. Villages were randomized (unblinded) to a strategy, and participants aged 25–49 years with no previous history of hysterectomy or treatment for cervical cancer or pre-cancer were eligible. Participants completed a survey and participated in SCS. The primary outcome was rate of attendance at treatment after a positive SCS. The trial randomized 31 villages and 2,019 participants included in these analyses (Door-to-Door: 16 clusters, 1,055 participants; Community Health Day: 15 clusters, 964 participants). Among HPV-positive participants, attendance at treatment rates were 75% (Door-to-Door) and 67% (Community Health Day) (P = 0.049). Participants in the Community Health Day intervention were less likely to attend treatment compared to Door-to-Door (risk ratio = 0.78, 95% confidence interval: 0.64–0.96). No adverse events were reported. Policymakers in low-resource settings can use these results to guide implementation of SCS programs. ISRCTN registration: 12767014. ClinicalTrials.gov registration: NCT04000503.

Background: There is limited knowledge on the social and economic impacts of a diagnosis of cervical cancer on women and children in low‐ and middle‐income countries (LMICs).Objectives: To determine the social and economic impacts associated with cervical cancer among women and children living in LMICs.Search strategy: The MEDLINE, PsychInfo, CINAHL, Pais International, and CAB Global Health databases were systematically searched to retrieve studies up to June 2021.Selection criteria: Studies were included if they reported on either the social or economic impacts of women or children in a LMIC.Data collection and analysis: Data was independently extracted by two co‐authors. The authors performed a quality assessment on all included articles.Main results: In all, 53 studies were included in the final review. Social impacts identified included social support, education, and independence. Economic impacts included employment and financial security. No study reported the economic impact on children. Studies that utilized quantitative methods typically reported more positive results than those that utilized qualitative methods.Conclusions: Additional mixed‐methods research is needed to further understand the social support needs of women with cervical cancer. Furthermore, research is needed on the impact of a mother's diagnosis of cervical cancer on her children.

Data sharing has enormous potential to accelerate and improve the accuracy of research, strengthen collaborations, and restore trust in the clinical research enterprise. Nevertheless, there remains reluctancy to openly share raw data sets, in part due to concerns regarding research participant confidentiality and privacy. Statistical data de-identification is an approach that can be used to preserve privacy and facilitate open data sharing. We have proposed a standardized framework for the de-identification of data generated from cohort studies in children in a low-and-middle income country. We applied a standardized de-identification framework to a data sets comprised of 241 health related variables collected from a cohort of 1750 children with acute infections from Jinja Regional Referral Hospital in Eastern Uganda. Variables were labeled as direct and quasi-identifiers based on conditions of replicability, distinguishability, and knowability with consensus from two independent evaluators. Direct identifiers were removed from the data sets, while a statistical risk-based de-identification approach using the k-anonymity model was applied to quasi-identifiers. Qualitative assessment of the level of privacy invasion associated with data set disclosure was used to determine an acceptable re-identification risk threshold, and corresponding k-anonymity requirement. A de-identification model using generalization, followed by suppression was applied using a logical stepwise approach to achieve k-anonymity. The utility of the de-identified data was demonstrated using a typical clinical regression example. The de-identified data sets was published on the Pediatric Sepsis Data CoLaboratory Dataverse which provides moderated data access. Researchers are faced with many challenges when providing access to clinical data. We provide a standardized de-identification framework that can be adapted and refined based on specific context and risks. This process will be combined with moderated access to foster coordination and collaboration in the clinical research community.