Who Registers? Village Networks, Household Dynamics, and Voter Registration in Rural Uganda

Who registers to vote? Although extensive research has examined the question of who votes, our understanding of the determinants of political participation will be limited until we know who is missing from the voter register. Studying voter registration in lower-income settings is particularly challenging due to data constraints. We link the official voter register with a complete social network census of 16 villages to analyze the correlates of voter registration in rural Uganda, examining the role of individual-level attributes and social ties. We find evidence that social ties are important for explaining registration status within and across households. Village leaders—and through them, household heads—play an important role in explaining the registration status of others in the village, suggesting a diffuse process of social influence. Socioeconomic factors such as income and education do not explain registration in this setting. Together these findings suggest an alternate theory of participation is required.

Availability of essential medicines in Pakistan—A comprehensive document analysis

Introduction Access to essential medicines (EMs) is a basic human right. Non-availability and shortages of EMs are reported for Pakistan but there is insufficient data to define the nature and magnitude of this problem. The current study is designed to systematically analyze the medicines included in the National Essential Medicines List (NEML) for their availability through comprehensive document analysis. Methods An expanded list of medicinal items was developed using the NEML of Pakistan (2018) to enlist individual medicines with their specifications. Registration status of the medicines was searched using three publicly accessible information sources; Pharmaguide 25th Edition, 2018–19, the on-line Drug Information System, and the Mobile Application Pharmapedia followed by a later 3-step validation of the data. The unregistered EMs were then further categorized into three subgroups in accordance with their possible remedial strategies. Findings The 19 studied categories comprised 690 EMs and it was found that 179 (26%) of these EMs don not have a registration status. However, it was also identified that the availability of 47 (26.2%) out of 179 unregistered EMs can be enssured by strengthening compounding services, and prioritizing registration of age-appropriate formulations. Availability of another 39 (21.7%) such medicines can be ensured by revising the NEML or the product registrations for the slight differences in their different specifications. The categories showing high proportion of unregistered medicines included anti-Parkinson’s medicines (100%), antidotes and other substances used in poisoning (60%), diuretics (47%), anticonvulsants/antiepileptics (42%), hormones and other endocrine medicines and contraceptives (38%), medicines for mental and behavioral disorders (30%), anti-infectives (27%), medicines for pain and palliative care (26%), medicines for neonatal care (25%), medicines for diseases of joint (25%), gastrointestinal medicines (24%) and cardiovascular medicines (15%). Conclusion The study shows the absence of registration status of a significant number of EMs in Pakistan. This could be major barrier in their access. Strategies are needed to strengthen the processes of their registration on priority basis.

The impact of incomplete registration on survival rate of children with very rare tumors

Pediatric very rare tumors (VRTs) represent a heterogeneous subset of childhood cancers, with reliable survival estimates depending dramatically on each (un)registered case. The current study aimed to evaluate the number of VRTs among Lithuanian children, to assess the impact of the registration status on survival rates and to track changes in treatment outcomes over the 16-year study period. We performed a population-based retrospective study across children below 18 years old diagnosed with VRTs in Lithuania between the years 2000 and 2015. The identified cases were cross-checked with the Lithuanian Cancer Registry—a population-based epidemiology cancer registry—for the fact of registration and survival status. The overall survival was calculated in relation to the registration status and treatment period. Thirty-seven children with VRTs were identified within the defined time frame. Six of them (16.2%) were not reported to the Lithuanian Cancer Registry at diagnosis. The probability of overall survival at 5 years (OS5y) differed significantly between the registered (n = 31) and unregistered (n = 6) cohorts: 51.6% versus 100%, respectively (p = 0.049). A 5-year survival estimate for children diagnosed with a VRT at the age of 0–14 years differed by 10 percentage points according to the registration completeness: 52.1% calculated for the entire cohort versus 42.1% for registered patients only. The OS5y has not improved over the analyzed period: 61.1% in 2000–2007 versus 57.9% in 2008–2015 (p = 0.805). The survival continued to decline beyond 5 years post-diagnosis due to late cancer-related adverse events: 59.5% of patients were alive at 5 years as compared to 44.3% at 10 years. The OS5y of children affected by VRT was lower than in more common childhood cancers. The survival rate of the unregistered patients may lead to misinterpretation of treatment outcomes. Meticulous registration of VRTs is crucial for correct evaluation of treatment outcomes, especially across small countries with few cases.

Quality of Malaria and HIV Rapid Diagnostic Test kits (RDTs) in health facilities and medicines outlets in the Greater Accra Region of Ghana

Background: Questions remain on the quality of malaria and HIV Rapid Diagnostic Test kits (RDTs) stocked and used in health facilities in Ghana. The Food and Drugs Authority (FDA) in Ghana is mandated to regulate RDTs for quality. By this, all RDTs must be registered, and each brand given a unique registration number. This study aimed to assess the quality of malaria and HIV RDTs in health facilities in the Greater Accra Region of Ghana, using FDA standards. Method: Data was obtained using structured questionnaire from 400 facilities in three districts in the Greater Accra region. A multi-stage sampling procedure was used to select the health facilities including retail medicine outlets. Information on the registration status of the RDTs and conditions under which they were stored were gathered. RDTs kept in air conditioned or well-ventilated rooms were considered as being stored under good condition. RDTs, registered by the FDA and appropriately stored were considered to be of good quality. Data was coded, stored, and analyzed using STATA version 15. Results: About 17% of the malaria RDTs stocked in the pharmacies were unregistered, 85.7% in hospitals were registered. Also, 83.3% of HIV RDTs in the Policlinics were registered. Registration status of the RDTs were associated with the districts in which the health facilities were located (p = 0.006). The RDTs were generally stored under good conditions (99.5%). Over forty percent (41.9%) of user practitioners interviewed rated the quality of the malaria RDTs as good and 59.2% rated HIV RDTs as very good. Conclusion: Though there were some unregistered RDTs whose quality cannot be ascertained, the quality of malaria and HIV RDTs in the facilities assessed were rated as good and likely to produce good results for malaria and HIV case detection.

Voices of the vulnerable: Exploring the livelihood strategies, coping mechanisms and their impact on food insecurity, health and access to health care among Syrian refugees in the Beqaa region of Lebanon

Lebanon has approximately one million Syrian refugees (SR) registered with the United Nations High Commission on Refugees (UNHCR) and an unknown number of unregistered SR, who cannot benefit from formal assistance. This study aimed to examine the livelihoods, coping strategies, and access to healthcare among SR based on registration status and accompanying formal assistance. A mixed-method approach with more emphasis on the qualitative design was adopted. A purposive convenient sampling approach was used to recruit SR from informal tented settlements (ITS) in the Beqaa region in Lebanon. Data collection included 19 focus group discussions (FGDs) that were conducted with participants, who were further divided into three groups: registered refugees with assistance, registered without assistance and unregistered. Twelve in-depth interviews were conducted with key informants from humanitarian organizations. All interviews and FGDs were audio recorded, transcribed, and thematically analyzed. SR were highly dependent on formal assistance when received, albeit being insufficient. Regardless of registration status, refugees resorted to informal livelihood strategies, including informal employment, child labor, early marriage, and accruing debt. Poor living conditions and food insecurity were reported among all SR. Limited healthcare access and high out-of-pocket costs led to limited use of antenatal care services, prioritizing life-threatening conditions, and resorting to alternative sources of healthcare. Severity of these conditions and their adverse health consequences were especially pronounced among unregistered refugees. Our findings shed light on the economic and health disparities among marginalized SR, with the lack of registration and formal assistance increasing their vulnerability. More tailored and sustainable humanitarian programs are needed to target the most vulnerable and hard-to-reach groups.

The impact of incomplete registration on survival rate of children with very rare tumors

Background. Pediatric very rare tumors (VRTs) represent a heterogeneous subset of childhood cancers, with reliable survival estimates depending dramatically on each (un)registered case. The current study aimed to evaluate the number of VRTs among Lithuanian children, to assess the impact of the registration status on survival rate and to track changes in treatment outcome over the 16-year study period. Methods. We performed a population-based retrospective study across children below 18 years old diagnosed with a VRT in Lithuania between the years 2000 and 2015. The identified cases were cross-checked with the Lithuanian Cancer Registry – a population-based epidemiology cancer registry – for the fact of registration and survival status. The overall survival was calculated according to the registration status and treatment period. Results. Thirty-seven children with VRTs were identified within the defined time frame. Six of them (16.2%) were not reported to the Lithuanian Cancer Registry at diagnosis. The probability of overall survival at 5 years (OS5y) differed significantly between the registered (n = 31) and unregistered (n = 6) cohorts: 51.6% vs 100%, respectively (p = 0.049). A 5-year survival estimate for children diagnosed with a VRT at the age of 0-14 years differed by 10% according to the registration completeness: 52.1% calculated for the entire cohort vs 42.1% for registered patients only. The OS5y did not improve over the analyzed period: 61.1% in 2000-2007 vs 57.9% in 2008-2015 (p = 0.805). The survival continued to decline beyond 5 years due to late cancer-related adverse events: 59.5% of patients were alive at 5 years as compared to 44.3% at 10 years. Conclusions. The OS5y of children affected by VRT was lower than in more common childhood cancers. The survival rate of the unregistered patients was superior that mislead interpretation of treatment outcome. Meticulous registration of VRTs is crucial for correct evaluation of treatment outcome, especially across small countries with few cases.