CHW engagement and effectiveness
The pivotal role of CHWs has already been recognized in communicable diseases, e.g., HIV, Ebola, malaria, tuberculosis, among others, as well as non-communicable diseases, e.g., hypertension, diabetes, among others, yet only infrequently have they been engaged in epilepsy [
11,
20‐
23].
In Mozambique, inclusion of 1161 CHWs in the implementation of epilepsy in primary care, resulted both in increased mobilization and long-term follow-up of PwE, reducing the treatment gap by 3% and increasing the number of newly diagnosed PwE twofold after 3 years [
24]. In Rwanda, 4429 CHWs of four districts were trained on epilepsy and were engaged in psycho-educational groups for PwE, which resulted after 4 years in the identification of 6330 PwE of whom more than a 30% were on treatment after 2 years [
11].
In contrast to these long-term programs, we opted for a one-off, short-term coordinated action with a single day training and a short screening period, quickly followed by referral for confirmation of diagnosis. We confirmed our hypothesis of an existing treatment gap as previously documented in Rwanda [
3,
25]. A total 541 PwE was referred for epilepsy follow-up and treatment, which is a decrease of more than 15% of the initially assumed diagnosis gap, which still remains large [
4]. Repeat screening may, therefore, be needed, yet the optimal interval is unclear.
Of interest, we observed a higher diagnostic gap and a lower therapeutic gap in Gataraga, the most remote center from the district hospital. Whereas a higher number of newly diagnosed patients can be explained by a sector based underdiagnosis, the lower therapeutic gap in Gataraga may be explained by its geographical properties or the health services provided as it hosts a hospitalization ward. If future studies demonstrate that specific healthcare services impact the treatment gap, this may be considered as a strategy in future health programs.
Whereas other CHW training initiatives focused only on epilepsy knowledge and awareness, we combined general epilepsy training with training of specific signs and symptoms of epilepsy, aligned to the questions of a validated screening tool [
14,
15]. This different methodology may explain the higher number of confirmed cases per trained CHW (2.1 after a single day; 589 PwE/280 CHWs) compared to an earlier long term project (1.5 over 4 years; 6330 PwE/4429 CHWs) [
11].
CHWs demonstrated high engagement as they ensured that positively screened persons respected their scheduled appointment with the neurology team. The confirmation of a clinical diagnosis of epilepsy by a neurologist was deemed necessary to decrease any misdiagnosis. Although the presence of a neurologist at the consultation, compared to a mental health nurse in daily practice at the HC, may have increased the willingness to attend the consultation, we consider it unlikely to have influenced screening results.
On the other hand, we observed a high variability in the number of patients referred to the HC from 1 to 27 persons per CHW, possibly reflecting different levels of engagement. Possible explanations include epilepsy training effect and interpretation, conflicting tasks, bias in administration of the tool or motivational aspects. Future studies are needed to evaluate the drivers for this variability using the CHW individual questionnaire [
26].
In our project, CHWs were not instructed to conduct a solid door-to-door approach and may have missed household members when executing screening during daytime, possibly resulting in a selection bias. More females, involved in the household, and children not attending school, may have been screened and detected. This may have been the case for the HC of Kimonye, with a female/male ratio of newly diagnosed PwE of 2.32.
Interestingly, we observed a spill-over effect of the project within and outside the catchment area since non-screened persons presented unexpectedly to the neurology consultation. The confirmation of epilepsy in all those subjects may indicate that epilepsy as a disease may be recognized yet does not necessarily lead to care seeking.
In Belize, CHWs reported the need for appropriate tools and equipment, such as a blood pressure monitor [
27]. The use of tools has also been recommended to improve CHW effectiveness [
13]. The value of validated questionnaires by CHWs has been demonstrated in South Africa during screening for cardiovascular diseases [
28,
29]. A cell-phone based screening tool for hearing impairment deployed to CHWs equally has proven to be accurate for screening [
30,
31].
In resource limited settings, epilepsy is a clinical diagnosis. Following our results, we advocate the use of the validated screening questionnaire as the optimal tool for mobilization of PwE. It is, however, not suited for follow-up of patients. The positive predictive value of screening tool was 45%. This yield needs further analysis as future screening or mobilization projects may want to increase both human resource allocation and return on screening.
We did not find CHW gender, age, or duration of experience to relate significantly to screening results. We found no difference in number of CHWs referring positively screened with and without confirmed diagnosis. In addition, the observed inversion of gender preponderance with male predominance in younger age group to a female preponderance in the older age groups was not significantly influenced by CHW characteristics. This age shift has been observed in Zambia as well, which may be explained by a survival bias, age-specific etiologies, care seeking patterns, gender-dependent risk factors, or competing mortality risks [
4,
32].
Considerations on sustainability, scalability, and future directions
Sustainability of epilepsy care was assessed before the project start and the situational analysis identified ASM availability, human resource capacity in HCs and possible financial restraints for diagnosed PwE as gaps to ensuring long term care [
17,
18]. Up to 66% of PwE were in the lower two-tier income levels and 6 in 10 PwE had no access to social security. This may explain the low adherence to treatment in previously diagnosed PwE. Financial concerns may delay care seeking and directly contribute to the diagnosis gap. To address this barrier, financial support was addressed by the organization individualized psycho-economic activities through micro-financing credits and the creation of psycho-educational groups which involved the CHWs. CHWs thus proved instrumental both in screening and ensuring sustainability of care.
CHWs were trained on the disease and the tool for 1 day, which may prove enough for one-off actions. When a tool would permanently be rolled out to CHWs with epilepsy being part of their work package, the need for repeated training will require further investigation. Single epilepsy trainings have demonstrated long term effects on knowledge, attitudes and practices in CHWs [
33]. Yet, appropriate use of tools may require repeat trainings.
Another challenge was the anticipated workload for the CHWs. Both single day training and screening was thought not to interfere significantly with ongoing daily tasks at hand. The project, however, resulted in additional workload as the CHW accompanied referred persons to the neurology consultation and given their involvement in psycho-educational groups afterwards. Although mental health is currently included in the task description of Rwandan CHWs, scaling up to large screening projects will add workload, which may require revision of work packages or increased CHW capacity. Future projects may also address the question whether CHWs could participate in distribution of ASMs, which has shown to decrease workload for HC staff engaged in treatment of HIV patients [
20]. In addition, measures to prevent loss of data must be put in place, as we observed up to 15% missing questionnaires. A digital version of the screening tool for iOS and Android is currently under development.
Our approach with trained CHWs, equipped with a specific screening tool, seemed to be at least as effective in terms of number of patients mobilized compared to longer term programs and may offer an opportunity for future projects [
34,
35]. However, the barriers to sustainability of care will need to be addressed before future scaling.