Can telemedicine address neurologic health disparities in rural Guatemala: a health promotor educational intervention study

Summary

The global burden of neurologic disease is high and its impact manifests in health disparities observed in rural communities of limited resources like those surrounding San Lucas Tolimán, Guatemala. Telehealth may be one method to close these gaps by offering a virtual neurology curriculum. The goal of this project was to determine the pervasiveness of neurologic disease in San Lucas Tolimán and to increase interest and knowledge in neurology topics for local health promotors. A neurologic needs assessment was performed during the initial site visit. This information was subsequently used to create monthly health promotor neurology-based workshops and remote consultations delivered via a telehealth platform over the following year. The 29 health promotors were surveyed before and after the neurology course to measure self-reported knowledge of variable topics as well as their interest in neurology and how effective the remote lectures were. The needs assessment identified at least 68 different patients with neurologic diseases, the most common being headaches and seizures. The health promotors’ knowledge of several neurologic diseases as well as their comfort level diagnosing a condition based on a description of neurologic symptoms significantly increased following the year-long neurology course. The lectures were convenient, easy to see and hear virtually, and increased the health promotors’ interest in neurology. Telehealth is an acceptable and feasible method of delivering educational neurology topics relevant to rural communities. Future, longer-term studies are needed to determine if telehealth interventions such as these impact neurologic patient outcomes.

Lay Summary

Although the global burden of neurologic disease remains high, rural communities throughout the world suffer from health disparities including inadequate resources and knowledge gaps. These barriers often prevent patients from receiving effective neurologic care. In collaboration with the health promoters in the rural communities surrounding San Lucas Tolimán, Guatemala, we designed a year-long educational curriculum addressing neurologic conditions and providing neurological consultations. The goal was to increase the health promoters’ interest in and knowledge of clinical neurology. The delivery of virtual monthly lecture series with a telemedicine component offers a sustainable and feasible approach to achieving these goals.

INTRODUCTION

The global burden of neurologic disease in low- and middle-income countries (LMICs) is high, affecting 84% of the world’s population (Samudralwar et al., 2018). However, several health disparities in LMICs limit the care for patients with neurologic diseases. The discrepancy between resources in LMICs and those in high-income countries is highlighted by the low number of neurologists in LMICs (0.03 − 1.09 per 100 000 people) versus those in high-income countries (4.75 per 100 000 people) (Samudralwar et al., 2018). Rural areas are even less likely to have a neurologist present. When measuring the global burden of neurologic disease based on disability-adjusted life years, conditions such as Alzheimer’s disease, epilepsy and migraine dramatically reduce the overall quality of life for patients (Johnston and Hauser, 2007). In addition, the scarcity of data in LMICs may not fully account for the neurologic disease burden in these regions.

Guatemala is home to nearly 16 million people, and roughly half of this population lives in rural areas struggling with profound poverty and lack of resources. Those in a rural community are also more likely to have poor health outcomes, more disease burden, inadequate access to health services and insufficient funds to spend on healthcare-related items. The health disparities in these regions are evidenced by the number of health care workers in urban areas (25.7 per 10 000) when compared with rural areas (only 3.0 per 10 000) (Avila et al., 2015). Access to subspecialists is even rarer; the World Health Organization (WHO) 2013 Epilepsy Commission recorded only one practicing neurologist in Guatemala. (Epilepsy (who.int) Further, the high dropout rate of health care professionals (69% of nursing students) (Avila et al., 2015) contributes to this disparity. Currently, health care spending is dependent on out of pocket spending, which constitutes 52% (Avila et al., 2015) of total health expenditure in Guatemala, placing a significant burden on individual families. Of the patients that are able to afford care, only 60% (Avila et al., 2015) receive the medications they are prescribed during acute illnesses due to lack of supplies and frequent stockouts. Additionally, 40% (Avila et al., 2015) of the general population identifies as indigenous and this population may not speak Spanish or Spanish may be their second language. These language barriers, along with cultural differences in health ideals, result in complex and unique variables to delivering adequate healthcare in these regions.

Prior studies have made efforts to identify the prevalence of certain neurologic conditions in rural Guatemala such as epilepsy (Mendizabal and Salguero, 1996), and studies have also preliminarily shown that telehealth is an effective tool accepted by Guatemalans in a rural community (McConnell et al., 2017). The goals of our project were three-fold: (i) identify common neurologic diseases via a needs assessment in the rural communities surrounding San Lucas Tolimán, Guatemala; (ii) design a year-long monthly neurologic curriculum to be delivered via telehealth to the Health Promotors of the 19 outlying villages; and (iii) establish a partnership with the local communities and develop a neurology consultation service via telemedicine. We hypothesized that a year-long neurology course delivered via telehealth would increase interest and comfort level with knowledge of the neurosciences for health promotors in the surrounding rural communities of San Lucas Tolimán.

METHODS

This was a two-part, year-long prospective survey study conducted both in San Lucas Tolimán, Guatemala, and remotely via telehealth at an academic medical center in the USA. San Lucas Tolimán is a rural town in southwest Guatemala with a population of ∼17 000 in the main town and an additional 17 000 people scattered throughout the surrounding rural villages. The population is predominantly Maya Kaqchikel and while the official language of Guatemala is Spanish, many members of San Lucas Tolimán and the surrounding villages, especially the elderly population, only speak Kaqchikel. A robust health promotor program was founded in 2004 by a locally active non-governmental organization called Friends of San Lucas (FSL). Health promotors are community members of one of the 19 surrounding rural villages that function predominantly on a volunteer basis. Their baseline education level is variable; all have completed at least high school level equivalent course work and some use their experience as health promotors to eventually go on for further training in nursing or other health-related fields. All health promotors must attend a training program in basic healthcare needs including diabetes, malnutrition and skin disease. They are also trained to recognize if a community member needs to be referred to the medical clinic located in San Lucas Tolimán where a doctor is available to assess the patient. The medical capabilities at this clinic are minimal, with only an X-ray machine and ultrasound machine available. Any patient who needs neurologic ancillary testing such as MRI, electromyography or electroencephalography must travel 3 h away to the nation’s capital. Only certain medications, such as particular anti-epileptic drugs are available, and many are cost-prohibitive. These known resource disparities were factored into the design of this project. Our study consisted of a neurologic needs assessment of the local community members and a longitudinal educational intervention for the health promotors. Institutional Review Board (IRB) approval was obtained from both the academic medical institution and the local equivalent Research Review Committee (RRC) in San Lucas Tolimán. All materials were translated to Spanish and consent was obtained from all participants.

Part 1: Needs assessment

We traveled to San Lucas Tolimán in February 2019 and visited several of the surrounding rural communities. Medical volunteer groups are organized through the FSL to visit the surrounding villages and offer medical outreach clinics. Using a previously validated screening tool to assess for neurologic diseases in resource-poor communities (Bower et al., 2012), we interviewed 51 community members presenting to the outreach clinic for clinical evaluation. The screening tool assessed the patient’s neurologic history, the patient’s family’s neurologic history, and directed a brief neurologic exam (Supplementary Appendix A). All written materials were translated into Spanish but written translations using the region’s various indigenous dialects was not feasible.

Part 2: Educational intervention

During our initial trip to San Lucas Tolimán in February 2019 we interviewed 9 health promotors, 2 local physicians, the coordinator of the health promotor program representing at least 10 different rural communities. We discussed what types of lectures and educational programs would be most beneficial for the communities they serve. Based on this qualitative data as well as the existing neurologic conditions identified in our needs assessment, we designed a monthly year-long lecture-series that could be delivered to the health promotors via telehealth. Once a month, the health promotors gathered collectively at the medical clinic in San Lucas Tolimán where telemedicine devices had been previously arranged and wireless internet capabilities were already in place. We gave lectures in Spanish on several neurologic topics including neuroanatomy overview, seizures, pregnancy and neurologic diseases, hypertension and neurologic diseases, neuropathy, diabetes, and headache. The lecture content was designed to be basic and to offer practical information and treatments given the available resources in their communities. We also enabled an option for the health promotors to bring patients with neurologic symptoms to the telehealth lectures so that we could act as a virtual neurology consultation service. We returned in person in February 2020 to host an intensive neurology workshop and conduct neurology clinics on site. All health promotors who completed the year-long neurology course received a certificate of completion. We distributed a pre- and post-survey (Supplementary Appendix B) to 29 health promotors assessing their comfort level with knowledge of different neurologic diseases, their ability to diagnose different neurologic symptoms, how well the virtual format worked for the lectures, and how helpful each of the lectures was for their practical use in their communities. The health promotors were also given space for free response.

Statistical analysis

There were 29 health promotors who completed the pre-survey and 28 health promotors who completed the post-survey. Surveys were matched with a deidentified random number and the survey that did not have a corresponding post-survey was removed from the data analysis. Answers to surveys were scored using a Likert scale or a binary ‘Yes/No’ response depending on the question that was asked. To analyze the knowledge of different neurologic diseases, a paired T-test was used to assess the change between the knowledge before and after the longitudinal neurology curriculum. To analyze the ability of the health promotors to make a diagnosis based on a series of different neurologic symptoms, a difference in proportions was used to determine the increase in proportion of health promotors who felt comfortable making a diagnosis before and after the neurology course. The latter variable was assessed by self-report. The qualitative free response portion of the surveys was analyzed using thematic analysis.

RESULTS

There were 51 patients who came to the medical outreach clinics in their home village and completed the neurologic screening survey. Based on the history and exam of the patient completing the screening tool or based on the description of the patient’s family members, there were 68 total neurologic conditions described. The most common neurologic diseases that affected the surrounding rural communities were headaches and seizures. If a more specific diagnosis could be determined based on the information provided by the patients, that data were included as well (Table 1).

Table 1:

List of neurologic diseases as determined by a needs assessment in the rural communities surrounding San Lucas Tolimán

Overall neurologic category	Total number of patients	Specific neurologic diagnosis, if available	Total number of patients per diagnosis
Headache	22	Headache, NOS1	17
		Migraine with aura	3
		Cluster headache	1
		Trigeminal neuralgia	1
Seizures	17	Generalized epilepsy	6
		Febrile seizures	5
		Seizures, NOS1	5
		Juvenile myoclonic epilepsy	1
Stroke	8	Stroke, NOS1	8
Peripheral nerve	7	Carpal tunnel syndrome	3
		Peripheral neuropathy	3
		Bell’s palsy	1
Dementia	5	Dementia, NOS1	4
		Alzheimer’s disease	1
Neuromuscular	3	Muscular dystrophy	2
		Motor neuron disease, NOS1	1
Pediatric neurology	3	Genetic syndrome, NOS1	2
		Cerebral palsy	1
Visual symptoms	2	Central retinal artery occlusion	1
		Optic neuritis	1
Spinal cord	1	Traumatic injury	1

NOS, not otherwise specified.

The health promotors responded to a series of common neurologic diseases and rated their knowledge and comfort level treating each of these conditions. Ratings were on a Likert scale with 1 being low knowledge and 5 being high knowledge. Their self-reported knowledge significantly increased after the longitudinal curriculum for the conditions of Parkinson’s disease, restless leg syndrome, multiple sclerosis, muscular dystrophy, dementia, carpal tunnel syndrome, peripheral neuropathy and amyotrophic lateral sclerosis (Table 2).

Table 2:

Average rating of health promotors’ knowledge of treatment of various neurologic conditions before and after the year-long neurology course

	Average before	Average after	Significance (p < 0.05)
Seizures	4.03	4.11	0.359
Tremor	3.48	3.92	0.071
Parkinson’s disease	1.86	3.54	<0.001
Restless leg syndrome	2.51	3.57	0.002
Stroke	3.86	4.04	0.269
Multiple sclerosis	1.32	2.92	<0.001
Muscular dystrophy	2.04	3.16	0.0005
Dementia	2.63	3.54	0.006
Headache	4.68	4.46	0.123
Carpal tunnel syndrome	2.11	3.54	<0.001
Peripheral neuropathy	2.32	3.93	<0.001
Amyotrophic lateral sclerosis	1.21	3.18	<0.001

The health promotors also responded to a series of neurologic symptoms and responded either Yes or No that they would be able to diagnose or establish a differential diagnosis based on the symptoms provided. The proportion of health promotors who responded ‘Yes’ significantly increased following the year-long neurology education course for several different symptoms including ones that were descriptors of stroke, carpal tunnel syndrome, migraine, Parkinson’s disease and seizures (Table 3).

Table 3:

Percentage of health promotors who responded ‘Yes’ to being able to diagnose a neurologic disease based on a series of neurologic symptoms

Neurologic symptoms	% ‘Yes’ before	% ‘Yes’ after	% difference	Significance (p < 0.05)
Acute onset left sided weakness	31.00%	92.60%	61.50%	<0.0001
Tingling of fingers at night	79.30%	100%	20.70%	0.0149
Painless vision loss	82.80%	85.20%	2.40%	0.8085
Trouble walking due to numbness	58.60%	96.30%	37.70%	0.0009
Headache with light and sound sensitivity	75.90%	96.30%	20.40%	0.0306
Resting tremor, slow movements, unsteady gait	31.00%	73.10%	42%	0.0021
Loss of consciousness with arm and leg shaking	55.20%	81.50%	26.50%	0.0356

The post-survey also contained a series of questions asking the health promotors to rate the quality of the telehealth lectures including technical aspects such as the ability to hear and see well, if the virtual telehealth lectures were as good as if the lectures had been given in person, if the lectures were convenient, if the lectures had changed the way they practice, and if the learning objectives had been met. This portion was scored on a Likert scale, with ‘4’ being the highest rating and ‘1’ being the lowest rating. The questions in which the highest average score and highest percentage of health promotors chose the high score of ‘4’ included that the lecture schedule was convenient and that it increased their interest in neurology (average score of 3.92 and 3.86, respectively; 88.9 and 85.7%, respectively, of health promotors rated these responses as 4). The questions receiving the lowest average scores included that the health promotors learned the stated objective (3.28) and that the lectures were as good virtually as they would have been in person (3.25).

Using a Likert scale of 1-5 with ‘5’ being the highest score, the health promotors also scored how well each individual lecture improved their knowledge of certain topics and whether those topics would be helpful in the future. All lecture topics were scored either 4 or 5 on the Likert scale, indicating that the health promotors felt all the topics presented were helpful to their practice. One hundred percent of the health promotors who completed the survey indicated that they would recommend this neurology educational lecture-series to other health promotors. When qualitative assessment of the health promotors was analyzed, several themes emerged including how this information was practical and applicable to rural communities, how this curriculum helped to improve diagnosis and treatment knowledge, and the importance of this information being accessible to representatives of rural communities (Table 4).

Table 4:

Select comments from the free response section on the health promotors’ post-survey translated to English organized by thematic representation

Theme	Quotation from health promoter
Practicality and applicability to local communities	‘I consider participation in this course very important and useful as the knowledge contained is applicable in our daily work’
	‘It is very important for us as health promotors to know more about neurologic conditions because we work with many patients with diabetes and other health problems in our communities’
Improving diagnosis and treatment	‘This course is very important for us as health promotors so we can succeed at our job of diagnosing our patients’
	‘[…]Personally, my participation has helped me differentiate the signs and symptoms of conditions, and then be able to administer the correct treatment of headaches, neuropsychiatric disorders, stroke and facial nerve palsy. I would like to continue to learn more topics’
Accessibility of information for rural communities	‘The covered topics were very helpful to bring back to the community, especially for us as health promotors who are in charge of those among our community who cannot leave their houses[…]’
	‘The information learned during this course was very important for my work as a nurse as well as for my community. Thank you for sharing these topics. They represent crucial learning that improves my knowledge overall. I hope we can continue to share this important understanding’

DISCUSSION

This virtual neurology course incorporating telehealth improved the health promotors’ reported knowledge of different neurologic diseases and their ability to identify a variety of neurologic symptoms. The post-surveys indicated that the virtual means of delivering the course was an acceptable and feasible way of relaying this information. With a community of limited resources, our main goal was to develop sustainable methods to help the health promotors and the patients in their communities with the resources already available to them.

Indeed, telehealth has been used as an educational tool in a variety of other parts of the world including Egypt, Sub-Saharan Africa, the Pacific Islands, the Balkans, Sierra Leone and Rwanda (Combi, 2016). In addition, several telehealth educational courses have shown promise in Guatemala (Boatin et al., 2015; McConnell et al., 2017; Jones-Bamman et al., 2019). In fact, some telehealth educational platforms have been so successful that they have been used as models from LMICs to improve health care in the USA (Kasthurirathne et al., 2017). Several of these studies have found ways to complete the telehealth project for a relatively small cost, especially if the sites using this technology already have internet capabilities, as did our project. Although literature regarding the impact of telehealth on actual health systems in LMICs is limited, several studies have shown that telehealth is important for continuing medical education, reducing cost burden and improving healthcare delivery (Bagayoko et al., 2014). However, more studies are needed to determine if these telehealth initiatives have actually led to changes in morbidity and mortality rates.

It is difficult to determine based on this pilot study whether this educational intervention for the health promotors will actually lead to improvement in neurologic care for their patients. Among participants, subjective knowledge increased significantly across most neurological conditions following course participation, with non-significant differences noted in seizures, stroke and headache, which were also the most frequently identified neurologic conditions during initial community sampling. One limitation of this study is that subjective comfort level with neuroscience knowledge was surveyed but objective measures used to test concrete knowledge were not employed. Furthermore, self-reported diagnostic capabilities were not routinely confirmed by neurologist verification in live patients. Considering cultural context among a group of de facto health professionals with only basic educational backgrounds, an overt knowledge assessment was not deemed to be an effective tool for building the type of relationship and community engagement required to foster an interest in neurology or actively learning a new area of study. However, although there was a lack of objective evidence of improved knowledge, as instructors, we observed the participants to grow as clinicians over the time of this pilot project. This was evident as they incorporated new knowledge into the proctored neurological exams the participants conducted and in the increasingly sophisticated questions posed during classes as the curriculum progressed. Now that we have completed this first level of learning, established our goals and built a relationship, we plan to incorporate objective test measures to determine if this course improves objective knowledge in addition to subjective comfort levels with the topic. It is possible that increased understanding of previously poorly delineated subsets of neurologic disease will translate into improved outcomes in affected patients, but this question will need to be addressed with future studies moving forward. We plan to continue this longitudinal curriculum in the future with annual visits to the San Lucas Tolimán site to complete a variety of neurology projects, including one that focuses on neurologic disease prevalence, treatment and outcome measures over several years in order to help answer these questions. We also plan to stay connected via telehealth systems as a teleconsultation service for any patients needing neurologic care. Although we offered a neurologic teleconsult to any surrounding community member and provided support for patient transport, this service was infrequently used. Acute neurologic consults in high resource settings, e.g. telestroke in emergency departments across the United States has dramatically improved patient outcomes (Demaerschalk and Levine, 2016; Adcock et al., 2020). However, the impact of subspecialty access within a low resource environment is unknown. Expertise regarding disease management may be lacking however simply addressing the educational piece may be of little benefit if epileptic patients have no access to evidence-based treatment, e.g. anti-epileptic medications. Dedicated end-user interviews and surveys should be incorporated in future courses to uncover and address any barriers to teleconsult utilization.

Our initial neurology needs assessment demonstrated that the most common neurologic diseases included headaches, seizures, stroke and peripheral neuropathies. While some patients were aware of their diagnoses and had been given treatment, many others were unaware of what options they had to treat their underlying condition. In addition, there was a gap in knowledge amongst both the health promotors as well as the rest of the community members when describing several neurologic disorders, including low knowledge of stroke and nearly no knowledge of multiple sclerosis and Parkinson’s disease. One limitation of this study is that only a small sample size was surveyed to obtain this information, so it is possible that there are other frequent neurologic conditions that were not accounted for on this initial needs assessment. In addition, the surveyed population consisted of patients voluntarily coming to the outreach clinics and did not include individuals who may otherwise represent groups too healthy or conversely, too ill to attend. Now that a relationship has been established with the local health promotors, it may be possible to conduct a larger needs assessment that is more systematic and more inclusive of the general population.

Although our data supports the feasibility and effectiveness of a virtual learning program combined with telemedicine, these limitations need to be addressed in future iterations of this project. Strengths of our study include the use of a previously validated neurologic disease screening tool adapted from another LMIC setting and the comprehensive information collected over one year both remotely and in-person. In addition, the ability to conduct in-depth interviews with several health promotors allowed us to construct a neurology curriculum specific to the needs of their communities. Evaluation and treatment strategies in the telehealth course were aimed to optimize currently available community resources.

Overall, telehealth is a feasible method for delivering health education to a group of health promotors remotely. Telehealth allows for active participation and discussion amongst learners on both ends, allows the curriculum to be tailored to the individual needs of the community and provides an important bedside learning opportunity during neurological consults. We anticipate that our telehealth model could be used to address access disparity by a broad range of subspecialists moving forward. We hope that in our subsequent communications with the health promotors of San Lucas Tolimán we can continue to generate sustainable interventions to improve neurologic education and, ultimately, health care in rural Guatemala.

SUPPLEMENTARY MATERIAL

Supplementary material is available at Health Promotion International online.

FUNDING

This work was supported by Nancy Sanders Memorial Faculty Research Abroad Grant DA 492190302, and Fund 12300131; National Institute of General Medical Sciences, U54GM104942. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. The website reference to the WHO reports is https://www.who.int/news-room/fact-sheets/detail/epilepsy.