Applicability of Compensatory Cognitive Training in Epilepsy to Low Resource and Literacy Settings: A Focused Review
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0028-3886.319233
Source of Support: None, Conflict of Interest: None
Keywords: Cognition, cognitive retraining, compensation, epilepsy, health, health care, external aids, internal aids, neuropsychology, neuropsychological rehabilitation
Epilepsy is a brain disease characterized by abnormal brain activity causing seizures or unusual behaviour, sensations, and sometimes loss of awareness. It is one of the most prevalent neurological disorders and the most common serious brain disorder. With no age, racial, social class, national or geographic boundaries, it affects almost 80 million people worldwide., Epilepsy accounts for over 13 million disability-adjusted life years (DALYs) and is responsible for more than 0.5% of the global burden of disease (GBD). Nearly 80% of people with epilepsy live in low- and middle-income countries (LMIC).
In recent years, epilepsy has been redefined as a “disease” and not a “disorder”. The term “disease” better emphasizes to patients, clinicians, and society the importance and impact of epilepsy. It is thus, characterized not just by an enduring predisposition to generate seizures but also by its neurobiological, cognitive, psychological, and social consequences. Literature reveals that the psychological and social burdens of epilepsy can have a greater impact on quality of life than the seizures themselves.
It has been established that up to 50% of persons with epilepsy (PWE) have cognitive impairment that affects health, productivity, and quality of life. The cause of which can be multifactorial ranging from etiology, age of onset, duration and frequency of seizures, seizure type, treatment options as well as mood. These deficits are associated with significant functional impairments. For instance, memory impairment can cause forgetfulness of medication, avoidance of social situations, and unemployment. Cognitive dysfunction is often not prioritized in epilepsy care despite the importance to the patient, and the strong and emerging role of neuropsychology in continuum of healthcare in neurological conditions.
In spite of being recommended by various reviews, cognitive rehabilitation studies in epilepsy are limited in number. The available literature has acknowledged how overwhelmingly under researched and potentially underutilized this area is. Reviews have reported that compensatory strategies are effective in the memory and attention domains, and thus should be incorporated into comprehensive care programs. There is also literature available on cognitive retraining strategies and their efficacy, however, that is beyond the scope of the current review.
The term compensation is used in a wide range of literature, including neurosciences, neurological disorders, and cognitive aging among others. Broadly, it refers to a process through which deficits or losses are moderated. In neurorehabilitation literature, in which deficits are associated with organic diseases or neurological injuries, compensation refers to a variety of behavioral strategies for improving cognitive performance. The general purpose of which is to close the gap between expected or required performance and actual level of skill. [Table 1] outlines these cognitive compensatory strategies taught as a part of a psycho-educational programs.
A recent meta-analysis reported that psycho-educational interventions delivered online, by email, or by printed material were easy to access for patients and their caregivers at a relatively low cost. In recent times, there has been an increasing interest in delivering such programs using less demanding and intrusive methods in relatively resource-poor countries.
The most recent review on memory rehabilitation in epilepsy provides a quantitative and qualitative analysis of the variables such as techniques, treatment outcomes, evidence of transfer, maintenance, and epilepsy-related demographic factors associated with rehabilitation effectiveness. However, it has overlooked more nuanced variables of literacy and financial background, which are critical to resource poor settings.
Over the years, the Neuropsychology Taskforce and Diagnostic Methods Commission of the International League Against Epilepsy (ILAE) have published guidelines outlining the importance and role of neuropsychology in epilepsy management., Neuropsychological intervention, focussing on psychoeducation and compensatory cognitive training form an integral part of the same. However, they too emphasize the difficulty in implementing the recommendations to LMIC where there is a large treatment gap for basic health care interventions. The said are to be viewed as “aspirational” in order to neuropsychological expand services.
Thus, the purpose of this focussed review is to provide an overview of the available studies on compensatory strategies in PWE [Table 1] and explore their applicability to low resource and literacy settings.
A patient's knowledge of the disease is related to his or her success in coping with it. This need in epilepsy was emphasized almost 40 years ago. Over the years multiple programs such as Seizure and Epilepsy Education (SEE) and Modular Service Package Epilepsy (MOSES) among others have been developed with the objectives to cope with epilepsy, improve knowledge, quality of life, compliance, and health status. However, none have focussed specifically on the cognitive consequences of epilepsy and ways to deal them.
Unlike other developed countries, neuropsychology is still in its nascent stages in low resource countries, especially in India, with most patients being unaware of its role in epilepsy care. Recent national and international literature demonstrates its valuable contribution by reiterating its role in the diagnostic and rehabilitative process thereby improving the quality of patient care in epilepsy.,
Evidence suggests that patients benefit significantly from being provided with explanations about the nature of their cognitive impairments and the factors that could have caused them. Psychoeducation of this nature can also help dispel common myths and help provide a realistic understanding of the deficits and explain why certain rehabilitative strategies are suggested over others.
Scope and applicability
As can been seen from [Table 1], most of the scientific literature on cognitive rehabilitation in epilepsy originates from the developed world (predominantly Europe and North America). Much in line with the literature on the cognitive consequences of epilepsy, our knowledge of the cognitive rehabilitation programs is based on a globally unrepresentative sample of PWE.
The only data available from India focuses on cognitive retraining through various paper pencil tasks., There is marked paucity of literature on the efficacy of compensatory strategies in low resource countries, who ironically make up the majority of sufferers worldwide. Further, a recent review has also revealed that the available literature on the wide range of techniques has not been standardized across participants or sufficiently described for replication.
Further, the content of the programs is not available and hence cannot be tested for suitability, readability and applicability to low literacy countries.
Taking this point further, while patient demographics such as age and gender have often been analysed, other variables such as education and financial status have often gone unnoticed. While studies by Engelberts et al. and Thompson et al. have shown that patients with low level of education are more likely to benefit from compensatory training, a further look into the details reveals the education brackets as “primary-high school” and “high school and above” and a range of 8–18 years of education. Thus, assuming a minimum of 8 years of education, further challenging its applicability to low literacy settings.
Additionally, financial implications of enrolment into a rehabilitation program have been only implicitly addressed in the context of excluding patients who have been unable to commit to the travel requirements of a 6–8 week rehabilitation program with weekly follow-ups. For instance, Thompson et al. acknowledged that due to the tertiary nature of their epilepsy center it could be expensive and logistically prohibitive for patients to travel for regular attendance to such programs.
Further, an in depth analysis of the type of external aids and strategies available revealed that aids such as psion organizers are not culturally familiar and financially viable for low resource settings.
A similar trend of under reported aspects of economic feasibility have also been observed while evaluating epilepsy-specific patient psychoeducation programs.
Caregiving, a complex activity, is becoming a major part of health care. There is growing awareness about the mental health aspects of care giving both in the rich and low- and middle-income countries.
Studies carried out in various parts of the world have indicated that caring for patients with epilepsy can be associated with emotional distress, burden, impaired quality of life and poor disease outcome in both patients and caregivers. These can be improved by psycho-education as well as accessible, and affordable health care facilities. However, in the available literature, the role of caregivers has been under-utilized as the only capacity in which they have been included in the rehabilitation process is by encouraging the patients to carry out the homework tasks with friends and family., Whether they were an inegral part of the education process cannot be determined from the limited information available.
As ascertained by literature, including the caregivers in psychoeducation process can not only help in dealing with caregiver burden directly, busting myths around the cognitive consequences and giving the patients and their families a realistic understanding of the neuropsychological prognosis, but also promote patient independence and provide a way to check for patient compliance.
Aside from the study by Thompson et al., where the study participants were encouraged to provide feedback on their experience of the programme and its delivery, compliance assurance of the patient has often not been described. Some studies have reported handing over manuals, however, few have quantified the numbers of hours spent or frequency of engaging in the activities at home.
Future directions and suggestions
The need for increasing awareness about the neuropsychological consequences of epilepsy and ways to deal with them cannot be emphasized enough. Wide distribution of information to patients and their families on strategies to deal with cognitive deficits that affect everyday life can help make well-informed decisions and potentially reduce caregiver burden.
In order to ensure that the distribution of this information is beneficial, logistical, and financially feasible, targetted neuropsychological rehabilitation programs can be developed. They can be structured to include face to face psychoeducation sessions with patients and caregivers and a comprehensive manual or booklet with strategies and examples of ecologically valid tasks to be carried out at home. Further dissemination of information through other public platforms like the internet can also be explored. With the increased use of mobile phones in medical practice and epilepsy management, such information can be added to the already existing platforms (For instance, mobile applications).
For more resource and literacy limited settings, information can be disseminated through public awareness programs at the community level and through group sessions at local hospitals. However, in order to ensure understanding and compliance, it is of paramount importance to develop culturally appropriate, readable, and suitable material.
PWE may benefit from compensatory strategies and trained neuropsychologists should design and implement these as a part of intervention plans based on but not limited to the areas explored in the review. The efficacy of techniques specifically for low resource and literacy settings need further development, standardization, study, and validation. These can be planned in a way that they are accesible and ensure the effective utilization of scarce health care resources.
Financial support and sponsorship
We would like to thank University Grants Commission (UGC), Government of India for providing financial support to the first author to undertake her PhD in the form of UGC NET-JRF/SRF.
Conflicts of interests
There are no conflicts of interest.