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Research Article | DOI: https://doi.org/10.31579/2639-4162/160
1Chief Paediatric Neurologist for project Top-Down- Bottom-up
2Paediatric Neurology Assistant Professor Paediatric Neurology Children Hospital and Institute of Child Health Faisalabad
3Consultant Paediatric Neurologist. The Brain Associates Lahore
4FCPS Paediatrics. Fellow Paediatric Neurology. Paediatric Neurologist for project Top-Down- Bottom-up.
5Assistant Professor Paediatric Neurology. FCPS, Paediatric Neurology Children Hospital and Institute of Child Health Multan
*Corresponding Author: Muhammad Akbar Malik, Universidad de Ciencias Médicas, Departamento de Postgrado e Investigaciones, Sancti Spiritus, Cuba.
Citation: Muhammad A. Malik, Ahmad O. Virk, Arshad Rafiq, Ziaur Rehman, Faisal Zafar, (2024), 1-Brain Health as an Integrant of Primary Medical Care in Hard to Reach Financially Deprived District in South Punjab -Pakistan, J. General Medicine and Clinical Practice, 7(7); DOI:10.31579/2639-4162/160
Copyright: © 2024, Adrian González Méndez. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Received: 09 March 2024 | Accepted: 22 March 2024 | Published: 01 April 2024
Keywords: medication; adherence; self-report; epilepsy; seizures; polypharmacy; antiepileptic drugs (aeds); stigmatization
Purpose:To report the five-dimension factors proposed by the World Health Organization (WHO) influencing adherence to antiseizure medicines (ASMs) in children with epilepsy (CWE) in financially disadvantaged areas, focusing on removing these barriers for improved ASMs adherence among CWE.
Methods:A research investigation was carried out from September 2022 to December 2022, involving a total of 280 children diagnosed with epilepsy: age from 6 months to 18 years visiting monthly paediatric neurology clinics at the Rukhsana Shafqat Urban Primary Health Centre (RSUPHC). The objectives of the study were to examine the factors that impact or facilitate adherence to ASMs among children with epilepsy (CWE). The data was obtained using Morisky's Medication Adherence Scale-8 (MMAS-8), as well as the identification of five-dimension factors proposed by the WHO that hinder or facilitate adherence to ASMs. The objective of the study was to offer complimentary consultations and provision of free ASMs to the CWE residing in economically deprived regions.
Results:The research encompassed a group of 280 individuals who were diagnosed with epilepsy: age of 10.82±6.32 years. Out of the whole sample, it was seen that 226(80.7%) children exhibited adherence to the treatment regimen as prescribed. Conversely, the remaining 54(19.3%) of children were categorised as nonadherent. The study demonstrated the noteworthy impact of socioeconomic factors, while also including all the parameters identified by the WHO that affect adherence to antiseizure medication. The availability and supply of complimentary paediatric neurology services were crucial in promoting adherence to antiseizure medication (ASM). Conclusion: Comprehensive treatments addressing both adherence and nonadherence to ASMs are needed to enhance the management of childhood epilepsy, with a focus on economically disadvantaged areas.
Epilepsy is a crucial neurological disorder that significantly contributes to prolonged morbidity, disability, and substantial financial loss. Over 85% of the global burden of epilepsy occurs in the 49% of the population living in low-income and lower middle-income countries. [1] Cost-effective epilepsy treatments are available and an accurate diagnosis can be made without technological equipment. Nonetheless, a vast majority of individuals with epilepsy in many resource-poor regions do not receive treatment. [2–4] Untreated epilepsy is a critical public health issue, as people with untreated epilepsy face potentially devastating social consequences and poor health outcomes. Children and youth represent one of the fastest growing populations affected by epilepsy – the most common childhood neurological condition in the world. [5]
Negative effects on cognition and physical development, as well as social stigmatization and poor quality of life, are commonly observed in children with epilepsy (CWE). Furthermore, CWE are at higher risk for developmental, intellectual and mental-health co-morbidities, including attention deficit/hyperactivity disorder (ADHD), autism, learning disabilities, depression and anxiety. [6–9] Often, the evaluation of a child with seizures starts with a pediatrician in a primary-care practice or an emergency room. Children are then referred to a neurologist or epileptologist for further evaluation, family education and the development of a management plan. Unfortunately, treatment and referral patterns for CWE are not uniform or standardized across the developing countries and is not exiting in hard-to-reach financially deprived areas in these countries.
A lot of disparities are found within these countries, particularly between the poorer areas (rural or urban settlement) and more affluent urban areas and between the scarcity of health facilities and personnel in the government sector and those in the private medical sector. These disparities contribute to the enormous treatment gap (i.e., the pro portion of people with epilepsy who have active epilepsy but who are not taking antiepileptic drugs [AEDs] or are inadequately treated): over 60% of people with epilepsy do not access biomedical treatment for epilepsy in low middle income countries (LMIC), and if they do, they often do not or are not able to adhere to the prescribed regimens. [10, 11] Decades of work have gone into identifying and bringing to light treatment gaps in epilepsy. Despite this work, progress to significantly narrow care divides has been slow. However, significant barriers remain. Even people in high income countries continue to experience barriers to care such as a lack of specialists, underutilization of epilepsy surgery, and variable resource allocation.[12] Despite this concerted effort by different stakeholders, there are no systematic efforts/projects for financially deprived hard to reach areas in Pakistan. We started an outreach brain health program for such an area (District Bhakkar) and this report gives effects of our decades efforts in bridging the gaps of childhood epilepsy management.
2. i Study Area and Design
This prospective, longitudinal, cross-sectional investigation used descriptive and correlation analyses. The investigation was done in a charity urban primary care facility (CUPHCF) for outpatient clinics for brain subspecialties. The facility is in Bhakkar, a poor difficult to reach district city in South Punjab, Pakistan. This city is 440 miles from Lahore and takes 6 hours to drive because to terrible road conditions. The CUPHCF is the district's only brain health care centre and takes referrals from public and private clinics. Undiagnosed CWE make up over 60% of paediatric neurology referrals. This facility is situated adjacent to the District Headquarters Hospital. The canter’s brain subspecialists travel from Lahore, Multan, and Faisalabad, Punjab's largest cities to treat children and adults in this facility in addition to their brain health outreach program. This effort helps teenagers transition to adult brain health program for epilepsy management. Clinical criteria from the International League Against Epilepsy (ILAE) was used to diagnose childhood epilepsy. These criteria included children between 9 months and 18 years old, regardless of gender, who had no major cognitive impairment or active psychiatric illnesses. This health facility treats childhood epilepsy and the subjects of this investigation included CWE in whom at least one ASM was started ≥3 months before this investigation. A qualified consultant paediatric neurologist or neuropsychiatrist enrolled research participants. EEG and neuroradiology imaging studies like CT and MRI provided corroborative data in the diagnosis process, although they were not essential. The research included verbal consenting patients and carers. These inclusion criteria were essential to ensure that caretakers and patients could understand and answer research instrument questions. Rapidly advancing neurological or medical problems, psychological conditions that could hinder participation and cause discontent, and non-epileptic psychogenic seizures were excluded.
2. ii Study Population, Variables and Outcome Endpoints
The major outcomes of the study included drug adherence, non-adherence, and the factors that either helped or impeded adherence to CE medication. The present study assessed the level of adherence to ASMs in a cohort including 340 children who had ascertained a diagnosis of epilepsy. The children in question were receiving medical treatment and participated in monthly outpatient sessions in the field of pediatric neurology at RSUPHC from September to December 2022. Upon careful examination, it was determined that a grand total of 280 instances met the predetermined criteria for inclusion in the study. Consequently, all children with epilepsy who participated in these four monthly outpatient pediatric neurology sessions were categorized into adherent and nonadherent groups.
3. iii Study Tools for Data Collection Process and Management
Two recently joined consultant pediatric neurologists collected data from primary caretakers. Two RSUPHC-employed physicians, two neurology nurses, two computer operators, and one psychologist formed the research team. The lead investigator oversaw them. The team used a pre-tested interviewer-administered semi-structured questionnaire from study materials and related literature. Everyone who matched the eligibility criteria gave informed verbal consent after receiving a detailed study briefing. Patients who satisfied the criteria were interviewed after neurological follow-up. The data came from three-part questionnaires. The session began with epilepsy clinical facts and patients’ and carers’s sociodemographic. The MMAS-8 instrument collected medication adherence data in the second segment [13]. The third portion of the study examined factors affecting prescription antiseizure drug adherence. The WHO, s classified five groups of decreased adherences were used ;1) socioeconomic variables,2) healthcare team and system factors,3) disease factors, 4) medication factors,5) and patient related factors are included. This study attempted to determine the prevalence of antiseizure medication (ASM) non-adherence and its associated factors among CWE.
3.i. Base line demographic and clinical characteristics of the participants associated with adherence/nonadherence to ASMs among CWE.
Out of 294 eligible CWE contacted to participate in the study, 10 (3.4%) declined and 4 (1.36%) withdrew during the interview procedure (response rate (95%). This study monitored 280 epileptic children and adolescents. The eliminated participants shared traits with the cohort. 280 consecutive children with epilepsy who were started ASMs at least 3 months before to enrollment in this experiment and their carers met the inclusion criteria. The average age of research participants was 10.24±6.32 yrs., ranging from 6 months to 18 years. The sample was 56% male, and all of these youngsters were born in District Bhakkar. According to the Medication Adherence Scale-8 (MMAS-8), 226 patients (80.7% of the sample) adhered to the indicated anti-seizure medication (ASM) therapy. The ASM(s) therapy was non-adherent in 54 patients (19.3% of the study). Out of 153 school-aged youngsters, 41.2% were not attending. This proportion was broken into two categories: 19.6% of the youngsters never attended school, while 21.6% dropped out. The remaining 58.8% of children were actively studying. Among the CWE carers, 210 (75% of the sample) were mothers. 45 (16% of the sample) were dads, and 25 (9% of the sample) were other close relatives. Co-carers were helping in 240 participants (85.7%). Age and gender did not affect antiseizure drug nonadherence. However, remote living, not attending school, and having a non-primary carer mother were connected to ASM nonadherence (Table 1).
| No | Variables | Category | Frequency (%) | Adherent | Non-adherent |
| 1 | Total | 280 | 100% | 226 (80.7%) | 54(19.3%) |
| 2 | Child’s Gender | Male | 157(56%) | 129(82%) | 28(18%) |
| Female | 123(44%) | 97(78.8%) | 26(21.2%) | ||
| 3 | Child’s Age | ≥Mon to 2 yrs. | 67- 24 % | 55 (82%) | 12 (18%) |
| >2Yrs to 6 Yrs. | 60-21.4 % | 48 (80%) | 12 (20%) | ||
| >6Yrs to 10Yrs | 60-21.4 % | 48 (80%) | 12 (20%) | ||
| >10Yrs to 18Yrs | 75-26.8 % | 59 (79%) | 16 (21%) | ||
| 4 | Residence location | Urban/semi urban | 170-60.7% | 142(83.5%) | 28(16.5%) |
| Rural | 110-39.3% | 84(76.4%) | 26(23.6%) | ||
| 5 | Educational status of the child (≥6yrs of age), 153 (100%) | Did not join school | 30(19.6%) | 22(73.3%) | 8(26.7%) |
| Dropped from school/college | 33(21.6%) | 23(69.7%) | 10(30.3%) | ||
| Going to school/college | 90(58.8%) % | 80(88.8%) | 10(11.2%) | ||
| 6 | Primary Caregivers’ Relationship | Mother | 210-75% | 176(84%) | 34(16%) |
| Father | 45-16% | 33(73.3%) | 12(26.7%) | ||
| Others | 25-9% | 17(68%) | 8(32%) |
Table 1. Base line sociodemographic characteristics of study cohort, no 280(100%).
3. ii. Socio-economic& Cost-related factors associated with adherence/nonadherence to ASMs
This study found no association between ASM nonadherence and parental monthly income below 10,000 or over 50,000 Pakistani Rupees, but we are providing free brain health care services in this charity heath facility. Illiteracy among parents was a possible risk for nonadherence, but our
statistical analysis found no significant link. Non-adherence to antiepileptic medicine (ASM) regimens was 2.4 times greater in children with epilepsy whose parents expressed financial difficulty due to treatment. Table 2 shows no statistically significant link between nonadherence and high family size (>5family members).
| No | Variables | Category | Frequency (%) | Adherent | Non-adherent |
| 1 | Total | 280 | 100% | 226 (80.7%) | 54(19.3%) |
| 2 | Parents’/Carers’ monthly income in Pak. Rupees
| ≤5000 | 80 (25%) | 64(80%) | 16(20%) |
| ≥ 5000 to 10000 | 90(32%) | 72(80%) | 18(20%) | ||
| ≥10000 to 30000 | 60 (28.6 %) | 50 (83.3%) | 10 (16.7%) | ||
| ≥30000 to 50000 | 30 (10.8 %) | 23 (76.7%) | 7 (23.3%) | ||
| ≥50000 | 20 (3.6%) | 17 (85%) | 3 (15%) | ||
| 5 | Parents’/Carers’ Educational status
| Did not join school | 40(14.3%) | 28(70%) | 12(30%) |
| ≤ Middle | 80(28.6%) | 62(77.5%) | 18(22.5%) | ||
| ≥ Middle to ≤Matric | 90(32.1%) | 74(82.2%) | 16(17.8%) | ||
| ≥Matric | 70(25%) | 62(88.6%) | 8 (11.4%) | ||
| 6 | Parents’/Carers’ Expression of financial difficulties in managing CE | Expressed no difficulty | 210 (75%) | 180(85.7%) | 30(14.3%) |
| Expressed difficulty | 70(25%) | 46(65.7%) | 24 (34.3%) |
Table 11: Socio-economic& Cost-related factors associated with adherence/nonadherence to ASMs, no 280(100%)
3.iii Health care team and system in place associated with adherence/ nonadherence to ASMs among CWE.
Thirty study participants (10.7%) travelled more than 30 kilometers to reach RSUPHC. Public transit was used by 66.6% of participants for commuting. There was a substantial link between ASM nonadherence and centre distance and time. Patients who went long distances were 3.3 times more likely to be nonadherent. In 80 (28.6%) of the sample took more than 2 hours to reach RSUPHC. These individuals were twice as likely to be nonadherent as the 70 participants (25%) who reached RSUPHC in less than 60 minutes. The study examined doctor-patient communication and antiseizure drug adherence. We found that 18% of subjects lacked adequate childhood epilepsy (CE) and treatment information. Communication between doctors and patients improved antiseizure drug adherence. Only 13% of patients who reported good doctor-patient communication were nonadherent to their ASMs, while 48% of those who reported poor communication were. The longer waiting time at this facility dissatisfied 70 individuals (25%) and had a 34.3% nonadherence rate. In contrast, 210 individuals (75%) had no waiting time complaints and had 14.3% nonadherence. A friendly attitude among healthcare workers is linked to drug adherence. However, our cohort data did not support this link statistically. The study revealed no association between pharmacy service accessibility and antiseizure medication adherence. Only 30 CWE (10.7%) received inadequate epilepsy and antiseizure drug counseling in our study sample. In this subgroup, 14 (46.7%) did not take their prescribed medications. The remaining 250 trial participants (89.3%) who got thorough counseling had 40 (16%) nonadherence (Table III).
| No | Variables | Category | Frequency (%) | Adherent | Non-adherent |
| 1 | Distance from neurology clinic (RSUPHC) | <10km> | 100-35.7% | 88(88%) | 12(12%) |
| 10-20KM | 85-30.4% | 73(76%) | 12(14 %) | ||
| 20-30KM | 65- 23.2% | 55(84.5%) | 10(15.4%) | ||
| >30KM | 30-10.7 % | 18(60%) | 12(40%) | ||
| 2 | Time taken from home to health facility | < 60 minutes | 70(25%) | 60(85.7%) | 10(14.3%) |
| 1-2 Hours | 130(46.4%) | 110(84.6%) | 20(15.4%) | ||
| >2 Hours | 80(28.6%) | 56(70%) | 24(30%) | ||
| 3 | Communication skills in healthcare professionals | Perfect and appropriate | 230(82%) | 200(87%) | 30(13%) |
| Imperfect and inappropriate | 50(18%) | 26(52%) | 24(48%) | ||
| 4 | Waiting times | Short | 210(75%) | 180(85.7%) | 30(14.3%) |
| Long | 70(25%) | 46(65.7%) | 24(34.3%) | ||
| 5 | Welcoming attitude of healthcare professionals | Yes | 200(71.4%) | 165(82.5%) | 35(17.5%) |
| No | 80(28.6%) | 61(76.25%) | 19(23.75%) | ||
| 6 | Ease of access to pharmacy services | Good | 210(75%) | 170(81) | 40(19%) |
| Poor | 70(25%) | 56(80%) | 14(20%) | ||
| 7 | Parental/patients’counseling. | Good counseling | 250(89.3%) | 210(84%) | 40(16%) |
| Poor counseling | 30(10.7%) | 16(53.3%) | 14(46.7%) |
Table 111: Health care team and system in place associated with adherence/ nonadherence to ASMs, no 280(100%)
3. iv. Disease-related factors associated with adherence/nonadherence to ASMs among CWE.
Inadequate seizure management was linked to nonadherence in physician evaluations. The study indicated that 60.7% of patients had well-controlled seizures, 21.4% had limited control, and 17.9% had uncontrolled seizures; with nonadherence 14.1%, 20% and 36%, respectively. Parental seizure
management opinions differed little from medical opinions. Generalised epilepsy affected 200 patients (71.4%) with 15, unclassified epilepsy 50(17.9%) % and 28% and focal seizures 30(10.7%) with nonadherence 33.3% were documented in this study. Our cohorts included 220 (71.4%) epilepsy patients who had received treatment for more than two years. Antiseizure medication (ASM) duration did not affect adherence (Table- 4).
| No | Variables | Category | Frequency (%) | Adherent | Non-adherent |
| 1 | Physicians’ assessment of seizure control | Controlled no seizures over last 3 months | 170(60.7%) | 146(85.9%) | 24(14.1%) |
Partially controlled 1-2  | 60(21.4%) | 48(80%) | 12(20%) | ||
Uncontrolled/worsened
| 50(17.9%) | 32(64%) | 18(36%) | ||
| 2 | Parents’/ Patients’ perception of their seizure control | Controlled | 150(53.6%) | 130(86.7%) | 20(13.3%) |
| Partially controlled | 70(25%) | 56(80%) | 14(20%) | ||
| Uncontrolled/worsened | 60(21.4%) | 40(66.7%) | 20(33.3%) | ||
| 3 | Seizure Type | Generalize seizure | 200(71.4%) | 170(85%) | 30(15%) |
| unclassified seizure | 50(17.9%) | 36(72%) | 14(28%) | ||
| Focal seizure | 30(10.7%) | 20(66.7%) | 10(33.3%) | ||
| 4 | Disease duration | <1year> | 80(28.6%) | 65(81.5%) | 15(18.5%) |
| ≥1 Year to 2Years | 120(42.8%) | 95(79%) | 25(21%) |
Table 1V: Disease-related factors associated with adherence/ nonadherence to ASMs, no 280(100%)
3.v. Therapy-related factors associated with adherence/ nonadherence to ASMs among CWE.
In our study sample of 195(69.6%) participants on monotherapy had nonadherence in 13%, whereas, 85(30.4%) were receiving polytherapy and were nonadherent in 29% of the cases (Table 5 and 6). Three times a day of antimicrobial stewardship measures (ASMs) increased nonadherence thrice compared to once-a-day medication. Out of 190(67.9%) patients had no adverse effects, 60(21.4%) of patients reported fake and 30(10.7% had pharmacological side effects due to ASMs. Nonadherence was documented among 12.6%, 26.7% and 46.7%of these patients, respectively. Misconceptions about alternative and complementary medicine (ASM) were associated to nonadherence. In particular, 50% of the patients considering no efficacy of ASMs were nonadherent, 28.6% were nonadherent who believed in partial and only 14.1% had nonadherence believing in full efficacy of ASMs. Low treatment satisfaction was associated with 36.7% nonadherence, compared to 14.5% participants with high treatment satisfaction. Limited-knowledge of carers/ patients had a 30% nonadherence rate to antiseizure medicines. Patients with some understanding had a 22.5% nonadherence rate, whereas those with comprehensive knowledge had 15% (Table VI) nonadherence to antiseizure drugs (ASMs).
| No | ASMs Treatment: Self-reported/Record checked | |
| Monotherapy (195, 69.6%) | ||
| 1 | Carbamazepine | 60(30.77%) |
| 2 | Valproic acid | 45(23.07%) |
| 3 | Phenytoin | 30(15.38%) |
| 4 | Levetiracetam | 20(10.26%) |
| 5 | Phenobarbitone | 20(10.26%) |
| 6 | Oxcarbamazepine | 20(10.26%) |
| Polytherapy, ≥2ASMs (85, 30.4%) | ||
| 1 | Carbamazepine and Valproic acid | 25(29.4%) |
| 2 | Valproic acid and levetiracetam | 20(23.5%) |
| 3 | Carbamazepine and phenobarbitone | 16(18.8%) |
| 4 | Valproic acid+ Levetiracetam + Lamotrigine | 14(16.5%) |
| 5 | Valproic acid+ Levetiracetam+ Topiramate | 10(11.8%) |
Table V. Patients receiving monotherapy and polytherapy with antiseizure medicines (ASMs) (n=280-100%)
| No | Variables | Category | Frequency (%) | Adherent | Non-adherent |
| 1 | No of drugs | Monotherapy | 170(60.7%) | 148(87%) | 22(13%) |
| Polytherapy | 110 (39.3%) | 78(71%) | 32(29%) | ||
| 2 | Medication administration frequency | Once a day | 40(14.2%) | 36(90%) | 04(10%) |
| Twice a day | 165(59%) | 137(80%) | 28(20%) | ||
| ≥3 Times a day | 75(26.8%) | 53(70.7%) | 22(29.3%) | ||
| 3 | Adverse effects. | No adverse effects. | 190(67.9%) | 166(87.4%) | 24(12.6%) |
| Presumed adverse effects. | 60(21.4%) | 44(73.3%) | 16(26.7%) | ||
| Significant adverse effects. | 30(10.7%) | 16(53.3%) | 14(46.7%) | ||
| 4 | Perceived drug efficacy | Good efficiency | 170(60.7%) | 146(85.9%) | 24(14.1%) |
| Partially efficient | 70(25%) | 50(71.4%) | 20(28.6%) | ||
| Not efficient | 40(14.3%) | 20(50%) | 20(50%) | ||
| 5 | Treatment satisfaction | Satisfied | 220(78.6%) | 188(85.5%) | 32(14.5%) |
| Unsatisfied | 60(21.4%) | 38(63.3%) | 22(36.7%) | ||
| 6 | Treatment information | Complete information | 160(57.1%) | 136(85%) | 24(15%) |
| Partial information | 80(28.6%) | 62(77.5%) | 18(22.5%) | ||
| Incomplete information | 40(14.3%) | 28(70%) | 12(30%) |
Table VI: Therapy-related factors associated with adherence/ nonadherence to ASMs, no 280(100%)
3. vi. Patient-related factors associated with adherence/ nonadherence to ASMs
Knowledge about the disease and treatment had shown to have a strong association with the rate of adherence. The patients/caregivers with poor knowledge about epilepsy and its treatment were more (28.6%) nonadherent as compared to (16.2%) among those who had good knowledge about their disease. Among the study participants; 220(78.6%) were found to have positive attitude towards epilepsy and only 34(15.5%) among them were nonadherent as compared to 60(21.4%) with 20(33.4%) nonadherences among cohort with negative attitude. The association between perceived stigma and non-adherence was significant; caregivers/patients with perceived stigma were more 18(36%) were nonadherent as compared to
36(15.7%) of CWE with no perceived epilepsy stigma. Counseling provided by the treating physicians had good impact upon adherence; caregivers/patients who received poor counseling were 20(50%) nonadherent as compared to 34(14.2%) adherent who got good counseling. Overall belief about medications effectiveness was associated with better adherence to ASMs, but statistically this was not significant. Forgetfulness of administering ASMs was an important factor leading to nonadherence. One hundred and ninety-six of our cohort had no complaint of forgetfulness, but 84(30%) of our cohort had this complaint and 30(35.7%) of them were nonadherent as compared to 24(12.3%) of the patient who did not have this complaint (Table-7).
| No | Variables | Category | Frequency (%) | Adherent | Non-adherent |
| 1 | Parental knowledge about epilepsy | Good knowledge | 200(71.4%) | 176 (88%) | 24(12%) |
| Poor knowledge | 80(28.6%) | 50(62.5%) | 30(37.5%) | ||
| 2 | Patient/Parental attitude towards epilepsy | Positive Attitude | 220(78.6%) | 186(84.5%) | 34(15.5%) |
| Negative Attitude | 60(21.4%) | 40(66.6%) | 20(33.4%) | ||
| 3 | Epilepsy stigma | No epilepsy stigma | 230(82.1%) | 194(84.3%) | 36(15.7%) |
| Presence of epilepsy stigma | 50(17.9%) | 32(64%) | 18(36%) | ||
| 4 | Counseling for improving adherence | Counseling done | 240(85.7%) | 206(85.8%) | 34(14.2%) |
| Counseling not done | 40(14.3%) | 20(50%) | 20(50%) | ||
| 5 | Belief in effectiveness of ASMs | Effective | 250(89.3%) | 210(84%) | 40(16%) |
| Ineffective | 30(10.7%) | 18(60%) | 12(40%) | ||
| 6 | Forgetfulness | No forgetfulness | 196(70%) | 172(87.6%) | 24(12.3%) |
| Forgetfulness present | 84(30%) | 54(64.3%) | 30(35.7%) |
Table V1I: Patient-related factors associated with adherence/ nonadherence to ASMs, no 280(100%)
4.i. Base line demographic and clinical characteristics of the participants associated with adherence/nonadherence to ASMs among CWE.
Base line demographic and clinical characteristics of our study population are shown in Table-1. Rates of adherence to antiepileptic drugs are variable in different studies ranging between 20-80%. In children however, these rates are even lower estimated between 25 - 75 % [14]. This study found that 226(80.7%) CWE used the recommended antiseizure drugs, however, 19.3% disobeyed. Despite differences in adherence measurement, nonadherence was lower than in other studies [15, 16], but are in agreement with Nazziwa et al. [17]. However, free brain health care facilities are being provided in our charity primary health care facility. Self-reports and parent assessments typically overstate adherence. One study measured serum drug levels and self-adherence. Self-reported adherence accounted for 80% of rates; however, in the same study only 22% of individuals had medication levels that matched their adherence [18].
Age negatively affects medicine adherence [15, 19]. Jacob et al. (20) investigated 5214 epileptic youngsters and found in this study that children under 5 adhered to medicine more than previous research [16,17]. Data volatility may be due to age demographics. Current study indicated that rural residents (23.6%) were more likely to not take ASMs than urban residents (16.5%). Rural cultures may use religious and spiritual therapy due to traditional sickness beliefs. Rural and remote epilepsy services are scarce [21]. Discontinued students were approximately three times more likely to not take ASMs. The authors of this study agree with earlier research [22]. Our sample had 75% moms. Mothers followed instructions 84% of the time. The concerned fathers had 73.3
Due to recall bias and the use of clinical evidence for diagnosing and commencing ASMs for many CWE without EEGs, the results of a research conducted at a single free brain health care facility may not be generalizable to regional or national levels. In economically disadvantaged and geographically remote places, it may not be possible to provide a full range of pediatrics neurology treatments.
Recommendations
Public, commercial, and charitable health sectors could work with local and national vendors to give free ASMs and brain health treatment to all patients in financially disadvantaged areas, including Pakistan's outreach financially constrained areas. Local doctors should regularly check CWE for side effects and treat it with the safest medicine. Patient, family, and community health education in the local language may enhance medication and follow-up adherence. Finally, carers must urge patient adherence to ASMs.
Comprehensive epilepsy care for children requires understanding their condition, comorbidities, family, strengths, and weaknesses. 19.3% of CWE were non-adherent due to rural areas lacking infrastructure or neurology clinics. Healthcare practitioners should regularly assess ASM nonadherence and implement interventions to improve patients' beliefs, seizure control, and access to antiepileptic medicines. The study's findings may be limited due to recall bias and the use of clinical evidence.
We thank the RSUPHC Bhakkar, medical and paramedical personnel, study participants, data collectors, and supervisors for their contributions to this study.
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