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Health care delivery model in epilepsy to reduce treatment gap: World Health Organization study from a rural tribal population of India

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Health care delivery model in epilepsy to reduce treatment gap: World Health Organization study from a rural tribal population of India
  Epilepsy Research (2009)  84 , 146—152  journal homepage: Health care delivery model in epilepsy to reducetreatment gap: World Health Organization studyfrom a rural tribal population of India S. Haque Nizamie a , Sayeed Akthar a , Indrajeet Banerjee a , Nishant Goyal b , ∗ a Central Institute of Psychiatry, Kanke, Ranchi, Jharkhand 834006, India b Epilepsy Clinic & Centre for Cognitive Neurosciences, Central Institute of Psychiatry, Kanke, Ranchi, Jharkhand 834006, India Received 6 September 2008; received in revised form 13 January 2009; accepted 19 January 2009Available online 24 February 2009 KEYWORDS Treatment gap;Epilepsy;Strategies Summary Purpose:  To design and develop an effective health care delivery model in epilepsy to reducethe treatment gap in a rural tribal community in India. Method:  This study was conducted in tribal dominated Namkum Block (114,068 population) of Ranchi, Ranchi District, Jharkhand state, India and carried out as four-staged program—–firststage consisted of separate training programs (to 6 volunteer health workers, traditional prac-titioners of community including 267 faith healers and qualified practitioners), second stageconsisted of awareness campaign programs, third stage consisted of diagnosis, treatment deliv-ery and follow-up in once a month camps with free medication and final stage consisted of continued follow-up after the end of study by local practitioners. Results:  Health volunteers identified 787 probable cases in the community, 453 attended thecamps, and 318 were diagnosed and treated for epilepsy in the camp. Treatment gap was 95% onthe initial assessment. 213 epileptic patients enrolled in the study completed 12 months treat-ment and more than 75% were seizure free at the end of the study. Eighty percent of patients’care-givers and their family members were satisfied with the care provided. At the end of study, local medical practitioners continued to do the follow-up of study participants to ensurecontinuity of care although results of further follow-up are not included in the present study. Conclusion:  A four-staged program in epilepsy treatment delivery model was successful. Vol-untary health workers from the community can be effectively trained to identify cases andpersuadethemtoseektreatment.Thedeliverymodelshouldincludeintensivehealthawarenesscampaign, training of doctors and other health care providers, free supply of AEDs (Antiepilep-tic drugs), continuous follow-up for compliance and side-effects of the drug and tactful dealingwith indigenous practitioners and faith healers without antagonising them.© 2009 Elsevier B.V. All rights reserved. ∗ Corresponding author. Tel.: +91 6512542187(R)/91 651245115(O)/91 9431171162; fax: +91 6512233668. E-mailaddresses:, (N. Goyal). 0920-1211/$ — see front matter © 2009 Elsevier B.V. All rights reserved.doi:10.1016/j.eplepsyres.2009.01.008  Care delivery model to reduce treatment gap in epilepsy 147 Introduction Epilepsy is the most common neurological condition with aprevalence of 4—9 per 1000 (Sander and Shorovon, 1987),being 2—25 times higher in the developing world (Jallon,1997). Based on community surveys, it is estimated thatthere are 6—10 millions of epilepsy cases in India (GaurieDevi et al., 2004). A recent meta-analysis of publishedand unpublished studies puts the overall prevalence rate of epilepsy in India at 5.59 per 1000 populations, with no sta-tistically different rates between men and women or urbanand rural residence (Bharucha, 2003). The differing numbers may be due to various reasons, some of which may be unap-parent, attributable to misdiagnosis, varying definitions of epilepsy; or real due to relevant risk factors such as poverty,illiteracy, lack of medical facilities, accident related headtrauma, cysticercosis, tuberculosis or hot water seizures (DeBittencountetal.,1996).Earlymanagementofcasesmaybean attainable goal in developed countries, but the situationdiffers in countries like India where although 70% popula-tion is rural, paradoxically the 70% health service providersand almost all neurologists are concentrated in urban areas.This is compounded by presence of innumerable barriers totreatment viz. lack of awareness, poverty, cultural belief,stigma, etc. (Thomas et al., 2001).Appropriate treatment is lacking for the majority of Indian population suffering from epilepsy. Treatment gapis therefore defined as the difference between the numberof people with active epilepsy being treated appropriatelywith antiepileptic drugs (AEDs) in a given population at agiven point of time expressed in percentage (Meinardi et al.,2001). It has been roughly estimated in a survey carried outby a non-government organization (NGO) working in the fieldof disability, that the treatment gap for epilepsy in the tribaldistrict of Ranchi is more than 80% (unpublished data). Somepotential causes of this wide treatment gap are ignorance,lack of awareness, cultural beliefs of role of supernaturalcauses (Singh and Kaur, 1997), poverty, and distance from health care facilities and supply of AEDs prompting treat-ment by faith healers or traditional healers using herbaland animal remedies (Danesi and Adetuniji, 1994). Failure of compliance with drug regimen is also common in patientswith epilepsy and consequently, there is often increased riskof seizures, with reasons similar to treatment gap. A carefuldistinction should hence be made between deficits causedby health seeking patterns and those caused by lack of com-pliance, once appropriate treatment has been initiated.To correct this problem, various models of patient caredelivery have been tried. Satellite Clinic Model delivery of NIMHANS, Bangalore, India in joint collaboration with NGOshas been found to be very effective, the service consist-ing of 5 peripheral camps, where monthly camps are heldon fixed days and time with initial free drugs, awarenessprogram and follow-up as essential components (Reddy etal., 1986). It was possible to control epilepsy in 80% of peo-ple with phenobarbitone (PHB)/phenytoin in rural areas of Karnataka, India. Key to the success of this program was acombination of trained primary physician, health workers,inexpensive drugs, good compliance, health education andfollow-up strategies (Mani et al., 2001).Therefore, a need to evolve a community and culture-specific treatment model to reduce the treatment gap inepilepsy was felt, which could be used extensively in differ-ent parts of India with some variation to accommodate localbelief system and traditional treatment practices. Method This study was sponsored by World Health Organization (WHO) andconducted in tribal dominated Namkum Block of Ranchi, Ranchi Dis-trict, Jharkhand state, India having a population of: 1,14,068 (Rural91.07%; Urban 8.93%). This study was conducted from May 2005to July 2006 in collaboration with Epilepsy Clinic, Central Instituteof Psychiatry (CIP), Ranchi, India, where specialized epilepsy ser-vices are running successfully for more than three decades. Ethicalcommittee of CIP approved the study.This study was carried out as a four-staged program—–first stageconsisted of training programs, second stage consisted of awarenesscampaign programs, third stage consisted of diagnosis, treatmentand follow-up delivery in camps with free medication and final stageconsisted of continued follow-up after the end of study by localpractitioners. Second to fourth stage was conducted consecutivelyas well as simultaneously.In first training program stage, separate training programs werecarried out in CIP by experienced epileptologists (SHN & SA) of institute. All groups were trained with separate aim and objec-tives taking help of training manual provided by WHO. Non-qualifiedpractitioners were trained to identify and refer patients with majorfit (WHO-SEARO, 2004a) and qualified practitioners were trained to identify seizures with treatment and follow-up (WHO-SEARO,2004b,c).Six community health workers were recruited as voluntaryhealth workers and extensively trained to identify epilepsy in thecommunity. The area identified was divided into six parts and eachofthemwasassignedaparticularareaofactivity.Theywererespon-sible for door-to-door survey, awareness campaign, identificationof probable cases, persuasion to attend epilepsy camps, check-ing for compliance and reporting side-effects. Tribal culture beliefsinterfere with the diagnosis and management as they do not eas-ily approach health care system due to strong supernatural beliefswhich was one reason we included local faith healers and peoplefrom the same region and ethnicity to deliver services.Two hundred sixty seven faith healers practicing in the com-munity (identified earlier by non-government organization (NGO)working in disability) were persuaded to attend one day training in4 batches. The participants actively participated in the programand discussed their understanding of epilepsy and its causes. Avideo film on epilepsy, which was developed by South East AsianRegional Office (SEARO) of WHO was shown and discussion held inidentification and the social stigma attached with epilepsy. Withoutantagonizing the faith healers, it was agreed that they shall prac-tice their methods, except giving herbal or other medicine and willrefer the cases to the epilepsy camps. Training was also held for 06AYUSHpractitioners(Indiansystemofmedicine),14registeredmed-ical practitioners (other than MBBS) and for 42 Community HealthWorkers and ANMs working in Primary Health Centre (PHC), Namkumblock, run by the state government. Separate training program washeldfor11qualifiedmedicaldoctorspracticinginprivatesectorand06 Assistant Civil surgeons working in Primary Health Centre (PHC).In second stage of awareness campaign program, various aware-ness campaign program in study place were simultaneously carriedout, i.e., TV shows were broadcasted in different areas, posterspasted on different places to increase awareness about epilepsy andits treatment, pamphlets and brochures distributed and meetingsarranged with various community groups like faith healers, gram-sevaks (village workers), teachers, etc., for identification of cases.Slogans regarding treatability of epilepsy were generated by com-munity participation who volunteered in writing of the slogans onthe wall of the village.  148 S.H. Nizamie et al. Table 1a  Pathway of treatment of epilepsy (before intervention)  N  =318.Pathway of treatment Previous treatment  n  (%) At the time of enrolment  n  (%)Qualified (MBBS, MD) 20(6.3%) 16(5.0%)Indigenous & Registered practitioner 5(1.5%) —Faith healer 283(89.0%) 95(29.9%)No treatment 10(3.1%) 207(65.1%) In third stage the community health workers conducted adoor-to-door survey and identified 787 probable cases of epilepsyusing a semi-structured schedule; especially made-to-identify cases(Appendix A). These cases were persuaded to attend the monthly camp held in the area for diagnosis and treatment.The Namkum block was divided into four parts and a clinic washeld monthly in each camp on a fixed day and time. The clinic wasconducted by research team and psychiatry resident doctors work-ing in the epilepsy clinic of CIP, Ranchi. The identified were furtherevaluated for diagnosis, treatment and follow-up was done once.At the start of study, the qualified medical practitioners of com-munity (who were trained earlier) along with psychiatric residentof CIP confirmed the cases of epilepsy using WHO schedule (WHO-SEARO, 2004b) and initiated treatment with phenobarbitone (PHB). The cases were followed-up on monthly basis.In final stage, after the end of study, follow-up of study par-ticipants were carried out by local practitioners who were earliertrained by the research team. This was arranged to ensure theprovision of continued care for study participants. Operational definitions Epilepsy was defined as having two or more unprovoked generalizedtonic-clonic convulsions separated by at least 24h. Good compli-ance was defined as no missed dosages in a week; if missed in theevening, the dosage was taken in the morning. Partial compliancewas defined as up to 3 missed dosages in a week and non-compliancewas defined as 4 or more missed dosage in a week (WHO-SEARO,2004b).Patients were supplied PHB free of cost. Only in selected cases,the medical practitioners were permitted to prescribe other antiepileptics. 453 of the 787 probable cases attended the camp,of which 318 cases were diagnosed as having epilepsy. We haveassessed the pathway, the current consultation and reason for noton treatment for all diagnosed cases. But to see the effectivenessof treatment out of 318 diagnosed cases, first, second and thirdassessments at the end of every three months were possible for 213patients who were then taken up for final analysis. 102 patientscould not be assessed as they were late in attending the camp. Twopatients migrated and one died as seizure occur during taking bathin pond and drowned.The Compliance was verified by the voluntary health workersand non-compliant patients were persuaded to take the drugs andnot to miss the dosages. Side-effects of medication were monitoredusing standard checklist (WHO-SEARO, 2004b).At the end of study, local medical practitioners continued todo the follow-up of study participants to ensure continuity of carealthough results of further follow-up are not included in the presentstudy. Results At the time of the consultation in the camp out of the casesdiagnosed with epilepsy ( N  =318) only 20 (6.3%) had everconsulted a qualified practitioner and 16 (5%) were currentlyon treatment by qualified practitioner. 283 (89%) had con-sulted faith healers and 207 (65.1%) were not on any kindof treatment at the time of intervention by the researchteam (Table 1a). Table 1b shows profile of patients who constituted the treatment gap. Mean age of the popula-tion ( N  =308) was 22.17 year, majority (70%) were malesand 34.0% were students. 82% people came from a ruralbackground and 61.7% people were unmarried.The majority of cases (more than 70%) were below 30years. Approximately 70% were male, 36% married, 33% illit-erate and 45% educated up to high school. Occupation wise23% were farmers or labors, 34% students, and 8% were Table 1b  Socio-demographic description of cases repre-senting the treatment gap ( N  =298).Variables (Mean ± SD)Age (years) 22.17 ± 13.38Variables  n  (%)GenderMale 208 (69.8%)Female 90 (30.2%)OccupationFarmer/Labor 75 (25.2%)Business/service 9 (3%)Family vocation 46 (15.4%)Students 101 (34.0%)Laborers 25 (8.4%)Unemployed/retired 15 (5.3%)Disabled 7 (2.5%)Not applicable 20 (3.9%)Income (INR*)/yearLess than 5000 95 (31.9%)5000—10,000 125 (41.9%)10,000—50,000 78 (26.1%)Marital statusMarried 113 (37.9%)Unmarried 184 (61.7%)Widow/widower 1 (0.3%)HabitatRural 245 (82.2%)Urban 5 (1.6%)Semi-urban 48 (16.1%)ReligionHindu 88 (29.5%)Muslim 3 (1%)Christian 49 (16.4%)Sarana (local religion) 158 (53%)  Care delivery model to reduce treatment gap in epilepsy 149below school age and 8 (2.5%) persons were found to be dis-abled (mentally retarded). Most were either Hindu (30.2%)or followers of sarana (tribal religion) (52%). Sarana is a reli-gion in which locals worship a peculiar tree and named theirreligion as ‘Sarana’ derived from the tree on which theybelieve the God resides. The tribals have their own way of conscience, faith and belief. Basically, they believe in thesuper natural spirit called the ‘Singbonga’ (Tiwari, 2002).Rural population was 83%. Most of the families 73% werefound to be poor or below poverty line (Table 2).Phenobarbitone was prescribed to159 (74.6%) persons indosage ranging from 15 to 60mg (mean 35.66mg). 14 per-sons were prescribed Phenytoin, 10 sodium valproate and30 carbamazapine. Two persons were put on combinationof Phenobarbitone and Phenytoin. It was found that therewas a marked reduction in seizures. Seizure free popu-lations increased gradually in each follow-up. 63%, 69%,and 78% in first, second and third follow-up respectivelyreached to seizure free status. Only 8 (4%) persons have notshown significant improvement at the time of last assess-ment (Table 3).Morethan90%ofthepatientdidnothaveanyside-effectsthrough out the assessment. Drug compliance was a majorproblem in this study. Good compliance was reported onlyin less than 40% of the patients who were prescribed AEDs,about 20% were not fully compliant and 40% were found tobe severely non-compliant in all assessment, most of whobelieved that they did not require treatment or who had theproblem of economic or distance from the camp (Table 4).The excellent or good levels of satisfaction in thepatients’ condition were perceived in almost 80% of bothhealth care providers and by family members throughoutthe assessment (Table 5).The private practitioners and doctors’ practising in PHCs(government sector) were requested to continue the follow-upofthecasesandtosustaintheprogramme.Thedoctorsof the Government sector were persuaded to attend the train-ing program when they were pressurised from the higherauthorities, lacked motivation and did not continue the careof the identified cases. Discussion This study represents an approach with logistic and financialrestrains in developing epilepsy treatment delivery modelfor identification and management of epilepsy in a ruraltribal community of India. Trained voluntary health workerscan identify persons with epilepsy in the community who canalsopersuadepeopletoattendhealthcenterslocatedwithintheir reach. Our voluntary health workers identified 787 Table 2  Socio-demographic description of cases enteringin the model ( N  =318).Variables (Mean ± SD)Age (years) 21.68 ± 13.34Variables  n  (%)GenderMale 220 (69.2%)Female 98 (30.8%)OccupationFarmer/labor 76 (23.9%)Business/service 6 (1.9%)Family vocation 50 (15.7%)Students 108 (34.0%)Laborers 28 (8.8%)Unemployed/retired 15 (4.7%)Disabled 8 (2.5%)Not applicable 10 (3.2%)Income (INR * )/yearLess than 5000 105 (33.0%)5000—10,000 129 (40.6%)10,000—50,000 84 (26.4%)Marital statusMarried 119 (36.4%)Unmarried 198 (62.3%)Widow/widower 1 (1.3%)HabitatRural 263 (82.7%)Urban 5 (1.6%)Semi-urban 50 (15.7%)ReligionHindu 96 (30.2%)Muslim 5 (1.6%)Christian 50 (15.7%)Sarana (Local Religion) 167 (52.5%)Literacy/educationIlliterate 105 (33.0%)Literate (No formal education) 28 (8.8%)Up to high school (10th) 156 (49.6%)Intermediate (12th) and above 29 (7.6%) * Indian National Rupee. probable persons with epilepsy of which only 453 could bepersuadedtoattendthecamps.Theprobablecasesincluded318 persons with Epilepsy (defined as 2 unprovoked seizuresseparated by 23—48h), 20 cases of non-convulsive seizures,21 cases of alcohol induced seizures, 18 cases of febrile Table 3  Seizure frequency during the study period.Variable (status of generalizedseizure)  N  =213At the time of enrolment  n  (%)At 4 months n  (%)At 8 months n  (%)At 12 months n  (%)No seizure — 135(63.4) 147(69.1) 167(78.4)1—3 fits in last 4 months 140(65.7) 46(21.6) 41(19.2) 27(12.7)1—2 fits/month 40(18.81) 26(12.2) 24(11.3) 19(8.9)More than three fit/month 33(15.5) 6(2.8) 1(0.5) —  150 S.H. Nizamie et al. Table 4  Antiepileptic drug adverse effect and compliance during the study.Variable  N  =213 At 4 months  n  (%) At 8 months  n  (%) At 12 months  n  (%)Drug side-effectNo side-effect 194(91.1%) 205(96.2%) 209(98.1%)Mild side-effect 19(8.9%) 8(3.8%) 4(1.9%)Drug complianceGood compliance 85(39.9%) 77(36.2%) 78(36.6%)Not fully compliant 30(14.1%) 46(21.6%) 53(24.9%)Severe non-compliance 98(46.0%) 90(42.3%) 82(38.5%)Reasons for poor compliance  N  =128  N  =136  N  =135Economy/convenience problem 29(22.7%) 41(30.1%) 44(33.0%)No need of treatment 97(75.8%) 90(66.2%) 90(66.7)No benefit from treatment 2(1.6%) 5(3.7%) 1(0.7%) convulsions, 38 cases of single seizure attack and 9 casesof pseudo-seizure with 29 having no medical conditions,demonstrating that community workers may be effectivelytrained to screen all types of seizures if properly trained. Asmost of the patients in this study consulted a qualified prac-titioner for the first time in the camps, the mean duration of untreated epilepsy (DUE) was shorter (4.28 years) than hasbeen reported in other studies—–7.1 years in Yealandur study(Mani et al., 2001), 9 years in Ecuador study (Placencia et al., 1993) and 5 years in rural and semi-urban Kenya (Feski et al., 1991).This study reduced the treatment gap, which was foundto be an astounding 95%, although agreeing with figuresfrom developing countries (60—90%) which varies from38% to 80%, in India with the lowest figures from Kerala(Radhakrishnan et al., 2000), which has high rate of lit- eracy and awareness of health problems. We believe thatthe wide treatment gap may be multi-factorial, but lackof medical facilities and poverty has been reported to bemain reasons. A recent meta-analysis attributed causes tothe health systems; mainly inadequate skilled manpower,cost of treatment, and unavailability of drugs (Mbuba et al.,2008). However, failure to seek consultation may also be dueto lack of awareness (Resis, 1994), associated stigma (Danesi and Adetuniji, 1994), and reluctance to accept the diagno-sis (Buck et al., 1997). A major success of this model was in identifying and bringing a large number of patients fortreatment. From a population of 114,068, the health volun-teers could be identified 318 cases which constitute 2.7 per1000 which is considered to be a considerable achievementkeeping in view the average prevalence of Epilepsy in thecommunity. There was discrepancy in the male: female ratioasonlyabout30%consistedoffemalesandsincetherearenogender differences in prevalence of epilepsy, it is assumedthat females are still ‘‘protected’’ from being declared‘‘epileptic’’ in the community.One of the major barriers for patients’ seeking treatmentwere that of claims put forward by traditional and faithhealers of better identification and treatment of epilepsyin the community. By taking into confidence the 267 suchhealers, the research team was able to minimize the antag-onistic comments and maximize their co-operation. Thisstudy also found that 90% patients experienced improve-ment in their condition. PHB was found to very effectiveand most of the patients could be managed on lowerdosages; very few patients were shifted to other drugs oradd on drugs. Similar findings have been reported in othercommunity-based studies (Mani et al., 2001; Placencia etal., 1993; Feski et al., 1991; Adamolekun et al., 2000)demonstrating the possibility that majority of patients inthe community can be successfully treated using PHB andlocal health resources for treatment, instead of relying onthe availability of a neurologist or sophisticated investiga-tive procedures. Demonstration of rural epilepsy care modelin Karnataka, India has also successfully shown that peo-ple with epilepsy can be treated with inexpensive drugs likePHB/Phenytoin without taking recourse to costly investiga-tions (Mani et al., 2001). Table 5  Satisfaction with care among health care providers and family members.Variable  N  =213 At 4 months  n  (%) At 8 months  n  (%) At 12 months  n  (%)Satisfaction among health care providersExcellent 46(21.6) 48(22.5) 60(28.2)Good 117(54.9) 116(54.5) 118(55.4)No change 50(23.5) 49(23.0) 35(16.4)Satisfaction among family membersExcellent 54(25.4) 52(24.4) 63(29.6)Good 99(46.5) 100(46.9) 112(52.6)No change 60(28.2) 61(28.6) 38(17.8)
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