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See all >12 CitationsSee all >38 References40.34 · King's College LondonAbstractA rehabilitation approach has been adopted for many long-term neurologic conditions, but not for epilepsy. The disabilities associated with epilepsy are cognitive, psychological, and social, which are not as readily identified by medical doctors as are physical disabilities. A rehabilitation approach moves the emphasis from a medically driven process to a focus on the personal, social, and physical context of long-term illness. It is suggested that a missed opportunity for education and support for self-management occurs after diagnosis. This results in disadvantage to those whose educational level and knowledge of epilepsy are low. People who do not achieve epilepsy control may then experience higher levels of psychological distress, and a negative cycle of loss of self-efficacy, poor epilepsy control, social disadvantage, and disability. Rehabilitation services have benefited communities surrounding centers of excellence. Not so in epilepsy. Despite centers of excellence, areas with deprivation have higher than national average levels of patients reporting a seizure in the prior year, and higher emergency hospital admissions. Specialists working in partnership with general practitioners (GPs) and practice nurses can do more to increase participation and reduce distress for people with epilepsy. When available, GPs and nurses with special interest in epilepsy promote integrated services. Primary-secondary networks are likely to be more effective in preventing downward drift. This requires evaluation.Discover the world's research100 million publications2.5 million new publications each month10 million members
The social causes of inequality in epilepsy and developinga rehabilitation strategy: A U.K.-based analysisLeone RidsdaleDepartment of Clinical Neuroscience, Institute of Psychiatry, King’s College, London, United KingdomSUMMARYA rehabilitation approach has been adopted formany long-term neurologic conditions, but not forepilepsy. The disabilities associated with epilepsyare cognitive, psychological, and social, which arenot as readily identified by medical doctors as arephysical disabilities. A rehabilitation approachmoves the emphasis from a medically driven pro-cess to a focus on the personal, social, and physicalcontext of long-term illness. It is suggested that amissed opportunity for education and support forself-management occurs after diagnosis. Thisresults in disadvantage to those whose educationallevel and knowledge of epilepsy are low. Peoplewho do not achieve epilepsy control may thenexperience higher levels of psychological distress,and a negative cycle of loss of self-efficacy, poorepilepsy control, social disadvantage, and disabil-ity. Rehabilitation services have benefited commu-nities surrounding centers of excellence. Not so inepilepsy. Despite centers of excellence, areas withdeprivation have higher than national averagelevels of patients reporting a seizure in the prioryear, and higher emergency hospital admissions.Specialists working in partnership with generalpractitioners (GPs) and practice nurses can domore to increase participation and reduce distressfor people with epilepsy. When available, GPs andnurses with special interest in epilepsy promoteintegrated services. Primary–secondary networksare likely to be more effective in preventing down-ward drift. This requires evaluation.KEY WORDS: Epilepsy, Rehabilitation, Self-care,General practice, Social inequality.The aim of this paper is to describe disability in epilepsyand provoke debate about applying a model of rehabilita-tion. Epilepsy is not usually conceptualized as requiringrehabilitation. Most adults with epilepsy experience par-oxysmal loss of
between attacks they haveno signs of weakness, rigidity, or incoordination. Rehabil-itation is frequently associated with physical
butwith epilepsy, disability is likely to be cognitive, psycho-logical, and social, which are not as readily identified bymedical doctors as are physical disabilities. Rehabilitationrequires a multidisci plinary team to work together withthe patient and family to identify the nature and extent ofthe problems and factors relevant to their resolution, andto then intervene with treatment and support. It is reitera-tive, active, educational, and problem solving—focusedon a patient’s behavior. The aim is to max imize a patient’sparticipation in his or her social setting, and to minimizestress and distress for the patient’s family and caregivers.This paper highlights the char acteristics that signal morecognitive and psychosocial disadvantage for people withepilepsy, and identifies limitations in current services. Toexamine how the rehabilitation model might be appliedspecifically, needs and services will be described in depthfor the United Kingdom. It is proposed that health caresystems, in this case the National Health Service (NHS)develop rehabilitation designed to increase a patient’scapacity to participate in the community, and reduce dis-tress and inequality throughout life (Wade & de Jong,2000). This can be achieved more efficiently by develop-ing skills and partnerships between hospital-based special-ist services and general practice.There are approximately 48 million adults (StatisticsGovernment UK, 2008) in the United Kingdom, and288,000 (0.6%) adults treated for epilepsy in general prac-tice (R idsdale et al., 1996b). There are about 575 full-timeadult neurologists, so about 500 adults with epilepsy couldbe seen in long-term follow -up by each one. The incidenceof epilepsy was once highest in children. The onset ofAccepted March 12, 2009; Early View publication June 1, 2009.Address correspondence to Leone Ridsdale, Institute of Psychiatry,King’s College London, Denmark Hill Campus, London, SE5 8AF, U.K.E-mail: Leone.Ridsdale@iop.kcl.ac.ukWiley Periodicals, Inc.? International League Against EpilepsyEpilepsia, 50(10):, 2009doi: 10.1111/j.09.02150.xCRITICAL REVIEW AND INVITED COMMENTARY2175
Page 1epilepsy is now higher in older adults, with cerebrovascu-lar disease being the most common cause of epilepsy(15%) (Sander et al., 1990). Sudden death is three timesmore common in
it affects about 800 people withepilepsy per year (Majeed et al., 2000). It is more likely toaffect working-age people, particularly young
it fre-quently occurs in a context in which there has been loss ofcontinuity and communication about care, and poor epi-lepsy
mortality has not declined in recent years(Bruce et al., 2008).New Onset EpilepsyThe role of the general practitioner in epilepsy involvesproblem definition first, differentiating between syncopeand epilepsy, and other clinical conditions, and asking awitness to be available at a specialist appointment. Whenthe diagnosis is suspected, the general practitioner (GP)should give advice on risk management, including thepositioning of an unconscious person, and driving restric-tions. Although important, this advice is frequently notprovided, partially because doctors find it difficult to copewith conflict that sometimes occurs when individuals areadvised that they can no longer drive. The National Insti-tute for Clinical Excellence (NICE) Guidelines (NationalInstitute for Clinical Excellence, 2004) recommend thatpatients with suspected epilepsy see a doctor with special-ist training. Assuming a ratio of 2:1 patients referred withsuggestive symptoms for every one diagnosed, specialists(mostly neurologists) can see on average 100 new referralsfor suspected epilepsy per year. At this early point tertiaryprevention should be provided, which is the prevention ofdeath and disability by the comprehensive and systematiccare of established disease. The provision of information,support, and team communication after diagnosis is argu-ably the weakest link at this stage (Ridsdale et al., 2003).Patients we interv iewed and asked about the diagnosiscommented (Ridsdale et al., 1999b):They didn’t give me hardly anything (information), justsort of said, please take these tablets. (F, 56);I was left high and dry. (M, 59).A factor likely to be important for patient self-care ofepilepsy in the long term is the individual’s own knowl-edge and understanding of their condition. In people withnewly diagnosed epilepsy, our research group found themedian score for knowledge of epilepsy was 43 of 55 on aknowledge questionnaire, with a wide range of 12–51(Ridsdale et al., 2000). Not having general educationalqualifications (General Ce rtificate of Secondary Educa-tion, GCSEs) was associated with lower knowledge of epi-lepsy (one-third of the general population has noqualifications). Compared to those in the highest knowl-edge of epilepsy quartile at baseline, those who were in thelowest quartile had median scores 12 points lower on theknowledge scale (36 vs. 48) (Ridsdale et al., 2000).General education and specific epilepsy knowledge arelikely to be important in self-care of a long-term condition.Ideally, an epilepsy specialist nurse, or other key-worker will start by offering advice and support after diag-nosis. We randomized new patients with epilepsy afterdiagnosis by a neurologist to see nurse speci alists or tohave usual medical care. The nurses acted as key workers.Referrals were made, when indicated, to social services,psychology, occupational therapy, an employment officer,or the learning disability team. After a nurse-led input, themean knowledge score was five points higher in the inter-vention group (43 vs. 37) for the group in the lowest quar-tile of knowledge of epilepsy compare d to the cont rolgroup (Ridsdale et al., 2000). Whatever their baselinescores, patients who were offered nurse-led input weresignificantly more likely to report they had receivedenough information to manage different aspects of life,and they were significantly more satisfied with this input(Ridsdale et al., 2000).Epilepsy Care in the Long TermAfter patients have been diagnosed, some are difficultto stabilize. This may be a straightforward biomedicalchallenge, requiring a trial of different medications. How-ever, the problems may be psychosocial. The diagnosis ofepilepsy is a loss or blow to the patient’s self-perception.A range of reactions include denial, anger, bargaining, anddepression, as well as acceptance. Negative psychologicalreactions to the diagnostic label may limit a patient’sability to take in new knowledge. In responding to newinformation about a long-term condition, patients canbe classified as ‘‘information seekers,’’ ‘‘weavers,’’ and‘‘avoiders’’ (Pinder, 1990). Providers of education andsupport must negotiate and change tactics as individualswith epilepsy go through stages of emotional adjustment,and again when people with epilepsy change their socialroles, like making the decision to start a family. Medicalstaff who work in hospitals are less well situated to beaware of the social and family changes than GPs and prac-tice nurses, who usually provide wide-ranging advice,including family planning. In interviews we found thatyounger people with epilepsy were concerned with copingwith issues like driving, jobs, and managing their families.Older people tended to see epilepsy as just another prob-lem to cope with, and often needed help to manage apolypharmacy regimen for epilepsy and vascular disease(Ridsdale et al., 2003).In a study of people with long-term epilepsy (average23 years duration), we found patients achieved no highermedian knowledge scores (42.5) than those with newlydiagnosed epilepsy (Ridsdale et al., 1999a). People withchronic epilepsy, with no general educational qualifica-2176L. RidsdaleEpilepsia, 50(10):, 2009doi: 10.1111/j.09.02150.x
Page 2tions (GCSEs) had less knowledge of epilepsy comparedto those with GSCEs or higher qualifications (39 vs. 43).Lower epilepsy knowledge scores were also found in olderpeople compared to younger people (37 vs. 43), those wholeft school earlier rather than later (40 vs. 43), and thosenot belonging to self-help groups versus those belonging(42 vs. 45). Multiple regression showed these predictorshad independent effects, so the additive consequences ofsocial disadvantage on knowledge of epilepsy are consid-erable (Ridsdale et al., 1999a).After diagnosis, most patients in the United Kingdomare transferred back to their GP with a recommended drugregimen. If epilepsy attacks persist on treatment this mayhave further psychological and social impact, with distressand social withdrawal. Depression is the consequence oflife events and difficulties without sufficient support interms of close, intimate, confiding relationships. Usingquestionnaires to estimate the likelihood of being‘‘a case,’’ we found age affected the reaction to older peopl e with epilepsy were mor e depressed, whereasyounger people felt more stigmatized (Ridsdale et al.,1996a). Depression, anxiety, and stigma are increasedwhen epilepsy attacks are more recent or frequent(Ridsdale et al., 1996a), (Kimiskidis et al., 2007). Peoplewith poorly controlled epilepsy are not vocal in expressingneeds. Psychologists use the term ‘‘self-efficacy’’ todescribe an attribut e that helps individuals to provide self-care for a condition. Lack of self-efficacy may contributeto poor epilepsy control, and if this is accompanied bydepressive comorbidity, loss of self-efficacy can also be aconsequence. It is important to inquire about psychologicalsymptoms in on-going assessments, as untreatedpsychological distress contributes to a vicious cycle,whereby individuals lose their ability to self-care and cope.Who Should Deliver Long-TermEpilepsy Care, and Where?In the United Kingdom almost everyone is registeredwith a GP continuously until they move or die. Thissystem, which consists of multidisciplinary teams usingsophisticated computer software, has enabled GPs tocreate disease registers of those in their population withlong-term conditions such as cardiac disease and diabetesand provide long-term management, much of which isdelivered by nurses. In the 1990s, GPs expressed lack ofconfidence and competence in providing epilepsy care(Thapar et al., 1998). This does not correspond withpatient preferences. Our research group found 50% ofpatients preferred GP care, 20% preferred shared GP andspecialist care, 10% preferred specialist care, and 20%had no preference (Ridsdale et al., 1996b). When patientswere asked who might be most useful in providing care forparticular aspects of epilepsy, they valued the input of anurse specialist more highly than that of a neurologist orGP for providing information, advice, and counseling(Scambler et al., 1996).In the 2000s, epilepsy became the first neurologic con-dition for which primary care practitioners were paid spe-cifically to do routine monitoring, through the Quality andOutcome Framework (QOF) (The Information Centre,2008). With this opportunity for increased income there is GPs and practice nurses must graduallyincrease their competence and confidence in managingepilepsy. Traditionally, neurologists have been lessavailable or involved in GP education and advice in thecommunity than diabetes or asthma specialists are. Thismay change, as the number of neurologists in the UnitedKingdom has tripled over the last 15 years. There isemerging evidence that GPs with additional training andwith Special Interest (GPwSI) in neurology can provideeducation to other GPs, and contribute to strategic serviceplanning (Ridsdale et al., 2008; Rogers, 2008).Ideally, those with long-term epilepsy should get ser-vices that match their illness severity at different points intheir lives. Attacks vary in type, frequency, and severity.In one region we found those with an epilepsy attack in theprior 6 months were more likely to see a specialist(Ridsdale et al., 1996b). This was reassuring, but anational study found no such association (Hart & Shorvon,1995). Without direct access to all patients with epilepsy,specialists find it difficult to judge who they should orshould not follow up. If specialists hold on to somepatients with moderately well-contro lled epilepsy, theybecome less accessible to new patients needing diagnosis,which everyone agrees should be provided by a specialist.Holding on to some patients also makes specialists lessaccessible to patients with long-term epilepsy, who havenew difficulty managing at a later point in their lives.GPwSI and nurse specialists, where they are available,have a useful triage role matching services to need, suchas helping patients who are newly diagnosed to transferaway from specialist care, and manage their condition inthe community (Rogers, 2008). GPwSI and nurse special-ists may help some patients with long-term epilepsy, whenthey have life changes—for example, planned pregnancy,loss of epilepsy control, or, conversely, no attacks—withquestions about whether an individual can come off medi-cation. There is evidence about the characteristics ofpatient groups who are more likely to have no recurrencefollowing planned medication withdrawal (Med ResCounc Antiepileptic Drug Withdr awal Study Group,1991), (Kwan & Sander, 2004). A false perception held bysome professionals and patients that epilepsy is a perma-nent diagnosis, means that some patients are not offeredthe choice of trying to stop drugs.The addition of neurology to training for general prac-tice (Education Unit, 2008), and extra income for epilepsymonitoring in general practice provided under QOF (The2177Inequality in Epilepsy and Rehabilitation StrategyEpilepsia, 50(10):, 2009doi: 10.1111/j.09.02150.x
Page 3Information Centre, 2008), marks a watershed. It signalsacceptance of responsibility for neurologic problems inUnited Kingdom primary care. Presently the number ofcriteria and points achievable for epilepsy care are small.An incremental approach is sensible if GPs and practicenurses are to build up capacity through continuing educa-tion and experience, just as they did previously with simi-lar conditions, like diabetes and asthma. In the long run,patients with epilepsy need ongoing rehabilitation withpersonalized care plans including information about diag-nosis, investigat ion, prognosis, medications, efficacy,side-effects, adherence, drug interactions, free prescrip-tions, epilepsy triggers, lack of sleep, alcohol, drugs andstress, first aid management, women’s issues if applicable,safety in the home, driving, stigm a, anxiety and depres-sion, and support organizations. This approach is sup-ported by self-groups, and will merit more QOF points.There is some way to go, particularly in tacklinginequalities. Ashworth et al. (2007) have pointed out thatthe collection of points that result in payments through theQOF is lower in socially deprived areas. When epilepsycare is measured specifically, there is much variation . Forexample two inner London boroughs, Lambeth and South-wark, are served by two Foundation Trusts with expertisein epileptology and epilepsy
they are in the top10% of deprived areas. Current national QOF data show40% of people with epilepsy have had an attack in theprior year (Ashworth, personal communication), but 50%of people with epilepsy in these two boroughs have had anattack in the prior year. The rate of sudden death inepilepsy is also higher in areas of multiple deprivation(Goldacre et al., 2005). Shohet et al. (2007) showed thatpoor epilepsy control measured by the QOF is stronglyassociated with higher levels of emergency epilepsy-related hospitalization. About 6:1 of hospital admiss ionsfor epilepsy are for emergency and not planned (Ma jeedet al., 2000). Rehabilitation targeted to those most in need,as identified through QOF data, might potentially improvelives, and reduce NHS cost.Networks working across primary and hospital sectorscan show the extent to which poor epilepsy control insocially deprived areas is remediable. The NHS plan toprovide access for diagnosis and management to everyonewithin 18 weeks may contribute to strategic thinking. In atleast one area, GPs, GPwSI, neurologists, and managersare planning for common neurologic conditions, produc-ing integrated pathways for common disorders and mak-ing recommendations for joined-up care.TheRoleofNationalandInternational ResearchThe lack of evidence of efficacy of self-care versusrehabilitation in chron ic epilepsy creates scope forresearch. Interventions for epilepsy need to be devel-oped and evaluated with the aim of reducing inequali-ties, unnecessary hospital attenda nce with admission,and sudden unexplained death. NHS policymakershave facilitat ed general practice taking a lead in pro-viding intermediate care role for the long-term man-agement of conditions like cardiac disease anddiabetes for the United Kingdom population. If long-term epilepsy care is to be developed, it is likely tobe built on the same infrastructure. Ideally, researchfunders will suppor t exploratory studies, includingqualitative research, as well as randomized trials toevaluate rehabilitation. The NHS have started commis-sioning such work in the United Kingdom (Ridsdaleet al., 2009).Each country has a different pattern of health servicedelivery (Dua et al., 2006), which is determined by theirindividual history, geography, cultur al values, andresources. Health service policymakers and researchersin each country can apply the model of rehabilitationusing local evidence to judge whether it might benefitpatients. Differences between countries provide opportu-nities for comparative research. For example, in manyother Western countries there are more specialists,including neurologists (Association of British Neu rolo-gists, 2002), and this allows specialists to provide ‘‘pri-mary care’’ for more patients with long-term conditions.There is little evidence about the optimal skill-mix inmanaging epilepsy long-term. If neurologists providefollow-up for most epilepsy patients, this could in theorybe associa ted with more information and support beingprovided, and disability being prevented. This is a test-able hypothesi s. An alternative hypothesis is that multi-disciplinary teams are more effective in preventingdisability (Wade & de Jong, 2000). Whether a rehabili-tation service is more effective and equitable if based ina hospital, primary care, or in an overarching network,like cancer care, is also in principle testable by meansof health services research.Health services research that evaluates the efficacy ofepilepsy care and rehabilitation within a country can pro-vide the substrate for future international comparisons,and stimulate questioning and change. The aim is to gener-ate new and better care models and systems for epilepsycare. A successful outcome will include identification,prevention, and reduction of the cognitive, psychological,and social disability that affects people with epilepsy, sothat in the future epilepsy is no longer considered aCinderella syndrome.AcknowledgmentsThe author acknowledges funding from the NHS Service Delivery &Organization R&D Programme (SDO), Project No:08/, andhelpful feedback from Referees, Drs E. Beghi and P. Schwartzkroin.2178L. RidsdaleEpilepsia, 50(10):, 2009doi: 10.1111/j.09.02150.x
Page 4I confirm that I have read the Journal’s position on issues involved in ethi-cal publication and affirm that this report is consistent with those guide-lines.Disclosure: I have no conflicts of interest to disclose.ReferencesAshworth M, Seed P, Armstrong D, Durbaba S, Jones R. (2007) The rela-tionship between social deprivation and the quality of primary care: anational survey using indicators from the UK Quality and outcomesframework. Br J Gen Pract 57:441–448.Association of British Neurologists. (2002) Acute neurological emergen-cies in adults. ABN, London. [Generic].Bruce M, Griffiths C, Brock A, Majeed A. (2008) Trends in mortality andhospital admissions associated with epilepsy in England and Walesduring the 1990s. Health Stat Q 21 (Spring):23–29.Dua T, Hanneke MDB, Prilipko LL, Shekhar S. (2006) Epilepsy care inthe world: results of an ILAE/IBE/WHO global campaign againstepilepsy survey. Epilepsia 47:.Education Unit. (2008) RCGP. 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Full-text· Article · Mar 2015
ABSTRACT: Aim of the study:
To review the modalities of cognitive rehabilitation (CR), outcome endpoints, and the levels of evidence of efficacy of different interventions.
A systematic research in Pubmed, Psychinfo, and SCOPUS was performed assessing the articles written in the entire period covered by these databases till December 2013. Articles in English, Spanish or French were evaluated. A manual research evaluated the references of all of the articles. The experimental studies were classified according to the level of evidence of efficacy, using a standardized Italian method (SPREAD, 2007), adopting the criteria reported by Cicerone et al. ().
Eighteen papers were classified into two reviews, four papers dealing with the principles and efficacy of CR in epilepsy, a methodological paper, a single-case report, a multiple-case report, and nine experimental papers. Most studies involved patients with temporal lobe epilepsy. Different types of CR were used to treat patients with epilepsy. A holistic rehabilitation approach was more useful than selective interventions to treat memory and attention disturbances.
Conclusions:
CR may be a useful tool to treat cognitive impairment in patients with epilepsy. However, the modalities of treatment and outcome endpoints are important concerns of clinical care and research. Controlled studies are needed to determine the efficacy of rehabilitation in well-defined groups of patients with epilepsy.No preview · Article · Nov 2014 · Epilepsy Research
Full-text· Article · Dec 2011 · Frontiers in Neurology
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