Abstracts
Objective
Characterize the social profile and the need of information from patients with refractory epilepsy.
Method
A semi-structured questionnaire was applied to 103 patients to investigate sociodemographic aspects, pharmacotherapy and any doubts about epilepsy.
Results
Patients were highly dependent on having a free and accessible supply of antiepileptic drugs. Sixty-eight percent of the population was unemployed, and 26% confirmed receiving social security benefits due to epilepsy. Twenty-nine percent of the population reached high school. Eighty-five percent of the patients had at least one doubt about epilepsy; treatment and epilepsy aspects in general were the main topics.
Conclusion
: As observed in developed countries, patients with refractory epilepsy from a developing country also have high rates of unemployment and low educational levels. The results raise a concern about the need of information about epilepsy by patients and their families, urging the necessity to invest in strategies to solve this deficiency in knowledge.
epilepsy; social evaluation; information; outpatient service
Objetivo
: Caracterizar o perfil social e a necessidade de informações por parte de pacientes com epilepsia refratária.
Método
Um questionário semi-estruturado foi aplicado a 103 pacientes para investigar aspectos sociodemográficos, farmacoterapia e quaisquer dúvidas sobre epilepsia.
Resultados
Os pacientes mostraram-se altamente dependentes de um fornecimento gratuito e acessível de drogas antiepilépticas. Sessenta e oito por cento da população estava desempregada, e 26% confirmaram receber algum benefício social devido à epilepsia. Vinte e nove por cento da população alcançou ensino médio. Oitenta e cinco por cento dos pacientes tinha ao menos uma dúvida sobre epilepsia; tratamento e aspectos gerais da epilepsia foram os principais temas.
Conclusão
Tal qual observado em países desenvolvidos, pacientes com epilepsia refratária em países em desenvolvimento também apresentam altas taxas de desemprego e baixos níveis educacionais. Os resultados são preocupantes no que diz respeito à necessidade de informações sobre epilepsia por parte dos pacientes e seus familiares, apontando a necessidade de se investir em estratégias que solucionem esta deficiência de conhecimento.
epilepsia; avaliação social; informação; serviço ambulatorial
Epilepsy, a chronic disorder affecting 1% to 2% of the world population, is mainly
characterized by the recurrence of epileptic seizures11 Ngugi AK, Bottomley C, Kleinschmidt I, Sander JW, Newton CR. Estimation of
the burden of active and life-time epilepsy: a meta-analytic approach. Epilepsia.
2010;51(5):883-90. http://dx.doi.org/10.1111/j.1528-1167.2009.02481.x
https://doi.org/10.1111/j.1528-1167.2009...
. It has been observed, on few last decades, an increased concern from
health care professionals towards other aspects related to the quality of life from patients
with epilepsy that are not only the control of seizures recurrence22 Viteva E. Impact of social factors on the quality of life of patients with
refractory epilepsy. Acta Neurol Taiwan. 2013;22(2):51-8.,33 Cramer JA. Quality of life for people with epilepsy. Neurol Clin.
1994;12(1):1-13.,44 Lu B, Elliott JO. Beyond seizures and medications: normal activity
limitations, social support, and mental health in epilepsy. Epilepsia. 2011;53(2):e25-8.
http://dx.doi.org/10.1111/j.1528-1167.2011.03331.x
https://doi.org/10.1111/j.1528-1167.2011...
,55 Sherman EM. Maximizing quality of life in people living with epilepsy. Can J
Neurol Sci. 2009;36 Suppl 1:S17-24..
Publications suggest that patients might be treated in a broader approach, giving importance
to psychosocial aspects, satisfaction with the medical treatment and their necessity to obtain
information about epilepsy from health care professionals66 Buck D, Jacoby A, Baker GA, Graham-Jones S, Chadwick DW. Patients'
experiences of and satisfaction with care for their epilepsy. Epilepsia 1996;37(9):841-9.
http://dx.doi.org/10.1111/j.1528-1157.1996.tb00036.x
https://doi.org/10.1111/j.1528-1157.1996...
,77 Poole K, Moran N, Bell G, Solomon J, Kendall S, McCarthy M et al. Patients'
perspectives on services for epilepsy: a survey of patient satisfaction, preferences and
information provision in 2394 people with epilepsy. Seizure. 2000;9(8):551-8.
http://dx.doi.org/10.1053/seiz.2000.0450
https://doi.org/10.1053/seiz.2000.0450...
.
Surveys conducted in different countries show that there are patients who do not know basic
aspects related to the epilepsy and its treatment, and often have mistaken beliefs88 Elliott J, Shneker B. Patient, caregiver, and health care practitioner
knowledge of, beliefs about, and attitudes toward epilepsy. Epilepsy Behav.
2008;12(4):547-56. http://dx.doi.org/10.1016/j.yebeh.2007.11.008
https://doi.org/10.1016/j.yebeh.2007.11....
,99 Long L, Reeves AL, Moore JL, Roach J, Pickering CT. An assessment of
epilepsy patients' knowledge of their disorder. Epilepsia. 2000;41(6):727-31.
http://dx.doi.org/10.1111/j.1528-1157.2000.tb00235.x
https://doi.org/10.1111/j.1528-1157.2000...
. The patients’ knowledge about their own medical condition is
associated with a better physician-patient relationship, improved patients’ ability to inform
about their situation and better therapeutic compliance1010 Lorig K. Self-management education: more than a nice extra. Med Care.
2003;41(6):699-701. http://dx.doi.org/10.1097/01.MLR.0000072811.54551.38
https://doi.org/10.1097/01.MLR.000007281...
.
The present study aimed to characterize the social profile and evaluate the need of information from adult patients with refractory epilepsy attending a tertiary referral service in Brazil.
METHOD
The protocol was approved by the Ribeirao Preto Clinical Hospital’s Ethics Committee and was performed in accordance with ethical standards. The sample evaluated was composed of outpatients ≥ 18 years old attending the refractory epilepsy clinic at the Ribeirao Preto Clinical Hospital, Brazil. In case of incapability to understand, the questionnaire was answered by the patient’s responsible caregiver/accompanying family member. All subjects gave their informed consent prior to the inclusion in the study.
The semi-structured questionnaire was elaborated by the Brazilian Association for Epilepsy (Chapter: Ribeirao Preto) and applied to 103 patients (approximately 10% of all adult patients attending the refractory epilepsy clinic), randomly chosen, while waiting to the medical visit. Questions evaluated sociodemographic factors and aspects related to pharmacotherapy, so as patients’ preferences regarding the health service level and if they knew the Brazilian Association for Epilepsy. If patients had doubts about epilepsy, questions could be specified in an open field at the end of the questionnaire. Complementary clinical data was obtained from medical records. The SPSS 17.0® software was used to verify for a possible relation between sociodemographic data and presence of doubts about epilepsy (Chi-square test, χ2). Level of significance adopted: p < 0.05.
RESULTS
Patients and treatment
Ninety-eight patients answered the questionnaire. The demographic characteristics of the sample population are displayed in Table 1.
All patients were in regular treatment. The mean number of antiepileptic drugs (AEDs) per patient was 2.6 ± 0.7 (mean ± standard deviation, SD), ranging from one to four.
Carbamazepine (CBZ) was the most commonly prescribed AED (Figure). Of the second generation AEDs, lamotrigine (LTG) was the most common. At the time of data collecting, LTG, TPM, vigabatrin (VGB) and gabapentin (GBP) were the second generation AEDs provided free of costs by the Brazilian public health care system, in addition to the first generation CBZ, phenytoin (PHT), phenobarbital (PB) and valproic acid (VPA). Within the 71 patients in treatment with ≥ 1 second generation AED provided free of costs, 22 reported having difficulties to obtain their AEDs at the time of the interview (lack of medications at the health units). From the 82 patients in treatment with ≥ 1 first generation AED provided free of costs, 54 patients (66%) reported getting their AEDs in health units (free of costs), and 12 patients said they did not refer to the public health system to obtain their first generation AEDs. Sixteen patients did not answer to this question.
Regarding patients’ preferences for sharing the medical care for epilepsy among different health services levels, approximately 27% of the patients confirmed receiving medical care with a neurologist both at the hospital and at another (primary or secondary) health care level.
Social aspects
The majority of the patients (68%) declared not to have a job at the time the study was conducted (Table 2). From these, only three individuals declared themselves as students. Regarding social security benefits such as pension or retirement, 26 patients (26%) confirmed receiving social security benefits due to epilepsy.
Doubts about epilepsy
The questionnaire had an open field so patients and/or caregivers could express any doubts they might have about epilepsy (Table 3). Only 15 patients declared having no doubts. No significant relationship was found between the presence or absence of doubts and the level of education (χ2 = 8.8; p = 0.1), sex (χ2 = 2.5; p = 0.1) and mean age (F1; 2.22 = 0.14).
According to Table 3, the most frequently asked topics referred to: (1) treatment, with doubts about a possible cure and/or surgery as the most frequent; (2) epilepsy in general (“what is epilepsy?” and “what causes epilepsy?”, for example); (3) employment and social security benefits, including what limitations epilepsy inputs over job activities and what are the procedures to obtain social security benefits; and (4) nonspecific epilepsy questions (all patients with such questions reported as having “doubts about everything”).
Patients were asked if they knew the Brazilian Association for Epilepsy; 23 patients (23%) answered that they were aware of the organization.
DISCUSSION
Aspects related to social functioning are, in general, considered as highly relevant by
patients with epilepsy and their family members1111 Suurmeijer TP, Reuvekamp MF, Aldenkamp BP. Social functioning, psychological
functioning, and quality of life in epilepsy. Epilepsia. 2001;42(9):1160-8.
http://dx.doi.org/10.1046/j.1528-1157.2001.37000.x
https://doi.org/10.1046/j.1528-1157.2001...
. Regardless of the sociodemographic context, patients worldwide,
especially those with refractory epilepsy, present common characteristics that claim for the
need of not only treating the seizures recurrence, but also of providing assistance for
psychosocial aspects that are increasingly being recognized as significant for a
well-succeeded treatment as a whole.
It is interesting to observe the relationship between a social (AEDs accessibility) and a
clinical aspect (the characteristics of pharmacological treatment). As reviewed by Mbuba and
co-workers1212 Mbuba CK, Ngugi AK, Newton CR, Carter JA. The epilepsy treatment gap in
developing countries: a systematic review of the magnitude, causes, and intervention
strategies. Epilepsia. 2008;49(9):1491-503.
http://dx.doi.org/10.1111/j.1528-1167.2008.01693.x
https://doi.org/10.1111/j.1528-1167.2008...
, the AEDs costs and
accessibility are important factors behind the treatment gap seen in developing countries.
The prescription patterns in our service are in congruence with the nationally-established
determinants that regulate the use of second generation AEDs (considered as high cost
medications) for treatment of refractory epilepsy in the Brazilian public health care
system. The restricted access to new AEDs in public services certainly plays a role on the
treatment profile demonstrated in Figure, especially regarding the low frequencies of use of
modern agents such as oxcarbazepine (OXC), levetiracetam (LEV) and pregabalin (PGB), widely
used in developed countries1313 Landmark CJ, Rytter E, Johannessen SI. Clinical use of antiepileptic drugs
at a referral centre for epilepsy. Seizure. 2007;16(4):356-64.
http://dx.doi.org/10.1016/j.seizure.2007.02.006
https://doi.org/10.1016/j.seizure.2007.0...
,1414 Malerba A, Ciampa C, De Fazio S, Fattore C, Frassine B, La Neve A et al.
Patterns of prescription of antiepileptic drugs in patients with refractory epilepsy at
tertiary referral centres in Italy. Epilepsy Res. 2010;91(2-3):273-82.
http://dx.doi.org/10.1016/j.eplepsyres.2010.08.002
https://doi.org/10.1016/j.eplepsyres.201...
.
Although we have not directly evaluated the patients’ satisfaction with the health care
service provided, it is known that the burden of the medication costs and the accessibility
difficulties are determinants for the treatment success and, consequently, for patients’
satisfaction1212 Mbuba CK, Ngugi AK, Newton CR, Carter JA. The epilepsy treatment gap in
developing countries: a systematic review of the magnitude, causes, and intervention
strategies. Epilepsia. 2008;49(9):1491-503.
http://dx.doi.org/10.1111/j.1528-1167.2008.01693.x
https://doi.org/10.1111/j.1528-1167.2008...
,1515 Jennum P, Gyllenborg J, Kjellberg J. The social and economic consequences of
epilepsy: a controlled national study. Epilepsia. 2011;52(5):949-56.
http://dx.doi.org/10.1111/j.1528-1167.2010.02946.x
https://doi.org/10.1111/j.1528-1167.2010...
.
Approximately 27% of the evaluated patients confirmed sharing the medical care between the
hospital and another health care level. Patients with refractory epilepsy usually need to be
followed in specialized tertiary services due to the complexity of the neurological
condition and the frequently seen comorbidities (Table
1). In general, patients in such circumstances are satisfied with the tertiary
service, although they still have criticisms regarding the resolvability of their seizures,
the short period of time spent in medical visits, and the deficiency in information
provision both in general aspects and specifically to their cases77 Poole K, Moran N, Bell G, Solomon J, Kendall S, McCarthy M et al. Patients'
perspectives on services for epilepsy: a survey of patient satisfaction, preferences and
information provision in 2394 people with epilepsy. Seizure. 2000;9(8):551-8.
http://dx.doi.org/10.1053/seiz.2000.0450
https://doi.org/10.1053/seiz.2000.0450...
,1616 Upton D, Thompson PJ, Duncan JS. Patient satisfaction with specialized
epilepsy assessment and treatment. Seizure. 1996;5(3):195-8.
http://dx.doi.org/10.1016/S1059-1311(96)80035-5
https://doi.org/10.1016/S1059-1311(96)80...
,1717 Goldstein LH, Minchin L, Stubbs P, Fenwick PB. Are what people know about
their epilepsy and what they want from an epilepsy service related? Seizure.
1997;6(6):435-42. http://dx.doi.org/10.1016/S1059-1311(97)80017-9
https://doi.org/10.1016/S1059-1311(97)80...
,1818 Jain P, Patterson VH, Morrow JI. What people with epilepsy want from a
hospital clinic. Seizure. 1993;2(1):75-8.
http://dx.doi.org/10.1016/S1059-1311(05)80106-2
https://doi.org/10.1016/S1059-1311(05)80...
. As
discussed by Poole and colleagues77 Poole K, Moran N, Bell G, Solomon J, Kendall S, McCarthy M et al. Patients'
perspectives on services for epilepsy: a survey of patient satisfaction, preferences and
information provision in 2394 people with epilepsy. Seizure. 2000;9(8):551-8.
http://dx.doi.org/10.1053/seiz.2000.0450
https://doi.org/10.1053/seiz.2000.0450...
, such
critiques of the tertiary level service commonly motivate the patients to, in parallel, look
for medical care on other levels, where they report having more personalized and familial
care. Nonetheless, sharing health care in different levels do not necessarily result
objectively in higher quality of care, as highlighted by Pugh and co-workers1919 Pugh MJ, Berlowitz DR, Rao JK, Shapiro G, Avetisyan R, Hanchate A et al. The
quality of care for adults with epilepsy: an initial glimpse using the QUIET measure. BMC
Health Serv Res. 2011;11(1):1. http://dx.doi.org/10.1186/1472-6963-11-1
https://doi.org/10.1186/1472-6963-11-1...
.
The majority of the patients confirmed not to have a job by the time of the interview
(Table 2). In fact, labor restrictions are frequent
in patients with epilepsy, especially in those with refractory epilepsy22 Viteva E. Impact of social factors on the quality of life of patients with
refractory epilepsy. Acta Neurol Taiwan. 2013;22(2):51-8.. The implications of unemployment or non-formal job on
patients quality of life are being increasingly investigated22 Viteva E. Impact of social factors on the quality of life of patients with
refractory epilepsy. Acta Neurol Taiwan. 2013;22(2):51-8.,44 Lu B, Elliott JO. Beyond seizures and medications: normal activity
limitations, social support, and mental health in epilepsy. Epilepsia. 2011;53(2):e25-8.
http://dx.doi.org/10.1111/j.1528-1167.2011.03331.x
https://doi.org/10.1111/j.1528-1167.2011...
,55 Sherman EM. Maximizing quality of life in people living with epilepsy. Can J
Neurol Sci. 2009;36 Suppl 1:S17-24..
Although part of the patients are indeed unable to work, the prejudice by employers is still
a significant barrier faced by the patients able to work, as highlighted by Smeets and
colleagues2020 Smeets VM, van Lierop BA, Vanhoutvin JP, Aldenkamp AP, Nijhuis FJ. Epilepsy
and employment: literature review. Epilepsy Behav. 2007;10(3):354-62.
http://dx.doi.org/10.1016/j.yebeh.2007.02.006
https://doi.org/10.1016/j.yebeh.2007.02....
in a vast literature
review.
Corroborating previous findings, the patients included in our study presented low
educational levels; less than one-third of the sample reached high school and only 3%
studied at university level (Table 2). Additionally
relevant are the five patients who stated never having gone to any school. In Brazil, no
schooling is equivalent to illiteracy, since homeschooling, common in other countries, is
not recognized as formal education. Certainly, the inclusion bias present in our study (only
patients with refractory epilepsy) plays a role in the educational level found. High
frequency of seizures, polytherapies, adverse events provoked by AEDs and comorbidities
(especially psychiatric), among other factors closely related to refractory epilepsy,
contributed to high levels of school dropout2121 Aguiar BV, Guerreiro MM, McBrian D, Montenegro MA. Seizure impact on the
school attendance in children with epilepsy. Seizure. 2007;16(8):698-702.
http://dx.doi.org/10.1016/j.seizure.2007.05.013
https://doi.org/10.1016/j.seizure.2007.0...
. Nonetheless, surveys performed in different sociodemographic
contexts indicate higher numbers of patients with refractory epilepsy who attained
university education, suggesting that simply having epilepsy, even if refractory, do not
limit access to education. The socio-cultural environment, independent from the disease,
also has a relevant influence on patients’ educational progresses2222 Social aspects of epilepsy in the adult in seven European countries. The
RESt-1 Group. Epilepsia. 2000;41(8):998-1004.
http://dx.doi.org/10.1111/j.1528-1157.2000.tb00285.x
https://doi.org/10.1111/j.1528-1157.2000...
.
Our results corroborate with data that emphasizes the need of obtaining information about
epilepsy by patients and their family members66 Buck D, Jacoby A, Baker GA, Graham-Jones S, Chadwick DW. Patients'
experiences of and satisfaction with care for their epilepsy. Epilepsia 1996;37(9):841-9.
http://dx.doi.org/10.1111/j.1528-1157.1996.tb00036.x
https://doi.org/10.1111/j.1528-1157.1996...
,77 Poole K, Moran N, Bell G, Solomon J, Kendall S, McCarthy M et al. Patients'
perspectives on services for epilepsy: a survey of patient satisfaction, preferences and
information provision in 2394 people with epilepsy. Seizure. 2000;9(8):551-8.
http://dx.doi.org/10.1053/seiz.2000.0450
https://doi.org/10.1053/seiz.2000.0450...
,88 Elliott J, Shneker B. Patient, caregiver, and health care practitioner
knowledge of, beliefs about, and attitudes toward epilepsy. Epilepsy Behav.
2008;12(4):547-56. http://dx.doi.org/10.1016/j.yebeh.2007.11.008
https://doi.org/10.1016/j.yebeh.2007.11....
,99 Long L, Reeves AL, Moore JL, Roach J, Pickering CT. An assessment of
epilepsy patients' knowledge of their disorder. Epilepsia. 2000;41(6):727-31.
http://dx.doi.org/10.1111/j.1528-1157.2000.tb00235.x
https://doi.org/10.1111/j.1528-1157.2000...
,1717 Goldstein LH, Minchin L, Stubbs P, Fenwick PB. Are what people know about
their epilepsy and what they want from an epilepsy service related? Seizure.
1997;6(6):435-42. http://dx.doi.org/10.1016/S1059-1311(97)80017-9
https://doi.org/10.1016/S1059-1311(97)80...
,1818 Jain P, Patterson VH, Morrow JI. What people with epilepsy want from a
hospital clinic. Seizure. 1993;2(1):75-8.
http://dx.doi.org/10.1016/S1059-1311(05)80106-2
https://doi.org/10.1016/S1059-1311(05)80...
,2323 Hayden M, Penna C, Buchanan N. Epilepsy: patient perceptions of their
condition. Seizure. 1992;1(3):191-7.
http://dx.doi.org/10.1016/1059-1311(92)90025-V
https://doi.org/10.1016/1059-1311(92)900...
,2424 Chappell B. Epilepsy: patient views on their condition and treatment.
Seizure. 1992;1(2):103-9. http://dx.doi.org/10.1016/1059-1311(92)90007-N
https://doi.org/10.1016/1059-1311(92)900...
,2525 Prinjha S, Chapple A, Herxheimer A, McPherson A. Many people with epilepsy
want to know more: a qualitative study. Fam Pract. 2005;22(4):435-41.
http://dx.doi.org/10.1093/fampra/cmi024
https://doi.org/10.1093/fampra/cmi024...
. It
is important to distinguish what is to evaluate the level of knowledge of the patients from
what is to evaluate their need of information. Jarvie and co-workers published widely used
questionnaires that measure (based on “true/false” questions) the patients’ level of
knowledge about epilepsy2626 Jarvie S, Espie CA, Brodie MJ. The development of a questionnaire to assess
knowledge of epilepsy: 1--General knowledge of epilepsy. Seizure. 1993;2 179185.
http://dx.doi.org/10.1016/S1059-1311(05)80125-6
https://doi.org/10.1016/S1059-1311(05)80...
,2727 Jarvie S, Espie CA, Brodie MJ. The development of a questionnaire to assess
knowledge of epilepsy: 2--Knowledge of own condition. Seizure. 1993;2(3):187-93.
http://dx.doi.org/10.1016/S1059-1311(05)80126-8
https://doi.org/10.1016/S1059-1311(05)80...
.
Although such questionnaires indicate the deficient areas of knowledge based on the high
rates of wrong answers, we believe that an open answer to the question “Do you have any
doubt about epilepsy? If yes, what is (are) your doubt(s)?” indicates more precisely the
needs of the patients since it focuses on what is really relevant for them. In addition, as
highlighted by Goldstein and colleagues1717 Goldstein LH, Minchin L, Stubbs P, Fenwick PB. Are what people know about
their epilepsy and what they want from an epilepsy service related? Seizure.
1997;6(6):435-42. http://dx.doi.org/10.1016/S1059-1311(97)80017-9
https://doi.org/10.1016/S1059-1311(97)80...
,
the demand for information is not necessarily related to the level of knowledge already
acquired by the patients.
The doubts were more frequently related to the treatment and cure of epilepsy, possible
causes and the disease characteristics (Table 3).
Through the perspective of health care professionals habituated to work with patients with
epilepsy, these can be considered basic questions. However, questions such as “what is
epilepsy?”, “what causes epilepsy?”, “does epilepsy have a cure?” are recurrent even in more
favorable socioeconomic contexts66 Buck D, Jacoby A, Baker GA, Graham-Jones S, Chadwick DW. Patients'
experiences of and satisfaction with care for their epilepsy. Epilepsia 1996;37(9):841-9.
http://dx.doi.org/10.1111/j.1528-1157.1996.tb00036.x
https://doi.org/10.1111/j.1528-1157.1996...
,77 Poole K, Moran N, Bell G, Solomon J, Kendall S, McCarthy M et al. Patients'
perspectives on services for epilepsy: a survey of patient satisfaction, preferences and
information provision in 2394 people with epilepsy. Seizure. 2000;9(8):551-8.
http://dx.doi.org/10.1053/seiz.2000.0450
https://doi.org/10.1053/seiz.2000.0450...
,99 Long L, Reeves AL, Moore JL, Roach J, Pickering CT. An assessment of
epilepsy patients' knowledge of their disorder. Epilepsia. 2000;41(6):727-31.
http://dx.doi.org/10.1111/j.1528-1157.2000.tb00235.x
https://doi.org/10.1111/j.1528-1157.2000...
,1717 Goldstein LH, Minchin L, Stubbs P, Fenwick PB. Are what people know about
their epilepsy and what they want from an epilepsy service related? Seizure.
1997;6(6):435-42. http://dx.doi.org/10.1016/S1059-1311(97)80017-9
https://doi.org/10.1016/S1059-1311(97)80...
,1818 Jain P, Patterson VH, Morrow JI. What people with epilepsy want from a
hospital clinic. Seizure. 1993;2(1):75-8.
http://dx.doi.org/10.1016/S1059-1311(05)80106-2
https://doi.org/10.1016/S1059-1311(05)80...
,2525 Prinjha S, Chapple A, Herxheimer A, McPherson A. Many people with epilepsy
want to know more: a qualitative study. Fam Pract. 2005;22(4):435-41.
http://dx.doi.org/10.1093/fampra/cmi024
https://doi.org/10.1093/fampra/cmi024...
, in
groups with controlled epilepsy66 Buck D, Jacoby A, Baker GA, Graham-Jones S, Chadwick DW. Patients'
experiences of and satisfaction with care for their epilepsy. Epilepsia 1996;37(9):841-9.
http://dx.doi.org/10.1111/j.1528-1157.1996.tb00036.x
https://doi.org/10.1111/j.1528-1157.1996...
,77 Poole K, Moran N, Bell G, Solomon J, Kendall S, McCarthy M et al. Patients'
perspectives on services for epilepsy: a survey of patient satisfaction, preferences and
information provision in 2394 people with epilepsy. Seizure. 2000;9(8):551-8.
http://dx.doi.org/10.1053/seiz.2000.0450
https://doi.org/10.1053/seiz.2000.0450...
,1818 Jain P, Patterson VH, Morrow JI. What people with epilepsy want from a
hospital clinic. Seizure. 1993;2(1):75-8.
http://dx.doi.org/10.1016/S1059-1311(05)80106-2
https://doi.org/10.1016/S1059-1311(05)80...
and
in different levels of health service (primary and/or secondary levels)66 Buck D, Jacoby A, Baker GA, Graham-Jones S, Chadwick DW. Patients'
experiences of and satisfaction with care for their epilepsy. Epilepsia 1996;37(9):841-9.
http://dx.doi.org/10.1111/j.1528-1157.1996.tb00036.x
https://doi.org/10.1111/j.1528-1157.1996...
,77 Poole K, Moran N, Bell G, Solomon J, Kendall S, McCarthy M et al. Patients'
perspectives on services for epilepsy: a survey of patient satisfaction, preferences and
information provision in 2394 people with epilepsy. Seizure. 2000;9(8):551-8.
http://dx.doi.org/10.1053/seiz.2000.0450
https://doi.org/10.1053/seiz.2000.0450...
,88 Elliott J, Shneker B. Patient, caregiver, and health care practitioner
knowledge of, beliefs about, and attitudes toward epilepsy. Epilepsy Behav.
2008;12(4):547-56. http://dx.doi.org/10.1016/j.yebeh.2007.11.008
https://doi.org/10.1016/j.yebeh.2007.11....
,1818 Jain P, Patterson VH, Morrow JI. What people with epilepsy want from a
hospital clinic. Seizure. 1993;2(1):75-8.
http://dx.doi.org/10.1016/S1059-1311(05)80106-2
https://doi.org/10.1016/S1059-1311(05)80...
,2525 Prinjha S, Chapple A, Herxheimer A, McPherson A. Many people with epilepsy
want to know more: a qualitative study. Fam Pract. 2005;22(4):435-41.
http://dx.doi.org/10.1093/fampra/cmi024
https://doi.org/10.1093/fampra/cmi024...
.
These doubts can be more common than supposed, but are not exteriorized because some
patients feel that the physicians are inaccessible and do not care about their
questions66 Buck D, Jacoby A, Baker GA, Graham-Jones S, Chadwick DW. Patients'
experiences of and satisfaction with care for their epilepsy. Epilepsia 1996;37(9):841-9.
http://dx.doi.org/10.1111/j.1528-1157.1996.tb00036.x
https://doi.org/10.1111/j.1528-1157.1996...
,2424 Chappell B. Epilepsy: patient views on their condition and treatment.
Seizure. 1992;1(2):103-9. http://dx.doi.org/10.1016/1059-1311(92)90007-N
https://doi.org/10.1016/1059-1311(92)900...
. Also, the short period of time spent at
the medical visits, specially at the tertiary level, impairs the establishment of a dialogue
that informs the patients considering their specific needs of information, even if
basic88 Elliott J, Shneker B. Patient, caregiver, and health care practitioner
knowledge of, beliefs about, and attitudes toward epilepsy. Epilepsy Behav.
2008;12(4):547-56. http://dx.doi.org/10.1016/j.yebeh.2007.11.008
https://doi.org/10.1016/j.yebeh.2007.11....
,2424 Chappell B. Epilepsy: patient views on their condition and treatment.
Seizure. 1992;1(2):103-9. http://dx.doi.org/10.1016/1059-1311(92)90007-N
https://doi.org/10.1016/1059-1311(92)900...
. However, patients with refractory epilepsy frequently have
cognitive and memory impairments, hence, it is possible that such patients were informed,
but they did not understand and/or retained the information77 Poole K, Moran N, Bell G, Solomon J, Kendall S, McCarthy M et al. Patients'
perspectives on services for epilepsy: a survey of patient satisfaction, preferences and
information provision in 2394 people with epilepsy. Seizure. 2000;9(8):551-8.
http://dx.doi.org/10.1053/seiz.2000.0450
https://doi.org/10.1053/seiz.2000.0450...
,1717 Goldstein LH, Minchin L, Stubbs P, Fenwick PB. Are what people know about
their epilepsy and what they want from an epilepsy service related? Seizure.
1997;6(6):435-42. http://dx.doi.org/10.1016/S1059-1311(97)80017-9
https://doi.org/10.1016/S1059-1311(97)80...
,2424 Chappell B. Epilepsy: patient views on their condition and treatment.
Seizure. 1992;1(2):103-9. http://dx.doi.org/10.1016/1059-1311(92)90007-N
https://doi.org/10.1016/1059-1311(92)900...
.
Independently from the reasons behind such questions, the data found reinforce the need of
investments on educational strategies. There is no consensus about the best way to deal with
the information provision. Some authors suggest the incorporation of multidisciplinary teams
(psychologists, social workers, nurses) to the health services1616 Upton D, Thompson PJ, Duncan JS. Patient satisfaction with specialized
epilepsy assessment and treatment. Seizure. 1996;5(3):195-8.
http://dx.doi.org/10.1016/S1059-1311(96)80035-5
https://doi.org/10.1016/S1059-1311(96)80...
,1717 Goldstein LH, Minchin L, Stubbs P, Fenwick PB. Are what people know about
their epilepsy and what they want from an epilepsy service related? Seizure.
1997;6(6):435-42. http://dx.doi.org/10.1016/S1059-1311(97)80017-9
https://doi.org/10.1016/S1059-1311(97)80...
,1818 Jain P, Patterson VH, Morrow JI. What people with epilepsy want from a
hospital clinic. Seizure. 1993;2(1):75-8.
http://dx.doi.org/10.1016/S1059-1311(05)80106-2
https://doi.org/10.1016/S1059-1311(05)80...
.
Some authors stress the effectiveness of distributing instructional materials to patients
and families77 Poole K, Moran N, Bell G, Solomon J, Kendall S, McCarthy M et al. Patients'
perspectives on services for epilepsy: a survey of patient satisfaction, preferences and
information provision in 2394 people with epilepsy. Seizure. 2000;9(8):551-8.
http://dx.doi.org/10.1053/seiz.2000.0450
https://doi.org/10.1053/seiz.2000.0450...
,1717 Goldstein LH, Minchin L, Stubbs P, Fenwick PB. Are what people know about
their epilepsy and what they want from an epilepsy service related? Seizure.
1997;6(6):435-42. http://dx.doi.org/10.1016/S1059-1311(97)80017-9
https://doi.org/10.1016/S1059-1311(97)80...
,1818 Jain P, Patterson VH, Morrow JI. What people with epilepsy want from a
hospital clinic. Seizure. 1993;2(1):75-8.
http://dx.doi.org/10.1016/S1059-1311(05)80106-2
https://doi.org/10.1016/S1059-1311(05)80...
, and others highlight the role of recommending associations with
whom patients can establish a convenient contact when searching for information1818 Jain P, Patterson VH, Morrow JI. What people with epilepsy want from a
hospital clinic. Seizure. 1993;2(1):75-8.
http://dx.doi.org/10.1016/S1059-1311(05)80106-2
https://doi.org/10.1016/S1059-1311(05)80...
,2525 Prinjha S, Chapple A, Herxheimer A, McPherson A. Many people with epilepsy
want to know more: a qualitative study. Fam Pract. 2005;22(4):435-41.
http://dx.doi.org/10.1093/fampra/cmi024
https://doi.org/10.1093/fampra/cmi024...
,2828 Pugh MJ, Berlowitz DR, Montouris G, Bokhour B, Cramer JA, Bohm V et al. What
constitutes high quality of care for adults with epilepsy? Neurology. 2007;69(21):2020-7.
http://dx.doi.org/10.1212/01.WNL.0000291947.29643.9
https://doi.org/10.1212/01.WNL.000029194...
.
The low percentage of patients who confirmed having knowledge of the Brazilian Association
for Epilepsy opens the perspective of the need to improve strategies to ameliorate the need
of information about epilepsy expressed by our patients and their families. There are
publications that support the implementation of psycho-educational groups as a way to inform
patients about epilepsy88 Elliott J, Shneker B. Patient, caregiver, and health care practitioner
knowledge of, beliefs about, and attitudes toward epilepsy. Epilepsy Behav.
2008;12(4):547-56. http://dx.doi.org/10.1016/j.yebeh.2007.11.008
https://doi.org/10.1016/j.yebeh.2007.11....
,2929 May TW, Pfafflin M. The efficacy of an educational treatment program for
patients with epilepsy (MOSES): results of a controlled, randomized study. Modular Service
Package Epilepsy. Epilepsia. 2002;43(5):539549.
http://dx.doi.org/10.1046/j.1528-1157.2002.23801.x
https://doi.org/10.1046/j.1528-1157.2002...
. As discussed by Prinjha and colleagues,
adopting only one strategy to instruct the patients may not be enough to overcome all
demands2525 Prinjha S, Chapple A, Herxheimer A, McPherson A. Many people with epilepsy
want to know more: a qualitative study. Fam Pract. 2005;22(4):435-41.
http://dx.doi.org/10.1093/fampra/cmi024
https://doi.org/10.1093/fampra/cmi024...
.
In spite of the value that the present study portrays, limitations must be taken into account so the data can be interpreted with consideration to some singularities. The inclusion of patients with refractory epilepsy does not necessarily represent all the patients with epilepsy. These are patients in a more severe medical condition which generally have comorbidities that influence psychosocial factors, and patients with comorbidities were not excluded. Although we acknowledge the importance of applying a semi-structured questionnaire, not adopting validated tools resulted in difficulties comparing our data to those in other studies. In addition, deeper investigations are needed to understand if the patients have more general doubts about epilepsy or if their doubts are only related to their own conditions, and if the profile of doubts from the families is different from that presented by the patients.
In conclusion, although inserted in a sociodemographic context different from that usually found in the literature, the patients with refractory epilepsy from a developing country such as Brazil similarly have high rates of unemployment, low educational levels and a tendency to be not married. The data presented raises a concern about the demand for information about epilepsy by the patients and their families. As this need is present in different social, cultural and economic scenarios, it is evident that there is a high need to invest in strategies to solve this deficiency in knowledge.
Acknowledgments
The authors would like to thank Dr Ariel Topletz for assistance with the English editing.
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-
Support: This work was supported by Conselho Nacional de Desenvolvimento Científico e Tecnológico, Brazil [schoolarship to P.F.L.]; Coordenação de Aperfeiçoamento de Pessoal de Nível Superior, Brazil [schoolarship to F.I.S.F.] and Fundação de Amparo à Pesquisa do Estado de São Paulo, Brazil [schoolarship to I.M.J.]. The sponsors had no role in design or conduct of the study; collection, management, analysis or interpretation of the data; or preparation, review or approval of the manuscript.
Publication Dates
-
Publication in this collection
Apr 2015
History
-
Received
02 Oct 2014 -
Received
13 Nov 2014 -
Accepted
02 Dec 2014