Summary: Purpose: This study was undertaken to determine what patients with epilepsy need to know about their condition, and to discern what differences exist between patients' perceptions of this need and the medical profession's perception of what patients should know.
Methods: Seventy-five consecutive patients with epilepsy and 56 medical personnel (residents and nurses) who were working in either Neurology or Neurosurgery Units were studied using a structured questionnaire consisting of 3 subsets with a total of 27 questions.
Results: Using a Likert scale, epilepsy patients gave high priority to their need for more information about “how epilepsy is diagnosed,”“the structure of the brain” (p < 0.05, p < 0.01, respectively), and “the diet that might prevent the attack” (p < 0.05) than did medical personnel. Our study also revealed that men were more concerned with questions regarding smoking and drinking than were women (p < 0.05, respectively), whereas married patients gave higher scores in the category of employment (p < 0.01) and contraception/pregnancy (p < 0.05) than did unmarried patients. The patients with one or more seizures per month rated higher scores on questions concerning the first aid at the time of attack and dosage of antiepileptic drugs (AEDs; p < 0.05, respectively) than did the patients with fewer than one seizure per month. The patients taking poly-AED treatment gave higher scores on six items related to AED therapy than did those receiving monotherapy. No significant differences were found with regard to the length of time patients had the condition, nor to educational level or current employment status.
Conclusions: An educational program for epilepsy patients should be developed on the basis of understanding that there are differences in perspectives among patients with different sociocultural contexts as well as between patients and medical personnel.
The appropriate management of epilepsy patients requires constant updating of patients' knowledge regarding this illness (1,2). In doing so, it is important to understand that the perspectives regarding various aspects of epilepsy may be different among individual patients according to their physical, educational, and cultural backgrounds (2). In addition, the perspectives may be different between epilepsy patients and medical personnel. Nevertheless, factors related to patient–patient or patient–medical personnel differences in perspectives of knowledge of epilepsy have seldom been studied previously. Investigating these factors is especially important in countries such as Korea where the strong presence of herbal or other alternative medicines appears to have provided the people with perspectives of an illness different from those based on medical science.
In the present study we attempted to elucidate the factors related to the differences in perspectives of educational needs in epilepsy patients as well as the differences in perspectives between epilepsy patients and medical personnel.
SUBJECTS AND METHODS
Our study population consisted of 75 consecutive patients with epilepsy (two or more unprovoked seizures) who visited the outpatient clinic of Seoul National University Hospital between July and November 1997. Excluded were the patients (a) who declined to participate, (b) who were not able to understand the directions and content of the questionnaire, or (c) who had had epilepsy for <3 years. Medical personnel included 22 residents and 34 nurses who were working in either Neurology or Neurosurgery Units for >6 months at the least. History taking confirmed that none of the medical personnel had experienced seizures.
One of the investigators (S.M.Y.) administered the questionnaire to patients and medical personnel. The questionnaire consisted of three main subsets with a total of 27 questions regarding medical knowledge about epilepsy (11 items), lifestyle adjustments of the patients with epilepsy (nine items), and antiepileptic drug (AED) treatment (seven items). The subjects responded to 27 questions on a 5-point Likert scale ranging from “the highest need (5)” to “the lowest need (1).” Responses to subsets of items were used to calculate subscale mean scores, reflecting educational need with specific aspects of epilepsy.
The questionnaire was developed based on information obtained from patients and experts in the field including an epilepsy specialist, neurology residents, and nurses working with patients with epilepsy (3). The instrument's internal validity was Cronbach alpha of 0.937.
The data were analyzed with descriptive statistics, Wilcoxon rank-sum test, and Kruskal–Wallis test, with the use of the SPSS statistical package. Nonparametric statistics were used because the data were not normally distributed.
Characteristics of the patients
The mean age, gender, education level, seizure frequency and duration, AED treatment, and subjective experience of side effects are summarized in Table 1.
Table 1. Patients' characteristics
|Mean age (SD) (yr)||30 (11)|
| Male||41 (54.7)|
| Female||34 (45.3)|
|Education level (yr)|| |
| <12||12 (16)|
| 12||30 (40.0)|
| ≥12||33 (44.0)|
|Working status|| |
| Working/studying||51 (68.0)|
| Not working||24 (32.0)|
|Married status|| |
| Yes||24 (32.0)|
| No||49 (65.4)|
| Divorced||2 (2.6)|
|Seizure frequency (/month)|| |
| <1||35 (47)|
| ≥1||40 (53)|
|Duration of seizures (yr)|| |
| ≤10||20 (27)|
| >10||55 (73)|
|AED treatment|| |
| None||5 (7)|
| Monotherapy||34 (45)|
| Polytherapy||36 (48)|
|Side effects of AED|| |
| Present||23 (31)|
| Not present||47 (69)|
Differences in perceived educational needs in each category between patients and medical personnel
Items regarding medical knowledge patients needed
Medical personnel gave higher scores for questions related to the symptoms of epilepsy (p < 0.01), first-aid management of the seizure attack (p < 0.01), and the aggravating and alleviating factors for epilepsy (p < 0.01, respectively) than did the patients, whereas epilepsy patients scored higher on questions regarding the diagnosis of epilepsy and the structure of the brain (p < 0.05, p < 0.01, respectively) than did the medical personnel. Of 11 items, the mean educational need score for medical personnel was not different from that of the patient group (Table 2).
Table 2. The differences in perceived educational needs between patients and medical personnel
|1. Medical knowledge regarding epilepsy|| || || || |
| Classification of epileptic seizures||4.03 (1.30)||4.23 (0.79)||4.29 (0.74)||4.16 (0.85)|
| How epilepsy develops||4.42 (0.94)||4.43 (0.63)||4.45 (0.68)||4.40 (0.58)|
| What are the symptoms of epilepsy?||4.28 (1.12)||4.52 (0.33)b||4.86 (0.20)||4.26 (0.53)c|
| How epilepsy is diagnosed?||4.31 (1.05)||3.8 (0.95)a||4.26 (0.68)||3.68 (1.14)|
| What is the structure of the brain?||4.22 (1.05)||3.49 (0.99)b||3.0 (0.75)||3.87 (1.16)c|
| The complications of epilepsy||4.51 (0.87)||4.77 (0.43)||4.81 (0.40)||4.72 (0.46)|
| The possibility of inheritance||4.56 (1.03)||4.64 (0.44)||4.68 (0.98)||4.60 (1.04)|
| Epilepsy: a kind of psychiatric disease?||4.14 (1.07)||4.39 (0.71)||4.48 (0.68)||4.28 (0.74)|
| The first-aid management of the seizure attack||4.24 (1.12)||4.93 (0.26)b||4.97 (0.18)||4.88 (0.33)|
| Aggravating factors for development of seizure||4.38 (0.93)||4.95 (0.23)b||4.94 (0.25)||4.96 (0.20)|
| Alleviating factors for development of seizure||4.57 (0.83)||4.88 (0.38)b||4.90 (0.30)||4.84 (0.47)|
| Mean||4.32 (1.06)||4.51 (0.56)||4.39 (0.91)||4.59 (0.69)|
|2. Lifestyles of patients with epilepsy|| || || || |
| Smoking||3.07 (1.71)||4.50 (1.13)b||4.65 (1.14)||4.32 (1.11)|
| Drinking||3.25 (1.63)||4.81 (0.62)b||4.65 (1.14)||4.64 (1.04)|
| Sleep||4.08 (1.18)||4.72 (0.63)a||4.58 (1.03)||4.52 (1.16)|
| Driving||3.55 (1.66)||4.68 (0.78)b||4.35 (1.43)||4.52 (1.16)|
| Job||3.60 (1.65)||4.74 (0.59)b||4.58 (0.99)||4.56 (1.16)|
| Marriage||4.14 (1.20)||4.78 (0.57)a||4.58 (1.09)||4.64 (1.04)|
| Contraception and pregnancy||4.17 (1.37)||4.78 (0.64)a||4.58 (1.15)||4.64 (1.64)|
| The diet that should be avoided||4.51 (0.77)||4.17 (0.94)||3.88 (0.79)||4.74 (1.13)c|
| The diet that might prevent an attack||4.51 (0.89)||4.12 (0.85)a||3.48 (0.67)||4.68 (1.03)c|
| Mean||3.98 (1.27)||4.57 (0.77)b||4.36 (1.15)||4.60 (1.03)|
|3. Antiepileptic drug (AED)|| || || || |
| Drugs used to control seizures||4.09 (1.05)||4.29 (0.79)||4.0 (0.67)||4.51 (0.90)c|
| Side effects of AEDs||4.37 (0.85)||4.79 (0.41)b||4.81 (0.40)||4.76 (0.44)|
| Possibility of cure with AED treatment||4.51 (1.00)||4.59 (0.53)||4.55 (0.57)||4.64 (0.49)|
| Effective duration of AEDs||4.55 (0.84)||4.57 (0.66)||4.68 (0.60)||4.44 (0.71)|
| The dosage of AEDs||4.11 (1.10)||4.75 (0.58)b||4.68 (0.98)||4.64 (0.70)|
| Regular administration of AEDs||4.22 (1.10)||4.95 (0.23)b||4.97 (0.18)||4.92 (0.28)|
| Duration of AED administration||4.66 (0.75)||4.79 (0.49)||4.84 (0.45)||4.72 (0.54)|
| Mean||4.36 (1.05)||4.66 (0.41)a||4.59 (0.65)||4.72 (0.59)|
Items regarding the lifestyles of patients
Of the 11 items regarding lifestyles, medical personnel gave higher values to all questions except those related to diet than did the patients. The patient group scored higher on the question about “the diet that might prevent the attack” (p < 0.05). The question on “the diet they should avoid” was scored with a marginal difference (p = 0.06). There were significant differences in the mean score on questions concerning lifestyle recommendations for epilepsy patients between the two groups (p < 0.01).
Questions regarding the use of AEDs
Of the seven questions on AEDs, medical personnel gave higher scores to items concerning the side effects of AEDs, dosage, and regularity of AED administration than did epilepsy patients. Significant differences were found between patient and medical personnel groups (p < 0.05).
Patients' perception of educational needs
There were no gender differences in the patients' expressed educational needs except that men had significantly higher scores on questions regarding smoking and drinking than did women (p < 0.05, respectively). Married patients scored higher in the category of employment (p < 0.01) and contraception/pregnancy (p < 0.05) than did unmarried patients. There were no significant differences in perceived educational needs between the patients with ≤10 years of epilepsy and with> 10 years' duration. No significant differences were found to be associated with the patients' completed schooling levels, nor to current employment status.
Regarding the patients' current controlled state of epilepsy, those with frequent seizures (one or fewer per month) rated higher scores on questions concerning the first aid at the time of attack and dosage of AEDs (p < 0.05, respectively) than did the patients with less frequent seizures (fewer than one per month). Significant differences were found between the groups with mono- and poly-AED treatment in six items related to AED therapy. The patients who had AED side effects scored higher in the items regarding job (p < 0.05), contraception/pregnancy (p < 0.05), AED treatment in relation to the cure of epilepsy (p < 0.05), and the dosage of AEDs (p < 0.01) than did the patients without side effects.
Differences among medical personnel (doctors vs. nurses)
Because medical personnel included both doctors and nurses, whose roles in the management of epilepsy patients are different, we analyzed the results of the two groups separately (see Table 2). In 22 of the 27 items, there were no significant differences between the two groups. However, the nurses assigned significantly greater importance to information regarding brain anatomy, types of AEDs, and diets (p < 0.01, respectively) than did doctors, whereas doctors scored higher on an item regarding the symptoms of epilepsy.
In this study, we attempted to investigate the perceived educational needs of patients with epilepsy and medical personnel, and the results were compared.
Our study revealed that educational level and employment status are not factors related to different perceptions of educational needs in epilepsy patients. However, gender and marital status were factors related to differences in perceived needs for epilepsy patients. Married patients scored higher on items concerning contraception/pregnancy and employment than did unmarried ones, and men were more concerned with questions about smoking and drinking than were women.
Crowford and Lee (4) previously claimed that women with epilepsy were found to want and need more information and counseling about issues related to contraception, pregnancy, and menopause. In our study, unmarried woman patients did not express concern on these matters, whereas the married patients, regardless of sex, expressed much interest in epilepsy and contraception/pregnancy. This may reflect the differences in social culture. In Korean society, unmarried people, especially women, are not sexually active, and women, unlike men, seldom smoke or drink (5).
Our results indicated that among the different categories of educational need, the mean for the perceived educational needs regarding medical knowledge was the same for both the patient group and medical personnel. However, we found that the patient group wanted more information on the structure of the brain and diagnosis of epilepsy. This finding concurs with others in which 40% of the subjects said they wanted extensive information on epilepsy (6), indicating that the educational package should be adjusted to include in-depth specific information available to those who need it.
Patients were less interested in information related to lifestyle adjustments (p < 0.01) than medical personnel thought they should be. The lack of educational need in lifestyle modification may due in part to the fact that the patients with epilepsy are not knowledgeable about their disorder, which was evidenced by previous reports (1,7). However, it is quite unlikely because there were no significant differences in educational needs in the aspects of medical knowledge regarding epilepsy and AED treatment between two groups. It is possible, however, that because the subjects in this study had had epilepsy for an average of 17 years, they might already have made adjustments in their lifestyles or, at least, have been aware of lifestyle changes.
However, patients in this study were more concerned than were doctors with those questions relating to diet, especially with what they should or should not consume. A ketogenic diet has been repeatedly shown to have some effects on refractory epilepsy in animal models (8,9), in children (10,11), and adults as well (12). However, it is possible that in Korea, where traditional (herb) medicine and herb-related food products are very popular, and herbal/alternative medicine is also strongly present, with its view to be publicly educated as well, the patients with epilepsy may have misconceptions regarding the treatment of epilepsy. For instance, traditional medicine considers epilepsy be cured after taking herbs or herb-related food products for a certain time. Therefore, this influence of herbal medicine may explain why our patients expressed an interest on diet as well as those items dealing with the possibility of cure with AEDs and the duration of taking AEDs rather than on the importance of regular administration of AEDs. This phenomenon is similar to that observed by Desai et al. (13) in India. Although the majority of patients in that study were well informed concerning the cause and treatment of epilepsy, more than half had nonetheless tried alternative treatment modalities.
We also looked at the differences in the educational needs of patients with epilepsy as perceived by nurses and doctors. In our study, nurses expressed concern that patients should know about the anatomy of the brain, the types of AEDs, and diets far more than did doctors. Our study concurs with the study by DiLorio et al. (14), which also found that doctors and nurses did not have the same perceptions. Nurses and patients shared the same perceptions regarding educational needs on diets and the structure of the brain. One might speculate that this latter perception could be shared by nurses and patients because both have little knowledge of the brain's anatomy. But it also is possible that many patients have misinformation about the brain and epilepsy, believing, for example, that the brain structure of a person with epilepsy is grossly abnormal, and that nurses, as the ones who counsel patients and educate them on their illnesses (14–18), are therefore acutely aware of the misconceptions patients have in this area.
Our study has some limitations. First, because our samples were recruited from a tertiary hospital in Seoul, the patients having well-controlled epilepsy are likely to have been underrepresented. Moreover, illiterate, retarded, or dementia patients with epilepsy were certainly underrepresented because we excluded those patients who were not able to understand the directions and content of the questionnaire. Third, it must be mentioned that our study population is culturally unique because of prevailing social prejudice regarding employment and marriage of people with epilepsy; although 84% (63 patients) have a secondary or better education, one third of the population were unemployed and unmarried. Therefore our results cannot be generalized.
In conclusion, this study found first, the patients with different characteristics need specific information that pertains to their cases. Second, our study shows that patients view educational needs differently than do health care providers. Therefore, effective educational programs should be tailored to accommodate the specific patient's characteristics, and they should also be geared to narrow the differences in the perspectives between the patients and medical personnel. The cultural and specific societal contexts in which patients experience their epilepsy should guide educational programs, and one of the most sensible ways to assess those contexts is to elicit an articulation and expression of concerns from the patients themselves.