quality of life in adult patients with epilepsy

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Epilepsin , 37(Suppl 3): 37-40, 1996 Lippincott-Raven Publishers, Philadelphia 0 International League Against Epilepsy Quality of Life in Symposium I Adult Patients with Epilepsy Toshiaki Kugoh Department of Neuropsychiatry, Kagawa Medical School, Kagawa, Japan Summary: Quality of life (QOL) must be determined from the patients’ subjective viewpoint. To determine QOL in epilepsy, it is necessary to use disease-specific scales. We introduced the Side Effects and Life Satisfaction (SEALS) scale to Japan and performed a comparative study on adult patients with epilepsy and normal subjects. The results for patients with epilepsy were determined by the number of prescribed antiepileptic drugs (AEDs), the total dosage, and the type of epilepsy. Problems in patients with epi- lepsy were expressed by vertically crossing lines. A hori- zontal line expressed the severity of disease, and a vertical line expressed the psychosocial functioning. Therefore we cannot separate the severity and QOL when considering the influence of epilepsy disorders on individual patients. These two components compose the biphasic dimensions of QOL and thus are analyzed coincidentally. The con- cepts of QOL and comprehensive management in epilepsy are closely‘ related, but the fundamental viewpoints are located at opposite positions. The former is based on the physicians’ viewpoints and the latter on the patients’ view- points. Although ideally these two concepts should be in harmony, they are in reality frequently dissociated. In comprehensive management, the treating physician must vigorously consider the influence of therapy on the patients’ QOL. Key Words: Adult-Epilepsy- Outcome assessment-Quality of life-Seizures. The modern concept of quality of life (QOL) arose in England during the Industrial Revolution in the nineteenth century. This sociologic concept has been applied to the medical field and called health- related QOL, which reflects the degree of satisfac- tion of patients as the end users of medicine. The therapeutic outcome needs to be judged from two aspects (i.e., QOL and quantity of life). QOL must be determined from the patients’subjective view- point, the physicians’ objective viewpoint being de- liberately excluded. Devinsky and Cramer (1) stated that the balance between the patients’ perceived and desired status is the essence of QOL. ESTIMATION OF QOL When estimating QOL of patients with epilepsy, many components related not only to seizures and adverse antiepileptic drug (AED) events but also to psychosocial functioning should be examined. The vast majority of QOL scales have involved a self- rating method to represent the patients’ subjective Address correspondence and reprint requests to Dr. T. Kugoh at Department of Neuropsychiatry, Kagawa Medical School, Ikenobe 1750-1, Miki-cho, Kita-gun, Kagawa, 761-07, Japan. viewpoint. One of the most characteristic aspects of epilepsy is the coexistence of ictal and interictal periods, which have extremely different features. To determine QOL of patients with epilepsy, it is necessary to use disease-specific scales. Dodrill et al. (2) proposed an objective method for the assessment of psychologic and social problems among patients with epilepsy called the Washington Psychosocial Seizure Inventory (WPSI). The WPSI does not aim to estimate QOL but is one of the valuable QOL scales for epileptic patients (3). Hoso- kawa et al. (4) reported the WPSI results of a multi- institutional study in Japan, which involved 652 adult patients with epilepsy. However, the aspects measured by the WPSI are partial, and so it is neces- sary to use other QOL scales to estimate the many aspects of QOL in patients with epilepsy. Recently the necessity to develop novel QOL scales for people with epilepsy has been empha- sized. In England, the Side Effects and Life Satisfac- tion (SEALS) scale, which was proposed by Brown and Tomlinson (3, has been used as a QOL scale. We introduced SEALS to Japan with the permission of the original investigators. SEALS comprises a self-rating battery of 50 questions with five subscales 37

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Page 1: Quality of Life in Adult Patients with Epilepsy

Epilepsin , 37(Suppl 3): 37-40, 1996 Lippincott-Raven Publishers, Philadelphia 0 International League Against Epilepsy

Quality of Life in

Symposium I

Adult Patients with Epilepsy

Toshiaki Kugoh

Department of Neuropsychiatry, Kagawa Medical School, Kagawa, Japan

Summary: Quality of life (QOL) must be determined from the patients’ subjective viewpoint. To determine QOL in epilepsy, it is necessary to use disease-specific scales. We introduced the Side Effects and Life Satisfaction (SEALS) scale to Japan and performed a comparative study on adult patients with epilepsy and normal subjects. The results for patients with epilepsy were determined by the number of prescribed antiepileptic drugs (AEDs), the total dosage, and the type of epilepsy. Problems in patients with epi- lepsy were expressed by vertically crossing lines. A hori- zontal line expressed the severity of disease, and a vertical line expressed the psychosocial functioning. Therefore we cannot separate the severity and QOL when considering

the influence of epilepsy disorders on individual patients. These two components compose the biphasic dimensions of QOL and thus are analyzed coincidentally. The con- cepts of QOL and comprehensive management in epilepsy are closely‘ related, but the fundamental viewpoints are located at opposite positions. The former is based on the physicians’ viewpoints and the latter on the patients’ view- points. Although ideally these two concepts should be in harmony, they are in reality frequently dissociated. In comprehensive management, the treating physician must vigorously consider the influence of therapy on the patients’ QOL. Key Words: Adult-Epilepsy- Outcome assessment-Quality of life-Seizures.

The modern concept of quality of life (QOL) arose in England during the Industrial Revolution in the nineteenth century. This sociologic concept has been applied to the medical field and called health- related QOL, which reflects the degree of satisfac- tion of patients as the end users of medicine. The therapeutic outcome needs to be judged from two aspects (i.e., QOL and quantity of life). QOL must be determined from the patients’subjective view- point, the physicians’ objective viewpoint being de- liberately excluded. Devinsky and Cramer (1) stated that the balance between the patients’ perceived and desired status is the essence of QOL.

ESTIMATION OF QOL

When estimating QOL of patients with epilepsy, many components related not only to seizures and adverse antiepileptic drug (AED) events but also to psychosocial functioning should be examined. The vast majority of QOL scales have involved a self- rating method to represent the patients’ subjective

Address correspondence and reprint requests to Dr. T. Kugoh at Department of Neuropsychiatry, Kagawa Medical School, Ikenobe 1750-1, Miki-cho, Kita-gun, Kagawa, 761-07, Japan.

viewpoint. One of the most characteristic aspects of epilepsy is the coexistence of ictal and interictal periods, which have extremely different features. To determine QOL of patients with epilepsy, it is necessary to use disease-specific scales.

Dodrill et al. (2) proposed an objective method for the assessment of psychologic and social problems among patients with epilepsy called the Washington Psychosocial Seizure Inventory (WPSI). The WPSI does not aim to estimate QOL but is one of the valuable QOL scales for epileptic patients ( 3 ) . Hoso- kawa et al. (4) reported the WPSI results of a multi- institutional study in Japan, which involved 652 adult patients with epilepsy. However, the aspects measured by the WPSI are partial, and so it is neces- sary to use other QOL scales to estimate the many aspects of QOL in patients with epilepsy.

Recently the necessity to develop novel QOL scales for people with epilepsy has been empha- sized. In England, the Side Effects and Life Satisfac- tion (SEALS) scale, which was proposed by Brown and Tomlinson (3, has been used as a QOL scale. We introduced SEALS to Japan with the permission of the original investigators. SEALS comprises a self-rating battery of 50 questions with five subscales

37

Page 2: Quality of Life in Adult Patients with Epilepsy

38 T. KUGOH

(cognition, dysphoria, temper, tiredness, and worry). Because the questions included in SEALS are not specific for epilepsy, it is possible to perform a comparative study with patients with other dis- eases or with normal subjects.

We performed such a comparative study by using SEALS with 75 adult ambulatory patients with epi- lepsy and 149 normal subjects. Figure 1 shows a comparison of the mean SEALS percentile values between the two groups. Increasing values mean that there are greater problems in the respective fields. The values for those with epilepsy are greater than those for normal subjects in all the fields, and differences are statistically significant (p < 0.05) ex- cept for tiredness. The results for patients with epi- lepsy are determined by the number of prescribed AEDs, the total dosage (which is expressed as drug units), and the type of epilepsy. The influence of seizure frequency is weak, and there is no relation with age or sex. We selected 24 white-collar and

FIG. 1. Comparison of the mean per- centile of side effects and life satisfac- tion (SEALS) values between patients with epilepsy and normal controls.

24 blue-collar workers from among patients with epilepsy. Figure 2 shows a comparison of the mean SEALS percentile values between these two groups. The values for the former are smaller than those for the latter in all the fields, the difference being statistically significant (p < 0.05). There are no dif- ferences regarding the number of AEDs, the total dosage, seizure frequency, or type of epilepsy be- tween these two groups. Accordingly, we conclude that the influence of the occupational status is an independent determinant of QOL.

Table I compares the characteristic features of the WPSI and SEALS as QOL-estimating scales. These two scales have quite different features. We consider that the combined use of these two scales is suitable for convenient estimation of QOL in pa- tients with epilepsy. Then the disadvantages of these tests are compensated for by each other, and com- prehensive appreciation of QOL is correctly at- tained.

FIG. 2. Comparison of the mean per- centile of side effects and life satisfac- tion (SEALS) values between white- collar and blue-collar workers with epi- lepsy.

Page 3: Quality of Life in Adult Patients with Epilepsy

QOL IN ADULTS WITH EPILEPSY 39

TABLE 1. Comparison of the characteristic features of the Washington Psychosocial Seizure Inventory (WPSI) and the Side Effects and Life Satisfaction (SEALS) scale

WPSI SEALS

Disease specificity for epilepsy Comparative study with other conditions Sensitivity to psychosocial problems Sensitivity to adverse drug reactions Sensitivity to types of seizures Presence of validity scales

Specific Impossible Stronger Weaker Weaker? Present

Not specific Possible Weaker Stronger Stronger? Absent

SEVERITY OF EPILEPTIC SEIZURES

In consideration of QOL and the comprehensive management of epilepsy, it is important to judge accurately the severity of epileptic syndromes or seizures. Formerly the severity was solely estimated from the physicians’ viewpoint by using seizure fre- quency as a single measure. However, many authors have postulated that this method is irrational from the viewpoint of QOL. Janz (6) indicated that “se- verity’’ of a disease is a relative expression, and its definition will vary depending on the perspective of the observer. The patient’s subjective perception of the disease, the way it is regarded socially by the community, and the doctor’s objective assessment rarely coincide. In fact, they are frequently diametri- cally opposed.

Now novel and reliable scales are needed to mea- sure the severity rationally and to consider the pa- tients’ or families’ viewpoints. These scales should measure the severity quantitatively. Cramer et al. (7) proposed a new method of quantification for the evaluation of AED therapy (VA scale). Although it is not a pure QOL scale, it can reflect partially the influence of seizures on normal functioning from the patients’ viewpoints.

We compared the severity of seizures with the

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VA scale and the traditional seizure-frequency scale (SF scale) (8). Subjects were 149 adults with epilepsy receiving chronic ambulatory treatment. Case sever- ity was classified arbitrarily as follows: (a) seizure free, complete suppression of seizures for > 1 year; (b) mild, <10 points on the VA scale or yearly sei- zures on the SF scale; (c) moderate, <30 points or monthly seizures; and (d) severe, >30 points or weekly seizures. Figures 3 and 4 show comparisons of the seizure severity in patients with cryptogenic or symptomatic partial seizures and generalized epi- lepsies, respectively. The main disadvantage of the SF scale concerns the judgment as to simple partial and absence seizures, which are apt to occur more frequently as severe and generalized tonic-clonic seizures and less frequently as mild seizures. How- ever, the influence of seizures on patients’ normal functioning is quite different. From the practical viewpoint, estimation with the VA scale corres- ponds rationally to our clinical experience.

DISCUSS I 0 N

Problems in patients with epilepsy include impair- ment, disability, and handicaps, as defined by the World Health Organization. Concretely, these prob- lems are expressed by vertically crossing lines. A

0 Seizure-Free DMild .Moderate Severe I 56

Lt,

56

FIG. 3. Comparison of seizure sever- ity in patients with simple partial, com- plex partial, and secondarily general- ized seizures between the VeteransAd- ministration (VA) scale and the Seizure Frequency (SF) scale.

VA SF VA SF VA SF

Simple Partial (n=20) Complex Partial (n=53) Secondary Generalized (n=27)

Page 4: Quality of Life in Adult Patients with Epilepsy

40 T . KUGOH

FIG. 4. Comparison of seizure sever- ity in patients with idiopathic and symptomatic (including cryptogenic) generalized epilepsies between the Veterans Administration (VA) scale and the Seizure Frequency (SF) scale.

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65 65 10 Seizure-Free UMild B Moderate Severe I

25 5oI 0

1

VA

I I 1 I 50

42

SF VA SF

horizontal line expresses the severity of epilepsies and seizures, and a vertical line expresses the degree of psychosocial functioning. Thus patients with epi- lepsy can be classified into four categories. We can- not separate the severity and QOL when considering the influence of epilepsy on individual patients. These two components compose the biphasic dimen- sions of QOL and thus are analyzed coincidentally.

The concepts of QOL and comprehensive man- agement in epilepsy are closely related, but the fun- damental viewpoints are located at opposite posi- tions. The former is based on the physicians’ view- point and the latter on the patients’ viewpoint. Ideally, these two concepts would be in harmony, but in reality, they are frequently dissociated. More- over, one of the most important problems is that many physicians ignore or do not recognize this actuality.

Comprehensive management of epilepsy should be carried out through a systemic therapeutic pro- gram (9). Beran (10) pointed out that the purpose of treating epilepsy is not necessarily that of seizure eradication but rather the maximal improvement of QOL for the patient. In comprehensive manage- ment, the treating physician must vigorously con- sider the influence of the therapy on the patients’ QOL.

QOL in patients with epileptsy is estimated by

Idiopathic Generalized (n=37) Symptomatic Generalized (n=12)

means of several QOL batteries. To increase the clinical significance of these tests, it is essential to perform repetitive trials. To understand the influ- ence of a therapy on a patient’s QOL, it is worth- while analyzing chronologically the course in each individual patient.

REFERENCES

1. Devinsky 0, Cramer JA. Introduction: quality of life in epi- lepsy. Epilepsia 1993;34(suppl 4):S1-3.

2. Dodrill CB, Batzel LW, Queisser HR, et al. An objective method for the assessment of psychological and social prob- lems among epileptics. Epilepsia 1980;21: 123-35.

3. Meador KJ. Research use of the new quality-of-life in epi- lepsy inventory. Epilepsia 1993;34(suppl 4):S34-8.

4. Hosokawa K, Kugoh T, Mino S. Washington Psychosocial Seizure Inventory: a multi-institutional study in Japan. Epi- lepsia 1994;35: 1265-70.

5 . Brown SW, Tomlinson LL. Anticonvulsant side effects: a self-report questionnaire for use in community surveys. Br J Clin Pract 1982;18:147-9.

6. Janz D. Neurological morbidity of severe epilepsy. Epilepsia 1988;29(suppl l):S1-8.

7. Cramer JA, Smith DB, Mattson RH, et al. A method of quantification for the evaluation of antiepileptic drug therapy. Neurology 1983;33(suppl 1):26-37.

8. Kugoh T, Hosokawa J, Mino S, et al. A trial for the quantita- tive evaluation of the severity in patients with epilepsy. J p n J Psychiatry Neurol 1994;48:348-9.

9. Kugoh T. Simplification of antiepileptic pharmacotherapy: from the viewpoint of rational management of epilepsy. Jpn J Psychiatry Neurol 1988;42:449-57.

10. Beran RG. Medical management of epilepsy. Aust Farn Phy- sician 1989;18: 135-6.

Epilepsia, Vol. 37, Suppl. 3, 1996