Abstract
The purpose of this article is to review the ways in which quality of life has been assessed in patients with epilepsy. It is specifically proposed that there have been three phases or types of studies examining the effects of epilepsy on cognitive, behavioural, social and physical function. The first and oldest phase was characterized by the use of traditional forms of clinical evaluation and available generic measures of cognitive, behavioural and psychosocial function to study the general effects of epilepsy, effects of epilepsy-specific clinical variables (e.g. seizure type, age at onset), and the consequences of treatment with antiepileptic medications on patients' lives. The second phase of research was characterized by the development of epilepsyspecific measures of cognitive ability, psychological status and psychosocial status, which were designed to meet the special research and clinical needs not provided by previous generic measures (e.g. Washington Psychosocial Seizure Inventory, Fear of Seizures Scale). The third and most recent phase is characterized by the use of models, techniques, and measures developed from the health services research field to assess formally contemporary definitions of health-related quality of life (HRQOL) (e.g. ESI-55, QOLIE-89, Seizure Severity Scale) and develop models of the effects of epilepsy on HRQOL. Thus, concern regarding the impact and consequences of epilepsy is not a new development, but has evolved over the years, resulting in new models and methods of assessment of disease impact on well-being and functional status.
Similar content being viewed by others
References
Nelson EC, Berwick DM. the measurement of health status in clinical practice.Med Care 1989;27 (Suppl. 3): S77-S90.
Guyatt GH, Jaeschke R. Measurement in clinical trials: choosing the appropriate trials. In: Spilker B, ed.Quality of Life Assessments in Clinical Trials. New York: Raven Press, 1990: 37–46.
Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and quality of life.Med Care 1989;27 (Suppl. 3): S217-S232.
Cramer JA. A clinimetric approach to assessing quality of life in epilepsy.Epilepsia 1993;34 (Suppl. 4): S8-S13.
Cramer JA. Quality of life for people with epilepsy.Neurol Clin 1994;12: 1–13.
Vickrey BG, Hays RD, Graber J, Rausch R, Engel J, Brook RH. A health related quality of life instrument for patients evaluated for epilepsy surgery.Med Care 1992;30: 299–319.
Hermann BP. Quality of life in epilepsy.J Epilepsy 1992;5: 153–165.
Perrine K, Congett S. Neurobehavioural problems in epilepsy.Neurol Clin 1994;12: 129–152.
Devinsky O, Penry JK. Quality of life in epilepsy: the clinican's view.Epilepsia 1993;34 (Suppl. 4): S4-S13.
Fox JT. The response of epileptic children to mental and educational tests.Br J Med Psychol 1928;4: 235–248.
Dawson S, Conn JCM. The intelligence of epileptic children.Arch Dis Childh 1929;4: 142–151.
Keating LE. A review of the literature on the relationship of epilepsy and intelligence in school children.J Ment Sci 1960;106: 1042–1059.
Collins AL, Lennox WG. The intelligence of 300 private epileptic patients.Assoc Res Nerv Ment Dis 1947;26: 586–603.
Tarter RE. Intellectual and adaptive functioning in epilepsy: a review of 50 years of research.Dis Nerv Sys 1972;33: 763–770.
Anastasi A.Psychological Testing. Toronto: Macmillan, 1969.
Hermann BP. Contributions of traditional assessment procedures to an understanding of the neuropsychology of epilepsy. In: Dodson E, Kinsborne M, eds.Computerized Neuropsychological Assessment in Epilepsy. New York: Demos, 1991: 1–22.
Arieff A, Yacorzynski GK. Deterioration of patients with organic epilepsy.J Nerv Ment Dis 1942;96: 49–55.
Fetterman JL, Barnes MR. Serial studies of the intelligence of patients with epilepsy.Arch Neurol Psych 1934;32: 797.
Paskind HA. Extramural patients with epilepsy with special reference to the frequent absence of deterioration.Arch Neurol Psych 1932;28: 370–385.
Dikmen S, Matthews CG, Harley JP. The effect of early versus late onset of major motor epilepsy upon cognitive-intellectual performance.Epilepsia 1975;16: 73–81.
Dikmen S, Matthews CG. Effect of major motor seizure frequency upon cognitive-intellectual functions in adults.Epilepsia 1977;18: 21–29.
Matthews CG, Klove H. Differential psychological performances in major motor, psychomotor, and mixed seizure classifications of known and unknown etiology.Epilepsia 1967;8: 117–128.
Seidenberg M, O'Leary DS, Berent S, Boll T. Changes in seizure frequency and test-retest scores on the Wechsler Adult Intelligence Scale.Epilepsia 1981;22: 75–83.
Aarts JHP, Binnie CD, Smit AM, Wilkins AJ. Selective cognitive impairment during focal and generalized epileptiform EEG activity.Brain 1984;107: 293–308.
Binnie CD, Kastele**-Nolst Trenite D, Smit AM, Wilkins AJ. Interactions of epileptiform EEG discharges and cognition.Epilepsy Res 1987;1: 239–245.
Dodrill C, Wilkus RJ. Relationships between intelligence and electroencephalographic epileptiform activity in adult epileptics.Neurology 1976;26: 525–531.
Goode DJ, Penry JK, Dreifuss FE. Effects of paroxysmal spike-wave activity on continuous visual-motor performance.Epilepsia 1970;11: 241–254.
Klove H. Relationship of differential electroencephalographic patterns to distribution of Wechsler-Bellevue scores.Neurology 1959;9: 871–876.
Mirsky AF, Van Buren JM. On the nature of the ‘absence’ in centrencephalic epilepsy: a study of some behavioural, electroencephalographic and autonomic factors.Electroenceph Clin Neurophysiol 1965;18: 334–348.
Kooi KA, Hovey HB. Alterations in mental function and paroxysmal cerebral activity.Arch Neurol Psych 1957;78: 264–271.
Parsons OA, Kemp DE. Intellectual functioning in temporal lobe epilepsy.J Consult Clin Psychol 1960;24: 408–414.
Schwab RS. A method of measuring consciousness in petit mal epilepsy.J Nerv Ment Dis 1939;89: 690–691.
Shewmon DA, Erwin RJ. The effect of focal interictal spikes on perception and reaction time: I. General considerations.EEG Clin Neurophysiol 1988;69: 319–337.
Hebb DO. Intelligence in man after large removals of cerebral tissue: defects following right temporal lobectomy.J Gen Psychol 1939;21: 437–446.
Hebb DO, Penfield W. Human behaviour after extensive bilateral removal from the frontal lobes.Arch Neurol Psych 1940;44: 421–438.
Lansdell H. The use of factor scores from the Wechsler-Bellevue scale of intelligence in assessing patients with temporal lobe removals.Cortex 1968;4: 257–268.
Meyer V. Cognitive changes following temporal lobectomy for relief of temporal lobe epilepsy.Arch Neurol Psych 1959;81: 299–309.
Meyer V, Yates AJ. Intellectual changes following temporal lobectomy for psychomotor epilepsy: preliminary communication.J Neurol Neurosurg Psychiatry 1955;18: 44–52.
Rausch R. Differences in cognitive function with left and right temporal lobe dysfunction. In: Benson DF, Zaidel E, eds.The Dual Brain: Hemispheric Specialization in Humans. New York: Guilford, 1985: 247–261.
Jones-Gotman M. Localization of lesions by neuropsychological testing.Epilepsia 1991;32 (Suppl. 5): S41-S52.
Helmstaedter C, Pohl C, Hufnagel A, Elger CE. Visual learning deficits in nonresected patients with right temporal lobe epilepsy.Cortex 1991;27: 547–555.
Milner B. Psychological aspects of focal epilepsy and its neurosurgical management.Adv Neurol 1975: 299–321.
Berg RA, Golden CJ. Identification of neuropsychological deficits in epilepsy using the Luria-Nebraska Neuropsychological Battery.J Consult Clin Psychol 1981;49: 745–747.
Bolter J, Veneklasen J, Long CJ. Investigation of WAIS effectiveness in discriminating between temporal and generalized seizure patients.J Consult Clin Psychol 1981;49: 549–553.
Delaney RC. Screening for organicity: the problem of subtle neuropsychological deficit and diagnosis.J Clin Psychol 1982;38: 843–846.
Dodrill C. A neuropsychological battery for epilepsy.Epilepsia 1978;19: 611–623.
Dennerll RD. Prediction of unilateral brain dysfunction using Wechsler test scores.J Consult Psychol 1964;28: 278–284.
Fowler PC, Richards HC, Boll TJ. WAIS factor patterns of epileptic and normal adults.J Clin Neuropsychol 1980;2: 115–123.
Hermann BP, Melyn M. Identification of neuropsychological deficits in epilepsy using the Luria-Nebraska Neuropsychological Battery: a replication attempt.J Clin Exp Neuropsychol 1985;7: 305–313.
Milberg W, Greiffenstein M, Lewis R, Rourke D. Differentiation of temporal lobe and generalized seizure patients with the WAIS.J Consult Clin Psychol 1980;48: 39–42.
Camfield PE, Gates R, Rosen G, Camfield C, Fergueson A, McDonald GW. Comparison of cognitive ability, personality profile, and school success in epileptic children with pure right versus left temporal lobe EEG foci.Ann Neurol 1984;15: 122–126.
Dodrill C, Clemmons D. Use of neuropsychological tests to identify high school students with epilepsy who later demonstrate inadequate performances in life.J Consult Clin Psychol 1984;52: 520–527.
Fraser RT, Trejo W, Temkin N, Clemmons D, Dodrill C. Assessing the vocational interests of those with epilepsy.Rehab Psychol 1985;20: 29–33.
Dikmen S, Morgan SF. Neuropsychological factors related to employability and occupational status in persons with epilepsy.J Nerv Ment Dis 1980;168: 236–240.
Sackellares JC, Giordani B, Berent S, et al. Patients with pseudoseizures: intellectual and cognitive performance.Neurology 1985;35: 116–119.
Austin JK, Smith MS, Risinger MW, McNelis AM. Childhood epilepsy and asthma: comparison of quality of life.Epilepsia 1994;35: 608–615.
Farwell JR, Dodrill C, Batzel LW. neuropsychological abilities of children with epilepsy.Epilepsia 1985;26: 395–400.
Fedio P, Mirsky AF. Selective intellectual deficits in children with temporal lobe or centrencephalic epilepsy.Neuropsychologia 1967;7: 287–300.
Huberty TJ, Austin JK, Risinger MW, McNelis AM. Relationship of selected variables in children with epilepsy to performance on school-administered achievement tests.J Epilepsy 1992;5: 10–16.
Rutter M, Graham P, Yule WA.A Neuropsychiatric Study in Childhood. London: SIMP Heinemann Medical, 1970.
Seidenberg M, Beck N, Geisser M et al. Academic achievement of children with epilepsy.Epilepsia 1986;27: 753–759.
Stores G. Reading skills of children with generalized or focal epilepsy attending ordinary school.Dev Med Child Neurol 1976;18: 705–716.
Andrewes DG, Bullen JG, Tomlinson L, Elwes RDC, Reynolds EH. A comparative study of the cognitive fects of phenytoin and carbamazepine in new referrals with epilepsy.Epilepsia 1986;27: 128–134.
Dodrill CB. Effects of anticonvulsant drugs on abilities.J Clin Psychiatry 1988;49 (Suppl.): 31–34.
Hutt SJ, Jackson PM, Belsham A, Higgins G. Perceptual-motor behaviour in relation to blood phenobarbitone level: a preliminary report.Dev Med Child Neurol 1968;10: 626–632.
Paskind HA. The absence of deteriorating effects of bromides in epilepsy.J Am Med Assoc 1934;103: 100–103.
Thompson PJ, Trimble MR. Anticonvulsant drugs and cognitive functions.Epilepsia 1982;23: 531–544.
Meador KJ, Loring DW, Huh K, Gallagher BB, King DW. Comparative cognitive effects of anticonvulsants.Neurology 1990;40: 391–394.
Smith DB, Mattson RH, Cramer JA et al. Results of a nationwide Veterans Administration cooperative study comparing the efficacy and toxicity of phenobarbital, phenytoin, and primidone.Epilepsia 1987;28 (Suppl. 3): S50-S58.
Guerrant J, Anderson WW, Fischer A et al.Personality in Epilepsy. Springfield: Charles C Thomas, 1962.
Thompson P, Oxley J. Socioeconomic accompaniments of severe epilepsy.Epilepsia 1988;29 (Suppl. 1): 9–18.
Lennox W, Lennox M.Epilepsy and Related Disorders: (Vol. 1 and 2). Boston: Little, Brown and Co., 1960.
Mittan RJ. Fear of seizures. In: Whitman S, Hermann BP, eds.Psychopathology in Epilepsy: Social Dimensions. New York: Oxford University Press, 1986: 90–121.
Mittan RJ, Locke G. Fear of seizures: epilepsy's forgotten symptom.Urban Health 1982;11: 30–32.
Goldstein J, Seidenberg M, Peterson R. Fear of seizures and behavioural functioning in adults with epilepsy.J Epilepsy 1990;3: 101–106.
Chaplin JE, Yepez R, Shorvon S, Floyd M. A quantitative approach to measuring the social effects of epilepsy.Neuroepidemiology 1990;9: 151–158.
Dell J. Social dimensions of epilepsy: stigma and response. In: Whitman S, Hermann BP, eds.Psychopathology in Epilepsy: Social Dimensions. New York: Oxford University Press, 1986: 185–210.
Ryan R, Kempner K, Emlen AC. The stigma of epilepsy as a self-concept.Epilepsia 1980;21: 433–444.
Hermann BP, Whitman S. Behavioural and personality correlates of epilepsy: a review, methodological critique and conceptual model.Psychol Bull 1984;95: 451–497.
Mungas D, Blunden D, Bennington K, Stone A, Palma G. Reliability and validity of scales for assessing behaviour in epilepsy.Psychol Assess 1990;2: 423–431.
Stark-Adamec C, Adamec R, Graham J, Hicks R, Brunn-Meyer S. Complexities in the complex partial seizure personality controversy.Psychiatric J Univ Ottawa 1985;10: 231–236.
Stark-Adamec C, Adamec R. Psychological methodology versus clinical impressions: different perspectives on psychopathology and seizures. In: Doane B, Livingston K, eds.The Limbic System: Functional Organization and Clinical Disorders. New York: Raven Press, 1986.
Bear DM. Temporal lobe epilepsy: a syndrome of sensory-limbic hyperconnection.Cortex 1979;15: 357–384.
Bear D, Fedio P. Quantitative analysis of interictal behaviour in temporal lobe epilepsy.Arch Neurol 1977;34: 454–467.
Dodrill C, Batzel LW, Queisser HR, Temkin NR. An objective method for the assessment of psychological and social problems among epileptics.Epilepsia 1980;21: 123–135.
Batzel LW, Dodrill CB, Dubinsky BL et al. An objective method for the assessment of psychosocial problems in adolescents with epilepsy.Epilepsia 1991;32: 202–211.
Vickrey BG, Hays RD, Brook RH, Rausch R. Reliability and validity of the Katz Adjustment Scales in an epilepsy sample.Qual Life Res 1992;1: 63–72.
Katz MM, Lyerly SB. Methods for measuring adjustment and social behaviour in the community: I. Rationale, description, discriminative validity and scale development.Psychol Rep 1963;13: 503–535.
Hays RD, Sherbourne C, Mazel E. The RAND 36-Item health Survey 1.0.Health Econ 1993;2: 212–227.
Ware JE, Sherbourne CD. A 36-item short form health survey (SF-36_: I. Conceptual framework and item selection.Med Care 1992;30: 473–483.
Devinsky O, Vickrey, BG, Cramer Jet al. Development of the Quality of Life in Epilepsy Inventory (QOLIE).Neurology (submitted).
Smith DF, Baker GA, Dewey M, Jacoby A, Chadwick DW. Seizure frequency, patient-perceived seizure severity and the psychosocial consequences of intractable epilepsy.Epilepsy Res 1991;9: 231–241.
Baker GA, Smith DF, Dewey M, Morrow J, Crawford PM, Chadwick DW. The development of a seizure severity scale as an outcome measure in epilepsy.Epilepsy Res 1991;8: 245–251.
Baker G, Smith DF, Dewey M, Jacoby A, Chadwick DW. The initial development of a health-related quality of life model as an outcome measure in epilepsy.Epilepsy Res 1993;16: 65–81.
Hunt SM, McEwan J, McKenna SP. A quantitative approach to perceived health status: a validation study.J Epidemiol Commun Health 1980;34: 281–286.
Brown SW, Tomlinson LL. Anticonvulsant side effects: a self-report questionnaire for use in community surveys.Br J Clin Pract 1984;18: S147-S149.
Corney RH, Clare W. The construction, development and testing of a self-report questionnaire to identify social problems.Psychol Med 1985;15: 637–649.
Zigmond AS, Snaith RP. The hospital anxiety and depression scale.Acta Psychiatr 1983;67: 361–370.
Bradburn NM.The Structure of Psychological Well-being. Chicago: Aldine, 1969.
McNair DM, Lorr N, Droppleman LF.Manual for the Profile of Mood States. San Diego: Education and Industrial Testing Service, 1981.
Rosenberg M.Society and the Adolescent Self-image. Princeton: Princeton University Press, 1965.
Pearlin L, Schooler C. The structure of co**.J Health soc Behav 1978;19: 2–21.
Collins JA. Psychosocial well-being and epilepsy: an empirical study.Epilepsia 1990;31: 418–426.
Collins JA. Correlates of well-being in a New Zealand epilepsy sample.New Zealand Med J 1990;103: 301–303.
Collins JA. Epilepsy and well-being.Soc Sci Med 1990;31: 165–170.
Scambler, G. Epilepsy and quality of life research.J R Soc Med 1993;86: 449–450.
Fine EJ, Fine DL, Soria E. William P. Letchworth: philanthropist and pioneed epileptologist.Arch Neurol 1993;50: 313–316.
Dasheiff RM. The first American epileptologists: William P. Spratling, MD, and Roswell Park, MD.Neurology 1994;44: 171–174.
Fine EJ, Fine DL, Sentz L. The importance of Spratling.Arch Neurol 1994;51: 82–86.
Sander JWAS, Barclay J, Shorvon SD. The neurological founding fathers of the National Society for Epilepsy and the Chalfont Centre for Epilepsy.JNNP 1993;56: 599–604.
Thompson P. The Cohen Report onwards. In: Chadwick D, ed.Quality of Life and Quality of Care in Epilepsy. Oxford: Royal Society of Medicine Services Ltd., 1990: 7–15.
National Committee for the Control of Epilepsy and Its Consequences.Plan for Nationwide Action on Epilepsy. DHEW, NIH, 1977.
Author information
Authors and Affiliations
Rights and permissions
About this article
Cite this article
Hermann, B.P. The evolution of health-related quality of life assessment in epilepsy. Qual Life Res 4, 87–100 (1995). https://doi.org/10.1007/BF01833604
Issue Date:
DOI: https://doi.org/10.1007/BF01833604