Summary
Epilepsy is a chronic condition with numerous social and psychological consequences.
This work aimed to review available data on epilepsy and the impact of surgical and pharmaceutical treatments on the quality of life in adults and children. Research on quality of life in epilepsy is characterised by a wide and fragmentary range of methodology, both in terms of study design and instruments used. Quality of life is worse in patients with epilepsy than in the general population; it is comparable or worse in patients with epilepsy than that in patients with other chronic conditions; and it is similar to that of healthy persons when patients with epilepsy are well-controlled. Frequency of seizures seems to be one of the most relevant determinants of poor quality-of-life (QoL) scores, and quality of life is worsened by the co-existence of depression. The impact of surgical treatment on quality of life is positive, in all ages, in correlation with seizure control. There is no exhaustive or even contradictory results available concerning the impact of drug treatment. Role activities, emotional status and cognition have been the most investigated domains of quality of life in epilepsy research. There is a substantial lack of information regarding the functional status domain.
At present, quality of life and psychosocial functioning in people with epilepsy have been investigated in many studies. Nevertheless, the lack of a standardised approach makes it extremely difficult to summarise and indicate what measures should be used, in which patients, and in which sub-populations. In the pursuit of developing valid, reliable and sensitive measures of quality of life, it seems no longer appropriate to consider seizure frequency alone.
Similar content being viewed by others
Bibliografia
World Health Organisation. Fact Sheet No 166, Revised 2001 Feb. Available from URL: http://www.who.int/inf-fs/en/fact166.html [Accessed 2001 Jul 23]
Perrine K, Kiolbasa T. Cognitive deficits in epilepsy and contribution to psychopathology. Neurology 1999 Sep; 53 Suppl. 2: S39–48
Hauser WA. Incidence and prevalence. In: Engel J, Pedley TA, editors. Epilepsy: a comprehensive textbook. Philadelphia (PA): Lippincott-Raven Publishers, 1997: 47–57
Rwiza HT, Kilonzo GP, Haule J, et al. Prevalence and incidence of epilepsy in Ulanga, a rural Tanzanian district: a community-based study. Epilepsia 1992; 33: 1051–6
Begley CE, Annegers JF, Lairson DR, et al. Cost of epilepsy in the United States: a model based on incidence and prognosis. Epilepsia 1994; 35(6): 1230–43
Berto P, Tinuper P, Viaggi S, et al. Cost-of-illness of epilepsy in Italy: data from a multicentre observational study (Episcreen). Pharmacoeconomics 2000 Feb; 17(2): 197–208
Kotsopoulos IA, Evers SM, Ament AJ, et al. Estimating the costs of epilepsy: an international comparison of epilepsy cost studies. Epilepsia 2001 May; 42(5): 634–40
Kugoh T. Quality of life in adult patients with epilepsy. Epilepsia 1996; 37 Suppl. 3: 37S–40S
Schachter SC, Yerby MS. Management in epilepsy: pharmacologic therapy and quality of life issues. Postgrad Med 1987 Feb; 101(2): 133–53
Duncan J. Medical factors affecting the quality of life in patients with epilepsy. In: Chadwick D, editor. Quality of life and quality of care in epilepsy. London: Royal Society of Medicine, Round Table Series No.23, 1990: 80–7
Thompson PJ, Upton D. Quality of life in family members of persons with epilepsy. In: Trimble MR, Dodson WE, editors. Epilepsy and quality of life. New York: Raven Press Ltd, 1994: 19–31
Wiebe S, Blume WT, Girvin JP, et al. A randomised, controlled trial of surgery for temporal-lobe epilepsy. N Engl J Med 2001 Aug 2; 345(5): 311–9
Vickrey BG, Hays RD, Graber J, et al. A health-related quality of life instrument for patients evaluated for epilepsy surgery. Med Care 1992 Apr; 30(4): 299–319
Dodrill C, Batzel LW, Queisser HR, et al. An objective method for the assessment of psychological and social problems among epileptics. Epilepsia 1980; 21: 123–35
Hermann BP. The evolution of health-related quality of life assessment in epilepsy. Qual Life Res 1995; 4(2): 87–100
Lennox W, Lennox M. Epilepsy and related disorders. Boston: Little, Brown, 1960: Vol 1 and 2
Taylor DC. The components of sickness: disease, illness, and predicaments. Lancet 1979; I: 1008–10
Trimble MR, Dodson WE. Preface. In: Trimble MR, Dodson WE, editors. Epilepsy and quality of life. New York: Raven Press Ltd, 1994: xi–xii
Dodson EW, Trimble MR. Epilogue: quality of life in epilepsy. In: Trimble MR, Dodson WE, editors. Epilepsy and quality of life. New York: Raven Press Ltd, 1994: 259–65
Kline Leidy N, Rentz AM, Grace EM. Evaluating health-related quality of life outcomes in clinical trials of antiepileptic drug therapy. Epilepsia 1998 Sep; 39(9): 965–77
Dodrill CB, Batzel LW. Issues in quality of life assessment. In: Engel J, Pedley Jr TA, editors. Epilepsy: a comprehensive textbook. Philadelphia (PA): Lippincott-Raven Publishers, 1997: 2227–31
Bergner M. Quality of life, health status and clinical research. Med Care 1989; 27: 148–56
Hermann BP. Quality of life in epilepsy. J Epilepsy 1992; 5(3): 153–65
Rosenbaum P, Cadman D, Kirpalani H, et al. Pediatrics: assessing quality of life. In: Spilker B, editor. Quality of life assessments in clinical trials. NewYork: Raven Press, 1990: 205–15
Shumaker SA, Anderson R, Czajkowski S, et al. Psychological test and scales. In: Spilker B, editor. Quality of life assessments in clinical trials. New York: Raven Press, 1990: 95–113
Ministero della Sanità. Bollettino d’informazione sui farmaci, N.3–4. Rome: Instituto Poligrafico e Zecca dello Stato, 1999: 45–7
Ministero della Sanità. Bollettino d’informazione sui farmaci, N.2. Rome: Instituto Poligrafico e Zecca dello Stato 2000: 36–42
Collings JA. Correlates of well-being in a New Zealand epilepsy sample. N Z Med J 1990; 103(892): 301–303
Collings JA. Psychosocial well-being and epilepsy: an empirical study. Epilepsia 1990; 31: 418–26
Jacoby A. Epilepsy and the quality of everyday life: findings from a study of people with well-controlled epilepsy. Soc Sci Med 1992; 34: 657–66
Rausch R, Jacob S, Kraemer S, et al. Gender difference in quality of life as a function of seizure control. Epilepsia 1995; 36 (4 Suppl.): 94S
Reuvekamp HF, Aldenkamp AP, Beun A, et al. Quality of life after epilepsy surgery. Epilepsia 1995; 36 (3 Suppl.): 186S
Hermann BP, Vickrey B, Hays RD, et al. A comparison of health-related quality of life in patientswith epilepsy, diabetes and multiple sclerosis. Epilepsy Res 1996 Oct; 25(2): 113–8
Wagner AK, Bungay KM, Kosinski M, et al. The health status of adults with epilepsy compared with that of people without chronic conditions. Pharmacotherapy 1996 Jan–Feb; 16(1): 1–9
Baker GA, Nashef L, van Hout BA. Current issues in the management of epilepsy: the impact of frequent seizures on cost of illness, quality of life and mortality. Epilepsia 1997; 38 Suppl. 1: 1S–8S
Baker GA, Jacoby A, Buck D, et al. Quality of life of people with epilepsy: a European study. Epilepsia 1997; 38(3): 353–62
Jalava M, Sillanpaa M, Camfield C, et al. Social adjustment and competence 35 years after onset of childhood epilepsy: a prospective controlled study. Epilepsia 1997 Jun; 38(6): 708–15
Mills N, Bachmann M, Harvey I, et al. Patients’ experience of epilepsy and health care. Fam Pract 1997 Apr; 14(2): 117–23
Van Hout B, Gagnon D, Souetre E, et al. Relationship between seizure frequency and costs and quality of life of outpatients with partial epilepsy in France, Germany, and the United Kingdom. Epilepsia 1997; 38(11): 1221–6
Breier JI, Fuchs KL, Brooschire GA, et al. Quality of life perception in patients with intractable epilepsy or pseudoseizures. Arch Neurol 1998; 55: 660–5
Ribeiro JL, Mendonca D, Martins da Silva A. Impact of epilepsy on QoL in a Portuguese population: exploratory study. Acta Neurol Scand 1998 May; 97(5): 287–94
Amir M, Roziner I, Knoll A, et al. Self-efficacy and social support as mediators in the relation between disease severity and quality of life in patients with epilepsy. Epilepsia 1999 Feb; 40(2): 216–24
Buck D, Jacoby A, Baker GA, et al. Cross-cultural differences in health-related quality of life of people with epilepsy: findings froma European study. Qual LifeRes 1999; 8(8): 675–85
Mills N, Bachmann MO, Harvey I, et al. Effect of a primarycare-based epilepsy specialist nurse service on quality of care from the patients’ perspective: quasi-experimental evaluation. Seizure 1999; 8(1): 1–7
O’Donoghue MF, Goodridge DM, Redhead K. Assessing the psychosocial consequences of epilepsy: a community-based study. Br J Gen Pract 1999 Mar; 49(440): 211–4
Räty L, Hamrin E, Soderfeldt B. Quality of life in newlydebuted epilepsy: an empirical study. Acta Neurol Scand 1999; 100(4): 221–6
Wiebe S, Bellhouse DR, Fallahay C, et al. Burden of epilepsy: the Ontario Health Survey. Can J Neurol Sci 1999 Nov; 26(4): 263–70
Stavem K, Loge JH, Kaasa S. Health status of people with epilepsy compared with a general reference population. Epilepsia 2000 Jan; 41(1): 85–90
Lehrner J, Kalchmayr R, Serles W, et al. Heath-related quality of life (HRQoL), activity of daily living (ADL) and depressive mood disorder in temporal lobe epilepsy patients. Seizure 1999; 8: 88–92
Wiegartz P, Seidenberg M, Woodard A, et al. Co-morbid psychiatric disorder in chronic epilepsy: recognition and aetiology of depression. Neurology 1999 Sep 22; 53 Suppl. 2: 3S–8S
Hoare P. The quality of life of children with epilepsy and their families. Seizure 1993; 2: 269–75
Austin JK, Smith MS, Risinger MW, et al. Childhood epilepsy and asthma: comparison of quality of life. Epilepsia 1994 May–Jun; 35(3): 608–15
Mitchell WG, Scheier LM, Baker SA. Psychosocial, behavioural, and medical outcomes in children with epilepsy: a developmental risk factor model using longitudinal data. Paediatrics 1994; 94(4): 471–7
Austin JK, Huster GA, Dunn DW, et al. Adolescents with active or inactive epilepsy or asthma: a comparison of quality of life. Epilepsia 1996 Dec; 37(12): 1228–38
Carpay HA, Vermeulen J, Stroink H, et al. Disability due to restrictions in childhood epilepsy. Dev Med Child Neurol 1997; 39(8): 521–6
Norrby U, Carlsson J, Beckung E, et al. Self-assessment ofwellbeing in a group of children with epilepsy. Seizure 1999 Jun; 8(4): 228–34
Sabaz M, Cairns DR, Lawson J, et al. The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability. Epilepsia 2001; 45(5): 621–8
Wagner AK, Bungay KM, Bromfield E, et al. Relationship of health-related quality of life seizure control and antiepileptic drug adverse effects. Epilepsia 1994; 35 (8 Suppl.): 56S
Banks GK, McCaughey L, Beran R, et al. Influence of antiepileptic medication on cognitive and social behaviour in quality of life outcomes. Epilepsia 1995; 36 (3 Suppl.): 171S
Dimond KR, Pande AC, Lamoreaux L, et al. Effect of gabapentin (Neurontin) [corrected] on mood and well-being in patients with epilepsy [published erratum appears in Prog Neuropsychopharmacol Biol Psychiatry 1996 Aug; 20 (6): 1081]. Prog Neuropsychopharmacol Biol Psychiatry 1996 Apr; 20(3): 407–17
Mortimore C, Trimble M, Emmers E. Effects of gabapentin on cognition and quality of life in patients with epilepsy. Seizure 1998 Oct; 7(5): 359–64
Bruni J. Gabapentin as adjunctive therapy for partial seizures. Epilepsia 1999; 40 Suppl. 6: 27S–8S
Dodrill CB, Arnett JL, Hayes AG, et al. Cognitive abilities and adjustment with gabapentin: results of a multisite study. Epilepsy Res 1999 Jun; 35(2): 109–21
Mayer T, Schutte W, Wolf P, et al. Gabapentin add-on treatment: how many patients become seizure-free? An openlabel multicenter study. Acta Neurol Scand 1999 Jan; 99(1): 1–7
Lindberger M, Alenius M, Frisen L, et al. Gabapentin versus vigabatrin as first add-on patients with partial seizures that failed to respond monotherapy: a randomised, double-blind, dose titration study. GREAT Study Investigators Group. Gabapentin in Refractory Epilepsy Add-on Treatment. Epilepsia 2000 Oct; 41(10): 1289–95
Smith D, Baker G, Davies G, et al. Outcomes of add-on treatment with lamotrigine in partial epilepsy. Epilepsia 1993; 34(2): 312–22
Selai CE, Smith K, Trimble MR. Adjunctive therapy in epilepsy: a cost-effectiveness comparison of two AEDs. Seizure 1999 Feb; 8(1): 8–13
Steiner TJ, Dellaportas CI, Findley LJ, et al. Lamotrigine in newly diagnosed untreated epilepsy: a double-blind comparison with phenytoin. Epilepsia 1999 May; 40(5): 601–7
Gillham R, Kane K, Bryant-Comstock L. A double-blind comparison of lamotrigine and carbamazepine in newly diagnosed epilepsy wioth health-related quality of life as an outcome measure. Seizure 2000 Sep; 9(6): 375–9
Dodrill CB, Arnett JL, Sommerville KW, et al. Evaluation of the effects of vigabatrin on cognitive abilities and quality of life in epilepsy. Neurology 1993 Dec; 43(12): 2501–7
Dodrill CB, Arnett JL, Sommerville KW, et al. Effects of differing dosages of vigabatrin (Sabril) on cognitive abilities and quality of life in epilepsy. Epilepsia 1995 Feb; 36(2): 164–73
Provinciali L, Bartolini M, Mari F, et al. Influence of vigabatrin on cognitive performances and behaviour in patients with drug-resistant epilepsy. Acta Neurol Scand 1996 Jul; 94(1): 12–8
Dodrill CB, Arnett JL, Sommerville KW, et al. Cognitive and quality of life effects of differing dosages of tiagabine in epilepsy. Neurology 1997 Apr; 48(4): 1025–31
Dodrill CB, Arnett JL, Shu V, et al. Effects of tiagabine monotherapy on abilities, adjustment and mood. Epilepsia 1998 Jan; 39(1): 33–42
Petersen B, Walker ML, Runge U, et al. Quality of life in patients with idiopathic, generalized epilepsy. J Epilepsy 1998; 11(6): 306–13
Cramer JA, Arrigo C, Van Hammee G, et al. Effect of levetiracetam on epilepsy-related quality of life. N132 Study Group. Epilepsia 2000 Jul; 41(7): 868–74
Stavem K, Kloster R, Rossberg E, et al. Acupuncture in intractable epilepsy: lack of effect on health-related quality of life. Seizure 2000 Sep; 9(6): 422–6
Seidman-Ripley JG, Bound VK, Andermann F, et al. Psychosocial consequences of postoperative seizure relief. Epilepsia 1993 Mar–Apr; 34(2): 248–54
Mihara T, Inoue Y, Watanabe Y, et al. Improvement of quality-of-life following resective surgery for temporal lobe epilepsy: results of patient and family assessments. Jpn J Psychiatry Neurol 1994 Jun; 48(2): 221–9
Vickrey BG, Hays RD, Rausch R, et al. Quality of life of epilepsy surgery patients as compared with outpatients with hypertension, diabetes, heart disease, and/or depressive symptoms. Epilepsia 1994 May–Jun; 35(3): 597–607
Vickrey BG, Hays RD, Rausch R, et al. Outcomes in 248 patients who had diagnostic evaluations for epilepsy surgery. Lancet 1995 Dec 2; 346(8988): 1445–9
Kellett MW, Smith DF, Baker GA, et al. Quality of life after epilepsy surgery. J Neuro Neurosurg Psychiatry 1997; 63: 52–8
Malmgren K, Sullivan M, Ekstedt G, et al. Health-related quality of life after epilepsy surgery: a Swedish multicenter study. Epilepsia 1997; 38: 830–8
McLachlan RS, Rose KJ, Derry PA, et al. Health-related quality of life and seizure control in temporal lobe epilepsy. Can Ann 1997; 41(4): 482–9
Gilliam F, Kuzniecky R, Meador K, et al. Patient-orientated outcome assessment after temporal lobecotmy for refractory epilepsy. Neurology 1999 Sep 11; 53(4): 687–94
Markand ON, Salanova V, Whelihan E, et al. Health-related quality of life outcome in medically refractory epilepsy treated with anterior temporal lobectomy. Epilepsia 2000 Jun; 41(6): 749–59
Selai CE, Elsner K, Trimlbe MR. Quality of life pre and post epilepsy surgery. Epilepsy Res 2000; 38: 67–74
Sirven JI, Sperling M, Naritoku D, et al. Vagus nerve stimulation therapy for epilepsy in older adults. Neurology 2000 Mar 14; 54(5): 1179–82
Gilliam F, Wyllie E, Kashden J, et al. Epilepsy surgery outcome: comprehensive assessment in children. Neurology 1997; 48(5): 1368–74
Keene D, Higgins MJ, Ventureyra EG. Outcome and life prospects after surgical management of medically intractable epilepsy in patients under 18 years of age. Childs Nerv Syst 1997; 13: 530–5
Battaglia D, Di Rocco C, Iuvone L, et al. Neuro-cognitive development and epilepsy outcome in children with surgically treated hemimegalencephaly. Neuropediatrics 1999; 30(6): 307–13
Lundgren J, Amark P, Blennow G, et al. Vagus nerve stimulation in 16 children with refractory epilepsy. Epilepsia 1998 Aug; 39(8): 809–13
Patwardhan RV, Stong B, Bebin EM, et al. Efficacy of vagal nerve stimulation in children with medically refractory epilepsy. Neurosurgery 2000 Dec; 47(6): 1353–8
Kendrick AM, Trimble MR. Repertory Grid in the assessment of quality of life in patients with epilepsy: the quality of life assessment schedule. In: Trimble MR, Dodson WE, editors. Epilepsy and quality of life. New York: Raven Press Ltd, 1994: 19–31
Collings JA. Epilepsy and well-being. Soc Sci Med 1990; 31: 165–70
Baker GA. Improved quality of life as an outcome of antiepileptic drug therapy: is it enough? CNS Drugs 1995; 3(5): 323–7
Baker GA, Amrson AG. Cognitive and behavioural assessments in clinical trials: what measure? Epilepsy Res 2001 May; 45(1–3): 163–7
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Berto, P. Qualità della vita nei pazienti epilettici e impatto dei trattamenti. Pharmacoeconomics-Ital-Res-Articles 5, 95–117 (2003). https://doi.org/10.1007/BF03320608
Published:
Issue Date:
DOI: https://doi.org/10.1007/BF03320608