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Epilepsy & Behavior 10 (2007) 142–147

Quality of life in young adults with uncomplicated epilepsy

Lena K.A. Raty *, Bodil M. Wilde Larsson

Faculty of Social and Life Sciences, Department of Nursing, Karlstad University, SE-651 88 Karlstad, Sweden

Received 16 June 2006; revised 20 September 2006; accepted 25 September 2006Available online 28 November 2006

Abstract

This aim of this study was to illuminate quality of life (QOL) of young adults with epilepsy. Subjects (n = 102) answered the Quality ofLife Index (QLI) questionnaire together with an overall open question (n = 95/102) regarding the impact of epilepsy on daily life. Thehighest QOL was reported in relation to the family domain, and the lowest, in relation to the psychological/spiritual domain. Overall theparticipants were satisfied with their lives. Most important were the well-being of their families, their relationships with their spouses, andtheir ability to control their lives. Half of the participants experienced a negative effect of epilepsy on their daily lives. Of those, 70%considered the effect insignificant or small. This study supports the conclusions that uncomplicated epilepsy does not significantly affectQOL in young adulthood and that the risk of social isolation due to uncomplicated epilepsy is not significantly increased.� 2006 Elsevier Inc. All rights reserved.

Keywords: Epilepsy; Quality of life; Quality of life index; Young adulthood

1. Introduction

Quality of life (QOL) has been well established as animportant component of epilepsy care because of theincreasing understanding of the complex impact epilepsycan have on a person’s QOL [1–6]. Studies have indicatedthat compared with the general population, people withepilepsy have more psychosocial problems, also from along-term perspective [7–11]. Common nonmedical prob-lems include feelings of stigma, psychological distress,unemployment, lowered self-esteem, and interpersonal dif-ficulties including social isolation and low social compe-tence [1,3,5,10,12–17]. Wagner et al. found that physicalsymptoms in epilepsy patients also correlate with psycho-logical distress and well-being [18], and Suurmeijer et al.reported that all of the variance in QOL could be explainedby psychosocial variables [19]. In addition, according topeople living with epilepsy, QOL in epilepsy relates aboveall to psychosocial variables (health, family, personal rela-tionships, personal development, socioeconomic status,

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doi:10.1016/j.yebeh.2006.09.010

* Corresponding author. Fax: +46 54 83 30 20.E-mail address: lena.raty@kau.se (L.K.A. Raty).

well-being, social activity, and recognition in society)[1,20,21]. It has been suggested that people diagnosed withepilepsy will always feel uncertain and fear having anotherepileptic seizure [2,22–24].

The first-choice coping strategy for most people withepilepsy is concealment [14,25] prompted by fear of enactedstigma. The patient feels the stigma, although the reality ofthe threat of enacted stigma is unknown. Developmentaltheory and studies in epilepsy indicate that concealmentcould lead to social withdrawal [17,26], and Olsson andCampenhausen reported that young adults with absenceepilepsy are more socially isolated compared with controls[14]. According to Erikson, personality (i.e., psychosocialdevelopment) comprises eight stages (identity crises) duringthe life span, and the focus of each stage is related to thecore of interest of that particular age [26–28]. In youngadulthood (20–30 years of age), the core of interest consistsof becoming independent, establishing intimate relations,and finding employment, and according to the theory, theconsequence of failure at this stage is negative developmentpossibly leading to social isolation. Thus, limiting the sam-ple age span in research may increase our knowledge andprovide a deeper understanding of the impact of epilepsy

L.K.A. Raty, B.M. Wilde Larsson / Epilepsy & Behavior 10 (2007) 142–147 143

in different periods of adulthood. As the negative long-termeffects of epilepsy are well known, it is important to under-stand young peoples’ perspectives and core problem areasto increase the ability of physicians and nurses to supportand guide young people with epilepsy in clinical care.

In 1999 we studied the medical and psychosocial charac-teristics of young people (13–22 years of age) living withuncomplicated epilepsy (n = 151) [16,29,30], and comparedpsychosocial aspects of these young people with those ofcontrols (n = 282). Uncomplicated epilepsy was definedas epilepsy without any associated neurological impairment(mental retardation or motor impairments). This concepthas been used by Sillanpaa et al. [9] and has the samemeaning as ‘‘epilepsy only’’ used by Jalava et al. [7]. Theadolescents with epilepsy reported lower competence(social competence, activity, and school achievement) com-pared with the control group. Male adolescents with epi-lepsy had lower self-esteem (P < 0.04) and were moreinternalizing (P < 0.02) than controls (especially in theage range 18–20), whereas female adolescents had poorerQOL in general compared with males, with no differencesbetween the epilepsy and control groups. Further, olderadolescents (18–22 years of age) were found to be moreinternalizing, have poorer self-esteem, and have a poorersense of coherence (i.e., how they experienced meaningful-ness, manageability, and comprehensibility in their lives)compared with younger adolescents. The latter is consis-tent with the findings of Devinsky et al. [31], and the find-ing of poorer QOL for females compared with males isconsistent with research both in people with epilepsy andthe general population [31–36].

It has been proposed that instruments already in use beemployed to measure QOL in epilepsy [37]. The Quality ofLife in Epilepsy Inventory (QOLIE) [38–41] is one of thefew comprehensive, well-validated, reliable, and standard-ized instruments available [38,39,42]. The QOLIE was con-structed on the basis of earlier established instruments andmeasures the experience with various epilepsy-specific andgeneric aspects during the preceding 4 weeks. Anothercomprehensive, well-validated, and reliable instrument isFerrans and Powers’ Quality of Life Index (QLI) [43]. Thisinstrument includes existential questions, contrary to manyother instruments measuring QOL [18,38,44–46]. Further-more, the QLI combines a global definition of QOL [47],‘‘satisfaction,’’ with ‘‘importance’’ to describe well-being,and it relates to life as a whole, which is important fromthe holistic view of epilepsy care [48]. Ferrans and Powersargue that the perception of what is important in life is alsoan essential part of the assessment of QOL [43]. Theydefine QOL as ‘‘a person’s sense of well-being that stemsfrom satisfaction or dissatisfaction with the areas of lifethat are important to him/her.’’

Although many studies have been carried out, comparedwith other chronic conditions, little attention has been paidto the impact of epilepsy on QOL [37]. In addition, the lit-erature reveals that research has often included people withadditional disorders and has focused on individuals with

refractory epilepsy. In recent years, the primary interesthas been the effect on QOL of surgery and other medicalinterventions, where the aim is to focus on QOL in relationto health and medical issues (health-related quality of life,HRQOL). Fewer studies concern the majority of theepilepsy population, that is, people with uncomplicatedepilepsy, focusing on QOL from a general point of view.With respect to age groups, there have been very fewstudies addressing older adolescents and young adults. Theaim of this study was to address this gap, and describe theQOL of young adults living with uncomplicated epilepsy.

2. Methods

In 2004, a 5-year follow-up study was carried out. At that time, anadditional aim was to measure QOL from a more comprehensive, generalpoint of view to further understand the complex effect of epilepsy in thegroup under study.

2.1. Subjects

Young adults, aged 18 to 27 years in 2004, completed questionnaireson QOL as part of a 5-year follow-up study. At baseline (1999), all ado-lescents, 13–22 years of age, who had been registered as having uncompli-cated epilepsy in four major hospitals in central Sweden were invited toparticipate, and 82% accepted (n = 151). At the follow-up in 2004, 146subjects were traceable and 102 returned completed questionnaires. Dom-inating seizure types in 2004 were primary generalized tonic–clonic sei-zures (36.1%) and complex partial seizures with secondary generalization(18.6%). The epilepsy was well-controlled in 61.7% of the cases, and in 18patients the epilepsy was in remission.

Analyses revealed no differences between the participants and thedropouts either with respect to sociodemographic factors, self-esteem,sense of coherence, problem areas, and competence or in terms of mea-sured medical epilepsy-related factors. Internal dropouts varied between1 and 11.

2.2. Inclusion/exclusion criteria

To be included in the group when it formed in 1999, adolescents had tohave experienced at least one epileptic seizure during the last year and/orto be on antiepileptic drug treatment for epilepsy. Exclusion criteria wereadditional neurological impairments, benign childhood epilepsy, or otherdiseases or handicaps that were considered to have a substantial impact onQOL. More detailed information on the original sample have previouslybeen reported [16,29,30].

2.3. Instrument

The generic version of the QLI was used here [15,43,49]. It is avail-able in Swedish and has demonstrated high validity and reliability. Theinstrument consists of two parts, each containing 34 items. It measuresa person’s satisfaction (Part 1) with various aspects of life and howimportant (Part 2) these aspects are to him or her. Items are distributedin four dimensions: Health and Functioning, Socioeconomic Status,Psychological/Spiritual, and Family. The 6-point response scale rangesfrom 1 = very dissatisfied/very unimportant to 6 = very satisfied/veryimportant. Total scores range from 0 to 30, with high scores indicatingbetter QOL.

2.3.1. Validity and reliability

The QLI is based on an extensive review of the literature, as well aspatient-reported material, and has demonstrated high content, construct,and convergent validity, as well as internal consistency reliability, inprevious research in the general population as well as in chronically ill

144 L.K.A. Raty, B.M. Wilde Larsson / Epilepsy & Behavior 10 (2007) 142–147

patient populations, including epilepsy patients [15,43,48–56]. In thisstudy, Cronbach’s a was 0.89 overall, 0.87 for Health and Functioning,0.75 for Socioeconomic Status, 0.88 for Psychological/Spiritual, and0.58 for Family.

2.3.2. Study-specific questions

In an effort to gain a global perspective of QOL and a deeper under-standing of how daily life is experienced by people living with epilepsy,the participants were asked to answer the following questions: Does theepilepsy condition have an impact on your daily life (yes or no)? If yes,is the impact of a negative or a positive nature? To what degree doesthe epilepsy affect your daily life (to a very low degree, low degree, somedegree, high degree, very high degree)? Describe with your own words howepilepsy affects your daily life!

2.4. Procedure

Patients participating in 1999 were identified and were invited by mailto participate in the follow-up study. Those who accepted gave their writ-ten/oral consent. The invitation included information about the study,four questionnaires on QOL (including open-ended questions), medicaland psychosocial aspects of epilepsy, a written consent formula regardingpermission to obtain information from the patients’ medical records, and aprepaid envelope in which to mail the response.

Patients who did not return their questionnaires within 2 weeks werecontacted by phone or by mail if phone calls were not answered.

The completed QLI questionnaires were analyzed. The open-endedquestions were first read through several times by both authors separately,and each author carried out a content analysis. Existing differences werediscussed and a joint version was agreed on. The authors decided thatthe qualitative material (open-ended questions) was too comprehensiveto be reported fully as a part of this article. However, a brief, overallreport of the content analysis was considered valuable in gaining a broaderperspective of the QLI scores.

Data were also collected from the patients’ medical records by twophysicians. Participant’s reports of their overall QOL together with a briefsummary of the content analysis regarding the open questions are present-ed here.

2.5. Analyses

Prior to analyses, the QLI scores are calculated by weighing every‘‘satisfied answer’’ with the corresponding ‘‘important answer accordingto the constructors’ instructions.’’ Descriptive statistics were calculatedwith mean values and standard deviations. Pearson’s v2 test withYates’s continuity correction was used to determine the significanceof variables on a nominal level, and the Mann–Whitney U test, to testmean differences on an ordinal-level. Correlations were calculated usingSpearman’s rank correlation coefficient. One-way ANOVAs with post-hoc tests were used to test the statistical significance of mean differencesbetween age groups. P values <0.05 were considered statisticallysignificant.

The open-ended questions were categorized manually according to thecontent of the patients’ descriptions of the effect of epilepsy on daily life, asdescribed above.

2.6. Ethical considerations

This study was approved by the regional research committees ofLinkoping and Orebro, Sweden. Those who participated gave their oraland/or written consent. Written and oral information was given to allmedical staff concerned.

3. Results

The reported mean QLI score for overall QOL was21.87 (SD 3.75). To determine which areas in life contrib-

uted most positively and negatively, subscale scores werecalculated. The highest QOL was found in the Familydomain (M = 24.71, SD = 4.4) and the lowest in thePsychological/Spiritual domain (M = 20.81, SD = 4.9).No age- or gender-related differences were found (Table 1).

Spearman’s rank correlation revealed strong correlationsbetween subscales and the total QLI score as well as betweenall subscales, except for the Family domain, which wasmoderately correlated to the other scales (Table 2).

Analysis of the satisfaction and importance scales sepa-rately indicated that the participants were satisfied withtheir lives (M = 4.71 SD = 0.60). Most satisfactory weretheir relationships with spouses, the emotional supportthey received from others, and the possibility of living along life. The least satisfactory areas were unemployment,psychological distress, and the need to be dependent onothers. There were some gender differences with respectto satisfaction with life, as men were more unsatisfied withunemployment (P < 0.04), sexual activity (P < 0.05), andability to care for their family (P < 0.05).

The areas in life that the patients regarded as mostimportant corresponded well to what they were satisfiedwith. Most important was the well-being of their families,their relationships with spouses, and the ability to controltheir lives. Women considered their own health(P < 0.01), control over their own life (P < 0.00), physicalindependence (P < 0.04), and personal appearance(P < 0.04) more important than did men.

Seizure frequency correlated negatively with total QLI(�0.31), Health and Functioning (�0.36), and Psychologi-cal/Spiritual (�0.33) scores. When the analysis was extend-ed to include seizure type and antiepileptic drugs (AEDs)with side effects, the results revealed no major differencein correlations: total QLI (�0.37), Health and Functioning(�0.36), Psychological/Spiritual (�0.29), SocioeconomicStatus (�0.29), and Family (0.36).

Ninety-five patients (93.1%) answered the open-endedquestions. Half of them (n = 47) reported that epilepsyaffected their daily lives negatively, and one patientdescribed a positive effect. However, some of those whoclaimed that their lives were not influenced by epilepsyreported in their comments that epilepsy had a certain neg-ative effect and also in what way it affected their dailyliving.

The majority (n = 33) of those experiencing a negativeeffect of epilepsy on daily life considered the effect insignif-icant or small. Only some patients (n = 14) reported theimpact on their lives as high or very high. The expressedpositive effect of epilepsy was considered small.

The effects on daily life involved psychological (fearsand worries), social (being alone, attitudes), and economic(getting a job, low income) aspects and various restrictions(withdrawn driver’s license, leisure activities) related to epi-lepsy. Many patients had accepted their situation andfocused on possibilities instead of obstacles in their lives.The strategies they employed were learning from experi-ence and being cautious in adapting their daily lives in a

Table 1Quality of life index (QLI) scores in young adults living with epilepsy (Scale 0 – 30 points)

Men and women (n=102) Men (n = 39) Women (n = 63) Statistics

QLI score M (SD) 21.87 (3.75) 21.46 (3.63) 22.11 (3.83) aZ 0.73, bNSHealth and functioning M (SD) 21.78 (4.22) 21.25 (4.11) 22.11 (4.28) aZ 0.98, bNSSocio-economic status M (SD) 21.87 (4.19) 21.51 (4.16) 22.10 (4.23) aZ 0.55, bNSPsychological/spiritual M (SD) 20.81 (4.95) 20.76 (4.87) 20.85 (5.05) aZ 0.16, bNSFamily M (SD) 24.71 (4.42) 24.48 (5.00) 24.86 (4.05) aZ 0.00, bNS

a Z-transformed scores from Mann–Whitney U-test.b NS = non significant.

Table 2Spearman’s correlation between total Quality of Life Index (QLI) and thesubscales Health and functioning (HoF), Socio-economic status (SES),Psychological/spiritual (PS) and Family (Fam)

QLI HoF SES PS Fam

QLI — 0.935a 0.800a 0.835a 0.599a

HoF 0.935a — 0.654a 0.707a 0.508a

SES 0.800a 0.654a — 0.605a 0.342a

PS 0.835a 0.707a 0.605a — 0.451a

Fam 0.599a 0.508a 0.342a 0.451a —

a Correlation is significant at the 0.01 level.

L.K.A. Raty, B.M. Wilde Larsson / Epilepsy & Behavior 10 (2007) 142–147 145

positive way to the epilepsy condition. ‘‘In the springtimewhen my seizures are at their worst I have to be extremelystrict with what I eat, drink and how I dress.’’ ‘‘I take oneday at a time and feel good about that. If the changes Ihave made in my daily life should not be sufficient I wouldjust make some further changes in order to be able to be‘healthy’.’’

In general comments, the majority of the patientsreported a positive attitude toward their current situation.They expressed the importance of continuously seekingknowledge regarding epilepsy and stressed the importanceof maintaining contact with health care providers togathering information and increasing their knowledge ofepilepsy. With respect to physicians, participants hadquestions about, for example, medication and side effects,seizures, getting a driver’s license, epilepsy running in thefamily, pregnancy, and their prognosis. Questions fornurses were limited and focused on which activities wereand were not recommended.

The participants in this study also reported their interestand comittment to spread information about epilepsy inthe general population.

4. Discussion

Most previous research has indicated that epilepsy isstigmatizing and affects the QOL, principally social andpsychological aspects, of adolescents as well as adults[10,14]. Although the results with respect to QLI subscalesand QOL areas affected in epilepsy were similar to those ofprevious research, the present study indicates that uncom-plicated epilepsy in young adulthood affects QOL to only asmall degree. In fact, the group under study reported noreduction in QOL compared with the American general

population as reflected by the QLI total score(M = 21.67, SD = 3.67) [43,54,56] and obtained higherscores compared with patients with newly diagnosed epi-lepsy [15] and other chronic conditions for which the QLIhas been used [52–54].

The fact that the group under study had epilepsy thatwas uncomplicated, fairly well-controlled, and, in somecases, in remission could be considered partly responsiblefor the high QOL scores in the present study. This resultis in accordance with the findings of Aldenkamp et al.[57] regarding psychosocial reactions to epilepsy in a groupof patients with uncomplicated, well-controlled epilepsy,and corresponds to the findings of Jacoby [22] regardingQOL of adults living with well-controlled epilepsy in theUnited Kingdom. Stavem et al. [58] found that people withepilepsy reported smaller decreases in QOL (using the SF-36) than people with other chronic conditions. The authorsof the latter study suggest that people with epilepsy tend tohave better perception of their health then people withother chronic conditions (asthma, angina pectoris, obstruc-tive lung disease, and rheumatoid arthritis). However, asthe results demonstrated, there was no strong correlationbetween QLI scores and seizure frequency (also when com-bined with seizure type and AED with side effects). There-fore, the results of this study can be compared with theresearch of Jacoby [23] and Ettinger [59], who found littlerelation between severity and psychosocial factors inepilepsy.

Another reason for the high QOL scores in this studymay be the increased knowledge of epilepsy of the patientgroup. When in contact with health care providers, thepatients in our study had questions about and discussedseveral issues related to their epilepsy condition and howit affected their daily life. According to Baker et al.,increased knowledge regarding the epilepsy condition isrelated to fewer psychosocial problems [61] and reducedfeelings of stigma [60].

A third reason may, according to the open-ended ques-tions, be that some patients in the study group did notacknowledge the effects of their epilepsy. They stated‘‘My daily life is not affected in any way by the epilepsycondition,’’ but described at the same time several moder-ate to severe problems in different areas. Baker et al. sug-gest that denial of the condition in adolescence relates tothe fact that the patients ‘‘do not want to know’’ becausethey fear being stigmatized [61].

146 L.K.A. Raty, B.M. Wilde Larsson / Epilepsy & Behavior 10 (2007) 142–147

The fact that many of the participants had found differ-ent ways to cope with the problems caused by epilepsy mayalso be an important factor in the high QOL scores. Kempet al. reported that a change in coping behavior fromavoidance to problem-focused coping and modification ofillness cognition increased well-being in patients withepilepsy [62].

Probably contributing to the reported good QOL is alsothe fact that the majority of the subjects participating in thisstudy were employed or studied full-time. Among others, deBoer [63], Beghi et al. [64], and Buelow [65] have pointed outthe importance of employment to QOL in epilepsy.

A further contributing factor may be age. Pugh et al.found that middle-aged patients experienced the most diffi-culties in coping with epilepsy compared with young adultsand old people [66]. Young adults have more physicalresources and less responsibility than those who aremiddle-aged.

Some gender differences were noted regarding the sepa-rate analyses of satisfaction and importance scales. Theauthors argue that further studies should address genderdifferences in young adulthood using more specific instru-ments in randomized controlled studies to reveal genderdifferences regarding problems, needs, and coping at thisimportant time in life.

5. Conclusions

Uncomplicated epilepsy does not significantly affectQOL in young adulthood, and the risk of social isolationdue to uncomplicated epilepsy is not significantlyincreased. Further studies are needed to address the ques-tion of the relationship between QOL in uncomplicatedepilepsy and illness severity.

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