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Life fulfilment in an epilepsy sample from the United States
Soc. Sci. Med. Vol. 40, No. 11, pp. 1579-1584, 1995
Pergamon
0277-9536(94)00328-9
Copyright © 1995 ElsevierScienceLtd Printed in Great Britain.All rights reserved 0277-9536/95 $9.50+0.00
LIFE F U L F I L M E N T IN AN EPILEPSY SAMPLE F R O M THE U N I T E D STATES
JOHN A. COLLINGS Faculty of Health and Social Care, Leeds Metropolitan University, Calverley Street, Leeds LS1 3HE, England Abstract--This study examined the life fulfilment of a sample of 420 people with epilepsy drawn from affiliates of the Epilepsy Foundation of America in various urban and rural regions of the United States and also a private clinic. At the time of the study, all respondents were attending hospital outpatient neurological 9r epilepsy clinics for treatment, monitoring or advice. Life fulfilment was operationalized in terms of the discrepancy between people's desired and actual circumstances, and the scale developed for the research covered the following life domains: family and social relationships; leisure; worries; material security; employment. The findings revealed that the respondents were most fulfilled in the areas of family/social relationships, getting help with problems, leisure and housing. Health concerns seemed to be the prime source of non-fulfilment, with employment, marriage and money also appearing problematic. When factors associated with variations in overall life fulfilment were examined, unemployment, seizure predictability, polytherapy and living with a spouse/partner seemed to be of particular significance. The study findings are discussed and the need to pursue medical and vocational goals alongside each other in intervention strategies is emphasized. Key words---epilepsy, life fulfilment, quality of life, well-being
INTRODUCTION Research in many countries has documented the wide ranging social and psychological difficulties which are often associated with a diagnosis of epilepsy. On the psychiatric side, Betts [1], Dikmen et al. [2], Trimble and Perez [3] and Robertson [4] report on the high incidence of depression amongst people with epilepsy, and Mulder and Daly [5], Currie et al. [6], and Dowds et al. [7] have revealed a prevalence of anxiety problems. Social and psychological problems in epilepsy-such as interpersonal difficulties and lowered self esteem--have been highlighted in research by Collings [8], Hills and Baker [9] and Dodrill et al. [10]. In addition, several researchers have noted the over-representation of people with epilepsy amongst the unemployed [11, 12]. In spite of a dearth of international comparative studies, the evidence which is available suggests that lowered psychosocial wellbeing in epilepsy is a universal phenomenon [13, 14]. Although the literature on psychosocial aspects of epilepsy is increasing, interest in this area has been overtaken by a focus on the general quality of life of epilepsy sufferers [15, 16]. The term 'quality of life' has no universally agreed definition and when the concept is used it often involves value judgements or is associated with political sloganizing. Systematic attempts to operationalize and measure quality of life have mainly focused on people's actual circumstances, particularly
their economic status, material possessions, quality of housing, etc. [17]. Whilst the use of such indicators has value in that it provides important information about the current state of society and the position of disadvantaged groups, studies by Krupinski [18] and Bradburn [19] suggest that the systematic use of subjective indicators, in addition to objective ones, can be extremely useful. For instance, in the Health and Social Survey of NW Melbourne, Krupinski found that subjective measures of life fulfilment were better predictors of psychiatric disturbance than people's actual social circumstances. In the field of epilepsy, measures of life satisfaction which incorporate a perceptual element have been found to be strongly related to measures of psychological and physical well-being, and a useful component in studies of the quality of life of such groups [8]. Jenkins et al. [20] note that the measurement of quality of life is becoming increasingly important for evaluating medical interventions, and in a conceptual and methodological review of quality of life in epilepsy, Hermann [15] suggests that a broad model should guide further research--a model which encompasses health, health perceptions, functional status, role activities, social functioning, cognition, emotional status and life satisfaction. Hermann notes that role activities, emotional status and cognition are well researched quality of life domains, but he includes life satisfaction in a list of under-investigated areas. Studies of life satisfaction or life fulfilment which
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incorporate people's subjective perceptions are singled out as being much needed in this area. The research reported upon here aims to make a contribution to the developing field of health related quality of life by examining sources of life satisfaction, and factors associated with variations in life fulfilment, in a community based epilepsy sample. METHODS
Sample Data were obtained from 420 adults with epilepsy living in the United States. Respondents were connected with 22 co-operating centres covering 13 States (OR, CA, NY, GA, FL, AL, TX, TN, LA, MS, PA, VA, WA). Due to time and financial constraints it was not possible to select a sample which was strictly representative of the adult epilepsy population in the United States. Data were obtained mainly from people with epilepsy connected to affiliates of the Epilepsy Foundation of America (EFA), although a private counselling centre also provided a sample. Although selected on the basis of opportunity, the sample was nonetheless very broadly based in terms of a range of medicodemographic characteristics and geography. The mean age of the sample was 34.1 years (SD 10.6), and 46% were male and 54% female. In terms of socioeconomic status, 34.5% were identified as professional/semi-professional, 39.9% as skilled non-manual, 12.3% as skilled manual and 13.3% as partly skilled/unskilled. At the time of the study, 32.8% were married, 47.5% were single, 17.7% were divorced/separated and 2% were widowed. Some 43.3% were in full or part-time work, 21.1% were unemployed and 18.4% said they were unable to work because of their disability; 1.7% were retired and the remaining 15.5% described themselves as students, housewives etc. Regarding medical condition, the following seizure type frequencies (in respondents' own terms) were given: grand mal--28.6%; petit mal--7.1%; grand and petit mal--6.9%; temporal lobe--28.8%; other/ unknown--28.6%. The mean length of time with epilepsy was 17.8 years (SD 11.4). Some 7.5% of the sample reported seizures occurring at least once a day, 18%--once a week, 21.3%--once a month, 20.3%-once every 1-6 months, and 32.9%---once every 6 months or more. Of those prescribed anticonvulsant medication, 35% were taking carbamazepine (tegretol), 50.7%--phenytoin (epanutin), 16.0%--sodium valproate (epilim), and 11%--primidone (mysoline). Monotherapy occurred the most frequently (54.5%), but 40.0% were taking two anticonvulsants, and 5.5%--three. Although affiliates of the EFA provided the sampling frame, all respondents were living in the community, and all, at the time of the study, were attending hospital outpatient neurological or epilepsy clinics for treatment, monitoring and/or advice. The
medical characteristics of the sample are similar to those reported on samples in other recent American epilepsy surveys [21]. The sample also shows similarities with community based epilepsy groups drawn from Britain, and New Zealand in terms of gender composition, age, employment status, seizure frequency and other medical characteristics [14]. However, compared with British and New Zealand epilepsy samples, there is some bias towards higher socio-economic groups in the present sample and somewhat higher proportions of divorced or separated individuals [14].
Research questionnaire All participants completed a questionnaire battery consisting of various well-being scales, various measures of epilepsy, and questions relating to socio-demographic background. Full details of the questionnaire and measures can be found in Collings [8]. Some degree of caution is required over the interpretation of the medical data as the questionnaires were completed anonymously (to minimize non-response) and therefore no check on the validity of this information was possible. Life fulfilment, was measured through a 20-item scale covering the following five domains: family and social relationships, leisure, worries, material security, employment. Firstly, people were asked to rate (on a 5-point scale) their view as to the importance of various aspects of life, irrespective of their own circumstances. Secondly, people were asked to indicate their current actual circumstances in terms of these items. Fulfilment on each item was assessed as to the extent of the discrepancy between these two ratings. Thus, high fulfilment on an item would result from a high importance rating in combination with the person reporting that item was true for them. Low fulfilment would result from a high importance rating plus the person reporting that item was untrue for them. Other combinations of scores for items would indicate intermediate fulfilment or intermediate non-fulfilment. For each item, fulfilment scores ran from 1 (non-fulfilment) to 9 (high fulfilment). Overall life fulfilment scores were also computed for each person by summing their 20 individual item fulfilment scores. The overall scale's reliability was deemed acceptable with a Cronbach's ct of 0.76 (N= 1030). This method of operationalizing life fulfilment in terms of the discrepancy between people's desired and actual circumstances is similar to the one developed by Krupinski [18]. FINDINGS
The findings presented in Table 1 relate to the 20-item life fulfilment scale and reveal what is deemed important in life by the epilepsy sample, the nature of people's actual circumstances, and the degree of fulfilment on each of the scale items. The first two columns indicate the relative importance of various aspects of life. It would appear
Life fulfilment in an epilepsy sample that having a good family life and possessing self confidence are perceived as being the most important sources of life fulfilment. Matters relating to employment also receive high ratings--having a secure and worthwhile job, and being in a job which allows use of one's special abilities. Social support also appears to be of some importance with good friends, a trouble-free marriage or similar relationship, neighbourhood, and being able to get help with a problem also receiving high ratings by the sample. Financial, health and accommodation concerns seemed high on people's agendas for life fulfilment but it is interesting that having enough money was not rated as highly as the aspects of life already discussed. Having children, being able to participate in sports, and being in a club or organization were rated as extremely or very important by 51, 32 and 26% of the sample respectively. In brief, the life domains of family/social relationships, self confidence, work, health and neighbourhood were thought to be the most important determinants of life satisfaction. It is noteworthy that people's actual circumstances (column 3) did not always correspond closely with their desired situation. For example, although most people in the sample rated a trouble-free marriage or similar relationship as being highly important, only around 37% said they actually had a good marriage or similar close relationship with someone. Similarly, people's employment situations did not relate closely to the degree of importance they attached to this life domain. Moreover, only 23 % of the sample reported that they were free of health worries, but this item was given a high weighting in the importance ratings. With regard to fulfilment in various aspects of life, the overall impression from column 4 o f Table 1 is that the sample is fulfilled in some domains but unfulfilled
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in others. In the case of family relationships and friendships, getting help with problems, housing needs and leisure, the sample can be described as being moderately fulfilled. But with regard to freedom from health worries, having enough money and being free of family worries there is evidence of lack o f life fulfilment. In the area of employment, there is also some tendency towards low fulfilment. Within the sample, there was evidence of considerable variation in total life fulfilment scores. The overall life fulfilment mean score for the sample was 104.29 (SD, 24.72), with a range of 33-179. So as to examine factors associated with variations in life fulfilment, a stepwise multiple linear regression analysis was carried out using total life fulfilment scores as the dependent variable and a range of background and epilepsy measures as independent variables. A summary of the results o f this analysis is presented in Table 2. As can be seen, from the variables entered, unemployment due to disability, unemployment not due to disability, seizure predictability, living with a spouse or partner and number of medications currently taken were the best predictors of total life fulfilment scores. It is noteworthy that most measures of people's actual medical condition (such as seizure type and frequency), and a range of background measures including age, gender and social class, were excluded from the regression equation because their inclusion would not have increased the multiple correlation significantly. To summarize, it would appear that high life fulfilment tends tO be particularly associated with: - - n o t being unemployed; ----experiencing predictable seizures; - - l i v i n g with a spouse or partner; - - m o n o t h e r a p y rather than polytherapy.
Table 1. Desired circumstances, actual circumstances and fulfilment(N=420) Item Mean rating" % Rating extr/v.impb A good family life 3.6 94.9 Having good friends 3.3 85.8 Getting help with a problem 3.2 82.3 Happy where one lives 3.2 84.6 Trouble-free marriage or similar 3.3 83.0 Having children 2.4 51.2 Being able to do sport 1.9 32.4 Being in a club or organization 1.7 26.3 Regular holidays 2.3 46.1 Spend leisure as you wish 2.9 69.7 Free of family worries 2.8 67.5 Free of health worries 3.2 81.1 Free from conflict with others 3.0 75.7 Having self confidence 3.6 93.9 Having enough money 2.8 63.9 Able to save for emergencies 3.1 79.6 Having good accommodation 3.1 79.5 Secure job 3.3 87.3 Worthwhile job 3.5 91.1 Job allows use of special abilities 3.4 89.5 ~Mean rating of item on a scale from 0 (of no importance) to 4 (extremely important). ~Percentage rating the item 'extremelyimportant' and 'very important'. CPercentage indicating the item was true for their life. dScores range from 1 (low fulfilment) to 9 (high fulfilment).
% True~ 77.7 82.8 75.7 74.6 36.9 40.3 38.0 50.4 66.6 65.8 27.1 22.8 40.1 63.3 25.5 48.8 74.9 36.9 39.7 37.1
Fulfilment~ Mean SD 7.1 3.0 7.2 2.5 6.7 2.8 6.6 3.0 4.4 3.6 5.1 2.8 5.1 2.3 5.4 2.1 6.0 2.4 6.1 2.9 3.7 2.8 3.2 2.8 4.3 3.1 5.9 3.5 3.5 2.6 4.9 3.3 6.5 2.8 4.2 3.4 4.4 3.5 4.2 3.4
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John A. Collings Table 2. Regression of epilepsy and background variables on life fulfilment (N=420) Variable
~ Weight
Multiple R
R2
Sig. R 2 change
In the equation: Unemployed due to disability Unemployed Seizure predictability Live with spouse/partner Number of medications
-0.289 - 0.305 - 0.166 0.177 - 0.133
0.246 0.391 0.421 0.452 0.470
0.061 0.153 0.177 0.204 0.221
<0.0001 < 0.0001 < 0.0077 < 0.0047 < 0.0217
Not in the equation: Seizure control Seizure frequency Certainty of diagnosis G r a n d real seizures Temporal lobe seizures Petit real seizures Time with epilepsy Age Gender Social class Retired Living alone Living with parents Widowed Divorced/separated Graduate Sub-degree quafifications Employed full-time
- 0.081 0.060 0.041 0.015 -0.069 -0.033 0.040 0.074 0.043 - 0.075 0.070 - 0.086 -0.006 0.062 - 0.090 - 0.019 - 0.007 0.032
DISCUSSION
This study has thrown some light on the life fulfilments of a large number of people with epilepsy living in the community in the United States. Although opportunity sampling was used, the sample was large and broadly based in terms of a range of medicodemographic variables and geographic location within the United States. Life fulfilment was not simply assessed in terms of people's actual circumstances, as typically has been the case in much previous research into this issue. People's desired circumstances were also taken into account in determining the degree to which people were fulfilled or unfulfilled in the various life domains examined. As a whole, the sample appeared moderately fulfilled in the areas of family and social relationships, being able to get help with problems, leisure and housing/accommodation needs. Moreover, most of these aspects of life were also thought by the sample to be particularly important sources of people's life satisfaction or fulfilment. It was in the areas of 'freedom from health worries', 'enough money' and 'family worries' that the sample appeared most unfulfilled. The large number of people uncovered with health worries most probably had difficulties which centred around features of their epilepsy. It is worthy of note that, elsewhere, Americans with epilepsy have been found to experience lower levels of life fulfilment, and lower psychosocial well-being generally, than their counterparts living in Britain and New Zealand [14]. When factors associated with variations in overall life fulfilment were examined, only five out of the twenty three variables entered into the regression
analysis were found to be statistically significant predictors. That a state of unemployment should emerge as being strongly predictive of low life fulfilment is not surprising and much has been written on the over-representation of people with epilepsy within unemployment statistics [11, 12], and on the links between unemployment and depressed wellbeing [21-23]. But of particular significance here is that, together with unemployment, two epilepsy-related variables emerged as significant predictors---an unpredictable seizure pattern, and being on polytherapy for seizures rather than monotherapy or no anticonvulsant therapy. Seizure unpredictability is an important component of seizure severity, a term increasingly being used in the study of treatment outcome. Recently developed measures of seizure severity encapsulate the extent to which seizures affect everyday functioning and include measures of the uncertainty over when a seizure might occur, whether seizures are nocturnal, whether cognitive confusion follows seizures, and other post ictal states [24]. Moreover, in some recent research it has been found that seizure severity is a better predictor of overall well-being than more objective measures of people's medical condition such as seizure frequency [25], and the Present findings would lend support to this claim. Taken together, these findings suggest that the pursuit of high quality medical care cannot be separated from the issue of employability, and that vocational training and careers advice initiatives for people with epilepsy need to relate to neurological services if improvements in life fulfilment are to be attained. The finding that polytherapy was associated with lower life fulfilment could be seen as lending further
Life fulfilment in an epilepsy sample
weight to this argument. The cognitive and behavioural side-effects of anticonvulsant medication are well documented [15] and there has been a change in prescribing habits in recent years in favour of monotherapy so as to minimize such effects, even though seizure control may be reduced. Although it is tempting to suggest that the findings from the present study indicate that polytherapy impairs life fulfilment, most probably through the production of negative cognitive side-effects, it could be the case that those taking m o r e t h a n one a n t i c o n v u l s a n t suffered m o r e
intractable and severe seizures and that it was this that lowered life fulfilment. In the absence of more sophisticated measures of people's actual medical condition conclusions regarding the significance of polytherapy in this study can only be speculative. A further important predictor of life fulfilment was 'living with a spouse or partner' but this was the only personal background factor to emerge as being of any significance. Having a trouble-free marriage or similar relationship was found to be rated highly by the sample as a source of life satisfaction, but only just over a third of respondents reported that this was actually the case. Those who were not currently living with a spouse or partner seemed more vulnerable to lower life fulfilment, and it could be the case that such individuals have less in the way of a personal life 'buffer' to help them cope with epilepsy and unemployment-related difficulties. The lack of salience of other background factors such as age, gender and social class, is consistent with findings from a similar study of life fulfilment conducted with a community epilepsy sample in New Zealand [26]. A further background factor which could be of some importance is access to medical treatment. In a country where publicly funded health care is not likely to be generally available----especially outside major cities--the insured status of people with epilepsy would be a background factor which could be usefully explored in relation to life fulfilment in future research. In conclusion, the areas of fulfilment and non-fulfilment identified in this study could be useful in providing frameworks for the further development of care and counselling services for people with epilepsy who live in the community. In particular, the findings suggest that a holistic approach to improving the quality of life of people with epilepsy is required--one in which medical care is not divorced from employment and vocational rehabilitation services. The need for such a broad based approach has recently been emphasized by Hermann [15], and also by Scambler [27] who argues, amongst other things, that the pursuit of good quality of care in epilepsy should be based upon helping 'persons in context' rather than simply managing disease. Acknowledgements--The author is grateful for research grants from the Nuffield Foundation and the United States Embassy, London, in support of this work, and would also
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like to acknowledge the invaluable assistance given by the Epilepsy Foundation of America in data collection.
REFERENCES
!. Betts T. A. Depression, anxiety, and epilepsy.In Epilepsy and Psychiatry (Edited by Reynolds E. H. and Trimble M. R.). Churchill Livingstone, Edinburgh, 1981. 2. Dikmen S., Hermann B. P., Wilensky A. J. and Rainwater G. Validity of the Minnesota Multiphasic Personality Inventory (MMPI) to psychopathology in patients with epilepsy.J. Nerv. Ment. Dis. 171,114, 1983. 3. Trimble M. R. and Perez M. M. Quantification of psychopathology in adult patients with epilepsy. In Epilepsy and Behaviour "79, Proceedings of WOPSASSEPY 1 1980 (Edited by Kulig B. M., Meinardi H. and Stores G.). Swets and Zeitlinger BV, Lisse, Holland, 1980. 4. Robertson M. M. lctal and interictal depression in patients with epilepsy. In Aspects of Epilepsy and Psychiatry (Edited by Trimble M. R. and BolwigT. G.). John Wiley, Chichester, 1986. 5. Mulder D. W. and Daly D. Psychiatric symptoms associated with lesionsof the temporal lobe. J. Am. Med. Assoc. 150, 173, 1952. 6. Currie S., Heathfield K. W. G., Henson R. A. and Scott D. F. Clinical course and prognosis of temporal lobe epilepsy; a survey of 666 patients. Brain 94, 173, 1971. 7. Dowds N., McCluggage J. R. and Nelson J. A Survey of the Socio-Medical Aspects of Epilepsy in a General Practice Population in Northern Ireland. Department of General Practice, The Queen's University, Belfast, 1983. 8. Collings J. A. Psychosocial well-being and epilepsy: an empirical study. Epilepsia 31, 418, 1990. 9. Hills M. D. and Baker P. G. Relationships among epilepsy, social stigma, self esteem, and social support. J. epilepsy 5, 231, 1992. 10. Dodrill C. B., Breyer D. N., Diamond M. B., Dubinsky B. L. and Geary B. B. Psychosocial problems among adults with epilepsy. Epilepsia 25, 168, 1984. 11. Griffin J. and Wyles M. Epilepsy: Towards Tomorrow. Office of Health Economics, London, 1991. 12. Scambler G. Epilepsy. Routledge, London, 1989. 13. Dodrill C. B., Beier R., Kasparic M., Tacke I. and Tan S-Y. Psychosocial problems in adults with epilepsy: comparison of findingsfrom four countries. Epilepsia 25, 176, 1984. 14. Collings J. A. International differences in psychosocial well-being:a comparative study of adults with epilepsy in three countries. Seizure 3, 183, 1994. 15. Hermann B. P. Quality of life in epilepsy. J. Epilepsy 5, 153, 1992. 16. Chadwick D. (Ed.) Quality of Life and Quality of Care in Epilepsy. Royal Society of Medicine Services Ltd, Oxford, 1990. 17. Statistics Users' Council. Quality of Life Indicators. Conference Proceedings of the Statistics Users' Council Annual Conference, November, 1987. 18. Krupinski J. Health and quality of life. Soc. Sci. Med. 14A, 203, 1980, 19. Bradburn N. M. The Structure of Psychological Well-Being. Aldine, Chicago, 1969. 20. Jenkins C. D., Jono R. T., Stanton B-A. and Stroup-Benham C. A. The measurement of health-related quality of life:major dimensionsidentifiedby factor analysis. Soc. Sci. Med. 31, 925, 1990. 21. Hermann B. P., Whitman S., Wyler A. R., Anton M. T. and Vanderzwagg R. Psychosocial predictors of psychopathology in epilepsy. Br. J. Psychiat. 156, 98, 1990. 22. CollingsJ. A. Epilepsyand well-being.Soc. Sci. Med. 31, 165, 1990.
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23. Collings J. A. Correlates of well-being in a New Zealand epilepsy sample. New Zealand Med. J. 103, 301, 1990. 24. Baker G. A., Smith D. F., Dewey M., Morrow J., Crawford P. M. and Chadwick D. W. The development of a seizure severity scale as an outcome measure in epilepsy. Epilepsy Res. 8, 245, 1991. 25. Smith D. F., Baker G. A., Dewey M., Jacoby A. and Chadwick D. W. Seizure frequency, patient-perceived seizure seizure severity and the psychosocial conse-
quences of intractable epilepsy. Epilepsy Res. 9, 231, 1991. 26. Collings J. A. Quality of life amongst a New Zealand epilepsy sample. Commun. Mental HIth New Zealand 5, 31, 1990. 27. Scambler G. Social factorsand quality of life andquality of care in epilepsy. In Quality of Life and Quality of Care in Epilepsy (Edited by Chadwick D.). Royal Society of Medicine Services Ltd, Oxford, 1990.
Pergamon
0277-9536(94)00328-9
Copyright © 1995 ElsevierScienceLtd Printed in Great Britain.All rights reserved 0277-9536/95 $9.50+0.00
LIFE F U L F I L M E N T IN AN EPILEPSY SAMPLE F R O M THE U N I T E D STATES
JOHN A. COLLINGS Faculty of Health and Social Care, Leeds Metropolitan University, Calverley Street, Leeds LS1 3HE, England Abstract--This study examined the life fulfilment of a sample of 420 people with epilepsy drawn from affiliates of the Epilepsy Foundation of America in various urban and rural regions of the United States and also a private clinic. At the time of the study, all respondents were attending hospital outpatient neurological 9r epilepsy clinics for treatment, monitoring or advice. Life fulfilment was operationalized in terms of the discrepancy between people's desired and actual circumstances, and the scale developed for the research covered the following life domains: family and social relationships; leisure; worries; material security; employment. The findings revealed that the respondents were most fulfilled in the areas of family/social relationships, getting help with problems, leisure and housing. Health concerns seemed to be the prime source of non-fulfilment, with employment, marriage and money also appearing problematic. When factors associated with variations in overall life fulfilment were examined, unemployment, seizure predictability, polytherapy and living with a spouse/partner seemed to be of particular significance. The study findings are discussed and the need to pursue medical and vocational goals alongside each other in intervention strategies is emphasized. Key words---epilepsy, life fulfilment, quality of life, well-being
INTRODUCTION Research in many countries has documented the wide ranging social and psychological difficulties which are often associated with a diagnosis of epilepsy. On the psychiatric side, Betts [1], Dikmen et al. [2], Trimble and Perez [3] and Robertson [4] report on the high incidence of depression amongst people with epilepsy, and Mulder and Daly [5], Currie et al. [6], and Dowds et al. [7] have revealed a prevalence of anxiety problems. Social and psychological problems in epilepsy-such as interpersonal difficulties and lowered self esteem--have been highlighted in research by Collings [8], Hills and Baker [9] and Dodrill et al. [10]. In addition, several researchers have noted the over-representation of people with epilepsy amongst the unemployed [11, 12]. In spite of a dearth of international comparative studies, the evidence which is available suggests that lowered psychosocial wellbeing in epilepsy is a universal phenomenon [13, 14]. Although the literature on psychosocial aspects of epilepsy is increasing, interest in this area has been overtaken by a focus on the general quality of life of epilepsy sufferers [15, 16]. The term 'quality of life' has no universally agreed definition and when the concept is used it often involves value judgements or is associated with political sloganizing. Systematic attempts to operationalize and measure quality of life have mainly focused on people's actual circumstances, particularly
their economic status, material possessions, quality of housing, etc. [17]. Whilst the use of such indicators has value in that it provides important information about the current state of society and the position of disadvantaged groups, studies by Krupinski [18] and Bradburn [19] suggest that the systematic use of subjective indicators, in addition to objective ones, can be extremely useful. For instance, in the Health and Social Survey of NW Melbourne, Krupinski found that subjective measures of life fulfilment were better predictors of psychiatric disturbance than people's actual social circumstances. In the field of epilepsy, measures of life satisfaction which incorporate a perceptual element have been found to be strongly related to measures of psychological and physical well-being, and a useful component in studies of the quality of life of such groups [8]. Jenkins et al. [20] note that the measurement of quality of life is becoming increasingly important for evaluating medical interventions, and in a conceptual and methodological review of quality of life in epilepsy, Hermann [15] suggests that a broad model should guide further research--a model which encompasses health, health perceptions, functional status, role activities, social functioning, cognition, emotional status and life satisfaction. Hermann notes that role activities, emotional status and cognition are well researched quality of life domains, but he includes life satisfaction in a list of under-investigated areas. Studies of life satisfaction or life fulfilment which
1579
John A. Collings
1580
incorporate people's subjective perceptions are singled out as being much needed in this area. The research reported upon here aims to make a contribution to the developing field of health related quality of life by examining sources of life satisfaction, and factors associated with variations in life fulfilment, in a community based epilepsy sample. METHODS
Sample Data were obtained from 420 adults with epilepsy living in the United States. Respondents were connected with 22 co-operating centres covering 13 States (OR, CA, NY, GA, FL, AL, TX, TN, LA, MS, PA, VA, WA). Due to time and financial constraints it was not possible to select a sample which was strictly representative of the adult epilepsy population in the United States. Data were obtained mainly from people with epilepsy connected to affiliates of the Epilepsy Foundation of America (EFA), although a private counselling centre also provided a sample. Although selected on the basis of opportunity, the sample was nonetheless very broadly based in terms of a range of medicodemographic characteristics and geography. The mean age of the sample was 34.1 years (SD 10.6), and 46% were male and 54% female. In terms of socioeconomic status, 34.5% were identified as professional/semi-professional, 39.9% as skilled non-manual, 12.3% as skilled manual and 13.3% as partly skilled/unskilled. At the time of the study, 32.8% were married, 47.5% were single, 17.7% were divorced/separated and 2% were widowed. Some 43.3% were in full or part-time work, 21.1% were unemployed and 18.4% said they were unable to work because of their disability; 1.7% were retired and the remaining 15.5% described themselves as students, housewives etc. Regarding medical condition, the following seizure type frequencies (in respondents' own terms) were given: grand mal--28.6%; petit mal--7.1%; grand and petit mal--6.9%; temporal lobe--28.8%; other/ unknown--28.6%. The mean length of time with epilepsy was 17.8 years (SD 11.4). Some 7.5% of the sample reported seizures occurring at least once a day, 18%--once a week, 21.3%--once a month, 20.3%-once every 1-6 months, and 32.9%---once every 6 months or more. Of those prescribed anticonvulsant medication, 35% were taking carbamazepine (tegretol), 50.7%--phenytoin (epanutin), 16.0%--sodium valproate (epilim), and 11%--primidone (mysoline). Monotherapy occurred the most frequently (54.5%), but 40.0% were taking two anticonvulsants, and 5.5%--three. Although affiliates of the EFA provided the sampling frame, all respondents were living in the community, and all, at the time of the study, were attending hospital outpatient neurological or epilepsy clinics for treatment, monitoring and/or advice. The
medical characteristics of the sample are similar to those reported on samples in other recent American epilepsy surveys [21]. The sample also shows similarities with community based epilepsy groups drawn from Britain, and New Zealand in terms of gender composition, age, employment status, seizure frequency and other medical characteristics [14]. However, compared with British and New Zealand epilepsy samples, there is some bias towards higher socio-economic groups in the present sample and somewhat higher proportions of divorced or separated individuals [14].
Research questionnaire All participants completed a questionnaire battery consisting of various well-being scales, various measures of epilepsy, and questions relating to socio-demographic background. Full details of the questionnaire and measures can be found in Collings [8]. Some degree of caution is required over the interpretation of the medical data as the questionnaires were completed anonymously (to minimize non-response) and therefore no check on the validity of this information was possible. Life fulfilment, was measured through a 20-item scale covering the following five domains: family and social relationships, leisure, worries, material security, employment. Firstly, people were asked to rate (on a 5-point scale) their view as to the importance of various aspects of life, irrespective of their own circumstances. Secondly, people were asked to indicate their current actual circumstances in terms of these items. Fulfilment on each item was assessed as to the extent of the discrepancy between these two ratings. Thus, high fulfilment on an item would result from a high importance rating in combination with the person reporting that item was true for them. Low fulfilment would result from a high importance rating plus the person reporting that item was untrue for them. Other combinations of scores for items would indicate intermediate fulfilment or intermediate non-fulfilment. For each item, fulfilment scores ran from 1 (non-fulfilment) to 9 (high fulfilment). Overall life fulfilment scores were also computed for each person by summing their 20 individual item fulfilment scores. The overall scale's reliability was deemed acceptable with a Cronbach's ct of 0.76 (N= 1030). This method of operationalizing life fulfilment in terms of the discrepancy between people's desired and actual circumstances is similar to the one developed by Krupinski [18]. FINDINGS
The findings presented in Table 1 relate to the 20-item life fulfilment scale and reveal what is deemed important in life by the epilepsy sample, the nature of people's actual circumstances, and the degree of fulfilment on each of the scale items. The first two columns indicate the relative importance of various aspects of life. It would appear
Life fulfilment in an epilepsy sample that having a good family life and possessing self confidence are perceived as being the most important sources of life fulfilment. Matters relating to employment also receive high ratings--having a secure and worthwhile job, and being in a job which allows use of one's special abilities. Social support also appears to be of some importance with good friends, a trouble-free marriage or similar relationship, neighbourhood, and being able to get help with a problem also receiving high ratings by the sample. Financial, health and accommodation concerns seemed high on people's agendas for life fulfilment but it is interesting that having enough money was not rated as highly as the aspects of life already discussed. Having children, being able to participate in sports, and being in a club or organization were rated as extremely or very important by 51, 32 and 26% of the sample respectively. In brief, the life domains of family/social relationships, self confidence, work, health and neighbourhood were thought to be the most important determinants of life satisfaction. It is noteworthy that people's actual circumstances (column 3) did not always correspond closely with their desired situation. For example, although most people in the sample rated a trouble-free marriage or similar relationship as being highly important, only around 37% said they actually had a good marriage or similar close relationship with someone. Similarly, people's employment situations did not relate closely to the degree of importance they attached to this life domain. Moreover, only 23 % of the sample reported that they were free of health worries, but this item was given a high weighting in the importance ratings. With regard to fulfilment in various aspects of life, the overall impression from column 4 o f Table 1 is that the sample is fulfilled in some domains but unfulfilled
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in others. In the case of family relationships and friendships, getting help with problems, housing needs and leisure, the sample can be described as being moderately fulfilled. But with regard to freedom from health worries, having enough money and being free of family worries there is evidence of lack o f life fulfilment. In the area of employment, there is also some tendency towards low fulfilment. Within the sample, there was evidence of considerable variation in total life fulfilment scores. The overall life fulfilment mean score for the sample was 104.29 (SD, 24.72), with a range of 33-179. So as to examine factors associated with variations in life fulfilment, a stepwise multiple linear regression analysis was carried out using total life fulfilment scores as the dependent variable and a range of background and epilepsy measures as independent variables. A summary of the results o f this analysis is presented in Table 2. As can be seen, from the variables entered, unemployment due to disability, unemployment not due to disability, seizure predictability, living with a spouse or partner and number of medications currently taken were the best predictors of total life fulfilment scores. It is noteworthy that most measures of people's actual medical condition (such as seizure type and frequency), and a range of background measures including age, gender and social class, were excluded from the regression equation because their inclusion would not have increased the multiple correlation significantly. To summarize, it would appear that high life fulfilment tends tO be particularly associated with: - - n o t being unemployed; ----experiencing predictable seizures; - - l i v i n g with a spouse or partner; - - m o n o t h e r a p y rather than polytherapy.
Table 1. Desired circumstances, actual circumstances and fulfilment(N=420) Item Mean rating" % Rating extr/v.impb A good family life 3.6 94.9 Having good friends 3.3 85.8 Getting help with a problem 3.2 82.3 Happy where one lives 3.2 84.6 Trouble-free marriage or similar 3.3 83.0 Having children 2.4 51.2 Being able to do sport 1.9 32.4 Being in a club or organization 1.7 26.3 Regular holidays 2.3 46.1 Spend leisure as you wish 2.9 69.7 Free of family worries 2.8 67.5 Free of health worries 3.2 81.1 Free from conflict with others 3.0 75.7 Having self confidence 3.6 93.9 Having enough money 2.8 63.9 Able to save for emergencies 3.1 79.6 Having good accommodation 3.1 79.5 Secure job 3.3 87.3 Worthwhile job 3.5 91.1 Job allows use of special abilities 3.4 89.5 ~Mean rating of item on a scale from 0 (of no importance) to 4 (extremely important). ~Percentage rating the item 'extremelyimportant' and 'very important'. CPercentage indicating the item was true for their life. dScores range from 1 (low fulfilment) to 9 (high fulfilment).
% True~ 77.7 82.8 75.7 74.6 36.9 40.3 38.0 50.4 66.6 65.8 27.1 22.8 40.1 63.3 25.5 48.8 74.9 36.9 39.7 37.1
Fulfilment~ Mean SD 7.1 3.0 7.2 2.5 6.7 2.8 6.6 3.0 4.4 3.6 5.1 2.8 5.1 2.3 5.4 2.1 6.0 2.4 6.1 2.9 3.7 2.8 3.2 2.8 4.3 3.1 5.9 3.5 3.5 2.6 4.9 3.3 6.5 2.8 4.2 3.4 4.4 3.5 4.2 3.4
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John A. Collings Table 2. Regression of epilepsy and background variables on life fulfilment (N=420) Variable
~ Weight
Multiple R
R2
Sig. R 2 change
In the equation: Unemployed due to disability Unemployed Seizure predictability Live with spouse/partner Number of medications
-0.289 - 0.305 - 0.166 0.177 - 0.133
0.246 0.391 0.421 0.452 0.470
0.061 0.153 0.177 0.204 0.221
<0.0001 < 0.0001 < 0.0077 < 0.0047 < 0.0217
Not in the equation: Seizure control Seizure frequency Certainty of diagnosis G r a n d real seizures Temporal lobe seizures Petit real seizures Time with epilepsy Age Gender Social class Retired Living alone Living with parents Widowed Divorced/separated Graduate Sub-degree quafifications Employed full-time
- 0.081 0.060 0.041 0.015 -0.069 -0.033 0.040 0.074 0.043 - 0.075 0.070 - 0.086 -0.006 0.062 - 0.090 - 0.019 - 0.007 0.032
DISCUSSION
This study has thrown some light on the life fulfilments of a large number of people with epilepsy living in the community in the United States. Although opportunity sampling was used, the sample was large and broadly based in terms of a range of medicodemographic variables and geographic location within the United States. Life fulfilment was not simply assessed in terms of people's actual circumstances, as typically has been the case in much previous research into this issue. People's desired circumstances were also taken into account in determining the degree to which people were fulfilled or unfulfilled in the various life domains examined. As a whole, the sample appeared moderately fulfilled in the areas of family and social relationships, being able to get help with problems, leisure and housing/accommodation needs. Moreover, most of these aspects of life were also thought by the sample to be particularly important sources of people's life satisfaction or fulfilment. It was in the areas of 'freedom from health worries', 'enough money' and 'family worries' that the sample appeared most unfulfilled. The large number of people uncovered with health worries most probably had difficulties which centred around features of their epilepsy. It is worthy of note that, elsewhere, Americans with epilepsy have been found to experience lower levels of life fulfilment, and lower psychosocial well-being generally, than their counterparts living in Britain and New Zealand [14]. When factors associated with variations in overall life fulfilment were examined, only five out of the twenty three variables entered into the regression
analysis were found to be statistically significant predictors. That a state of unemployment should emerge as being strongly predictive of low life fulfilment is not surprising and much has been written on the over-representation of people with epilepsy within unemployment statistics [11, 12], and on the links between unemployment and depressed wellbeing [21-23]. But of particular significance here is that, together with unemployment, two epilepsy-related variables emerged as significant predictors---an unpredictable seizure pattern, and being on polytherapy for seizures rather than monotherapy or no anticonvulsant therapy. Seizure unpredictability is an important component of seizure severity, a term increasingly being used in the study of treatment outcome. Recently developed measures of seizure severity encapsulate the extent to which seizures affect everyday functioning and include measures of the uncertainty over when a seizure might occur, whether seizures are nocturnal, whether cognitive confusion follows seizures, and other post ictal states [24]. Moreover, in some recent research it has been found that seizure severity is a better predictor of overall well-being than more objective measures of people's medical condition such as seizure frequency [25], and the Present findings would lend support to this claim. Taken together, these findings suggest that the pursuit of high quality medical care cannot be separated from the issue of employability, and that vocational training and careers advice initiatives for people with epilepsy need to relate to neurological services if improvements in life fulfilment are to be attained. The finding that polytherapy was associated with lower life fulfilment could be seen as lending further
Life fulfilment in an epilepsy sample
weight to this argument. The cognitive and behavioural side-effects of anticonvulsant medication are well documented [15] and there has been a change in prescribing habits in recent years in favour of monotherapy so as to minimize such effects, even though seizure control may be reduced. Although it is tempting to suggest that the findings from the present study indicate that polytherapy impairs life fulfilment, most probably through the production of negative cognitive side-effects, it could be the case that those taking m o r e t h a n one a n t i c o n v u l s a n t suffered m o r e
intractable and severe seizures and that it was this that lowered life fulfilment. In the absence of more sophisticated measures of people's actual medical condition conclusions regarding the significance of polytherapy in this study can only be speculative. A further important predictor of life fulfilment was 'living with a spouse or partner' but this was the only personal background factor to emerge as being of any significance. Having a trouble-free marriage or similar relationship was found to be rated highly by the sample as a source of life satisfaction, but only just over a third of respondents reported that this was actually the case. Those who were not currently living with a spouse or partner seemed more vulnerable to lower life fulfilment, and it could be the case that such individuals have less in the way of a personal life 'buffer' to help them cope with epilepsy and unemployment-related difficulties. The lack of salience of other background factors such as age, gender and social class, is consistent with findings from a similar study of life fulfilment conducted with a community epilepsy sample in New Zealand [26]. A further background factor which could be of some importance is access to medical treatment. In a country where publicly funded health care is not likely to be generally available----especially outside major cities--the insured status of people with epilepsy would be a background factor which could be usefully explored in relation to life fulfilment in future research. In conclusion, the areas of fulfilment and non-fulfilment identified in this study could be useful in providing frameworks for the further development of care and counselling services for people with epilepsy who live in the community. In particular, the findings suggest that a holistic approach to improving the quality of life of people with epilepsy is required--one in which medical care is not divorced from employment and vocational rehabilitation services. The need for such a broad based approach has recently been emphasized by Hermann [15], and also by Scambler [27] who argues, amongst other things, that the pursuit of good quality of care in epilepsy should be based upon helping 'persons in context' rather than simply managing disease. Acknowledgements--The author is grateful for research grants from the Nuffield Foundation and the United States Embassy, London, in support of this work, and would also
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like to acknowledge the invaluable assistance given by the Epilepsy Foundation of America in data collection.
REFERENCES
!. Betts T. A. Depression, anxiety, and epilepsy.In Epilepsy and Psychiatry (Edited by Reynolds E. H. and Trimble M. R.). Churchill Livingstone, Edinburgh, 1981. 2. Dikmen S., Hermann B. P., Wilensky A. J. and Rainwater G. Validity of the Minnesota Multiphasic Personality Inventory (MMPI) to psychopathology in patients with epilepsy.J. Nerv. Ment. Dis. 171,114, 1983. 3. Trimble M. R. and Perez M. M. Quantification of psychopathology in adult patients with epilepsy. In Epilepsy and Behaviour "79, Proceedings of WOPSASSEPY 1 1980 (Edited by Kulig B. M., Meinardi H. and Stores G.). Swets and Zeitlinger BV, Lisse, Holland, 1980. 4. Robertson M. M. lctal and interictal depression in patients with epilepsy. In Aspects of Epilepsy and Psychiatry (Edited by Trimble M. R. and BolwigT. G.). John Wiley, Chichester, 1986. 5. Mulder D. W. and Daly D. Psychiatric symptoms associated with lesionsof the temporal lobe. J. Am. Med. Assoc. 150, 173, 1952. 6. Currie S., Heathfield K. W. G., Henson R. A. and Scott D. F. Clinical course and prognosis of temporal lobe epilepsy; a survey of 666 patients. Brain 94, 173, 1971. 7. Dowds N., McCluggage J. R. and Nelson J. A Survey of the Socio-Medical Aspects of Epilepsy in a General Practice Population in Northern Ireland. Department of General Practice, The Queen's University, Belfast, 1983. 8. Collings J. A. Psychosocial well-being and epilepsy: an empirical study. Epilepsia 31, 418, 1990. 9. Hills M. D. and Baker P. G. Relationships among epilepsy, social stigma, self esteem, and social support. J. epilepsy 5, 231, 1992. 10. Dodrill C. B., Breyer D. N., Diamond M. B., Dubinsky B. L. and Geary B. B. Psychosocial problems among adults with epilepsy. Epilepsia 25, 168, 1984. 11. Griffin J. and Wyles M. Epilepsy: Towards Tomorrow. Office of Health Economics, London, 1991. 12. Scambler G. Epilepsy. Routledge, London, 1989. 13. Dodrill C. B., Beier R., Kasparic M., Tacke I. and Tan S-Y. Psychosocial problems in adults with epilepsy: comparison of findingsfrom four countries. Epilepsia 25, 176, 1984. 14. Collings J. A. International differences in psychosocial well-being:a comparative study of adults with epilepsy in three countries. Seizure 3, 183, 1994. 15. Hermann B. P. Quality of life in epilepsy. J. Epilepsy 5, 153, 1992. 16. Chadwick D. (Ed.) Quality of Life and Quality of Care in Epilepsy. Royal Society of Medicine Services Ltd, Oxford, 1990. 17. Statistics Users' Council. Quality of Life Indicators. Conference Proceedings of the Statistics Users' Council Annual Conference, November, 1987. 18. Krupinski J. Health and quality of life. Soc. Sci. Med. 14A, 203, 1980, 19. Bradburn N. M. The Structure of Psychological Well-Being. Aldine, Chicago, 1969. 20. Jenkins C. D., Jono R. T., Stanton B-A. and Stroup-Benham C. A. The measurement of health-related quality of life:major dimensionsidentifiedby factor analysis. Soc. Sci. Med. 31, 925, 1990. 21. Hermann B. P., Whitman S., Wyler A. R., Anton M. T. and Vanderzwagg R. Psychosocial predictors of psychopathology in epilepsy. Br. J. Psychiat. 156, 98, 1990. 22. CollingsJ. A. Epilepsyand well-being.Soc. Sci. Med. 31, 165, 1990.
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23. Collings J. A. Correlates of well-being in a New Zealand epilepsy sample. New Zealand Med. J. 103, 301, 1990. 24. Baker G. A., Smith D. F., Dewey M., Morrow J., Crawford P. M. and Chadwick D. W. The development of a seizure severity scale as an outcome measure in epilepsy. Epilepsy Res. 8, 245, 1991. 25. Smith D. F., Baker G. A., Dewey M., Jacoby A. and Chadwick D. W. Seizure frequency, patient-perceived seizure seizure severity and the psychosocial conse-
quences of intractable epilepsy. Epilepsy Res. 9, 231, 1991. 26. Collings J. A. Quality of life amongst a New Zealand epilepsy sample. Commun. Mental HIth New Zealand 5, 31, 1990. 27. Scambler G. Social factorsand quality of life andquality of care in epilepsy. In Quality of Life and Quality of Care in Epilepsy (Edited by Chadwick D.). Royal Society of Medicine Services Ltd, Oxford, 1990.