Abstract
Background:
The occurrence of psychosocial problems in epilepsy is common and has
severe impact on quality of life. However, the influence of marital
adjustment on quality of life in epilepsy and similarities or
differences with psychiatric illnesses, with which epilepsy shares
several common characteristics, is unknown. The aim of the present
study was to therefore explore the relationships between epilepsy,
quality of life and marital adjustment and to study differences, if
any, with psychiatric illnesses.
Methods: Using a cross-sectional
design, sixty consecutively seen patients with an ICD 10 DCR diagnosis
of either schizophrenia or bipolar disorder and thirty consecutively
seen patients diagnosed with epilepsy according to the International
Classification of Epilepsy were taken up for the study and administered
WHO-QOL BREF and the Marital Adjustment Inventory. The data generated
was analyzed to study associations between the dependent variables of
quality of life and marital adjustment and differences, if any, between
the two diagnosis groups.
Results: There was significant
difference in income (p<0.001), education (p=0.02), duration of
illness (p=0.003) and marital status between the two groups (p=0.05).
Patients with epilepsy had better social relationships (p< 0.05) and
marital adjustment (p <0.001) as compared to patients with
psychiatric illnesses. There was no correlation between quality of life
and marital adjustment among both patients and spouses.
Conclusions:
Couple interventional programs, aimed at improving marital adjustment
among spouses may help in improvement of quality of life of patients
suffering from epilepsy.
Key Words: Quality of life, Marital adjustment, Epilepsy, Psychiatric Illness
Introduction
Enhancing
quality of life has become a major therapeutic goal of modern medicine.
Literature suggests that chronic illnesses, in addition to having long
treatment regimens, are also burdened by the stigma, family burden,
loss of skills, poor quality of life, poor interpersonal relations and
poor marital and/or sexual relations [1] associated with them. Epilepsy
is one such chronic condition affecting approximately 50 million people
worldwide [2] with numerous social and psychological consequences for
the afflicted. Epilepsy is an illness that has a great impact on the
lives of patients and their caregivers characterized in terms of social
isolation, prejudice, and unemployment, or in terms of emotional
influences like relationship difficulties and low self-esteem leading
to social stigma [3, 4].
People with epilepsy have been
observed to be more affected by the loss in quality of life (QOL) than
the seizures themselves [3, 5]. Childhood onset of seizures,
neurological co-morbidities, psychiatric co-morbidities, disease
duration and antiepileptic drug side effects have been reported as
important determinants of poor quality of life in such patients [2, 3,
6-9]. Among children, epilepsy can also limit opportunities of
education and their day to day functioning [6, 7], by intermittent
emotional distress heightened by epilepsy related factors such as
unpredictability of seizures, profound social isolation and
cognitive/academic dysfunctions due to discontinuous fragmented
learning. Guevara and colleagues [11] reported that variables like
female gender, poor seizure control, >6 seizures per month,
depression, unemployment, sleep disorders, and antiepileptic drugs were
significantly associated with lower global scores in QOLIE-31. Further,
anxiety and socially avoidant behavior have also been associated with
the presence of intractable epilepsy [12].
A case similar to
that of epilepsy is that of chronic psychiatric illnesses such as
schizophrenia or bipolar disorder. People with schizophrenia or mood
disorders have been reported to suffer from distress, disability,
reduced productivity and lowered quality of life [13-17]. Some
determinants of poor quality of life in schizophrenia reported were age
of onset of psychosis, premorbid adjustment, duration of untreated
psychosis [15], and the presence of positive psychotic symptoms [18].
An Indian study also revealed that the caregivers of both long term
physical illness like intractable epilepsy and psychiatric illnesses
like schizophrenia experience high levels of burden in the domains of
patient care, finance, physical and emotional burden, family relations
and occupation [1].
Marital adjustment, defined as the “state
in which there is an overall feeling in husband and wife of happiness
and satisfaction with their marriage and with each other” [19] has been
reported to be affected both in epilepsy [20, 21] and in psychiatric
illnesses [14, 22]. It has been observed that patients with epilepsy
tend to have low self esteem which can result in failure to establish
good sexual relationships and a lower likelihood of marriage,
especially in men. In fact, lack of marital satisfaction may also
directly influence the outcome of illness [23], due to deficiencies of
marital intimacy. Similarly, in schizophrenia, the duration of illness,
type of onset, auditory hallucinations, simple depression at intake,
unemployment and economic slide during the course of illness and a
relapsing course of illness have been all reported to be related to
marital outcome [14].
Therefore, although treatment, both in
terms of medical and psycho-social therapies, are intended to reduce
the distress and disability that patients suffer, they fail to
influence these vital measures, which stays poor inspite of all
remedies. Yet, little is known on marital adjustment and quality of
life in persons with epilepsy. The present study aims to shed light on
this unexplored area by studying quality of life and marital adjustment
in epilepsy and the inter-relations between them. It also attempts to
compare epilepsy with chronic psychiatric illnesses, such as
schizophrenia and bipolar disorder, in the domains of quality of life
and marital adjustment.
MethodsSubjectsThe
target population of this study included consecutive patients seen in
the outpatient department of Central Institute of Psychiatry, Ranchi,
India with an ICD-10 DCR diagnosis of schizophrenia or bipolar
disorder, collectively grouped together as “patients diagnosed
with psychiatric illness” and Epilepsy according to the International
Classification of Epilepsy [24] made by a Senior Resident or/and
Consultant, between the age range of 18 to 45 years, married, with two
or more than two years duration of illness, being in remission phase
(taken as BPRS [25] score of less than 16 for psychiatric patients) and
with no psychiatric or medical co-morbidity.
After
institutional review board (IRB) approval, a purposive random sampling
technique was employed for recruitment and individual patients were
invited to participate after explaining the study and taking written
informed consent. All ratings were done by mental health professionals
trained in psychiatric social work and raters were kept blind to the
diagnosis to prevent bias. The induction of patients continued till a
total sample size of 90 was obtained, 30 with epilepsy and 60 with
psychiatric illness, which was further subdivided into male and female
to prevent representation bias. Further, spouses of these patients were
also invited to take part in the study to assess their perception of
marital adjustment after written informed consent. However, only
patients formed the “Subject group” and the “Spouses group” were
analysed with regard to marital adjustment only.
The Dependant Variable“Quality
of Life” was tapped using the WHO Quality of Life-BREF scale developed
by Saxena and colleagues [26]. It is a self administered generic
questionnaire developed in Hindi and is a 26 items shorter version of
the WHOQOL-100 Scale. It covers the domains of physical health,
Psychological functioning, Social relationship, and environmental
situation. Marital Adjustment was assessed using Marital Adjustment
Inventory [27]. It measures marital adjustment in domains of mutual
care, mutual understanding, mutual trust, and adequate independence. It
has separate questionnaires for Husband and Wife.
The Independent variablesDemographic
variables included sex, age, education, religion (Hindu, Muslim,
Christian, and other), residence (urban, semi-urban and rural), income,
marital status (living together, separated, or divorced), years of
marriage, years of separation/divorce, type of family (nuclear versus
joint), duration of illness, frequency of seizures (in case of
epilepsy) and diagnosis.
Data AnalysisStatistical
analysis was performed using Chi- square test for categorical variables
and t-test for continuous variables. Co-relations analyses were
performed for studying significant variable relations using two-tailed
tests. All significance was reported at p < 0.05.
ResultsSocio-Demographic Characteristics of Epilepsy patientsThe
total sample size was 30 (table 1), with mean illness duration of 10.53
(+5.73) years. Majority (70%) of the patients were seizure free and
were equally divided between males and females with a mean age of 33.96
(+ 6.77) years. They had an average of 9.7 (+ 3.36) years of education
and had been married for a mean of 13.56 (+ 5.46) years. Almost all of
them were living with their spouses (100%), majority of them had
arranged marriage (96.7%) and earning an average of 4460.00 (+ 6687.59)
rupees per month.
Socio-Demographic Characteristics of Psychiatric patientsThe
total sample size was 60 (table 1), with a mean age of 34.48(+ 6.81)
years, and equally divided between males and females. They had a mean
illness duration of 6.86 (+5.08) years and an average of 8.03(+ 3.07)
years of education, being married for a mean of 14.11 (+ 6.72) years.
Majority of them were living with their spouse (88.3%), their marriage
arranged by the family (96.7%) and earning an average of 900.00 +
1630.74 rupees per month. Since women constituted half the sample, the
respondents were mostly housewives (46.7%), and about one-fourth
employed (25.0%) with a mean family income of Rs. 7366.66(+ 8043.77).
Majority of them were from urban areas (58.3%) and living in a joint
family setup (65%).
Comparison of socio-demographic characteristics between the groups
When
the two groups were compared on socio-demographic variables (table 1),
significant differences were noted in income with patients with
epilepsy (p<0.001) having higher incomes, in spite of having a
longer duration of illness (p=0.003) as compared to patients with
psychiatric illnesses. Further, patients with epilepsy were more
educated (p=0.02) and all (100%) were noted to be living together
compared to just 88% of those with psychiatric illness (p=0.05).
Comparison of Quality of Life between both the groupsWhen
the two groups were compared in terms of quality of life (table 2), no
significant difference was noted between the groups, but when different
domains of quality of life were compared, a majority of patients with
epilepsy (60.0%) were noted to have better social relationships as
compared the majority with psychiatric illness (61.7%) having poor
social relations (p < 0.05).
Comparison of Marital Adjustment among patients of both the groupsIn
the domain of marital adjustment among patients (table 2), significant
differences were noted with the majority (60%) of patients diagnosed
with epilepsy showing good adjustment with their spouses as compared to
the majority with psychiatric illness (73.3%) having poor adjustment (p
< 0.001).
Comparison of Marital Adjustment among spouses of both the groupsSimilarly,
in the domain of marital adjustment among spouses of the patients
(table 2), majority (73.3%) of spouses of patients with epilepsy showed
a good adjustment with their counterpart as compared to a poor
adjustment (47.4%) seen among spouses of patients with psychiatric
illness (p<0.001).
Correlation between Quality of Life and
Marital Adjustment among patients and spouses No significant
co-relations (table 2) were observed between quality of life and
marital adjustment among patients and spouses, although a negative
non-significant trend was observed among spouses.
DiscussionThe
study of quality of life in various medical and psychiatric conditions
is not an innovative quest; however, this study from India marks
probably one of the first studies to directly compare psychiatric
illness with epilepsy and to observe the influences of marital
adjustment with quality of life in these two groups. With both groups
of illnesses following a chronic course and being associated with
similar co-morbidities, we believe that these groups are comparable
when it comes to assessing quality of life and marital adjustment, both
of which can have a significant impact on psychosocial functioning.
Further, since we attempted to have equal representation of gender in
both groups, we believe that our findings are significant enough and
may be generalized for formulation of better treatment strategies that
involve the aspect of marital adjustment.
When
socio-demographic variables were compared, patients with epilepsy were
observed to have higher income and lower unemployment rates than the
psychiatric group. Since people with mental illnesses are among the
most socially and economically marginalized members of the community,
experience high levels of unemployment and may experience disrupted
vocational training and normal career development [28], such
differences may translate into poorer incomes and socio-economic
status. With higher levels of education noted among our epilepsy
patients in spite of a longer duration of illness, we believe that the
severity and chronicity of mental illnesses can truncate primary,
secondary, or tertiary education [28]. However, since other studies
have observed otherwise [3, 29], we believe that perhaps cross-cultural
differences or the unequal distribution of samples in our study may
account for these findings.
We also observed good marital
status among all patients with epilepsy. This is in contrast to Agarwal
et al [30] who reported poor marital status and high divorce rates
among epilepsy patients, in contrast to high rates of marriage (up to
70%) being seen in this population [31, 32]. Since remission of
seizures are associated with improvement in marital status [21, 33],
such variance in findings may possibly be due to the fact that most of
our patients (70%) were seizure free.
Comparison of the
overall quality of life revealed no significant difference between the
two groups demonstrating that perhaps both illnesses are associated
with similar quality of life i.e., majority of the people with
psychiatric or epileptic illness have poor quality of life (61.7% and
63.3% respectively). In other words, both types of illnesses have
similar impact on quality of life in the domains of psychological,
physical and environmental QOL. Poor quality of life among psychiatric
patients and epilepsy has already been reported in previous studies
[34-37]. However, patients with epilepsy in our study were observed to
have better quality of life in terms of social relationships as
compared to psychiatric patients, possibly due to the higher employment
rates [11] and better marital support [38] contributing to better
perceptions of social support.
Marital adjustment between the
two groups revealed a significant difference showing that patients with
epilepsy and their spouses tend to have better perception of marital
adjustment than psychiatric patients and their spouses. We hypothesize
that mental illness as a whole hampers the ability of the patient to
play the marital role (of husband or wife respectively) leading to poor
marital adjustment [39, 40]. Since the marital role comprises cultural
expectations associated with the husband or wife, inability to fulfill
those expectations could lead to marital dissatisfaction [41]. It can
however be argued that such expectations would necessarily be hampered
even in spouses, and our study has shown similar findings.
When
marital adjustment was correlated with quality of life, no significance
was noted, demonstrating that the perception of better marital
adjustment among patients does not translate to better quality of life.
However, spouses continue to perceive a poor quality of life
irrespective of marital adjustment. We hypothesize that spouses may be
dissatisfied with the inhibited marital role that patients’ exhibit due
to the illness, which reflects in a poorer quality of life. This needs
to be confirmed by other studies, yet we believe that addressing the
specific concerns of marital adjustment may play a vital role in the
outcome of the illness. In such cases, marital therapy, aimed at
improving relations between couples, could help the perceptions of
marital adjustment thereby improving the overall quality of life.
Although
our study was among the first to directly study associations of marital
adjustment and quality of life and to compare these variables in two
different diagnoses by using standardized and valid scientific tools,
we believe that there are certain limitations to our study. The groups
were not divided equally in terms of diagnosis and study was from a
single-centre. Future studies would need to be multi-centric,
involving larger sample sizes, making even cross-cultural comparisons
possible.
Conclusion:Patients with
epilepsy have poor quality of life, a finding similar to those
suffering from psychiatric illnesses. Although marital adjustment
continues to be good for both patients and spouses with epilepsy, it
also influences the overall perception of quality of life, perhaps
reflecting that inclusion of marital therapy, aimed at couples, may
help in overall improvement of quality of life of patients with
epilepsy.
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