Keywords
Epilepsy - Family Support - Quality of Life
Palavras-chave
Epilepsia - Apoio Familiar - Qualidade de Vida
INTRODUCTION
Epilepsy is a chronic neurological disorder and adult patients with epilepsy may have
psychiatric and cognitive comorbidities, with frequent social repercussions and impaired
quality of life (QoL).[1] It is known that patients with epilepsy have a worse perception of QoL when compared
to the general population and people who suffer from other chronic illnesses.[2]
[3] In epilepsy, several clinical and psychosocial factors and the perception of social
support are related to QoL.[4]
[5]
[6]
[7] The perception of family support in childhood epilepsy is well described in the
literature. However, there is little literature that discusses the effects of family
support in adult patients. Studies describe that individuals with chronic illnesses
are more dissatisfied and perceive lower family support.[8] A better understanding of the perception of family support in epilepsy can increase
knowledge of health-related QoL in epilepsy, and thus contribute to better guidance
as a strategy to mitigate the stigma and social restrictions that adults with epilepsy
may be subject to. The aim of this study was to assess the perception of family support
in adult patients with epilepsy and relate these data to the perception of QoL and
clinical variables.
METHODS
This observational study consecutively included patients aged 18 years or older, treated
at the clinical neurology outpatient clinic of the Hospital PUC-Campinas (Pontifícia
Universidade Católica de Campinas), with a diagnosis of epilepsy according to the
criteria of the International Classification of Epilepsy and the Epileptic Syndromes
of the International League Against Epilepsy (ILAE).[9]
Patients undergoing epilepsy surgery, with disabling chronic illnesses, with neurodegenerative
illnesses, and with severe cognitive deficits were excluded from the study. All participants
signed the informed consent form. The project was approved by the PUC-Campinas Human
Research Ethics Committee, CAAE reference number: 13195619300005481; approval number:
3608734. All patients were interviewed individually in a hospital room, before their
regular outpatient medical appointment.
Procedures
The patients underwent the following assessments:
-
Questionnaire for collecting demographic data (age, gender, educational level, and
marital status) and clinical variables of epilepsy (age of onset, type, and frequency
of epileptic seizures, and the number of antiseizure medications (ASMs) taken. Inventory
of Perceived Family Support (IPFS), a questionnaire with 42 statements about understanding
the perception of family support received by the patient. The inventory is evaluated
by the total score and three dimensions: affectivity, adaptability, and autonomy.
The higher the score, the better the individual's perception of the family support
received.[10]
-
The Mini-Mental State Examination (MMSE) for cognitive tracking[11]
[12]; the Quality of Life in Epilepsy Inventory (QOLIE-31) to assess the perception of
QoL[13]
[14]; and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) to assess
the presence of depressive symptoms (no = < 15; yes = ≥ 15).[15]
[16]
Statistical analysis
The IPFS scores (dimensions and total score) were related to clinical variables and
MMSE, NDDI-E, and QOLIE-31 scores. To describe the characteristics of the sample,
frequency tables were created for categorical variables with values of absolute frequency
(n) and percentage (%), and for quantitative variables, descriptive measures were
obtained (mean, standard deviation). To compare continuous measurements between the
two groups, the Mann-Whitney test was applied. To assess the linear relationship between
the variables, Spearman's correlation coefficient was used.
To assess the factors demographic (age, gender, marital status) and clinical variables
(age of onset, length of epilepsy, type, and frequency of seizures, and number of
ASMs taken) and scores on the QOLIE-31 and on the NDDI-E (presence of depression yes/no)
related to the total score on the IPFS, multiple linear regression analysis was used,
with a stepwise criterion for selecting variables. Variables were transformed into
ranks due to the absence of normal distribution. The significance level adopted for
the statistical tests was 5%.
RESULTS
This study included 130 patients with epilepsy. The type of epileptic syndrome was
genetic (generalized idiopathic) in nine (6.9%) cases, unknown etiology in 38 (29.2%)
cases, and structural focal in 83 (63.8%) cases. The etiology of structural epilepsy
was temporal lobe epilepsy with hippocampal sclerosis in 41 cases, vascular in 20
cases, traumatic brain injury in four cases, surgery for an intracranial tumor or
vascular malformation in 10 cases, and other etiologies in eight cases. Clinical aspects
and scores of the IPFS and of the QOLIE-31 are shown in [Table 1].
Table 1
Demographic aspects and clinical data of adult patients with epilepsy
|
Variables
|
(±or %)
|
|
Age (years)
|
49.9 ± 17.0
|
|
Educational level (years)
|
6.1 ± 4.0
|
|
Female sex
|
72 (55.4%)
|
|
Marital status – married
|
77 (59.2%)
|
|
Occupation – employed
|
59 (78.7%)
|
|
Inventory of perceived family support
|
Affectivity
|
32.1 ± 8.9
|
|
Adaptability
|
20.9 ± 4.7
|
|
Autonomy
|
13.2 ± 3.6
|
|
Total score
|
66.1 ± 14.0
|
|
Age of onset (years)
|
29.0 ± 22.1
|
|
Length of epilepsy (years)
|
20.8 ± 15.4
|
|
Type of seizures: focal/generalized
|
108/22
|
|
Frequency of seizures: < once/year/≥once/year
|
67/63
|
|
Antiseizure medications: 1/≥2
|
85/45
|
|
Neurological disorders depression inventory for epilepsy
|
< 15
|
112
|
|
≥ 15
|
17
|
|
QOLIE-31 (total score)
|
55.9 ± 28.4
|
Abbreviations: QOLIE-31, Quality of life in epilepsy inventory.
IPFS: clinical aspects and QoL
There was no correlation between IPFS scores and age, educational level, age of onset,
length of epilepsy, and MMSE scores. Patients with higher IPFS scores (total score
and on the affectivity and adaptability dimensions) had lower scores on the NDDI-E.
There was a positive and significant correlation between the scores on the QOLIE-31
and the total score and IPFS scores ([Table 2]).
Table 2
Correlation values between IPFS scores and age, age of onset, and NDDI-E, MMSE, and
QOLIE-31 scores
|
Variables
|
Total score
|
Family affectivity
|
Family adaptability
|
Family autonomy
|
|
r
|
P
|
r
|
p
|
R
|
p
|
r
|
p
|
|
Age
|
-0.04708
|
0.5992
|
-0.01025
|
0.9086
|
-0.03682
|
0.6799
|
0.02131
|
0.8113
|
|
Age of onset
|
-0.10027
|
0.2620
|
-0.05731
|
0.5205
|
-0.07101
|
0.4257
|
-0.05003
|
0.5750
|
|
NDDI-E (total score)
|
-0.21774
|
0.0139*
|
-0.18784
|
0.0345*
|
-0.22023
|
0.0125*
|
-0.08725
|
0.3274
|
|
MMSE
|
-0.05746
|
0.5211
|
-0.08025
|
0.3679
|
-0.04924
|
0.5810
|
0.01632
|
0.8550
|
|
QOLIE-31
|
Seizure worry
|
0.06193
|
0.4892
|
0.01638
|
0.8544
|
0.10258
|
0.2492
|
0.17377
|
0.0498*
|
|
Overall QoL
|
0.11295
|
0.2061
|
0.08320
|
0.3505
|
0.19187
|
0.0300*
|
0.00191
|
0.9829
|
|
Emotional well-being
|
0.15294
|
0.0861
|
0.17680
|
0.0459*
|
0.13926
|
0.1169
|
0.05167
|
0.5624
|
|
Energy/ fatigue
|
0.21699
|
0.0143*
|
0.18523
|
0.0363*
|
0.27932
|
0.0014*
|
0.02987
|
0.7378
|
|
Cognitive function
|
0.07302
|
0.4146
|
-0.01446
|
0.8713
|
0.17666
|
0.0461*
|
0.12970
|
0.1445
|
|
Medication effects
|
0.07574
|
0.3974
|
0.03836
|
0.6672
|
0.23253
|
0.0083*
|
0.07361
|
0.4089
|
|
Social function
|
0.08512
|
0.3414
|
-0.00795
|
0.9290
|
0.18885
|
0.0328*
|
0.13637
|
0.1248
|
|
Total score
|
0.10408
|
0.2442
|
0.03995
|
0.6543
|
0.22987
|
0.0090*
|
0.12752
|
0.1515
|
Abbreviations: IPFS, Inventory of Perceived Family Support; MMSE, Mini-mental state
examination; QOLIE-31, Quality of life in epilepsy inventory; NDDI-E, Neurological
Disorders Depression Inventory for Epilepsy.
Notes: Spearman correlation; *p < 0.05.
When evaluating the perception of family support according to demographic and clinical
aspects, it was observed that there was no significant difference in the IPFS according
to gender, current frequency and type of epileptic seizure, number of ASMs taken,
and type of epileptic syndrome. Married patients perceived more affection and greater
family support (total score) when compared to those with other marital situations
(single/widowed/separated). Patients with depression perceived less family support
([Table 3]).
Table 3
Inventory of perceived family support according to demographic data and NDDI-E scores
|
Variables
|
Total score
|
Affectivity
|
Adaptability
|
Autonomy
|
|
Sex
|
Female (n = 72)
|
65.44 ± 14.57
|
31.28 ± 9.52
|
20.67 ± 4.73
|
13.56 ± 3.76
|
|
Male (n = 58)
|
67.14 ± 13.51
|
33.21 ± 8.22
|
21.38 ± 4.82
|
12.82 ± 3.45
|
|
p-value
|
0.4397
|
0.1796
|
0.2364
|
0.2057
|
|
Marital status
|
Married (n = 77)
|
68.29 ± 14.60
|
33.50 ± 9.19
|
21.43 ± 4.71
|
13.56 ± 3.58
|
|
Others (53)
|
63.15 ± 12.82
|
30.15 ± 8.38
|
20.34 ± 4.82
|
12.77 ± 3.68
|
|
p-value
|
0.0079*
|
0.0087*
|
0.1699
|
0.2710
|
|
Occupation
|
Employed (n = 59)
|
67.69 ± 12.25
|
32.90 ± 7.46
|
21.17 ± 4.20
|
13.63 ± 3.96
|
|
Unemployed (n = 16)
|
62.53 ± 20.52
|
32.88 ± 13.19
|
19.07 ± 6.37
|
11.60 ± 4.12
|
|
p-value
|
0.3966
|
0.7756
|
0.3795
|
0.1003
|
|
NDDI-E (total score)
|
< 15 (n = 112)
|
68.68 ± 12.37
|
33.37 ± 8.16
|
21.74 ± 4.02
|
13.61 ± 3.50
|
|
≥ 15 (n = 17)
|
48.88 ± 13.29
|
22.63 ± 8.44
|
15.63 ± 6.14
|
10.63 ± 3.52
|
|
p-value
|
<0.0001*
|
<0.0001*
|
<0.0001*
|
0.0006*
|
Abbreviation: NDDI-E, Neurological Disorders Depression Inventory for Epilepsy.
Notes: Mann-Whitney test; *p < 0.05.
Multiple linear regression analysis was applied in order to assess which demographic
and clinical variables are related to the total IPFS score. It was observed that marital
status and the presence of depression were the variables that are jointly associated
with the total score on the IPFS. Married patients (R2 0.1756; p-value 0.0197) and those not classified as depressed (NDDI-E <15) (R2 0.0355; p-value < 0.0001) had higher values for the total score on the IPFS (better perception
of family support).
DISCUSSION
This study assessed the perception of family support and its relationship with clinical
variables in individuals with chronic epilepsy. Despite the benefits of family involvement
in chronic illnesses being well documented in the literature, there are still reports
of difficulties in this relationship. The lack of social support and the presence
of family dysfunction are the main problems observed in families of patients with
severe chronic illnesses, particularly in those with mental disorders.[17]
[18]
[19]
In different cultures, the psychosocial repercussions of epilepsy such as stigma,
low self-esteem, social restrictions, and the negative impact on psychosocial well-being
affect patients and families.[20]
[21] Family involvement in epilepsy, particularly in cases with epileptic seizures refractory
to treatment, can mean challenges, conflicts, and sometimes overload, or even emotional
distancing and denial, which can reflect on the bond between patients with epilepsy
and family members.
Married patients with epilepsy perceive better family support than single/widowed/separated
ones. A growing number of studies have demonstrated the importance of marital quality
in dealing with the stress associated with the presence of chronic illnesses. Marital
satisfaction is perceived as strong family and emotional support with positive repercussions
in coping with illnesses.[22]
Patients with epilepsy without depressive symptoms perceive greater family support,
which may be related to the positive effects of greater engagement and family cohesion
and emotional bonding with consequent reduction of stress and negative emotions.[22]
[23] It is known that families that are more cohesive and concerned about those with
chronic illnesses tend to have early detection of warning signs of depressive symptoms,
thus contributing to helping to reduce the severity of symptoms.[24]
Better QoL was related to a greater perception of family support. It is known that
greater family involvement is intrinsically associated with physical, emotional, and
social health and with better QoL.[19] Better QoL perception in the well-being and energy/fatigue dimensions was associated
with greater family affection, family cohesion, and emotional bonding.
This study has several limitations. Firstly, it is a cross-sectional study, and therefore,
the causality of the relationships cannot be inferred. Another limitation is that
the data were obtained from a single university hospital, with a small sample, so
these findings should be interpreted with caution. However, the data obtained are
relevant and unpublished, and, therefore, the use of data from this study is plausible.
In conclusion, family support was associated with demographic aspects, the absence
of depression, and better QoL perception. Family relationships can play an essential
role as providers of self-care and adjustment behaviors in the context of health and
to maintain QoL in epilepsy.
