According to the World Health Organization, approximately 7.60 per 1000 individuals experience epilepsy during their lifetime, with the condition affecting around 70 million people of all ages worldwide [1
]. The maximum incidence of epilepsy, i.e., 102 per 100,000 cases annually, occurs in the first year of life, similar to the age range of 1 to 12 years. The incidence of epilepsy in children aged 11–17 is 21–24 per 100,000 cases [2
]. Epilepsy is the most common neurological brain disorder seen in children. The diagnosis of epilepsy can be challenging as many epilepsy imitators have to be considered. Neuroimaging and electroencephalography seem to be critical in determining the etiology of the condition. In addition, genetic testing is often useful, especially in the case of early-life epilepsies [4
]. While one-third of cases of epilepsy are caused by acquired injuries (injury during the labour, brain injury or tumour), the remaining cases are believed to be due to genetic factors, including monogenic and polygenic inheritance [5
]. The monogenic forms of epileptic disorders tend to occur earlier in life and cover a broad clinical spectrum, from mild, self-limited epilepsy (epilepsy caused by inborn errors of metabolism) to severe early-onset encephalopathy and epilepsies linked to other neurodevelopmental problems [6
]. Early diagnosis is crucial to reducing the risk of recurrence, ensuring a better prognosis and optimizing treatment in order to ensure the best possible quality of life for the child and their parents or legal guardians. Furthermore, establishing a diagnosis of epilepsy in early childhood has a profound impact on the child’s psychological and physical development. It may reduce certain limitations in the lives of the child’s parents or legal guardians and improve general well-being and quality of life [5
]. It has been found that specific limitations associated with a disability or impairment may be an important factor affecting mobility, the choice of profession and family planning decisions [7
]. Studies have shown that restrictions and limitations may also be a risk factor for depression in mothers of children with epilepsy [8
Quality of life (QoL) depends on numerous factors. In the case of children with epilepsy, some of those factors are directly linked to frequent seizures and adverse effects of the medication taken [10
]. QoL is a complex and multidimensional construct that represents the general well-being of an individual by outlining individual positive and negative aspects of life [14
]. At the contemporary advanced stage of the medical care system, development emphasis is placed not only on direct treatment effects but also on the patient’s QoL and, at the same time, on their families’ and legal guardians’ QoL. Importantly, epilepsy retards the achievement of independence in a child and makes social relationships and cognitive processes more difficult. These are factors that influence the child’s individual development, and, therefore, they should be evaluated on a constant basis during the treatment.
There is a need for a deeper analysis of an epileptic child’s QoL as learning their psychosocial functioning should provide a possibility for taking the right actions in terms of care for these children. Studies on the epileptic child’s QoL may help with a potential improvement of the care as well as contribute to the creation of novel models of support and work with the children or elaborate a completely new schedule of support provided for the benefit of these children and their families. The child’s disease is a reason for the worsening of its QoL, which is manifested by a decrease in its mental and physical skills. The use of the correct treatment, its normal course, and, first and foremost, the adequate conditions for a child’s harmonic development may lead to the improvement of the patient’s functioning and reduce the negative effect of the disease on the family’s functioning.
The aim of our study was to assess the quality of life in children with diagnosed epilepsy and the impact of a child’s epilepsy on the functioning of their family.
2. Materials and Methods
2.1. Population and Study Design
The study was conducted in 2019 at the paediatric department with a sub-department of neurology at one of the leading specialist medical centres in Poland. The study included a total of 103 parents and legal guardians of children with diagnosed epilepsy (Table 1
and Table 2
The most frequent kind of seizures were represented by partial seizures (63%). At the same time, generalized tonic and clonic seizures constituted only 28% of all these episodes. In just 4% of patients attacks of unconsciousness were reported. Mean age of the disease diagnosis was 3.5 years. Among patients, seizures were divided into three intervals of frequency, i.e., recorded every day, once to five times a month or at least once a year in 3.8%, 19% and 78.8% of the patients, respectively. Only 21.2% of children studied had no seizures for the full year. The majority of children (87%) did not yield any disorders in their psychomotor development evaluated on the basis of child’s health balances by a paediatrician and a neurologist.
The study was conducted by means of a diagnostic survey using standardised questionnaires: a generic questionnaire assessing QoL in children (PedsQL 4.0), with appropriate forms for specific age groups (2–4, 5–7, 8–12, 13–18, 19–25, 25 or over) [15
], a questionnaire assessing the impact of a child’s chronic health condition on the functioning of their family (PedsQL 2.0 Family Impact Module) [20
] and our own questionnaire with questions concerning sociodemographic data. The respondents were selected using purposive sampling. The Polish version of all instruments was used. The PedsQL questionnaire was developed for measuring quality of life in children suffering from acute and chronic disease. The Paediatric Quality of Life Inventory (PedsQL 4.0TM) and The PedsQLTM Family Impact Module have good reliability, validity and sensitivity (internal consistency reliabilities exceeded the minimum alpha coefficient standard of 0.7).
The inclusion criteria for the study were as follows: epilepsy diagnosed in the child in accordance with the ICD-10 criteria, declaration that the respondent is the main caregiver of the child and resides permanently with the child concerned, absence of a diagnosed mental illness in the respondent. The exclusion criteria were as follows: an incomplete questionnaire, lack of written consent to participate in the study. The respondents received the questionnaires in paper form for self-administration and were provided with a complete information sheet stating that participation in the study was voluntary and anonymous.
2.2. Measuring Instruments
2.2.1. The Paediatric Quality of Life Inventory (PedsQL™) 4.0 Generic Core Scales
PedsQL 4.0 is used to measure health-related quality of life in children and adolescents, both healthy and those with chronic and acute health conditions, aged between 2 and 18 years. The questionnaire allows for the assessment of the functioning, and hence also deficits, of young patients in four areas: physical functioning, emotional functioning, social functioning and work (preschool/school) functioning. Moreover, the questionnaire yields two summary scores: the psychosocial health summary score, which comprises the average of items in the emotional, social and work/school functioning subscales, and the total QoL score (which comprises the average of items in all four subscales). There are no standards allowing for the interpretation of the subscale scores as low, medium or high. However, scores on each of the subscales range from 0 to 100, which makes it possible to compare them. A higher score on a given subscale represents better functioning in a given domain of life.
2.2.2. PedsQL 2.0 Family Impact Module
The PedsQL Family Impact Module has been developed to assess the functioning of respondents in eight areas: physical functioning, emotional functioning, social functioning, cognitive functioning, communication, worry, daily activities and family relationships. The questionnaire also yields three summary scores: the parent health-related quality of life summary score (which is calculated by averaging items in the physical, emotional, social and cognitive functioning scales), the family functioning summary score (which is calculated by averaging items in the daily activities and family relationships scales) and the total impact score (which is calculated by averaging items in all eight scales).
2.2.3. Authors’ Own Questionnaire
Our own questionnaire comprised 7 questions, including those concerning sociometric data such as: age of the child, age of the parent/legal guardian, gender of the parent legal guardian, education of the parent/legal guardian, place of residence and marital status of the parent/legal guardian and a question concerning clinical data, i.e., about whether the child has any comorbidities.
2.3. Statistical Methods
An analysis of quantitative variables (i.e., expressed as numbers) was carried out by calculating means, standard deviations, medians and quartiles as well as minimum and maximum values. Qualitative variables (i.e., not expressed as numbers) were analysed by calculating the number and percentage of occurrences of each value. The values of quantitative variables in two groups were compared using Student’s t-test (where the variable concerned had a normal distribution in the groups analysed) or the Mann-Whitney test (otherwise). The values of quantitative variables in three or more groups were compared using an analysis of variance—ANOVA (where the variable concerned had a normal distribution in the groups analysed) or the Kruskal-Wallis test (otherwise). Where statistically significant differences were detected, a post-hoc analysis was carried out (using Fisher’s LSD test where the distribution was normal or Dunn’s test where the distribution was not normal) to determine which groups differ from one another. Pearson’s coefficient was used to analyse correlations between two quantitative variables (where the two variables had a normal distribution). In cases where at least one of the variables did not have a normal distribution, Spearman’s coefficient was used.
The strength of relationships was interpreted as follows [24
|r| ≥ 0.9—very strong relationship;
0.7 ≤ |r| < 0.9—strong relationship;
0.5 ≤ |r| < 0.7—moderate relationship;
0.3 ≤ |r| < 0.5—weak relationship;
|r| < 0.3—very weak relationship (negligible).
A multi-factor analysis of the independent impact of a number of variables on a qualitative variable was carried out using linear regression. The results were reported as the values of the regression model parameters with a 95% confidence interval. The normality of distribution of variables was tested using the Shapiro-Wilk test. A level of significance of 0.05 was used in the analysis. Therefore, all p-values of less than 0.05 were interpreted as indicating significant relationships. The analysis was performed using the R software, version 3.4.3.
2.4. Ethical Aspects
The study was conducted in accordance with the guidelines of the Declaration of Helsinki and approved by the Institutional Review Board (or Ethics Committee) of the Wroclaw Medical University (No. KB–122/2017). The authors declare no conflict of interest.
A chronic disease may be the cause of many changes in all spheres of a child’s life, from daily duties through emotional and cognitive development to self-image and relationships with other people. In particular, it may have a negative effect on his contact with peers or functioning in school or in the family. Epilepsy compromises the quality of life of patients because, as a chronic disease, it affects the patient’s daily life, both personally and socially. The present study was designed in such a way as to allow for the identification of the determinants of quality of life in children with epilepsy and the impact of the condition on family functioning. We assessed selected parameters using age-specific questionnaires. We found that QoL in children with epilepsy was highest in the social and physical domains and lowest in the preschool/school/work functioning domain. Older children had a lower overall QoL, as measured by the total QoL score, as compared with younger children. The mean preschool/school functioning score was higher for children aged 2–4 years than for children aged 5–7 years and those aged 8–12 years. Similar associations were found for the psychosocial health domain. The mean psychosocial health summary score for children aged 2–4 years was much higher as compared with that for children aged 8–12 years. In their study, Nadkarni et al. [25
] reported similar findings. According to the authors, the worse QoL in the emotional, social and behavioural domains observed in older children with epilepsy may be due to the fact that older children are more likely to perceive a stronger negative impact of the condition on their lives and find it more difficult to cope with its complications, as they are more aware of seizures and their consequences. Therefore, older children with epilepsy have a more negative attitude towards their condition. In their study, Riechmann et al. [26
] found no differences in QoL relative to the age of patients. It has been found that, in children with epilepsy aged over 8 years, quality of life is related to their mental health and peer support and is not associated with the severity of seizures. This finding is consistent with literature reviews by Huebner et al. [27
] and Fayed et al. [28
], which showed that recurrent positive everyday experiences (e.g., at school or in the family) are more important to satisfaction with life in children than major life stressors (such as the diagnosis of epilepsy or seizures). Lowering life satisfaction caused by a specific limitation in social functioning may additionally result in the patient’s impoverishment, minimizing contacts with friends or extended family. This may result in the phenomenon of loneliness and isolation from life and the lack of acceptance of one’s own illness. Therefore, there is a lot of potential for clinicians to improve or maintain young patients’ positive perceptions of their lives in the context of an epilepsy diagnosis through the provision of psychosocial care [29
]. The direct relationship between peer support and QoL suggests that interventions targeted at peers may have an immediate effect on QoL in children with epilepsy. The way the patients react to the disease is very individual. Awareness of the disease can provoke negative feelings, even when the therapeutic effect is good and the seizures are fully controlled. The method of treatment is not indifferent to the quality of life of the patients.
Our study did not show an association between QoL in children with epilepsy and the level of parental education. In contrast, Masri et al. [30
] found that the higher the education level of parents of children with epilepsy, the better the parents’ knowledge of the condition. These authors also showed that there is an association between positive parental attitudes and behaviours towards epilepsy and a higher parental education level. Moreover, the better the attitudes of parents, the better they function in everyday life and, consequently, the better the quality of life of their children, who thus have a closer bond with their parents. We found no statistically significant association between QoL in children with epilepsy and their place of residence. In contrast, Nadkarni et al. [25
] found that the overall QoL in children with epilepsy living in rural areas was lower as compared to that of children living in urban areas. This may be due to the stigma of epilepsy that is present in rural areas, which worsens the functioning of children with epilepsy living in rural areas as compared to those living in urban areas. In addition, the treatment and control of epilepsy may be difficult in rural families due to insufficient access to centres with a high degree of specialized neurological care.
The analysis of our findings showed that there is an association between QoL in children with epilepsy and the presence of comorbidities. Children with comorbid conditions had a significantly lower QoL in the physical functioning, social functioning, psychosocial health and preschool/school/work functioning domains as well as a significantly lower overall QoL, as measured by the total QoL score, as compared with children with epilepsy only. These findings are consistent with the results of previous meta-analyses, in which the presence of comorbidities was identified as a significant factor reducing QoL [30
]. What plays an important role in the life of a child with a medical condition is their family, who help them deal with the condition. The family is the foundation of society. It is the smallest basic unit in which we learn to live and function. The family environment is the first educational environment in a child’s life, which shapes their feelings and attitudes. One of the most valuable features of a family would be mutual interactions among its members (in this case parents and children), which build understanding, trust and the feeling of security in the family environment. Each action that is taken and each situation that occurs in a family has an impact on all its members. Strong bonds are formed between family members, including those between parents and children and those between siblings. All those relationships become very much pronounced in the context of difficulties that disturb the peace and harmony in family life. Undoubtedly, one example of such adversity is a child’s illness [32
In the present study, we also analysed the impact of a child’s health condition on family functioning. We found that the parents of children with epilepsy included in our study reported the highest scores for the cognitive functioning and family relationships domains and the lowest scores for the worry and emotional functioning domains. This may undoubtedly be due to the concerns that the parents of children with epilepsy have about their children’s future and about how their children’s medical condition will be perceived by others. In addition, chronic conditions are often associated with a lack of prospects for normal, independent functioning. Emotional factors play a role in reducing QoL. There are reports showing that there is an association between the anxiety, stress and fear experienced by parents and the quality of their child’s life [34
]. In their paper on parental concerns towards children with epilepsy, Murugupillai et al. [35
] noted that these concerns are multidimensional and relate to such areas as the child’s physical, behavioural, psychological and social functioning, and education as well as treatment with anti-epileptic medications. The parents studied were also concerned that epilepsy would affect their children’s prospects for continuing education, securing a good job and getting married. Raising a child as a single parent has negative effects on the parent’s physical and social functioning and overall quality of life. In their paper, Rozenek and Owczarek [36
] discussed the issue of the behaviour of the parents of children with epilepsy. The burden of a child’s illness is often such a strong stressor for parents that they are unable to cope with it on their own. It disrupts the relationship between parents and leads to conflicts and grudges, including those relating to the views on the child’s treatment as well as the restrictions and parenting methods used. When trying to deal with an excess of emotions relating to their child’s diagnosis, parents sometimes throw themselves into work or resort to alcohol. All those negative experiences are accompanied by the lack of social acceptance and support and by the constant fatigue and stress resulting from permanent alertness and an increased number of responsibilities [37
]. The daily care and rehabilitation of a child with a disability as well as the disability itself are stressors conducive to the development of various disorders and burnout. This phenomenon is more likely to affect mothers than fathers, as mothers carry out a range of care, housekeeping, nursing and educational activities. Raising a child with a disability as a single parent is extremely difficult. Single parents of children with disabilities have an excessive burden of responsibilities and often have no support from people close to them. Mothers of such children are at a high risk of experiencing psychological and physical strain, and some even experience depression [38
]. In the case of single parents, the everyday care of a child with an illness contributes to a reduction in social contact and the isolation of the family. In their paper on the functioning of the families of children with cerebral palsy, which, like epilepsy, is a chronic condition, Britner et al. [38
] indicated that partners may be of great support to one another in dealing with a child’s illness, which confirms the results of the present study, which found that those parents and legal guardians who were in a relationship reported better family functioning. The child’s disease requires the mobilization of the family members, a mutual understanding and actions. Caring duties, together with other household work, may excessively burden the mother; therefore, this is the point when she needs the greatest support. The organisation of the home, focused on solving the problems, gives rise to a series of changes in intrafamilial relationships. This, in turn, may result in the disturbance of the emotional atmosphere in the family, due, at least in part, to the unsatisfied needs of the mother. It is pivotal to understand that a family coping with an epileptic child is an interactive process covering not only behavioural responses but also, most importantly, triggering the resources required in the process of handling a difficult situation. A child’s chronic disease is such a case for the family.
Limitation of the Study
The findings of the present study must be interpreted with caution, with some limitations kept in mind. First, the evaluation of quality of life by a parent/legal guardians-proxy might be limited to their individual perceptions of health status and functioning among children and adolescents. The second limitation concerns the fact that quality of life was assessed on the basis of generic scales; in future studies, a child-specific questionnaire should be used.