|Year : 2017 | Volume
| Issue : 2 | Page : 110-116
Assessment of quality of life in children with epilepsy in rural settings of South India: A cross sectional study
Mullazy Paramadam Srujana, Easwaran Vigneshwaran, Gandesiri Sangeeth Kumar, Kolisetty Jyoshna, Mantargi Md Jaffar Sadiq
Department of Pharmacy Practice, Raghavendra Institute of Pharmaceutical Education and Research, Anantapur, Andhra Pradesh, India
|Date of Web Publication||14-Mar-2017|
Mullazy Paramadam Srujana
Department of Pharmacy Practice, Raghavendra Institute of Pharmaceutical Education and Research, Anantapur, Andhra Pradesh
Source of Support: None, Conflict of Interest: None
Background: Epilepsy is the most common pediatric neurological disorder which alters the conscious, behavior, motor activity, and autonomy function leads to compromised quality of life (QoL) in children. Objective: The aim is to assess the QoL, and to evaluate the influence of demographic and clinical factors on QoL in children with epilepsy. Materials and Methods: This is a cross-sectional study conducted over 1 year from October 2013 to September 2014. Baseline demographic characteristics and other details were collected from patient case data and through a semi-structured interview during their recruitment into the present investigation. The child version of TNO-AZL Children's QoL questionnaire was administered by the trained research coordinator to collect data from and about the study subjects. Statistical Analysis: ANOVA and student t-test were performed for the statistical analysis. The data analysis was performed using Graph pad instat 126.96.36.199. Results: The educational status, socioeconomic status, and maternal education were the demographic characters that significantly affected the QoL of study subjects. Type of seizures, early childhood history of seizures, duration of therapy and duration of epilepsy were the most important clinical characteristics that could significantly affect the QoL of study subjects. Conclusion: Further QoL studies and interventional programs may be conducted to improve the QoL and to individualize management in rural resident children with epilepsy.
Keywords: Children, epilepsy, quality of life
|How to cite this article:|
Srujana MP, Vigneshwaran E, Kumar GS, Jyoshna K, Jaffar Sadiq MM. Assessment of quality of life in children with epilepsy in rural settings of South India: A cross sectional study. CHRISMED J Health Res 2017;4:110-6
|How to cite this URL:|
Srujana MP, Vigneshwaran E, Kumar GS, Jyoshna K, Jaffar Sadiq MM. Assessment of quality of life in children with epilepsy in rural settings of South India: A cross sectional study. CHRISMED J Health Res [serial online] 2017 [cited 2017 Jul 21];4:110-6. Available from: http://www.cjhr.org/text.asp?2017/4/2/110/201980
| Introduction|| |
Childhood epilepsy is an elevated hazard for poor psychological outcomes and impacts on quality of life (QoL) of children but also has a great sway on family functioning., Children being the high-risk group and in crucial development period during which many cognitive and social skills have to be learned QoL is a significant health outcome to assess children with epilepsy.
Not many studies are done on the QoL of epileptic children from Indian sub-continent, especially in South Indian resource-limited settings. Moreover, up to our knowledge, this is the first published study on QoL of epileptic children, those who are in Anantapur district of Andhra Pradesh (a rural part of South India). Hence, our objective was framed to evaluate the QoL among children with epilepsy attending outpatient department in a rural secondary care referral hospital. The primary aim was to assess the QoL and to evaluate the influence of demographic and clinical characteristics on QoL of children with epilepsy.
| Materials and Methods|| |
This cross-sectional study was conducted at the Department of Pediatrics of a Rural secondary care referral hospital in Anantapur, Andhra Pradesh, South India from October 2013 to September 2014.
Children within the age group of 6–15 and who were diagnosed with epilepsy at least 6 months ago were included in the present study.
Children aged below 6 years and children requiring multiple anti-epileptic drugs (>2). Children with intellectual impairment in whom epilepsy is not the etiology. Further children who are not interested in participating were also excluded.
The ethical approval was obtained from the institutional review board. Informed written consent was obtained from the parents or caregivers of study subjects with clarification about study purpose and protocol before included into the study. Further study subjects were also informed about the study through oral communication to make the interview more efficient.
The data were collected through various procedures such as direct interview to patients or their parents or caretakers and also by referring to the patient case record. Demographics were acquired through semi-structured interview and the clinical profiles such as the age of onset, type of seizures, duration of therapy, seizure frequency, etiology of seizures, and history of early childhood seizures was obtained from case records. The QOL questionnaire was administered directly to the subjects by the trained research coordinator to collect data from the study subjects.
The research coordinator helped the study subjects for the completion of QoL questionnaire by clarifying their doubts and queries, to avoid the misunderstanding of the items.
The child version of TNO-AZL Children's QoL (TACQOL) was used to estimate the QoL. It is known as the Netherland organization for applied scientific research academic medical center (TNO-AZL) this child version of TACQOL is meant for children aging 6–15 years, which hardly takes 15 min for completion. It includes seven domains such as physical, motor, autonomy functioning, social, cognitive functioning, positive and negative emotions. It comprises a total of 56 questions or items with eight questions in each domain with three options, that is, never, occasionally and often. For the options occasionally and often, again provided with sub options fine, not so good, quite bad and bad. The score ranges from 0 to 4. The scores are given to the combination of answers from options and sub options where four indicates a higher QOL and zero indicates the least QoL.,
In the domains related to positive emotions and negative emotions, each item includes a single question with three options. The answers coded in such a way that zero indicates lower QOL and two indicate higher QOL.,
The questionnaire used in this study was translated into Telugu (regional language) by both medical and nonmedical experts. Further, the translated version of the questionnaire was retranslated into English to ensure the exact meaning of the original version. Cronbach alpha was calculated to ensure the internal consistency and reliability for the translated version of the questionnaire.
| Results|| |
A total of 60 subjects were approached for the present study, of them only 52 subjects were satisfied the inclusion criteria of the present study. Thus, they were enrolled and interviewed.
The baseline demographic characteristics of the study population are given in [Table 1]. The present study comprises more than 65% of male subjects. The age group was more or less equally distributed between 6–10 and 11–15 years. The largest portion of present study subjects was from the rural background and belongs to Class V socioeconomic class  (48%). Moreover, we are not able to find out or recruit not even a single subject under Class I and II socioeconomic status at the present study site. On an around 70% of the present study population has at least minimum level of the educational background, although still, 28.8% of subjects are not going to school. In addition, maternal education was found to be very less, only 17.3% was found to be literates.
The most common type of seizure was found to be generalized tonic-clonic seizure (51.8%). Further history of early childhood seizures was somewhat low (38.4%). The seizure episodes for the past 6 months was found to be positive for almost all the subjects, where 61.5% of subjects had one to two episodes of seizure and 7.6% of subjects had more than or equal to five episodes. Age of onset of seizure varies from months to years. The most frequent age of onset was found to be 6–10 years (48.07%). Most of our study subjects are suffering from epilepsy for the duration of a minimum of 1 year and some even up to 5 years (65.3%). We also found that certain study subjects are suffering from epilepsy for more than or equal to 5 years (17.3%). The precipitating factors such as fever, excitation, central nervous system infection, sleep deprivation, and head trauma. (The factors which induce or stimulate the episodes of seizure) was found to be positive for 63.4% of subjects. 92.3% of the study subjects are undergoing antiepileptic monotherapy and rest with dual antiepileptic therapy. The whole clinical characteristics are detailed in [Table 2].
The overall QoL questionnaire, reliability coefficient was 0.57. The relationship between patients' demographic characteristics and total QoL has been established in this study, which is shown in [Table 3]. Our study results imply that the gender variation and age of the study subjects does not found to have a strong relationship (P > 0.05) to the total QoL.
|Table 3: Relationships of patients' demographic characteristics with overall quality of life|
Click here to view
However, other characters such as maternal education and socioeconomic status were found to have a significant relationship, more interestingly we also found that educational status of the study subjects was found to have a significant relationship to overall QoL (P< 0.05).
Among the clinical characteristics tested, types of seizures, history of seizures, duration of therapy and duration of epilepsy were found to have a strong and significant relationship between total QoL. The details are depicted in [Table 4].
|Table 4: Relationships of patient's clinical characteristics with overall quality of life|
Click here to view
The association between various domains of QoL to demographic and clinical characteristics has been tested, and they were illustrated in [Table 5] and [Table 6], respectively. Same as like overall QoL QoL even the individual domains of QoL does not have any association for age difference and gender variations. The educational status shows a significant difference for only one domain (negative emotional), where it was found that school dropouts among the study subjects have a lesser QoL (8.6 ± 2.50) than those who had a secondary education (11.75 ± 2.52). The socioeconomic status has a significant association with the domains including motor and negative emotion, where Class III subjects were found to have higher mean scores for both motor and negative emotions (29.58 ± 4.42, 12.16 ± 2.58).
|Table 5: Relationship of patient's demographic details with domains of quality of life|
Click here to view
|Table 6: Relationship of patient's clinical characteristics with domains of quality of life|
Click here to view
The maternal education was found to have a high level of association in more than three individual domains. It shows much impact on the social, autonomy, motor, and physical domains of QoL of subjects. The mean scores of the subjects whose parents are literates for social, autonomy, motor, and physical domains were 26.77 ± 4.02, 27.80 ± 3.10, 30.88 ± 1.05, and 28.62 ± 3.38, respectively.
Type of seizures was found to have a great association in three individual domains namely physical, social, and cognition domains of QoL of subjects. Subjects with generalized tonic-clonic seizures have the lesser mean scores for physical, social, and cognition domains, respectively (24.77 ± 4.11, 22.64 ± 3.88, and 23.48 ± 4.09).
History of early childhood seizures was found to have a great association in only autonomy domain of QoL of subjects and Subjects with no history of early childhood seizures have good autonomy function with high mean scores (26.6 ± 3.82). Seizure frequency shows an impact on only one domain of QoL (cognition). The subjects with seizure frequency of more than or equal to five episodes in 6 months have lesser cognition mean scores (19.25 ± 2.63). Age of onset of seizures shows an impact on the social functioning of subjects. Subjects in whom seizure onset from 0–1 to 11–15 years have better mean scores for the social domain (25.7 ± 3.76, 25.5 ± 0.70, respectively). Duration of therapy and duration of epilepsy was found to affect the domains such as social and motor domains. In subjects who are on medications for more than 12 months were found to have lesser mean scores for the social domain (25.6 ± 3.92). In subjects who suffered seizures for <1 year have good mean scores in both motor and social domains. (30.2 ± 2.68, 27.6 ± 3.84, respectively). Precipitating factors and number of drugs (monotherapy or dual therapy) used affect neither the overall QoL nor the individual domains of QoL of the children.
| Discussion|| |
Our work aimed to assess the QoL and to study the relationship between demographic and clinical characteristics to the QoL of study subjects with epilepsy within the age group of 6–15 years. To the best of our knowledge, this is the first study published on the QoL of children with epilepsy residing in the rural part of Southern India.
Shetty et al. and Ohaeri et al. found a negative association between increasing age and QOL scores of bodily pains, emotional well-being, and memory and language domains., It was further confirmed by Taylor et al. and Nagarathnam et al. where they established the fact that negative or nil association to age group and QoL., These results are coinciding with our study results that we too did not find any significant association to any of the individual domains of QOL and also to the overall QOL.
In almost all of the chronic diseases, gender variation plays a major role in the QoL difference between males and females., Some of the already published literature reveals that females are found to have lesser QoL than males., Nabukenya et al. found that females are significantly associated with better HRQOL. Further studies also reported, no significant difference was found in the QoL with regard to gender.,, This wide variation in results might be due to differences in living conditions and regional difference like urban or rural which needs to be evaluated further. However, we did not find any kind of difference in the QoL between boys and girls.
Same as like other studies which are previously published in this area, we also established the fact that there is a significant association between levels of education and QoL. An interesting finding here is that educational level has a high-level impact on negative emotional feelings.
Better QoL is observed in the higher socioeconomic group., In the present investigation, we found a better QoL in individual domains like motor functions and negative emotions and also in the overall QoL among Class III level of socioeconomic status. This might be due to lack of study sample from higher level socioeconomic statuses such as Class I and II at the present study site; hence, it is a resource limited settings.
We can observe that maternal literacy was found to have a positive association with overall QoL and even to the various individual domains. These results are most commonly seen in plenty of literature which is reported from the Indian subcontinent.,,
The present study found that type of seizures has a significant association with overall QoL and affects physical, social, and cognition domains. Previous studies have the mixed opinions on this concept. Monir et al. explained that patients with generalized seizures had highly significant low scores of all functioning domains of HRQOL including overall QoL. Shetty et al. found that patients with simple partial seizures had the lowest overall QoL followed by GTCS and patients with CPS have the better overall QoL scores. Arya et al. also found that children with generalized seizures were scored better but compromised in attention. But Nadkarni et al. reported impaired QoL in children with focal seizures. We found that study subjects with GTCS have very low mean scores and followed by CPS and SPS. The subjects with unclassified seizures found to have a higher QoL, but it may not provide a valid point because only three subjects were identified and evaluated. In addition, we also found early childhood history of seizures affects the autonomy functioning and total QoL in subjects.
Seizure frequency was found to affect negatively on the cognitive domain and no association to the overall QoL of study subjects. It shows higher episodes of seizure will have a lower QoL score on cognitive domain. This is in contrast with the reports from other studies, for instance, Thomas et al. and Shakir and Al-Asadireported a negative association between seizure frequency to the overall QoL., Apart from the overall QoL, specific dimensions of QoL such as physical, emotional, social well-being, and psychological function also reported having a negative association with seizure frequency.,
Study subjects with seizures starting at a young age of 1–5 years have its impact on social domain. Duration of therapy was found to have an impact on QoL in a negative manner; similar kind of results was observed by us, which implies that drug-related problems such as adverse drug reactions, patient noncompliance, and drug interactions may be the contributors.,,
Duration of epilepsy is also a noteworthy contributor to QoL in this study, similar to other existing evidence., Precipitating factors are another contributor found to have an impact on QOL but unfortunately our results could not able to establish it.
In general concept, dual therapy or polytherapy is associated with lesser QoL in epilepsy., Whereas, our results failed to show the difference in the QoL between mono and dual therapy, which could be due to the age difference between the present study and the studies which were published previously.
| Conclusion|| |
The present study concluded that QoL also depends on demographic and clinical characteristics of patients. The lower level of QoL is the most common feature of present study subjects. Thus, it is suggested that QoL must be assessed at frequent intervals of time, to each and every individual patient to provide better patient care and monitoring. A Further QoL studies and interventional programs should be conducted to improve the QoL and to individualize patient therapy.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Malhi P, Singhi P. Correlates of quality of life with epilepsy. Indian J Pediatr 2005;72:131-5.
Taylor J, Jacoby A, Baker GA, Marson AG. Self-reported and parent-reported quality of life of children and adolescents with new-onset epilepsy. Epilepsia 2011;52:1489-98.
Arya V, Gehlawat VK, Kaushik JS, Gathwala G. Assessment of parent reported quality of life in children with epilepsy from Northern India: A cross-sectional study. J Pediatr Neurosci 2014;9:17-20.
] [Full text]
Vogels T, Verrips GH, Verloove-Vanhorick SP, Fekkes M, Kamphuis RP, Koopman HM, et al
. Measuring health-related quality of life in children: The development of the TACQOL parent form. Qual Life Res 1998;7:457-65.
Fekkes M, Kamphuis RP, Ottenkamp J, Verrips E, Vogels T, Kamphuis M, et al
. Health-related quality of life in young adults with minor congenital heart disease. Psychol Health 2001;16:239-50.
Dudala SR, Reddy KA, Prabhu GR. Prasad's socio-economic status classification – An update for 2014. Int J Res Health Sci 2014;2:875-8.
Shetty PH, Naik RK, Saroja A, Punith K. Quality of life in patients with epilepsy in India. J Neurosci Rural Pract 2011;2:33-8.
] [Full text]
Ohaeri JU, Awadalla AW, Farah AA. Quality of life in people with epilepsy and their family caregivers. An Arab experience using the short version of the World Health Organization quality of life instrument. Saudi Med J 2009;30:1328-35.
Nagarathnam M, Vengamma B, Latheef SA, Reddemma K. Assessment of quality of life in epilepsy in Andhra Pradesh. Neurol Asia 2014;19:249-55.
Vigneshwaran E, Reddy YP, Devanna N. Enhancing Quality of Life and Medication Adherence Through Patient Education and Counseling among HIV/AIDS Patients in Resource Limited Settings. Br J Pharm Res 2013;3:485-95.
Zandieh F, Moin M, Movahedi M. Assessment of quality of life in Iranian asthmatic children, young adults and their caregivers. Iran J Allergy Asthma Immunol 2006;5:79-83.
Ashwin M, Rakesh P, Pricilla RA, Manjunath K, Jacob K, Prasad J. Determinants of quality of life among people with epilepsy attending a secondary care rural hospital in South India. J Neurosci Rural Pract 2013;4 Suppl 1:S62-6.
Nabukenya AM, Matovu JK, Wabwire-Mangen F, Wanyenze RK, Makumbi F. Health-related quality of life in epilepsy patients receiving anti-epileptic drugs at National Referral Hospitals in Uganda: A cross-sectional study. Health Qual Life Outcomes 2014;12:49.
Nadkarni J, Jain A, Dwivedi R. Quality of life in children with epilepsy. Ann Indian Acad Neurol 2011;14:279-82.
] [Full text]
Shakir M, Al-Asadi JN. Quality of life and its determinants in people with epilepsy in basrah, iraq. Sultan Qaboos Univ Med J 2012;12:449-57.
Devinsky O, Westbrook L, Cramer J, Glassman M, Perrine K, Camfield C. Risk factors for poor health-related quality of life in adolescents with epilepsy. Epilepsia 1999;40:1715-20.
Aggarwal A, Datta V, Thakur LC. Quality of life in children with epilepsy. Indian Pediatr 2011;48:893-6.
Monir ZM, EL-Alameey IR, Eltahlawy E. Health related quality of life of children with epilepsy in Egypt. J Arab Soc Med Res 2013;8:53. [Full text]
Thomas SV, Koshy S, Nair CR, Sarma SP. Frequent seizures and polytherapy can impair quality of life in persons with epilepsy. Neurol India 2005;53:46-50.
] [Full text]
Mehta S, Tyagi A, Tripathi R, Kumar M. Study of inter-relationship of depression, seizure frequency and quality of life of people with epilepsy in India. Ment Illn 2014;6:5169.
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6]