Assessment of parent reported quality of life in children with epilepsy from Northern India: A cross-sectional study

Abstract

Objective:The objective of the following study is to assess parent reported quality of life (QOL) in children with epilepsy and to assess the demographic and clinical factors, which influence the QOL in children with epilepsy.Study Participants:We consecutively enrolled 40 children aged from 2 years to 14 years with active epilepsy who had undergone a comprehensive evaluation for epilepsy.Materials and Methods:Parents were enquired on baseline demographic variables including age, gender, socio-economic status and parental education. Clinical details of epilepsy including the type of epilepsy, seizure frequency were assessed. QOL was evaluated with the parent reported quality of life in childhood epilepsy (QOLCE) questionnaire.Results:A total of 40 children were enrolled of which 55% (22/40) were males and the mean (standard deviation [SD]) age of enrolled children was 10.6 (2.7) years. The majority came from a rural background (80% [32/40]), were from lower (15 [37.5%]) or middle (23 [57.5%]) socio-economic status, with almost half (22 [55%]) of mothers being educated until high school. The overall mean (SD) QOL score was 66.7 (4.83). Lowest mean (SD) scores were observed in self-esteem (45.2 [7.3]) subscale and subscales with higher QOL scores included control/helplessness (82.1 [8.51]), anxiety (81.6 [12.55]) and social stigma (95.0 [11.6]). Parental education, socio-economic status (P = 0.96), frequency of seizure (P = 0.34) or type of epilepsy (P = 0.92) did not significantly affect the overall QOL among children with epilepsy.Conclusion:Our study concluded that overall QOL was compromised in Indian children with epilepsy. Demographic factors like parental education, socio-economic status and clinical factors like frequency of seizure or type of seizure did not significantly affect the QOL of epileptic children.

Predictors of health related quality of life in childhood epilepsy and comparison with healthy children: findings from an Indian study

“…These results are in concordance with Monir et al (5) from Egypt, who reported that epileptic children with generalized seizures have significantly lower HRQOL than those with partial seizures. However, an Indian study by Arya et al (31) found no significant difference between types of seizures and HRQOL scores. Another study from India, by Aggarwal et al (28), reported that children with partial seizures are significantly compromised in total HRQOL than generalized seizures.…”

“…This is in contrast to the studies conducted by Aggarwal et al (28) and Nadkarni et al (30), where no significant sex difference was observed in HRQOL. However, a study conducted by Arya et al (31) observed that girls outperformed in physical, emotional, social, and psychosocial domains of HRQOL. This might be due to the small sample size (n = 102) and use of a different HRQOL assessment measure in that study.…”

Socio‐economic status and quality of life in children with chronic disease: A systematic review

“…The most frequently used generic QoL instruments were the Pediatric Quality of Life Inventory (PedsQL) or an adapted version of the PedsQL (six studies), 12,15,20,21,35,36 the Short-form 36 (SF-36; two studies), 14,34 the Impact of Childhood Illness scale (two studies), 25,28 the Child Health Questionnaire-Parent Form (one study), 26 the DISAB-KIDS chronic generic model (one study) 31 and the KINDL questionnaire (one study). 27 Disease-specific questionnaires included the Paediatric Asthma Quality of Life Questionnaire (six studies), [6][7][8][9][10][11] the Quality of Life in Children with Epilepsy (QOLCE) questionnaire (five studies), 16,17,24,26,29 the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48; three studies), 18,19,27 the PedsQL T1DM module (two studies), 32,33 the Diabetes Quality of Life for Youth short form (one study), 30 the Impact of Epilepsy Schedule (one study) 22 and the Epilepsy and Children questionnaire (one study). 23 Single-domain SES factors included household income (11 studies), [6][7][8]11,[14][15][16]22,26,29,…”

“…27 Disease-specific questionnaires included the Paediatric Asthma Quality of Life Questionnaire (six studies), [6][7][8][9][10][11] the Quality of Life in Children with Epilepsy (QOLCE) questionnaire (five studies), 16,17,24,26,29 the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48; three studies), 18,19,27 the PedsQL T1DM module (two studies), 32,33 the Diabetes Quality of Life for Youth short form (one study), 30 the Impact of Epilepsy Schedule (one study) 22 and the Epilepsy and Children questionnaire (one study). 23 Single-domain SES factors included household income (11 studies), [6][7][8]11,[14][15][16]22,26,29,30 mother's education (15 studies), 6,[9][10][11][12]16,17,21,22,24,25,29,31,34,36 father's education (11 studies),…”

“…23 Single-domain SES factors included household income (11 studies), [6][7][8]11,[14][15][16]22,26,29,30 mother's education (15 studies), 6,[9][10][11][12]16,17,21,22,24,25,29,31,34,36 father's education (11 studies), 6,10,11,16,17,22,24,25,29,34,36 highest level of parent's educational attainment (two studies) 26,33 and the level of health insurance (one study). 33 A total of 11 studies utilised composite measures, including the two-and four-factor Hollingshead indices (a combined measure of education and occupation; five studies), 19,20,28,32,35 the criteria for socio-economic stratification in Brazil (two studies), 6,8 the revised Kupp...…”