Validation of the Sri Lankan Health-Related Quality-of-Life Index for pre-schoolers (SLHQL-P) and school age (SLHQL-S) children with epilepsy.

INTRODUCTION: Health-related quality of life (HRQL) in children and adolescents remains an underappreciated problem in Asian region, due to lack of culturally sound HRQL measures. This paper describes the validation process of two age-specific, proxy-rated HRQL indexes namely Sri Lankan Health-Related Quality-of-Life Index for preschoolers (SLHQL-P) and school age children (SLHQL-S) with epilepsy. METHODS: Primary caregivers of children and adolescents with epilepsy aged 1-18 years from three districts in Sri Lanka were invited to fill the SLHQL-P (for 1-5 years) and SLHQLS (for 6-18 years). It was re-administered to a subset of consenting primary caregivers after an interval of two weeks. Scientific soundness of SLHQL-P and SLHQL-S were established based on causal indicator model. RESULTS: Total of 98 and 169 primary caregivers responded to SLHQL-P, SLHQL-S respectively. Final questionnaires of SLHQL-P and SLHQL-S consists of 26, 57 items respectively in three multi-item domains measuring the child's physical functioning (6, 9 items), psychological functioning (6, 31 items) and social functioning (14, 17 items) with higher scores reflecting better HRQL. Construct validity was established by several methods including strong relationship with seizure severity. Good test-retest reliability was also demonstrated for both SLHQL-P and SLHQL-S (r = 0.77, 0.938) CONCLUSIONS: Both SLHQL-P and SLHQL-S are feasible, reliable and valid instruments to measure HRQL in children and adolescents with epilepsy in clinical as well as research settings in Sri Lanka.

Quality of life at 6 years in children treated for West syndrome with hormonal therapy.

INTRODUCTION: West syndrome is a severe epileptic encephalopathy occurring in infancy. Majority of affected children suffer from poor epilepsy control in later life and are dependent on care-givers for daily living. There is no previous study evaluating the Quality of Life (QOL) in children suffered from WS. METHOD: A prospective cohort study was performed at six years in a group of children with West syndrome, followed up in the Sri Lanka Infantile Spasm Study (SLISS). The quality of life was evaluated using Sri Lankan Health-Related Quality-of-Life Index for school children (SLHRQ-S), an age-specific, primary caregiver proxy-rated, validated questionnaire for Sri Lankan children with epilepsy. Information on epilepsy, medication, and daily activities was obtained from the parents. RESULTS: Fifty parents of initial 97 children treated for WS participated. The majority had no ongoing epilepsy (56%) at time of evaluation. The mean QOL was 67.22 (SD 15.68). Mean QOL scores for individual domains showed that physical domain was the worst affected (58.51 (SD = 22.11)). Psychological and social function domains were 68.73 (SD = 17.74) and 75.2 (SD = 14.87), respectively. Male sex (0.02), using multiple anti-seizure medications (0.00) and lower ILAE epilepsy control scale (0.02) were significantly associated with a poor quality of life. Age at onset, delay in treatment, and early spasm control were among the factors that did not influence quality of life. CONCLUSION: Despite having control of their epilepsy in the majority, these children suffered from poor quality of life. The greater impact on the physical domain possibly is related to the effect of underlying pathologies.

Age, sex and ethnic differentials in the prevalence and control of epilepsy among Sri Lankan children: a population-based study.

OBJECTIVE: To estimate the prevalence of childhood epilepsy in Sri Lanka by different age groups (0-5, 6-10 and 11-16 years), sex and ethnicity, and to describe the types and outcomes of epilepsy. DESIGN AND PATIENTS: A population-based, cross-sectional study was conducted in the district considered to be ethnically most balanced in Sri Lanka. A door-to-door survey was performed in the 0-5 year age group (60 geographically defined areas as clusters; 19 children per cluster), and a school-based survey in the 6-16 year age group (150 classes as clusters; 25 children per cluster). The screened children with epilepsy were reviewed individually for confirmation of the diagnosis of epilepsy, typing of the underlying epilepsy syndrome and assessment of control. The same group of children were re-evaluated 1 year later to reconfirm the syndromic diagnosis and to assess the stability of control of epilepsy. RESULTS: The overall prevalence of childhood epilepsy was 5.7 per 10 000 children aged 0-16 years (95% CI: 38 to 87). It was higher with younger ages (73.4 per 10 000 children aged 0-5 years; 55.1 per 10 000 children aged 6-10 years and 50.4 per 10 000 children aged 11-16 years). A male dominance was noted in both age groups. In each age group, the prevalence was highest in children of Sinhalese ethnicity. Symptomatic focal epilepsy was the single most common group of epilepsy in both age groups. Majority of children remained well controlled on medications. CONCLUSION: The findings indicate a relatively high burden of epilepsy among children in Sri Lanka, however, these were comparable to the burden of disease reported from other countries in the region.

Development of outcome criteria to measure effectiveness of antiepileptic therapy in children.

PURPOSE: Clinical trials of antiepileptic drugs frequently measure outcomes of seizure control, which demonstrate efficacy. Yet, functional status, quality of life, and long-term treatment effects reflecting effectiveness are scarcely assessed. We sought to use a consensus method to help identify which outcome criteria key stakeholders consider should be used to measure effectiveness in trials of antiepileptic treatments for children. METHOD: A two-round Delphi survey was used; parents of children with epilepsy and local, international experts comprising academics and clinicians participated in the survey. In the first round, 32 experts, 50 parents, and 15 children with epilepsy aged >13years suggested outcomes that they considered important in determining effectiveness of antiepileptic therapy in children, separately for preschool and school age. In the second round, 29 experts and 42 parents scored the importance of outcomes from the list suggested by at least 10% of round 1 respondents and also proposed five most important outcomes. RESULTS: Complete seizure freedom (67%), seizure frequency (48%), ability to perform normal day-to-day activities (45%), and quality of life (40%) were identified as the most important outcomes of antiepileptic therapy in children of both age groups. Additionally, effect on developmental milestones (47%) and child's compliance to treatment regimen (39%) were identified as most important in preschool age group and school performance (49%); adverse effects (39%) were identified as most important in school age group. CONCLUSION: For the first time, this study has identified outcome priorities regarding antiepileptic treatment in children based on the key stakeholders' perspectives. It could be used as a provisional list of outcomes for inclusion in a core outcome set for children with epilepsy.

Parental concerns towards children and adolescents with epilepsy in Sri Lanka--Qualitative study.

PURPOSE: Social, cultural, psychological and many other factors significantly impact the lives of epileptic children and their families. Parental concerns towards their children are less known in south Asian children with epilepsy. We aimed to identify the parental concerns regarding their children and adolescents with epilepsy in Sri Lanka. METHODS: We carried out qualitative study in 3 districts of Sri Lanka, comprising 16 in-depth interviews with parents of children and adolescents with epilepsy and 3 focus group discussions with primary caregivers of epileptic children and key informants (schoolteachers, public health staffs). Content analysis of the interview data was performed. RESULTS: Parental concerns were spread among seven themes that emerged from the content analysis. These concerns were about the child's functioning in areas such as physical, behavioural, psychological and social, education, concerns related to anti-epileptic therapy and epilepsy as a disease. Parents were more concerned about their child's safety, educational achievements and future prospects in terms of employment and marriage. Unpredictability of seizures, fear of stigma and unawareness of epilepsy were the main reasons voiced by the parents for having such concerns. Increased concern and perception of vulnerability was seen among parents whose children had epilepsy and co-morbid illness. CONCLUSIONS: Parental concerns towards their children and adolescents show a multidimensional construct. Unpredictability of seizures, fear of stigma and unawareness of epilepsy were identified as key influential factors in moulding the parental concerns.