Validation of a New Quality of Life Measure for Children with Epilepsy

Sabaz, Mark; Cairns, David; Lawson, John A.; Nheu, Natalina; Bleasel, Andrew; Bye, Ann

doi:10.1111/j.1528-1157.2000.tb00240.x

Cited by 184 publications

(202 citation statements)

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“…23,24 The five main QOLCE domains include physical activity (physical restrictions and energy/ fatigue), cognition (attention/concentration, memory,…”

Section: Methodsmentioning

confidence: 99%

Correlates of health‐related quality of life in children with drug resistant epilepsy

et al. 2016

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SUMMARYObjective: Health-related quality of life (HRQL) is compromised in children with epilepsy. The current study aimed to identify correlates of HRQL in children with drug resistant epilepsy. Methods: Data came from 115 children enrolled in the Impact of Pediatric Epilepsy Surgery on Health-Related Quality of Life Study (PEPSQOL), a multicenter prospective cohort study. Individual, clinical, and family factors were evaluated. HRQL was measured using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE), a parent-rated epilepsy-specific instrument, with composite scores ranging from 0 to 100. A series of univariable linear regression analyses were conducted to identify significant associations with HRQL, followed by a multivariable regression analysis. Results: Children had a mean age of 11.85 AE 3.81 years and 65 (56.5%) were male. The mean composite QOLCE score was 60.18 AE 16.69. Child age, sex, age at seizure onset, duration of epilepsy, caregiver age, caregiver education, and income were not significantly associated with HRQL. Univariable regression analyses revealed that a higher number of anti-seizure medications (p = 0.020), lower IQ (p = 0.002), greater seizure frequency (p = 0.048), caregiver unemployment (p = 0.010), higher caregiver depressive and anxiety symptoms (p < 0.001 for both), poorer family adaptation, fewer family resources, and a greater number of family demands (p < 0.001 for all) were associated with lower HRQL. Multivariable regression analysis showed that lower child IQ (b = 0.20, p = 0.004), fewer family resources (b = 0.43, p = 0.012), and caregiver unemployment (b = 6.53, p = 0.018) were associated with diminished HRQL in children. Significance: The results emphasize the importance of child cognition and family variables in the HRQL of children with drug-resistant epilepsy. The findings speak to the importance of offering comprehensive care to children and their families to address the nonmedical features that impact on HRQL. KEY WORDS: Pediatric epilepsy, Health-related quality of life, Family.Epilepsy in children can often have catastrophic consequences on multiple domains of health-related quality of life (HRQL). HRQL is defined by the World Health Organization (WHO) as a broad, multidimensional construct including not only the disease state but also the person's physical, psychological, and social well-being. This term refers to the impact, both subjective and objective, of dysfunction associated with illness or injury, and treatment. FULL-LENGTH ORIGINAL RESEARCHsubstantial body of literature suggests that HRQL is impaired in children with epilepsy, 2 who have higher rates of behavioral, cognitive, emotional, social, and academic problems compared to healthy children or children with other chronic health conditions. [3][4][5][6][7][8][9][10] In light of these findings, a predominant objective of the management of pediatric epilepsy is to both improve and prevent potential declines in patient HRQL.11 Correspondingly, a comprehensive understanding of the factors that...

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“…23,24 The five main QOLCE domains include physical activity (physical restrictions and energy/ fatigue), cognition (attention/concentration, memory,…”

Section: Methodsmentioning

confidence: 99%

Correlates of health‐related quality of life in children with drug resistant epilepsy

et al. 2016

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“…These findings demonstrate a high rate of behavioral disturbance in children with both epilepsy and low IQ. This second study also explored the children's quality of life by using the Quality of Life in Childhood Epilepsy Questionnaire (Sabaz et al 2000) and showed that the sample with both low IQ and epilepsy had poorer health-related quality of life than the sample with normal IQ and epilepsy.No studies were found that addressed the effect of sex of children with both epilepsy and low IQ. Studies of behavior and mental health problems in youths with epilepsy that explored sex differences reported conflicting results.…”

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confidence: 99%

Behavior and mental health problems in children with epilepsy and low IQ

Buelow

Austin

Perkins

et al. 2003

Dev Med Child Neurol

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The purpose of this cross-sectional descriptive study was to describe the particular types of behavioral problems, self-concept, and symptoms of depression experienced by children with both low IQ and epilepsy. Three groups of children (83 males, 81 females; mean age 11 years 10 months, SD 1 year 10 months; age range 9 to 14 years) with epilepsy were compared: (Group 1) Low IQ (<85), n=48, 25 males, 23 females; (Group 2) Middle IQ (85 to 100), n=58, 24 males, 34 females; and (Group 3) High IQ (>100), n=58, 34 males, 24 females. The Child Behavior Checklist, Piers-Harris SelfConcept Scale, and Children's Depression Inventory were used to measure behavior, self-concept, and depression respectively. Results indicated that children in the Low IQ group had the most behavioral and mental health problems. Additionally, there were IQ group-by-sex interactions, with females in the Low IQ group being at the highest risk for poor self-concept. Findings suggest that children with both epilepsy and low IQ should be carefully assessed for mental health problems in the clinical setting.Children with chronic epilepsy and children with a low IQ have each been shown to be at increased risk for quality of life problems. Research studies focusing on children with epilepsy and normal IQ, or on children with mental retardation * who do not have epilepsy, show that mental retardation and epilepsy are each independently related to poor quality of life and psychosocial problems (Austin et al. 1994(Austin et al. ,1996Lewis et al. 2000;Sabaz et al. 2001). Because each disorder is associated with such problems it is probable that children with both disorders will experience even greater problems than those with just one of the disorders. Among children with epilepsy, 28 to 38% have some degree of mental retardation (Steffenburg et al. 1996). In addition, there is an unexpectedly high number of children with both epilepsy and low IQ (70 *Correspondence to second author at 1111 Middle Drive, NU 492, Indiana University School of Nursing, Indianapolis, Indiana 46202-5107, USA., joausti@iupui.edu. * UK usage: learning disability. NIH Public Access NIH-PA Author ManuscriptNIH-PA Author Manuscript NIH-PA Author Manuscript to 80) who do not fit the DSM-IV (American Psychiatric Association 1994) criteria for mental retardation (Dodson 2001). On average, the IQ in children with epilepsy is 10 points lower than that of their healthy, age-matched peers (Dodson 2001). Despite the strong relationship between epilepsy and low IQ, only a few studies have addressed the psychosocial and mental health problems of this population.Epidemiological studies of children with mental retardation and epilepsy have established that there are high rates of psychopathology. Rates of psychiatric disorders range from 50 to 59% in children with both epilepsy and mental retardation (Rutter 1989, Steffenburg et al. 1996. The most common psychiatric issues include psychoses, depression attention-deficithyperactivity disorder, socialization problems, aberrant behavior...

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“…The questionnaire was developed from the modification of the original QOLCE [17], which provided an epilepsyspecific scale for the evaluation of HRQOL in children 4-18 years of age. We selected total 47 items from original scales, which were validated through comparison with the original QOLCE and already standardized Korean childhood behavior checklist.…”

Section: The Korean Quality Of Life In Childhood Epilepsy (K-qolce) Qmentioning

confidence: 99%