Disability due to restrictions in childhood epilepsy

Carpay, Hans A.; Vermeulen, Jan; Stroink, Hans; Brouwer, Oebele F.; Peters, A. C. B.; Donselaar, Cees A. van; Aldenkamp, Albert P.; Arts, W. F. M.

doi:10.1111/j.1469-8749.1997.tb07480.x

Cited by 79 publications

(36 citation statements)

References 12 publications

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“…Interestingly, Norrby et al (24) found that children with controlled epilepsy and no obvious neurodeficits did not differ from aged-matched controls when describing themselves using 39 bipolar adjectives and a VAS of well-being. Austin et al (25), Hoare and Kerley (26), and Carpay et al (27) addressed selected concerns of children with epilepsy, such as relationships with siblings, stigma, self-esteem, and restrictions.…”

Section: Discussionmentioning

confidence: 99%

Impact of Pediatric Epilepsy on the Family: A New Scale for Clinical and Research Use

2001

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Summary:Purpose: There is no brief, global instrument available that specifically measures the psychosocial impact of pediatric epilepsy on the family. An 11-item scale was created for parents' use to evaluate the influence of epilepsy on the major aspects of their family and child's life. This will be a helpful tool both in the clinical setting and as an outcome measure for research studies.Methods: Mothers rated their child's quality of life on a visual analogue scale (1-6) and completed the Impact of Pediatric Epilepsy Scale (IPES), which assesses the impact on academic achievement, participation in activities, health, relationships with family and with peers and siblings, social activities, self-esteem, and the caregiver's hopes for their child's future adapted from the scale developed by Jacoby. External validation was determined by comparison of the IPES with physicians' reports of the characteristics of the child's epilepsy and neurological limitations and parents' ratings on the Family Environment Scale or Parenting Stress Index. In addition, each school-aged child completed the Piers-Harris Children's SelfConcept Scale, Brother-Sister Questionnaire, and Loneliness Scale. Teachers of children completed the Academic Performance Rating Scale. Seven days later, retest reliability of the IPES was evaluated.Results: Ninety-seven mothers of children aged 2-16 years completed the IPES and the appropriate family and age-related questionnaires. Internal validation on the IPES yielded a Cronbach's a for the scale of 0.92. A significant Pearson's correlation indicated that total scores were consistent over time (r ‫ס‬ 0.81). Spearman's correlations for the individual items were also significant, ranging from 0.48 to 0.78. Significant Spearman's correlations also indicated that quality of life was negatively related to impact on each of the 11 items of psychosocial function. Children with IPES scores above the median differed in some psychosocial aspects from those who scored below. Their parents were more stressed, their siblings were more respectful, they had lower self-esteem, and they experienced more emotional problems. Total impact was also significantly related to seizure frequency, total number of medications taken, number of visits to a physician in the previous year, and number of nights spent in hospital for neurological reasons. Conclusions:The IPES is an accurate, acceptable, and quick measurement tool that reflects the way in which childhood epilepsy has an impact on the child and on family life. It may be helpful in routine clinical care and may be useful in the research setting to find ways to improve the lives of children with epilepsy. Key Words: Pediatric-EpilepsyQuality of life.Epilepsy is a frequent chronic illness in children. The psychosocial impact of epilepsy on the child and family's everyday life depends on several factors, including (a) the severity of the epilepsy; (b) the complexity of the clinical management; (c) the meaning of the illness to the child, family, and society as a whole; ...

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Section: Discussionmentioning

confidence: 99%

Impact of Pediatric Epilepsy on the Family: A New Scale for Clinical and Research Use

2001

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“…In Spain, Herranz and Casas [18] (see also Casas-Fernàndez [19]) constructed an 8-item scale asking the parents to evaluate their child with epilepsy. Carpay et al [20,21] proposed scales to be completed by parents of CWE measuring seizures' severity and side effects of anti-epileptic drugs [20] and a 10-item scale evaluating epilepsy-related restrictions in a child's daily activities (for an application of the restrictions scale, see Van Empelen et al [22]). Sabaz et al [23,24] proposed a 91-item measure of QoL for CWE.…”

Section: Introductionmentioning

confidence: 99%

Quality of life in children with epilepsy and cognitive impairment: A review and a pilot study

Soria

Sabbagh

Escolano

et al. 2007

Developmental Neurorehabilitation

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Various methods have recently been proposed to assess the physical, psychological or social dimensions of quality of life (QoL) in children with epilepsy (CwE) and their families. Some methods are based exclusively on parental report and others emphasize the importance of an interview with the patient himself. In children with epilepsy and severe cognitive deficit only parental report is possible in practice; however, some parental based methods to evaluate QoL in CwE have excluded children with cognitive deficit. The present pilot study explores which items are suitable for a parental-based QoL evaluation in CwE and special educational needs, and the most frequently reported parental concerns in this special population of children.

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“…Consequently, several scales have been developed to investigate quality of life (QOL) in children and adolescents with this condition (Breau, Camfield, Camfield, & Breau, 2008;Camfield, Breau, & Camfield, 2001Carpay et al, 1997;Cramer et al, 1999;De Souza, Da Mota Gomes, & Da Costa Fontelelle, 2005;Herranz & Casas, 1996;Hoare & Russell, 1995;McEwan, Espie, & Metcalfe, 2004;Montanaro, Battistella, Boniver, & Galeone, 2004;Ronen, Streiner, Rosenbaum, & Canadian Pediatric Epilepsy Network, 2003;Townshend et al, 2008). QOL was defined by the World Health Organization (WHO) in 1993 as "an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns" (p. 153).…”

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confidence: 99%

Behavioral problems, cognitive difficulties and quality of life in children with epilepsy: An analysis of parental concerns

Soria

Escolano

Sabbagh

et al. 2012

Child Neuropsychology

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In cognitively impaired or young children with epilepsy, only proxy-report can be used for the assessment of Quality of Life (QOL) and behavior. The present study aims to propose proxy QOL tools applicable in all children with epilepsy and to examine the impact of epilepsy characteristics (e.g., age of onset of epilepsy, epilepsy syndrome) and child's age and situation (in mainstream school or in special institution). We studied 219 children with various types of epilepsy with and without cognitive impairment. The study adapted published QOL scales and used a new parental QOL questionnaire. Selected items concerned 6 "domains" of QOL: global QOL, illness impact, depression/anxiety, hyperactivity/disrupting behavior, sociability, and parental QOL. School situation, epilepsy syndrome, and age were significantly and differentially related to the QOL domains. The proposed QOL tools are applicable to all children with epilepsy independently of comorbid conditions and can be used in a clinical context and for research studies of QOL in children with epilepsy. Epilepsy syndromes in children and their associated factors have a crucial impact on parental concerns and QOL.

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Disability due to restrictions in childhood epilepsy

Cited by 79 publications

References 12 publications

Impact of Pediatric Epilepsy on the Family: A New Scale for Clinical and Research Use

Impact of Pediatric Epilepsy on the Family: A New Scale for Clinical and Research Use

Quality of life in children with epilepsy and cognitive impairment: A review and a pilot study

Behavioral problems, cognitive difficulties and quality of life in children with epilepsy: An analysis of parental concerns

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