ABSTRACT
Objective: To determine the validity and reliability of the Chinese parent proxy and child self-report health related quality of life measure for children with epilepsy (CHEQOL-25) in Malaysia. Methods: Face and content validity of the Chinese parent proxy and child self-report CHEQOL-25 was verified by an expert panel, and piloted in five children with epilepsy (CWE). The Chinese CHEQOL-25 was then administered to 40 parent proxies and their CWE (aged 8-18 years), from two tertiary hospitals, at baseline and 2 weeks later. Results: Forty parents and their CWE were recruited. Cronbach’s alpha for each subscale ranged from 0.56-0.83. At test-retest, the interclass correlation for all items ranged from 0.68-0.97. Items 8 and 25 were removed as their corrected item-total correlation values were <0.3. Epilepsy severity, the number of anti-epileptic drugs taken daily, number of close friends and number of time spent with friends were found to be associated with the parent proxy CHEQOL-25 score. Duration of epilepsy, child’s cognitive ability, number of close friends and number of time spent with friends were associated with child self-report CHEQOL-25. The parent proxy and the child selfreport showed high to fair agreement on the “interpersonal/social” [Intraclass correlation coefficient (ICC)=0.670, p<0.001] and “epilepsy secrecy” subscale (ICC=0.417, p=0.048). Conclusions: Our small study found that the Chinese CHEQOL-25 was a valid and reliable questionnaire to assess the quality of life of children with epilepsy from the parent prospective and child self-report when items 8 and 25 were removed.
Subject(s)
EpilepsyABSTRACT
Childhood brain injury is an important and complicated public health issue worldwide. Extensive work has been done in this field. This review highlights issues that are frequently misinterpreted or overlooked in the management of childhood brain injury. The incidence of traumatic brain injury is higher than non-traumatic brain injury. However it is frequently over-reported due to various confounding factors. In ascertaining the severity of injury, assessment of brainstem functions is important and should be included in routine clinical assessment. Most rehabilitative efforts are usually aimed at improving the physical outcome. However, non-physical sequelae are also common and may be more disabling with significant impact on the learning and functioning of the child. These areas, which include depression, cognitive functioning and health-related quality of life of children, should not be overlooked in the management of childhood brain injury. In addition to caregiver’s stress, family dynamic and siblings’ well-being also play a crucial role in the recovery process of the child. By highlighting the frequently missed issues in the management of childhood brain injury, it is hoped that clinicians and professionals could pay more attention to these issues and provide a comprehensive medical care for the patients and their families.
Subject(s)
Brain InjuriesABSTRACT
Measuring QOL is a field that is gaining interest among researchers worldwide. This is a prospective, descriptive study that aimed to look at the impact of health-related quality of life (HRQL) of cerebral palsy in the lives of patients and their families. Methods: Patients attending the Paediatric Rehabilitation Clinic at University of Malaya Medical Centre were interviewed prospectively using the Lifestyle Assessment Questionnaire – Cerebral Palsy. Results: A total of 27 patients were interviewed. Three (11.1%) patients reported severely affected quality of life. Seven (25.9%) patients reported moderately affected quality of life and 10 (37%) reported mildly affected quality of life. The worst score of 76 were reported in 2 patients. The best score of 11 was reported in one patient. Conclusion: The impairment and disability due to cerebral palsy is likely to be similar in both developing and developed countries. However, the quality and type of care received by patients are likely to determine the resultant handicap and the implication on the quality of life