Dejan Stevanovic

Health-related quality of life in adolescents with well-controlled epilepsy

OBJECTIVE The purpose of the work described in this article was to evaluate the health-related quality of life (HRQOL) of adolescents with well-controlled epilepsy. METHODS The Quality of Life in Epilepsy Inventory for Adolescents 48 (QOLIE-AD-48) was completed by 71 subjects with uncomplicated epilepsy who had been seizure-free for more than a year. HRQOL was measured in eight domains: Health Perception, Epilepsy Impact, Memory/Concentration, Physical Functioning, Stigma, Social Support, School Behavior, and Attitudes toward Epilepsy. In addition, antiepileptic drug (AED) therapy and concern over seizures recurring were analyzed in relation to HRQOL. RESULTS The mean HRQOL total scores were 83.9 for boys and 83.06 for girls. The highest scores were observed in the Physical Functioning and School Behavior domains; the lowest in the Attitudes toward Epilepsy domain. Girls reported more positive perceptions in the Stigma and Social Support domains. Greater intake of AEDs and concern over seizures recurring accounted for poorer HRQOL. CONCLUSIONS Adolescents with favorable seizure control evaluated their HRQOL as satisfactory. However, they perceived their best adjustment to epilepsy to be in the Physical Functioning and School Behavior domains. AED intake and concern over seizures recurring were predictors of HRQOL in this group.

Health-related quality of life, anxiety, and depressive symptoms in children with primary immunodeficiencies

Introduction The aims of this study were to evaluate levels of health-related quality of life (HRQOL) and the presence of anxiety and depressive symptoms in children with primary immunodeficiency disease (PID) in Serbia. Materials and methods Self- and parent-rated data from 25 children with PID were available. As controls, data from 50 children with juvenile idiopathic arthritis (JIA) and 89 healthy children were included. The Pediatric Quality of Life Inventory was used for HRQOL assessments. Anxiety symptoms were identified using the Screen for Child Anxiety-Related Emotional Disorders questionnaire, while depressive symptoms were identified using the Mood and Feeling Questionnaire. Results Children with PID had significantly lower Pediatric Quality of Life Inventory total scores compared to children with JIA and healthy children as child-rated (P=0.02) and parent-rated (P<0.001). Specifically, they had significantly lowered emotional functioning compared to children with JIA, and social functioning compared to both children with JIA and healthy children. School functioning was significantly lower among children with PID (parent-rated only). By parent-rated responses, six (24%) out of 25 children with PID had significant anxiety symptoms, while five (20%) children had significant depressive symptoms, which was statistically higher than among children with JIA and healthy controls (P=0.05). Conclusion HRQOL could be significantly compromised in children with PID, particularly across such psychosocial domains as emotional, social, and school. These children were also found to be at an increased risk for suffering significant anxiety and depressive symptoms.

The Serbian QOLIE-AD-48 : translation, cultural adaptation, and preliminary psychometric evaluation

PURPOSE The goals of the work described in this article were to translate and adapt into Serbian the Quality of Life in Epilepsy Inventory for Adolescents (QOLIE-AD-48), and to evaluate the psychometric properties of the translation. METHODS Translation/backtranslation, cultural adaptation, and pretesting were performed first. For validity, internal consistency, and sensitivity testing, the Serbian version was administered to a sample of 67 adolescents with epilepsy. RESULTS All subscales (Epilepsy Impact, Memory/Concentration, Attitudes toward Epilepsy, Physical Functioning, Stigma, Social Support, School Behavior, and Health Perceptions) contributed significantly to the summary measure. Mean scores for the subscales ranged from 75.4 to 91.3, and showed a tendency to decrease as illness severity increased. Internal consistency reliability (Cronbachs alpha) was 0.92 for the entire questionnaire. CONCLUSIONS The QOLIE-AD-48 Serbian version is a valid and reliable instrument for health-related quality-of-life assessment in youths with epilepsy. It can be administered in 15 minutes, and can be used in clinical practice, as well as in quality-of-life research.

Choosing the appropriate quality-of-life measurement.

To the Editor: Patient-reported outcomes, especially those reflecting quality of life (QOL), are frequently used as outcome measures in clinical research. An important consideration in QOL research, however, is that the appropriate instrument be used for the study population. The Quality of Life in Childhood Epilepsy (QOLCE) questionnaire is frequently used in pediatric QOL research. The QOLCE is intended for study populations composed of children and adolescents with epilepsy (4 to 18-yearolds), and possesses good internal consistency, test-retest stability, construct validity, and ability to detect changes over time [1–3]. In a recent report, Mikati and colleagues used the QOLCE to evaluate QOL in a group of pediatric patients who had undergone epilepsy surgery between 1997 and 2004 [4]. QOL was measured two years after surgery. Based on the QOLCE, the authors noted ‘‘marked benefits in physical activity and well-being, but not in functioning domains” and concluded that ‘‘successful epilepsy surgery in children does not necessarily benefit all aspects of QOL”. However, the QOLCE was introduced in the year 2000, and to date, there are no published data regarding its psychometric or clinometric properties in Lebanese patients [5]. This raises concerns about the appropriateness of this instrument in the population studied by Mikati et al, both with re-

The Serbian version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR)

The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) is a new parent/patient-reported outcome measure that enables a thorough assessment of the disease status in children with juvenile idiopathic arthritis (JIA). We report the results of the cross-cultural adaptation and validation of the parent and patient versions of the JAMAR in the Serbian language. The reading comprehension of the questionnaire was tested in 10 JIA parents and patients. Each participating centre was asked to collect demographic, clinical data and the JAMAR in 100 consecutive JIA patients or all consecutive patients seen in a 6-month period and to administer the JAMAR to 100 healthy children and their parents. The statistical validation phase explored descriptive statistics and the psychometric issues of the JAMAR: the three Likert assumptions, floor/ceiling effects, internal consistency, Cronbach’s alpha, interscale correlations, test–retest reliability, and construct validity (convergent and discriminant validity). A total of 248 JIA patients (5.2% systemic, 44.3% oligoarticular, 23.8% RF-negative polyarthritis, 26.7% other categories) and 100 healthy children were enrolled in three centres. The JAMAR components discriminated healthy subjects from JIA patients. All JAMAR components revealed good psychometric performances. In conclusion, the Serbian version of the JAMAR is a valid tool for the assessment of children with JIA and is suitable for use both in routine clinical practice and clinical research.