AGREEMENT BETWEEN CHILD SELF-REPORTED AND PARENTS' PROXY REPORTED QUALITY OF LIFE OF CHILDREN WITH EPILEPSY IN INDIA

Author(s)

Gudala K1, Bansal D2, Azad C3, Guglani V3
1National Institute of Pharmaceuitical Education and Research, Mohali, India, 2National Institute of Pharmaceutical Research and Education, Mohali, Punjab, India, 3Governement Medical College and Hospital, Chandigarh, India

OBJECTIVES: Emerging evidence suggests there exists a cross informant variance between self reported and parent/care taker proxy reported health related quality of life (HRQoL) especially in children. We therefore assessed the consistency and agreement between child self-reported and their parents’ proxy-report HRQoL of the children with epilepsy. METHODS: It is a prospective observational study where children (1-18 yr) suffering from epilepsy were included in the study. HRQoL was assessed using Pediatric quality of life questionnaire (PedsQL). It comprised of 23 questions related to physical, emotional, social and school functioning. After getting consent scale was administered to both parents and subjects separately. Agreement between HRQoL scores was analyzed via an intra-class correlation coefficient, Spearman's correlation coefficient and Wilcoxon signed rank test. RESULTS: We included 120 subjects data where children and parent-proxy data was available. Mean age is found to be 12.6 yrs and mean duration of antiepileptic treatment duration of 27.4 months. There was no significant difference found between mean total score of HRQoL reported by children 89.5+8 and the parent proxy score 90.4+7. Overall physiological subscale score is not different but emotional component score reported by parents (88.3+12) was found to be significantly higher (P <0.01) than that of children (83.4+13.4). Whereas school subscale score reported by children (83.8+12.3) was significantly higher (P <0.01) than that of parent proxy score (76+18.3). We found no difference in the subscales scores of psychological, emotional and social subscales.   CONCLUSIONS: A clinically significant variation observed between children self reported and parent’s proxy HRQoL score in children with epilepsy. A careful judgment need to be taken while considering parents' proxy-reports of their child's HRQoL.

Conference/Value in Health Info

2014-05, ISPOR 2014, Palais des Congres de Montreal

Value in Health, Vol. 17, No. 3 (May 2014)

Code

PND43

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Neurological Disorders

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