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Longitudinal Health-Related Quality of Life in Children with Newly-Diagnosed Epilepsy: Identifying Predictors and Assessing Meaningful Change over Time

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2014, Doctor of Psychology (Psy.D.), Xavier University, Psychology.
Compared to healthy peers, children with epilepsy, of which there are approximately 325,000 under the age of 15 in the United States, are at increased risk for lower health-related quality of life (HRQOL) (Epilepsy Foundation, n.d.; Modi et al., 2009; Montanaro, Battistella, Boniver, & Galeone, 2004; Sabaz et al., 2003). A number of variables may affect HRQOL in children with epilepsy, including epilepsy specific variables, comorbidities, and child, family, and community variables (Lach et al., 2006). Few studies have examined how these variables predict changes in HRQOL over time for children with newly-diagnosed epilepsy using a disease specific measure. The aims of the current study were to: 1) examine changes in HRQOL scores of children with newly¬diagnosed epilepsy over two years using a disease specific measure (Quality of Life in Childhood Epilepsy Questionnaire [QOLCE] [Sabaz et al., 2003]) 2) examine clinical significance of changes in HRQOL scores 3) examine how seizures (dichotomized as present vs. absent) and antiepileptic drug (AED) side effects predict changes in HRQOL scores over the course of two years. One hundred and twelve caregivers of children from 4-12 with epilepsy participated in the study. Hierarchical linear modeling (HLM) revealed statistically significant increases of QOLCE-Overall scores and Physical Restrictions, Energy and Fatigue, Behavior, and General Health subscale scores from baseline to two years post-diagnosis. Calculated minimum clinically important difference (MCID) scores showed only QOLCE-Overall scores had clinically significant improvements over time. HLM analyses examined the role of seizures and AED side effects on HRQOL scores. Children who had seizures between visits had significantly lower Energy and Fatigue scores than children without seizures, although this difference disappeared by the end of two years. Children with higher side effects had lower Attention and Concentration, Memory, Language, and Anxiety scores compared to children with lower side effects. Unexpectedly, at baseline, children with higher side effects had higher Energy and Fatigue scores compared with children with lower side effects. However, by the end of two years children with higher side effects had lower scores compared to children with lower side effects. While, overall HRQOL may improve overtime for children with newly-diagnosed epilepsy, the results highlight the role AED side effects play for these children. Health-care providers need to continue to be sensitive to the potential of side effects and work with families and children to know what to expect when starting an AED for the first time. This education and guidance may help patients and families better be able to communicate with their health-care providers and create a better decision-making process.
Janet Schultz, Ph.D., ABPP (Committee Chair)
136 p.

Recommended Citations

Citations

  • Harrison, J. (2014). Longitudinal Health-Related Quality of Life in Children with Newly-Diagnosed Epilepsy: Identifying Predictors and Assessing Meaningful Change over Time [Doctoral dissertation, Xavier University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=xavier1510307341014498

    APA Style (7th edition)

  • Harrison, Jordan. Longitudinal Health-Related Quality of Life in Children with Newly-Diagnosed Epilepsy: Identifying Predictors and Assessing Meaningful Change over Time. 2014. Xavier University, Doctoral dissertation. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=xavier1510307341014498.

    MLA Style (8th edition)

  • Harrison, Jordan. "Longitudinal Health-Related Quality of Life in Children with Newly-Diagnosed Epilepsy: Identifying Predictors and Assessing Meaningful Change over Time." Doctoral dissertation, Xavier University, 2014. http://rave.ohiolink.edu/etdc/view?acc_num=xavier1510307341014498

    Chicago Manual of Style (17th edition)