Correlates of health‐related quality of life in children with drug resistant epilepsy

Conway, Lauryn; Smith, Mary Lou; Ferro, Mark A.; Speechley, Kathy N.; Connoly, Mary B.; Snead, O. Carter; Widjaja, Elysa

doi:10.1111/epi.13441

Cited by 53 publications

(48 citation statements)

References 52 publications

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“…Caregiver anxiety and caregiver satisfaction with family relationships contributed most strongly to child QOL over time. This finding is consistent with previous research highlighting the dominant effects of psychosocial factors, such as parental psychopathology and the family environment more broadly, on child QOL at baseline and longitudinally, relative to clinical factors. One exception is AED side effects, a seizure‐related variable that was not captured in the current study but that has been identified as a consistent predictor of QOL in children with epilepsy …”

Section: Discussionsupporting

confidence: 92%

“…Data were collected as part of the Impact of Pediatric Epilepsy Surgery on Health‐Related Quality of Life Study (PEPSQOL), a multicenter longitudinal prospective cohort study . Participants were recruited between April 2014 and September 2016 while being evaluated for epilepsy surgery at eight centers across Canada.…”

Section: Methodsmentioning

confidence: 99%

“…Ordered logistic regression was employed to examine the association between the G‐QOLCE scores and identified correlates of QOL in children with epilepsy at both time points. Potential correlates included seizure frequency, IQ, number of AEDs, duration of epilepsy, caregiver anxiety, caregiver depression, family functioning, family resources, family demands (measured at baseline only), and household income.…”

Section: Methodsmentioning

confidence: 99%

“…We assessed the validity, reliability, and responsiveness of the G‐QOLCE using a multicenter sample of children with drug‐resistant epilepsy. As a secondary aim, we examined potential clinical and psychosocial correlates (identified in prior studies) of G‐QOLCE scores at baseline and 6‐month follow‐up. The use of a more clinically severe, drug‐resistant sample for initial psychometric evaluation of the G‐QOLCE is supported by previous work examining the benefits of patient‐reported health status measurement in clinical practice .…”

mentioning

confidence: 99%

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Single‐item measure for assessing quality of life in children with drug‐resistant epilepsy

2017

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SummaryObjectiveThe current study investigated the psychometric properties of a single‐item quality of life (QOL) measure, the Global Quality of Life in Childhood Epilepsy question (G‐QOLCE), in children with drug‐resistant epilepsy.MethodData came from the Impact of Pediatric Epilepsy Surgery on Health‐Related Quality of Life Study (PESQOL), a multicenter prospective cohort study (n = 118) with observations collected at baseline and at 6 months of follow‐up on children aged 4–18 years. QOL was measured with the QOLCE‐76 and KIDSCREEN‐27. The G‐QOLCE was an overall QOL question derived from the QOLCE‐76. Construct validity and reliability were assessed with Spearman's correlation and intraclass correlation coefficient (ICC). Responsiveness was examined through distribution‐based and anchor‐based methods.ResultsThe G‐QOLCE showed moderate (r ≥ 0.30) to strong (r ≥ 0.50) correlations with composite scores, and most subscales of the QOLCE‐76 and KIDSCREEN‐27 at baseline and 6‐month follow‐up. The G‐QOLCE had moderate test‐retest reliability (ICC range: 0.49–0.72) and was able to detect clinically important change in patients' QOL (standardized response mean: 0.38; probability of change: 0.65; Guyatt's responsiveness statistics: 0.62 and 0.78). Caregiver anxiety and family functioning contributed most strongly to G‐QOLCE scores over time.SignificanceResults offer promising preliminary evidence regarding the validity, reliability, and responsiveness of the proposed single‐item QOL measure. The G‐QOLCE is a potentially useful tool that can be feasibly administered in a busy clinical setting to evaluate clinical status and impact of treatment outcomes in pediatric epilepsy.

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Section: Discussionsupporting

confidence: 92%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

mentioning

confidence: 99%

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Single‐item measure for assessing quality of life in children with drug‐resistant epilepsy

2017

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“…Research supporting the importance of knowledge in this area comes from studies demonstrating that caregiver burden is significantly associated with the child with epilepsy's quality of life [21,24,32]. For example, in one study, the level of a mother's caregiver stress was found to be moderately to strongly associated with behavior problems in the child [21].…”

Section: Identify the Factors That Influence Ds Caregiving Burden As mentioning

confidence: 99%

The humanistic and economic burden of Dravet syndrome on caregivers and families: Implications for future research

Jensen

Brunklaus

Dorris

et al. 2017

Epilepsy & Behavior

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We reviewed the current literature with respect to the humanistic and financial burdens of Dravet Syndrome (DS) on the caregivers of children with DS, in order to (1) identify key unanswered questions or gaps in knowledge that need to be addressed and then, based on these knowledge gaps, (2) propose a research agenda for the scientific community to address in the coming decade. The findings support the conclusion that caring for a child with DS is associated with significant humanistic burden and direct costs. However, due in part to the paucity of studies, as well as the lack of measures of specific burden domains, there remains much that is not known regarding the burden of caregiving for children with DS. To address the significant knowledge gaps in this area, research is needed that will: (1) identify the specific domains of caregivers' lives that are impacted by caring for a child with DS; (2) identify or, if needed, develop measures of caregiving impact in this area; (3) identify the factors that influence DS caregiving burden; (4) develop and evaluate the efficacy of treatments for reducing the negative impact of DS and its comorbidities on DS caregivers; (5) quantify the direct medical costs associated with DS and DS comorbidities and identify the factors that influence these costs; and (6) quantify and fully explore the indirect costs of DS. Research that addresses these goals will provide the empirical foundation needed for improving the quality of life of children with DS and their families.

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Trajectory of Health-Related Quality of Life After Pediatric Epilepsy Surgery

et al. 2023

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ImportanceHealth-related quality of life (HRQOL) is regarded as a key outcome for evaluating treatment efficacy. However, it is uncertain how HRQOL evolves after epilepsy surgery compared with medical therapy, such as whether it continues to improve over time, improves and then remains stable, or deteriorates after a period of time.ObjectiveTo assess trajectory of HRQOL over 2 years in children with drug-resistant epilepsy (DRE) treated with surgery compared with medical therapy.Design, Setting, and ParticipantsProspective cohort study assessing HRQOL longitudinally over 2 years. Participants were children recruited from 8 epilepsy centers in Canada from 2014 to 2019 with suspected DRE aged 4 to 18 years who were evaluated for surgery. Data were analyzed from May 2014 to December 2021.ExposuresEpilepsy surgery or medical therapy.Main Outcomes and MeasuresHRQOL was measured using the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE)-55. HRQOL and seizure frequency were assessed at baseline, 6-month, 1-year, and 2-year follow-ups. Clinical, parent, and family characteristics were assessed at baseline. A linear mixed model was used to evaluate HRQOL over time, adjusting for baseline clinical, parent, and family characteristics.ResultsThere were 111 surgical and 154 medical patients (mean [SD] age at baseline was 11.0 [4.1] years; 118 [45%] were female). At baseline, HRQOL was similar among surgical and medical patients. HRQOL of surgical patients was 3.0 (95% CI, −0.7 to 6.8) points higher at 6-month, 4.9 (95% CI, 0.7 to 9.1) points higher at 1-year, and 5.1 (95% CI, 0.7 to 9.5) points higher at 2-year follow-ups compared with medical patients. Surgical patients experienced greater improvements in social functioning relative to medical patients, but not for cognitive, emotional, and physical functioning. At 2-year follow-up, 72% of surgical patients were seizure-free, compared with 33% of medical patients. Seizure-free patients reported higher HRQOL than those who were not.Conclusions and RelevanceThis study provided evidence on the association between epilepsy surgery and children’s HRQOL, with improvement in HRQOL occurring within the first year and remaining stable 2 years after surgery. By demonstrating that surgery improved seizure freedom and HRQOL, which has downstream effects such as better educational attainment, reduced health care resource utilization, and health care cost, these findings suggest that the high costs of surgery are justified, and that improved access to epilepsy surgery is necessary.

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Correlates of health‐related quality of life in children with drug resistant epilepsy

Cited by 53 publications

References 52 publications

Single‐item measure for assessing quality of life in children with drug‐resistant epilepsy

Single‐item measure for assessing quality of life in children with drug‐resistant epilepsy

The humanistic and economic burden of Dravet syndrome on caregivers and families: Implications for future research

Trajectory of Health-Related Quality of Life After Pediatric Epilepsy Surgery

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