Validation of the Peds<scp>QL</scp> Epilepsy Module: A pediatric epilepsy‐specific health‐related quality of life measure

Modi, Avani C.; Junger, Katherine F.; Mara, Constance A.; Kellermann, Tanja S.; Barrett, Lauren E.; Wagner, Janelle L.; Mucci, Grace; Bailey, Laurie; Almane, Dace; Guilfoyle, Shanna M.; Urso, Lauryn; Hater, Brooke; Hustzi, Heather; Smith, Gigi; Herrmann, Bruce; Perry, Μ. Scott; Zupanc, Mary L.; Varni, James W.

doi:10.1111/epi.13875

Cited by 53 publications

(31 citation statements)

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“…Screening measures for other aspects of psychological functioning (eg, HRQOL, AED side effects) may provide beneficial information regarding patient well‐being. Psychometrically sound and free epilepsy‐specific HRQOL tools include the Quality of Life in Epilepsy (QOLIE) adult (QOLIE‐10, QOLIE‐31, QOLIE‐89) and adolescent (QOLIE‐48) measures and the newer PedsQL Epilepsy Modules . Parent‐proxy report of their child's HRQOL can also be obtained via the Quality of Life in Childhood Epilepsy Questionnaire (4‐18 years old) .…”

Section: Available Evidence For Psychological Treatment Across the Epmentioning

confidence: 99%

“…Psychometrically sound and free epilepsy-specific HRQOL tools include the Quality of Life in Epilepsy (QOLIE) adult (QOLIE-10, QOLIE-31, QOLIE-89) and adolescent (QOLIE-48) measures 31,32 and the newer PedsQL Epilepsy Modules. 33,34 Parent-proxy report of their child's HRQOL can also be obtained via the Quality of Life in Childhood Epilepsy Questionnaire (4-18 years old). 35,36 Additionally, the assessment of psychiatric/psychological symptoms at baseline can inform the choice of an AED, given that a history of psychological symptoms increases the vulnerability to subsequent behavioral/emotional side effects.…”

Section: Weak Recommendationmentioning

confidence: 99%

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Psychological treatments for adults and children with epilepsy: Evidence‐based recommendations by the International League Against Epilepsy Psychology Task Force

et al. 2018

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Given the significant impact that psychosocial factors and epilepsy treatments can have on the health-related quality of life (HRQOL) of individuals with epilepsy and their families, there is great clinical interest in the role of psychological evaluation and treatments to improve HRQOL and comorbidities. Therefore, the International League Against Epilepsy (ILAE) charged the Psychology Task Force with the development of recommendations for clinical care based on evaluation of the evidence from their recent Cochrane review of psychological treatments in individuals with epilepsy. The literature search for a recent Cochrane review of randomized controlled trials investigating psychological treatments for individuals with epilepsy constitutes the key source of evidence for this article. To provide practical guidance to service providers, we provide ratings on study research designs based on (1) the American Academy of Neurology's Level of Evidence system and (2) the Grading of Recommendations, Assessment, Development, and Evaluation system. This paper is the culmination of an international collaboration process involving pediatric and adult psychologists, neurologists, psychiatrists, and neuropsychiatrists. The process and conclusions were reviewed and approved by the ILAE Executive Committee. The strongest evidence for psychological interventions was identified for the most common mental health problems, including depression, neurocognitive disturbances, and medication adherence. Psychological interventions targeting the enhancement of HRQOL and adherence and a decrease in comorbidity symptoms (anxiety, depression) should be incorporated into comprehensive epilepsy care. There is a range of psychological strategies (ie, cognitive behavioral therapy and mindfulness-based therapies) that show promise for improving the lives of persons with epilepsy, and clinical recommendations are provided to assist epilepsy health care providers in treating the comorbidities and challenges associated with epilepsy and its treatments.

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Section: Available Evidence For Psychological Treatment Across the Epmentioning

confidence: 99%

Section: Weak Recommendationmentioning

confidence: 99%

Psychological treatments for adults and children with epilepsy: Evidence‐based recommendations by the International League Against Epilepsy Psychology Task Force

et al. 2018

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“…44,45 PedsQL Epilepsy module was developed using focus groups. 44,45 There is evidence of structural validity and internal consistency for both child and parent report. Test-retest reliability was moderate (ICC = 0.59-0.83).…”

Section: Resultsmentioning

confidence: 99%

Epilepsy‐specific patient‐reported outcome measures of children's health‐related quality of life: A systematic review of measurement properties

et al. 2020

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Objective To identify and appraise published evidence of the measurement properties for epilepsy‐specific patient‐reported outcome measures (PROMs) of children's health‐related quality of life (HRQoL). Methods We searched multiple databases for studies evaluating the measurement properties of English‐language epilepsy‐specific PROMs of children's HRQoL. We assessed the methodological quality using the COnsensus‐based Standards for the selection of health Measurement INstruments (COSMIN) guidance. We extracted data about the content validity, construct validity, internal consistency, test‐retest reliability, proxy reliability, responsiveness, and precision, and assessed the measurement properties with reference to standardized criteria. Results We identified 27 papers that evaluated 11 PROMs. Methodological quality was variable. Construct validity, test‐retest reliability, and internal consistency were more commonly assessed. Quality of Life in Childhood Epilepsy (QoLCE) questionnaires are parent‐reported and evaluated more than other PROMs; QoLCE‐55 has good and replicated evidence for structural and construct validity and internal consistency. Health‐Related Quality of Life Measure for Children with Epilepsy (CHEQoL) has both child and parent‐reported versions and good evidence of content, structural, and construct validity. Significance This review identified two leading candidate epilepsy‐specific PROMs for measuring health‐related quality of life in children. Establishing evidence of the responsiveness of PROMs is a priority to help the interpretation of meaningful change scores.

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“…The percentage of participants whose results reached MIC was only provided in 1 study . The recent validation of the PedsQL Epilepsy Module may provide a necessary psychometrically sound HRQoL outcome for pediatric trials …”

Section: Discussionmentioning

confidence: 99%

“…HRQoL is a patient‐reported outcome measure that encompasses several domains, including physical, social, emotional, and school/work . Epilepsy‐specific HRQoL measures are more salient to specific aspects of epilepsy and its treatments and thus constitute a particularly sensitive and responsive patient‐reported outcome for PWE . Unlike in patients with psychogenic nonepileptic seizures, there remains a significant relationship between HRQoL and epilepsy severity markers when psychopathology is introduced as a covariate .…”

Section: Introductionmentioning

confidence: 99%

Cochrane systematic review and meta‐analysis of the impact of psychological treatments for people with epilepsy on health‐related quality of life

et al. 2018

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SummaryObjective: Given the significant impact epilepsy can have on health-related quality of life (HRQoL) of individuals with this condition and their families, there is great clinical interest in evidence-based psychological treatments aimed at enhancing well-being in people with epilepsy (PWE). An evaluation of the current evidence is needed to assess the effects of psychological treatments for PWE on HRQoL outcomes to inform future therapeutic recommendations and research designs. Methods: The operational definition of psychological treatments included a broad range of interventions that use psychological or behavioral techniques designed to improve HRQoL, psychiatric comorbidities, and seizure frequency and severity for adults and children with epilepsy. A systematic literature search was conducted in line with Cochrane criteria for randomized controlled trials (RCTs) and quasi-RCTs investigating psychological treatments and using HRQoL outcome measures as primary or secondary outcome measures. Standard methodological procedures required by the Cochrane Collaboration were used for data collection and analysis. Results: Twenty-four completed RCTs were included in this review (2439 participants). Based on satisfactory methodological homogeneity, data from 9 studies (468 participants) providing Quality of Life in Epilepsy-31 (QOLIE-31) outcomes were pooled for meta-analyses, showing significant mean changes for QOLIE-31 total score and 6 subscales. The significant mean changes of QOLIE-31 total score (mean improvement of 5.68 points; 95% confidence interval = 3.11-8.24, P < .0001) and 3 subscales (emotional well-being, energy/fatigue, overall quality of life [QoL]) exceeded the threshold of minimally important change, indicating a clinically meaningful postintervention improvement of QoL. Overall, the metaanalysis quality of evidence was characterized as "moderate" due to the risk of R.M. and V.T. contributed in equal measure to this article and should be considered joint first authors. This article is based on a Cochrane Review published in the Cochrane Database of Systematic Reviews (CDSR) 2017, Issue 10: CD012081, https://doi. org/10.1002/14651858.cd012081 (see www.cochranelibrary.com for information). Cochrane Reviews are regularly updated as new evidence emerges and in response to feedback, and the CDSR should be consulted for the most recent version of the review.

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Validation of the PedsQL Epilepsy Module: A pediatric epilepsy‐specific health‐related quality of life measure

Abstract: The PedsQL Epilepsy Module is a reliable measure of HRQOL with strong evidence of its validity across the epilepsy spectrum in both clinical and research settings.

Cited by 53 publications

References 40 publications

Psychological treatments for adults and children with epilepsy: Evidence‐based recommendations by the International League Against Epilepsy Psychology Task Force

Psychological treatments for adults and children with epilepsy: Evidence‐based recommendations by the International League Against Epilepsy Psychology Task Force

Epilepsy‐specific patient‐reported outcome measures of children's health‐related quality of life: A systematic review of measurement properties

Cochrane systematic review and meta‐analysis of the impact of psychological treatments for people with epilepsy on health‐related quality of life

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