Validation of the PedsQL Epilepsy Module
Pediatric Quality of Life Inventory (PedsQL)
Category: Evaluative
Article: Validation of the PedsQL Epilepsy Module: A pediatric epilepsy-specific health-related quality of life measure.
Article Summary:
The PedsQL Epilepsy Module was analyzed amongst other questionnaires (including BRIEF, BASC-2, and PESQ) to determine the reliability and validity of this epilepsy-specific HRQOL tool in a pediatric population with diagnosed epilepsy. There are several shortcomings for existing pediatric epilepsy-specific HRQOL measures including weakness in their clinical utility, being lengthy (48-79 items), lack parallel caregiver and child-report forms, and lack inclusion of those with learning/developmental disabilities.
The PedsQL Epilepsy Module is a 29-item measure with five scales: Impact, Cognitive, Sleep, Executive Function, and Mood/Behavior. The Impact Scale assesses how epilepsy disrupts daily activities, interacting with peers, independence, and increased disease burden due to treatment. The Cognitive Scale assesses memory, ability to learn new material, school-related difficulties, and reading difficulties. The Sleep Scale assesses fatigue and sleep difficulties. The Executive Function Scale assesses organization, task initiation, impulsivity, and inattention. The Mood/Behavior Scale assesses feelings of anger, sadness, worries, and frustration tolerance.
Purpose: To validate the PedsQL as a epilepsy-specific HRQOL measure in children with various seizure types, treatments, and demographic characteristics.
Population:
Youth ranging from 5-18 years old and caregivers of youth 2-18 years old with diagnosed epilepsy. Inclusion/exclusion criteria include (1) ability to read English and (2) no other chronic medical condition, except for allergies and neurobehavioral comorbidities. 430 subjects were used. (Mean age = 9.9 years; range 2–18 years; 46% female; 62% white: non-Hispanic; 76% monotherapy, 54% active seizures)
Methods: Participants were chosen from 5 tertiary care centers in the United States, including outpatient, inpatient, and epilepsy monitoring units. Participants completed questionnaires based on age and recruitment site.
Intervention
This particular study does not lend itself to a clear “intervention”, however, medical chart reviews were conducted by research staff. Three of the five tertiary care centers administered all questionnaires, and two of the five completed a shorter validation battery (i.e., PedsQL Epilepsy Module, Generic Core Scales, Cognitive Functioning Scale, and Family Information Form) to increase sample size for the factor analyses. A subset of participants completed the PedsQL Epilepsy Module and interval history form 2-4 weeks after enrollment to assess test-retest reliability.
Results
The test–retest reliability was strong, ranging from 0.59 to 0.83. Intraclass correlations for caregiver–child dyads were also excellent, ranging from 0.45 to 0.60.
Strong correlations were found between similar scales. Compared to children who were seizure free, children with active seizures in the past 3 months had significantly lower parent and child-reported PedsQL Epilepsy Module scores. Both parent and child-reported scores showed higher HRQOL for children on monotherapy versus polytherapy. The presence of a developmental/learning disorder showed significant negative impact on all subscales.
MCID for parent-reported scales ranged from 7.59 (Cognitive) to 12.61 (Sleep), and the child-reported figures ranged from 8.44 (Impact) to 14.68 (Sleep).
Major strengths:
The sample of participants includes a large and diverse population, which further supports validity of the PedsQL Epilepsy Module. See Table 1 for the demographic data breakdown. In 2015, the journal Epilepsia had impact factor of 4.706.
Major limitations:
Because of the numerous treatment approaches for epilepsy, larger samples may be warranted to further assess the impact of those treatments on HRQOL. Future research should also evaluate the validity of the model in additional samples, including other clinically relevant groupings such as active seizures and therapy types, compared to the generalized groupings of this particular study (e.g. “seizures in the past 3 months” and “monotherapy or polytherapy”). While the PedsQL Epilepsy Module does have fewer questions than its existing counterparts, the actual time it takes to complete the module was not taken.
Overall conclusion:
The PedsQL Epilepsy Module is a reliable measure of HRQOL in children with epilepsy and allows for multi-method reporting by caregiver and patient. The questionnaire is brief and easy to score as well as clinically applicable and useful, compared to existing pediatric epilepsy–specific HRQOL measures (e.g., Quality of Life in Epilepsy-Adolescents [QOLIE-AD-48], Quality of Life in Childhood Epilepsy [QOLCE]).
The authors concisely stated the overall message of this study best: “The instrument can be used as a surveillance tool in routine epilepsy care to identify targets for intervention, assess the impact of changes in medical status or treatment regimen, and facilitate communication about the impact of epilepsy between patients, families, and providers, with the goal of improving outcomes for children with epilepsy.”1
Reference
1- Modi, A. C., Junger, K. F., Mara, C. A., Kellermann, T., Barrett, L., Wagner, J., Mucci, G. A., Bailey, L., Almane, D., Guilfoyle, S. M., Urso, L., Hater, B., Hustzi, H., Smith, G., Herrmann, B., Perry, M. S., Zupanc, M. and Varni, J. W. (2017), Validation of the PedsQL Epilepsy Module: A pediatric epilepsy-specific health-related quality of life measure. Epilepsia, 58: 1920–1930. doi:10.1111/epi.13875
2 responses to “Validation of the PedsQL Epilepsy Module”
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Interesting article. We used the PedsQL form in one of my clinicals, but never specifically used the epilepsy module version. I do not see any indications in this article regarding who the caregivers were who completed the form but it would be interesting to look into those details as well if that information is out anywhere else. We often noticed discrepancies of this form being filled out by the child’s parent vs being filled out by the same child’s caregiver who provided additional assistance. I would assume there might be similar discrepancies in other questionnaires that take caregiver perspective into account, depending on who the caregiver is who is completing it.
This is a great point I overlooked, especially with my limited experience with pediatrics in a PT setting. Perhaps in the future (for now), caregivers who fill out this outcome measure should be the one who is considered the primary caregiver for the child. This is another facet of research that definitely should be considered in these analyses!