Development and validation of the Pediatric Epilepsy Medication Self-Management Questionnaire

https://doi.org/10.1016/j.yebeh.2010.03.009Get rights and content

Abstract

Study aims were to describe the development and validation of a Pediatric Epilepsy Medication Self-Management Questionnaire (PEMSQ) for caregivers of children 2-14 years. It was expected that PEMSQ scales would have 1) factors with high internal consistency (e.g., Cronbach's alpha > 0.70) and 2) moderate associations with adherence and seizures. Participants included caregivers of 119 children with epilepsy (Mage = 7.2 yrs, 36% female, 72% Caucasian) who completed the PEMSQ, demographics questionnaire, and AED adherence was assessed (e.g., electronic monitors, self-report). Factor analysis was conducted and internal consistency and construct validity were assessed. The final PEMSQ is 27 items with four scales (Epilepsy and Treatment Knowledge and Expectations, Adherence to Medications and Clinic Appointments, Barriers to Medication Adherence, and Beliefs about Medication Efficacy) accounting for 88% variance. Cronbach's alphas ranged from 0.68-0.85. Significant associations were found between PEMSQ scales, adherence, and seizures. The PEMSQ represents the first self-management measure validated for caregivers of children with epilepsy, with clinical and research utility.

Introduction

Self-management of chronic illnesses, including epilepsy, refers to a patient or family's active involvement in the daily activities they assume to control the illness and its symptoms, minimize its impact on health and quality of life, and cope with the disease [1], [2], [3], [4], [5]. Specific to epilepsy, self-management refers to the activities required to control seizures and reduce side effects, including taking antiepileptic drugs, engaging in healthy lifestyle behaviors (e.g., good sleep hygiene), active participation in decision making with the healthcare team, and managing stress. The concept of self -management is important because epilepsy management primarily occurs in the home environment, not clinic settings. Thus, it is critical to assess what families understand about their disease and treatment regimen, their beliefs about the efficacy of treatment, and facilitators and barriers to adherence. The term self-management will be used throughout the manuscript to refer to both self- and family-management of epilepsy [4].

While the adult epilepsy literature provides a strong foundation for theories and measures of self-management [6], [7], [8], as well as interventions targeted at self-management [9], [10], [11], [12], little is known about self-management of pediatric epilepsy. The first step required to assess self-management of pediatric epilepsy is the development of a tool to measure the construct. Once a validated tool exists, researchers can determine predictors of self-management and how self-management affects health and psychosocial outcomes for children with epilepsy.

Because management of epilepsy begins the day of diagnosis, children with new-onset epilepsy and their families are primary targets for assessment and intervention around epilepsy management. Thus, the aim of the present study was to describe the development and validation of a Pediatric Epilepsy Medication Self-Management Questionnaire for caregivers of children newly diagnosed with epilepsy between 2-14 years of age. The primary objective was to assess the reliability and validity of the Pediatric Epilepsy Medication Self-Management Questionnaire. Specifically, it was expected that the Pediatric Epilepsy Medication Self-Management Questionnaire would have 1) factors with high internal consistency (e.g., Cronbach's alpha > 0.70) and 2) moderate associations with an objective and self-reported adherence measure (construct validity). Other secondary study objectives included examining child age, socioeconomic status, months since epilepsy diagnosis, race, gender, marital status, and seizure type differences on the Pediatric Epilepsy Medication Self-Management Questionnaire.

Section snippets

Participants and Procedures

Study participants included 119 children with epilepsy and their primary caregivers seen at the New Onset Epilepsy clinic at Cincinnati Children's Hospital Medical Center (CCHMC). Study inclusion criteria included 1) children 2-14 years of age, 2) absence of significant developmental disorders (e.g., autism, Down syndrome) or comorbid chronic illnesses (e.g., diabetes), 3) willingness to comply with study procedures and 4) provision of written informed consent/assent. Families participating in

Participants

Of the 127 potential participants, 122 agreed to participate, indicating a recruitment rate of 96% for the longitudinal study. Of the 122 participants, three participants did not return for follow-up to the epilepsy clinic; thus, no research data were available for these children. The final sample included 119 participants. A summary of demographic characteristics of participants are presented in Table 1.

Factor Analysis

An exploratory factor analysis was conducted to examine 40 items on the Pediatric Epilepsy

Discussion

The Pediatric Epilepsy Medication Self-Management Questionnaire is the first measure to our knowledge to assess aspects of self-management that are likely salient to a pediatric epilepsy population, including understanding of epilepsy and its treatment, adherence to AEDs, beliefs about the efficacy of treatment, and barriers to treatment. Preliminary results demonstrate that the PEMSQ has strong psychometric properties, including good internal consistency among scales and construct validity

Acknowledgements

Funding/Support: This research was funded by a grant from the National Institutes of Health (K23HD057333). We would like to extend our deepest appreciation to the children with epilepsy and their families who participated in this study. We thank Julie Koumoutsos, Elizabeth Painter, Julie Adcock, and Shanna Guilfoyle for recruiting participants and collecting their data. We also thank the healthcare team involved in the medical and psychosocial care of children with new-onset epilepsy who

References (27)

  • C. DiIorio et al.

    Epilepsy self-management: partial replication and extension

    Res Nurs Health

    (1994)
  • C. DiIorio et al.

    Epilepsy self-management: a test of a theoretical model

    Nurs Res

    (1996)
  • C. DiIorio et al.

    Evaluation of WebEase: an epilepsy self-management Web site

    Health Educ Res

    (2009)
  • Cited by (56)

    View all citing articles on Scopus
    View full text