Development and validation of the Pediatric Epilepsy Medication Self-Management Questionnaire
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)
- et al.
A framework for the study of self- and family management of chronic conditions
Nurs Outl
(2006) - et al.
Behavioral, social, and affective factors associated with self-efficacy for self-management among people with epilepsy
Epilepsy Behav
(2006) - et al.
A psychosocial self-management program for epilepsy: a randomized pilot study in adults
Epilepsy Behav
(2007) - et al.
A telephone-based self-management program for people with epilepsy
Epilepsy Behav
(2009) - et al.
A revised socioeconomic index of occupational status
Soc Sci Res
(1981) Drug compliance of children and adolescents with epilepsy
Seizure
(2005)- et al.
Self-management education: history, definition, outcomes, and mechanisms
Ann Behav Med
(2003) - et al.
Self-management of chronic disease by older adults
J Aging Health
(1991) Chronic Care: Self-Management Guideline Team Cincinnati Children's Hospital Medical Center
- et al.
The concept of self-management of type 1 diabetes in children and adolescents: An evolutionary concept analysis
J Adv Nurs
(2002)
Epilepsy self-management: partial replication and extension
Res Nurs Health
Epilepsy self-management: a test of a theoretical model
Nurs Res
Evaluation of WebEase: an epilepsy self-management Web site
Health Educ Res
Cited by (56)
Predictors of objective treatment adherence in adolescents with epilepsy: The important role of motivation
2023, Epilepsy and BehaviorDevelopment of a parent questionnaire to assess treatment adherence for a child or adolescent with epilepsy
2023, Epilepsy and BehaviorModifiable factors related to transition readiness in adolescents and young adults with epilepsy
2021, Epilepsy and Behavior