Authors :
Presenting Author: Erin Fecske, DNP, APRN, CNRN, CPNP-PC, FAES – Children's Mercy Kansas City
Emily Cramer, PhD – Children's Mercy Kansas City; Paul Glasier, PhD – Children's Mercy Kansas City
Rationale:
Epilepsy is a diagnosis that impacts critical aspects of psychosocial functioning; therefore, quality of life (QOL) is recognized as an important outcome metric for children with epilepsy. While QOL may be difficult to objectively assess, four components: cognitive, emotional, social, and physical provide a collective estimate of QOL. Significant research supports the use of the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) as a measure for QOL in children with epilepsy, as this tool carefully assesses each of the four components of QOL. This caregiver-rated survey was recently introduced as a 16-item measure, the QOLCE-16, which retains the beneficial psychometric properties of the longer original surveys and is feasible for clinical use.
Methods:
Based on the clear need for assessment of QOL in pediatric epilepsy, the QOLCE-16 was implemented as a part of routine care for patients and families presenting for telemedicine visits within rural Kansas as part of a statewide research initiative known as Reaching Out for Epilepsy in Adolescents and Children through Telemedicine (REACT).
Results:
The QOLCE-16 was completed by 14 participants. Sample means on all subscales were a full standard deviation lower than means reported in prior research on children with epilepsy. QOL scores were lowest for cognitive functioning (M=51.3, SD=23.9), followed by physical functioning (M=58.0, SD=25.5), emotional functioning (M=62.1, SD18.4), and social functioning (M=63.8, SD=28.6).
Conclusions:
Although the sample size is small, current scores were well below those obtained in similar research. This suggests the need for increased focus on QOL in pediatric epilepsy, particularly in traditionally underserved, rural communities in the United States. Further research, including increased sample size, may provide additional insights into the challenges specific to this populations QOL. Additionally, including patient-rated QOL measures and strategies to improve QOL in this vulnerable population will be important to understand and improve QOL.
Funding:
Health Resources and Services Administration Grant Award, H98MC33239-01-00 for Awareness And Access To Care For Children And Youth With Epilepsy.