Perceptual Differences of Quality of Life Between Patients and Caregivers During Phase I
Abstract number :
2.29
Submission category :
9. Surgery / 9B. Pediatrics
Year :
2022
Submission ID :
2204448
Source :
www.aesnet.org
Presentation date :
12/4/2022 12:00:00 PM
Published date :
Nov 22, 2022, 05:25 AM
Authors :
Christopher Ryan, MSW, LICSW – Boston Children's Hospital; Meghann Soby, MSW, LISCW – Clinical Social Worker, Epilepsy, Boston Children's Hospital; Elizabeth Boskey, Ph.D., M.P.H., L.I.C.S.W. – Scientist, Center Gender Surgery, Boston Children's Hospital; Abigail Ross, Ph.D., M.P.H., L.I.C.S.W. – Research Social Worker, Social Work, Boston Children's Hospital; Trey Moore, B.A. – Research Assistant, Neurology, Boston Children's Hospital; Jeffrey Bolton, MD – Attending Physician, Epilepsy, Boston Children's Hospital
Rationale: Pediatric epilepsy patients experience high rates of mental health, learning, and behavioral problems, and report lower quality of life (QOL). There is limited research regarding the relationship in QOL perceptions between patients and caregivers undergoing Phase 1 pre-surgical evaluation. Research through a social work lens that examines the facets related to patient and caregiver QOL perceptions is valuable to inform the treatment team on risk factors and guide clinical and psychosocial interventions. We report preliminary findings of perceptual differences of QOL between phase I patients and their caregivers.
Methods: Social workers administer PedsQL-Epi to patients and caregivers, assessing QOL in five domains: impact, cognitive functioning, sleep/fatigue, executive functioning, and mood/behavior. The sample consists of 71 pre-surgical epilepsy patients admitted between 2020 and 2022; 65 patients meet inclusion criteria for this review. Variables were extracted through review of PedsQL-Epi survey scores, psychosocial assessment data, and epilepsy surgery patient data. Additional demographic data were obtained through a review electronic medical record and protected departmental databases. In addition to analyzing the effects on individual scores, factors affecting the difference between parent and child scores (within family variability) were also assessed.
Results: In terms of absolute scores, parents tended to rate their child’s function lower than their child did on the impact (IMP), Cognition (COG), and mood and behavior (MBX) scales but there were, on average, no differences in ratings on the on the Sleep/Fatigue (SLEEP) and Executive Functioning (EF) scales. Importantly, greater than 20 percent families disagreed about whether patients’ symptoms were severe enough to reach clinical cutoffs on each scale (IMP - 25%, COG - 25%, EF - 27%, SLEEP - 24%, MBX - 20%). Where families disagreed, there was a higher proportion of families where children scored themselves as clinically affected on the COG and EF scales and a higher proportion where parents rated the child as clinically affected on the MBX. Proportions were similar for SLEEP and IMP scales.
Conclusions: While the majority of parents and children agree about the extent to which children’s quality of life is affected by epilepsy, there is a substantial minority that does not. Further research is needed to determine how such disagreement should be addressed in clinical practice and whether any familial or other factors are related to disagreement. Understanding the extent to which quality of life is affected by epilepsy is important in determining appropriate treatment plans and evaluating the effectiveness of various interventions.
Funding: None
Surgery