Pediatric Epilepsy Learning Healthcare System Quality of Life Questions (PELHS-QOL-2), a Novel QOL Instrument for Use in Clinical Care
Abstract number :
2.357
Submission category :
13. Health Services / 13A. Delivery of Care, Access to Care, Health Care Models
Year :
2019
Submission ID :
2421800
Source :
www.aesnet.org
Presentation date :
12/8/2019 4:04:48 PM
Published date :
Nov 25, 2019, 12:14 PM
Authors :
Zachary M. Grinspan, Weill Cornell Medicine; Pooja Shah, Weill Cornell Medicine; Renee A. Shellhaas, University of Michigan; Margaret Storey, DePaul; Michelle Yun, Weill Cornell Medicine; Cassie Turnage, University of Virginia; Erika Axeen, University of
Rationale: In children, epilepsy is associated with significant reduction of quality of life, for example due to medication-related side effects, reduced academic performance, poor social adjustment, and psychiatric comorbidities. Measuring quality of life at the point of care can improve provider-patient communication and caregiver satisfaction, as well as identify important comorbidities that may change clinical management. Generic health-related quality of life instruments compare children with epilepsy to healthy children but may not detect clinically relevant changes, necessitating the use of disease-specific instruments. While existing epilepsy measures are well-established, they can be lengthy and thus cumbersome to administer in clinical practice. Furthermore, given the level of detail of these instruments, it can be difficult for a clinician to identify areas that can be tangibly improved during the limited time of a routine visit. Methods: We performed a prospective study to compare a novel set of quality of life questions versus existing measures. We created a two-item quality of life instrument, the PELHS-QOL-2, through a multi-stakeholder process involving multiple phone calls and in-person meetings with physicians, parents, researchers, and individuals with epilepsy (Table 1a). These measures were developed for use in the Pediatric Epilepsy Learning Healthcare System (PELHS), a consortium of academic pediatric epilepsy centers that collect and analyze electronic health data for children with epilepsy. We hypothesized that our novel questions would reliably capture quality of life in pediatric epilepsy patients, using QOLCE-55, G-QOLCE, PESQ, and GASE as comparators (Table 1b). To test this hypothesis, we collected quantitative responses and qualitative feedback about these instruments as part of routine clinical care at four centers in both inpatient and outpatient settings. Results: Across all four sites, 168 participants were recruited, and 151 (90%) participants responded to the survey questions. Median age was 10 years [IQR 6 - 14; range 0 - 19], and half (51%) were male. One-third (34%) of surveys were administered at inpatient facilities. There were moderate correlations between PELHS-QOL-Seizures and QOLCE-55 (rs= 0.50, p < 0.0001, n = 140) and G-QOLCE (rs= -0.47, p < 0.0001, n = 139), as well as PELHS-QOL-Medications and PESQ (rs= -0.54, p < 0.0001, n = 117) (Figure). Qualitatively, parents reported the QOLCE-55 relieved anxiety by allowing them to systematically express their concerns in great detail; however, many found it difficult to answer because their children had multiple neurologic comorbidities, or questions did not apply because their children were too young. Many parents deemed the PESQ to be useful, but several noted that it would need to be administered in conjunction with another instrument in order to adequately assess quality of life. G-QOLCE was liked for its brevity but disliked for its vagueness. PEHLS-QOL-2 was similarly liked for its brevity while allowing parents to isolate the impact of epilepsy on quality of life in a wider age range. Conclusions: The PELHS-QOL-2 correlates with existing well-established HRQOL instruments and merits further study. Key potential advantages of PELHS-QOL-2 is that the instrument is short, specific, and broadly applicable to the pediatric epilepsy community.In ongoing work, we are conducting additional analysis of QOLCE-55 subscales, PESQ subscales, and GASE to further characterize responses to these HRQOL instruments. A short, validated set of QOL questions like the PELHS-QOL-2 has the potential to empower time-restricted clinicians to evaluate quality of life as part of routine practice. Funding: No funding
Health Services