Dataset Information

Patient-Reported Outcomes (PROs) in Acute Symptomatic Seizure (ASyS) Versus Patients With Established Epilepsy.

ABSTRACT:

Purpose

Acute symptomatic seizures (ASyS) are common in critically ill patients. It is unknown how ASyS affect posthospitalization self-reported health compared to patients with established epilepsy.

Methods

This is a retrospective cohort study from 2010 to 2018. Patients were identified by an institutional epilepsy database (Ebase). Patient-reported outcome measures (PROMs) were completed as part of standard of care and included the number of seizures in the prior 4 weeks, Liverpool Seizure Severity Scale (LSSS) ictal score, quality of life in epilepsy (QOLIE)-10, Patient Health Questionnaire-9 scales, and the PROM Information System Global Health (PROMIS-GH) scale. Mixed-effects models were created to adjust for age, sex, and race and to examine score trajectory over the 1 year after baseline.

Results

A total of 15 311 established epilepsy patients and 317 patients with ASyS were identified. When compared to patients with epilepsy, patients with ASyS were older, mostly male, more often black, and had worse baseline scores on the QOLIE-10 (P < .001), PROMIS-GH Physical Health (P = .037), and LSSS Ictal (P = .006) scales. Patient-Reported Outcomes Measurement Information System Mental and Physical Health T-scores were worse than the general population (T-score = 50) for patients with both ASyS (44 and 42.5, respectively) and epilepsy (44.2 and 44.6, respectively). After adjusting for age, sex, and race, patients with ASyS reported 38% fewer seizures (P = .006) yet worse QOLIE-10 score (P = .034). We found that scores improved over time for all PROMs except for PROMIS-GH Mental Health.

Conclusion

Compared to patients with epilepsy, patients with ASyS had fewer seizures but worse epilepsy-specific quality of life. Independent of group status, scores generally improved over time.

SUBMITTER: Newey CR

PROVIDER: S-EPMC7271623 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BACKGROUND:The successful implementation of patient-reported outcomes (PROs) in clinical routine faces many challenges, first and foremost the lack of consideration thereof in the patient care process. The aim of this study will be to first identify relevant barriers and facilitators and then design suitable implementation strategies which will be evaluated to improve the effectiveness of a PRO measure assessment in inpatient and outpatient cancer routine care. METHODS:During the preparation phase, interviews with oncological patients (N = 28) and medical staff (N = 4) as well as focus groups with medical staff (N = 18) across five different departments caring for cancer patients were conducted. On the basis of these, qualitative content analysis revealed relevant barriers and facilitators for implementation of PROs in cancer care. Subsequently, implementation strategies and a model of implementation were developed. In the study phase, implementation strategies will be evaluated based on nine different implementation outcomes in five different oncological clinics. Evaluation of the implementation process will take place during three months in each clinic and data will be conducted pre, while and post implementation of the PRO measure. Therefore a sample size of 60 participants of whom 30 staff members and 30 participants will be questioned using existing and newly developed implementation outcome evaluation instruments. DISCUSSION:Key to improving the effectiveness of PRO assessment in the time-critical clinical environment is the utilization of easy-to-use, electronic PRO questionnaires directly linked to patients' records thereby improving consideration of PROs in patient care. In order to validate the effectiveness of this implementation process further, an evaluation parallel to implementation following an observational study design with a mixed-methods approach will be conducted. This study could contribute to the development of adequate evaluation processes of implementation of PROs to foster sustainable integration of PRO measures into routine cancer care. TRIAL REGISTRATION:This study was registered at Open Science Framework (https://osf.io/y7xce/).