ABSTRACT
Aims: Patients with chronic and end-stage kidney Disease often experience a high symptom burden and diminished health-related quality of life. Data on these constructs can be collected, directly from patients, and measured using electronic Patient Reported Outcomes (ePROs). Responses can be used at an individual level to facilitate optimal care and shared-decision making. At an aggregate level, these data can be used for audit and benchmarking to improve services. This research aims to identify existing and emerging ePRO systems used in nephrology, to explore and summarize key system characteristics, and identify the core factors which contribute to successful implementation. Method(s): 3-phase mixed-methods study: Semistructured review to identify ePRO Systems used in nephrology that assess ePROs and summarize patients' responses to their care provider. Web-based survey of system experts to identify key system characteristics: including administration, levels of automation, integration into existing systems, reporting and management of patient safety.Optional follow-up semi-structured interviews, with system experts, to explore survey responses.The semi-structured interviews were analyzed using Codebook Thematic Analysis utilizing domains from the Consolidated Framework for Interventional Research (CFIR) allowing comparison of the ePRO Systems and associated implementation strategies to highlight best practice. Result(s): Fifteen nephrology ePRO systems were identified in North America, Europe and Australia. Ten experts completed the survey (nine full responses and one partial response). Remote follow up interviews were undertaken with seven respondents.Key components of system characteristics were summarized and compared including: (i) purpose, (ii) population, (iii) PRO measures used, (iv) levels of automation, (v) reporting, (vi) integration into existing workflow and (vii) links to electronic health records/national registries. Common barriers to implementation included user engagement, accessibility issues and the effects of COVID on implementation plans and evaluation. Important facilitators were early and sustained patient involvement in system design and implementation, clinician advocates and expanding existing electronic systems to integrate ePROs. Conclusion(s): An increased understanding of the range of features and functionality of ePRO systems, including potential barriers and facilitators to use and integration in existing work flows, will help ensure such systems are optimized to improve care and maximize outcomes for patients with chronic and end-stage kidney disease.
ABSTRACT
Purpose: This study explored the experiences of Irish emergency medical services (EMS) first responders during the first nationwide restrictions to curb the spread of COVID-19. Design/methodology/approach: A systematic literature review (SLR) of research into healthcare workers' and first responders' experiences during the COVID-19 and 2003 SARS pandemics was performed. The SLR informed the content of an online questionnaire distributed via the Irish Pre-Hospital Emergency Care Council to 2,092 first responders on its live register. Data analysis used both descriptive and content analysis. Findings: EMS first responders faced many challenges including PPE quality, training on its use, issues with decontamination facilities, and organisational effectiveness. Emotional challenges included the anxiety experienced, the impact on families, and ethical dilemmas confronted related to patient care. Positive findings also emerged, such as first responders' dedication to working through the pandemic, collegiality, and the community goodwill displayed. Originality/value: While investigations of the impact of the COVID-19 pandemic on healthcare workers have been undertaken globally, studies focussing exclusively on the experiences of EMS first responders have been rare. This study addressed this knowledge gap, providing an insight into the challenges and successes experienced by first responders and identifying opportunities for learning that can be applied to future public health emergencies. © 2022, Gavin David Brown, Ann Largey, Caroline McMullan, Gráinne O'Shea and Niamh Reilly.