Advances in medicine and improved delivery of healthcare have led to continued decrease in mortality for patients suffering acute or critically. However, surviving an episode of acute or critical illness is far from the end of the patient journey, with the potential development of new chronic diseases and/or permanent disability. Survivorship has been termed one of the defining problems of healthcare services in the 21st century. Unlike survival (not dying), survivorship refers to the quality of the life saved, in keeping with the World Health Organisation’s definition of wellness “The realisation of the fullest potential of an individual physically, mentally, socially, spiritually and economically”.
In the setting of surviving illness this can be measured by Health-Related Quality of Life (HRQoL) most commonly assessed through patient reported outcome (PRO) measures. PROs assess the impact of care delivered from the patient perspective (and therefore indirectly quality of care), highlighting both practises and services that are good and those in need of improvement. We have selected two populations at the Royal London Hospital (RLH) that are at risk of impaired HRQoL a) Survivors of critical illness, both with and without COVID-19, b) patients undergoing emergency laparotomy who may or may not require critical care support.
The feasibility and acceptability of electronic HRQoL measurements in our local population is unknown, as is the impact of digital inequality, hence the requirement for this study, which could prove very timely. In designing follow-up services, patients have clearly expressed the need for transitioning to shared responsibility as opposed to patriarchy. The qualitative part of this research wants to aim at research and services with maximum patient and public participation, thus empowering them to design the follow-up services which are tailored to their needs in terms of acceptability and feasibility.
We have selected two populations at the Royal London Hospital (RLH) that are at risk of impaired HRQoL a) Survivors of critical illness, both with and without COVID-19, b) patients undergoing emergency laparotomy who may or may not require critical care support.
A part of this study will be Service evaluation. We will be evaluating the outcomes using the WHODAS scale, PICUPS tool, EQ5D and the SF-36 questionnaire. The WHODAS 2.0 1 covers the aspects of Cognition, Mobility, Self-care, and Getting along– interacting with other people, Life activities and Participation/ community activities. The PICUPS2 (Post-ICU Presentation Screen – Community version -PICUPS-Community is a brief functional screening tool to inform the rehabilitation and support needs of patients following treatment in intensive care – or indeed any acute severe illness or injury.
The second part of the study will be focusing on qualitative research, focusing on the patients’ perspective on whether the questionnaires are acceptable, relevant, feasible and sufficient enough to cover the important aspects or patient recovery. This will eventually help us achieve patient targeted services and improve patient recovery.
We aim at improving patient reported outcomes that are being implemented in routine practise. These data will identify the barriers and enablers for the uptake of electronic PRO, by the service users, considering factors like age, gender and ethnicity and digital inequality