Title: Actionable processes of care for persistent critical illness: Patient and family-centered performance measures.
Funder: Health Education England

Abstract: Background Persistent critical illness (PCI) affects a small but growing population of patients admitted to intensive care, is associated with a high burden of symptoms impeding recovery, and contributes to higher costs for the NHS. It occurs when the condition which originally required intensive care resolves, but a patient is still dependent on intensive care facilities, such as ventilation. Although PCI is thought to account for approximately 10% of the intensive care population, there is a poor understanding of what constitutes high quality care for PCI patients. This may result in poor identification of PCI-associated problems and therefore longer-term costs both to the patient and the NHS to aid recovery, and decreased patient and family member satisfaction.Aims Stage 1 - To identify actionable processes of care relevant to patients with PCI as described by ICU survivors, their family members, and clinicians. Stage 2 - To prioritise these actionable processes of care in terms of their importance to patients, their families, and clinicians. Stage 3 - To create, validate and pilot a checklist to improve the quality of care for patients with PCI. Research QuestionsStage 1 - What actionable processes of care are important to patients with PCI, their families and clinicians?Stage 2 - Which of these actionable processes of care are most important to patients with PCI, their families and clinicians?Stage 3 - Can these prioritised actionable processes of care be used to create a checklist that when used, improves the quality of care for patients with PCI and their families? Plan This project will be carried out in three stages. Stage 1 Identifying potential actionable processes of care Following a systematic review of the literature prior to this fellowship commencing, interviews will be conducted with patients who have experienced PCI, family members and clinicians working with PCI. These semi-structured interviews will explore what actionable (i.e. amenable to change) processes of care these three groups identify as important during an episode of PCI. Stage 2 Consensus building All actionable processes of care identified during the systematic review and interviews will be brought forwards to a consensus-setting exercise, using a modified 2-round Delphi process and an adapted nominal group technique as described by the James Lind Alliance, a non-profit making initiative designed to bring patients and clinicians together to prioritise topics of health research. The Delphi process will use electronic surveys to determine the top 30 (or less) most important actionable processes of care, and these 30 will be discussed in a face-to-face meeting to determine the top 10. Stage 3 Checklist development The most important actionable processes of care will be used to design a checklist of care tasks to be used by clinicians caring for patients with PCI. This checklist will undergo validation and pilot testing in a London hospital as part of the fellowship, with the aim of wider dissemination and validation after the fellowship.Summary of Potential Benefit to Patients and the NHS The checklist produced will improve the standard of care for patients with PCI and their families, by clearly articulating the most important care tasks contributing to high quality, holistic care. This will contribute to higher patient and family satisfaction with care, and a future goal will be to create a satisfaction questionnaire to test this hypothesis. It is intended that the checklist will aid early recognition of problems associated with PCI such as anxiety and muscle weakness, which will result in quicker referrals to specialists such as psychological services or physiotherapy, therefore decreasing the long-term burdens of such problems on patients, their families and the wider NHS.

Lay abstract: Background and Rationale Although survival rates of people admitted to an intensive care unit (ICU) have improved in recent decades, some critically ill patients experience persistent (also termed chronic) critical illness. This is characterised by long stays in intensive care units, wards and rehabilitation facilities, ongoing problems with physical function, and often wider issues such as anxiety and depression and difficulties with thinking and reasoning. Family members also experience significant physical and psychological burden associated with ICU admission, often describing substantial emotional distress.Patients are considered to have persistent critical illness when they have recovered from the acute critical illness that required ICU admission but do not improve, recover, or die and continue to require ICU admission for more than a week. Although these patients make up a small proportion of ICU patients, they use a considerable amount of resources and ICU bed days. These patients also experience higher rates of death and are less likely to be able to return home after hospital discharge.Patients with persistent critical illness require different care to that which they received at the beginning of their ICU stay when they were acutely unwell. Instead, the focus of their ICU stay changes, for example using rehabilitation strategies to promote return of movement and walking as well as the ability to talk; gradual reductions in the amount of support from the breathing machine (termed ventilator weaning); management of psychological problems such as depression and anxiety; and in some cases maintaining comfort for patients who will not survive their illness.To date, strategies shown to be successful in improving quality of care in ICU (such as daily checklists of patient care activities that improve outcomes and decrease adverse event) focus on the acute stage of ICU admission. Therefore these strategies are not useful for patients with persistent critical illness. Little research has been done to describe what high-quality care should look like for these patients and their families, as well as the development of tools to help with delivery of high quality care.Aims To find out what aspects of care are important to survivors of persistent critical illness, their family members and clinicians for creating a high-quality ICU experience. These aspects of care will be used to create a checklist to be used by clinicians looking after these patients and their families. Methods We will use methods that involve patients and relatives in the design of the services they receive (known as experience-based co-design) and guidance from the James Lind Alliance, an organisation that aims to ensure that research is useful and relevant to patients and their relatives. To generate a list of potential quality indicators we will conduct: video interviews of persistent critical illness survivors and family members to generate a touch-point video (a composite of crucial moments from all videos that combine to describe the overall experience of patients and their relatives); and clinician interviews. We will then use consensus building and prioritization ranking methods with the involvement of the James Lind Alliance to identify those items considered of greatest importance to key stakeholders. We will use these data to develop a daily checklist, and we will pre-test and then pilot test the checklist in two centres.Patient and public involvement Patients and their families who have experience of persistent critical illness have informed the research questions and methods used, and will help to design the patient information resources used throughout the study. Interviews with patients and family members will generate the list of quality indicators, and patients and family members will be part of the consensus-setting exercise which produces the final outcomes of the study.Dissemination The results of this project will be submitted to peer-reviewed journals for publication, and will be shared at national and international conferences. Results will also be shared with the Guy's, St. Thomas' and King's College Hospital Respiratory Research Patient Panel, the James Lind Alliance, and UK ICU patient charities such as ICUSteps.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE