Title: The development and validation of a patient-reported outcome measure for older people with frailty and urgent care needs.
Funder: Department of Health and Social Care

Abstract: BACKGROUND Three million Emergency Department (ED) attendances annually are by older people with frailty. These people have complex physical and social needs and are vulnerable to poorer healthcare outcomes. Fast-flowing protocolised systems must incorporate individualised care in order to best-serve people with multiple problems. Healthcare quality is typically appraised with service metrics such as ED length of stay. Many NHS providers use Patient-Reported Outcome Measures (PROMs) in research and service development. PROMs measure person-centred outcomes and drive improvement by enabling inter-provider comparison. There is no PROM for older people with frailty and urgent care needs. OBJECTIVES This Fellowship will develop and validate an instrument for these people and evaluate its feasibility in urgent care settings for a population with complex health needs. The impact on patient activation by using PROMs to communicate preferred healthcare outcomes will be explored. METHODS Work-package 1: qualitative interviews generating a conceptual framework. 35 older people with frailty and recent emergency care attendance will be interviewed for themes of symptoms and wellbeing. Familiar caregivers will be involved if participants wish. Recruitment will be purposive and guided by lay collaborators to represent a diverse group. Interview transcripts will be analysed using a blended approach, categorising and compiling codes into a framework based upon systematic literature review. A scoping review of generic and condition-specific PROMs relevant to frailty will be updated. Instrument items (questions) will be assimilated from existing tools or formulated to capture the range of preferred symptom and wellbeing outcomes. The draft PROM will be shared in later interviews. Item content validity and internal reliability (relevance and consistency) will be tested and improved iteratively. The usability by people with frailty will be evaluated. Work-package 2: cohort validation study. The instrument will be field-tested in a multi-site, multi-ethnic cohort study of 300 participants. During urgent care episodes, participants will complete the preliminary PROM and validated measures of function and patient activation. Their responses and feedback will be analysed using psychometric and qualitative methods. Implementation factors including acceptability and administration time will be assessed. Analysis will be supported by a consultation panel of PPI collaborators and expert clinicians and psyshometricians. Responsiveness (clinical meaningfulness), internal consistency (correlation within test domains), and construct validity (correlation with health state) will be examined. Work-package 3: qualitative interviews evaluating impact. Fifteen patient and clinician dyads who used the PROM will be interviewed about instrument usability, the value of data in clinical practice, and the impact on management decisions. The use of PROMs to elicit and communicate healthcare preferences will be explored, and a protocol drafted for further evaluation. DISSEMINATION The feasibility and validity of a PROM for older people with frailty and urgent care needs will be reported in academic journals and in a newsletter to ageing-related charities and patient involvement groups. The PROM itself will be shared widely via excellent existing national and international links including NHS England policy bodies, the Acute Frailty Network, a geriatric emergency medicine inter-specialty Urgent Care group, and the European Societies for Emergency Medicine and Geriatric Medicine.

Lay abstract: A 'Patient-Reported Outcome Measure' (PROM) for older people who have frailty and need acute hospital care will be developed during this Fellowship. 'Frailty' is loss of resilience to recover from health problems. Frailty is more common among older people, and is associated with poorer health outcomes. NIHR have identified frailty as a research priority. Most people with acute health problems enter hospital through Emergency Departments (ED), where care typically follows 'pathways' determined by patients' symptoms or diagnosis. People with frailty often have multiple problems and are best served by protocols which incorporate individualised care. PATIENT-REPORTED OUTCOMES NHS quality of care is generally measured against targets such as the length of time a person spends in the ED. PROMs are short questionnaires that can be used in addition to existing quality metrics. PROMs measure quality from the patients' point of view. Researchers and managers can use PROMs to measure the impact of new ideas on what matters to patients: for instance, the impact of introducing an ED physiotherapist service could be monitored in terms of improvement in pain, faster recovery, or better strength, as well as existing time and financial targets. The data helps to improve care by comparing different systems. Shared decision-making is when doctors explain the possible treatments, risks and benefits to a person and perhaps their family, and together they form an action plan. Patients have a basic right to be involved in care decisions and have their views and priorities considered. This is the basis of individualised care, which has been shown to improve outcomes for people who have frailty. PROMs can support shared decision-making by helping a person to consider their priorities and goals, and to help nurses and doctors to understand these. PROMs are routinely used in many parts of the NHS, including hip surgery and asthma, but there are no existing tools for older people with frailty and urgent care needs. APPROACH The first stage is to understand the range of outcomes that older people seek from urgent care. I will interview people who have recently attended an ED. If they wish, people's relatives will be recruited to support communication and understanding. A diverse sample will be recruited, supported by the local Centre for Black and Minority Ethnic (BME) Health. I will work closely with clinical and measurement experts to design a PROM questionnaire to understand people's symptoms and the care that they feel is most important. Lay members from an ageing-related research patient involvement group will help ensure that the tool is accessible for users. I will test the PROM questionnaire by inviting 300 patients to complete it during their acute hospital episode. Improvements will be based on ongoing feedback collection. I will particularly examine whether such tools can reliably be used in busy urgent care settings by older people with frailty, who more often experience communication barriers including visual or cognitive impairment. The tool's accuracy in recording users' feelings will be reported statistically. If people wish, the information about their symptoms and goals will be shared with their nurse and doctor. Patients and clinicians will be interviewed about the effect this data has on the delivery of individualised care. DISSEMINATION This PROM could help healthcare professionals to understand what is important to people they care for. I will publish reports of the tool's validity in academic journals and in a newsletter for ageing-related charities. The tool itself will be shared widely through international clinical groups. I foresee such a PROM being routinely used in EDs and acute geriatrics wards to improve quality of care in a way that matters to patients.

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