Title: Understanding and improving community-based palliative care outside of normal working hours.
Funder: Marie Curie

Abstract: Most people prefer care at home1. However provision of community specialist palliative care (SPC) outside of normal working hours (‘out-of-hours’) in the UK is highly variable2. Service components differ markedly3 2, 4 5 and discontinuity of care is common6. Without adequate ‘out-of-hours’ support, patients are at risk of being ‘crisis-managed’ with emergency department (ED) attendances and unplanned admissions7. Two-thirds of ED attendances are ‘out-of-hours’8, SPC patients commonly attend ED for; pain, breathlessness, vomiting, and weakness, with > 50% resulting in unplanned admissions9. Frequent ED visits indicates poor end-of-life care10, are associated with increased patient/family distress and dissatisfaction, and worse bereavement outcomes11. ‘Out-of-hours’ care is the top research priority from the James Lind Alliance, yet it has not been addressed12. A literature review found that models of SPC are not defined13. We developed criteria to describe/compare models of SPC14, but this needs further development for ‘out-of-hours’ provision, which is complex and combines specialist and generalist community services. The lack of a consistent method to delineate models of ‘out-of-hours’ care is leading to; poor quality evaluations of services, uncertainty over effectiveness/cost-effectiveness, and inability to advance the state of the science. This sequential three phase mixed-methods study aims to characterise different models of ‘out-of-hours’ community-based SPC, develop a typology for models, and compare the experiences of patients/families receiving differing models of ‘out-of-hours’ care. Methods: Phase 1: Systematic literature review Aim: To systematically review evidence on effectiveness and cost-effectiveness of models of ‘out-of-hours’ community SPC. Objectives: 1a. To describe the reported components of out-of-hours community SPC including which components are most effective 1b. To determine their clinical effectiveness in terms of patient & family-reported outcomes, 1c. To determine cost-effectiveness 1d To identify gaps in the evidence Methods: Systematic review of quantitative and qualitative studies from electronic databases and grey literature. Data will be reported using description, narrative synthesis and where appropriate meta-analysis following PRISM guideliness15. Output/impact Phase 1: Publication, policy brief, evidence of criteria/components to inform Phase 2. Phase 2: Characterising models Our criteria to define models of palliative care14, do not extend to variations in generalist/primary provision which influence how models of ‘out-of-hours’ community SPC operate. Therefore we will: Aim: To characterise existing UK ‘out-of-hours’ community-based SPC models and generate a typology of models. Design: A multicentre, sequential mixed methods study (focus groups, Delphi study, and structured interviews) Methods: 2a. Conduct two focus groups16 with patients/families and two with SPC professionals to determine components required for effective and integrated ‘out-of-hours’ care. 2b. Undertake a Delphi study17 to refine and rank components according to their importance for delivery of effective ‘out-of-hours’ care. 2c. Apply our existing SPC model criteria14 and the newly developed components using structured interviews with 15-20 sites to understand what components are provided by generalist/primary services, by SPC, by both, or not at all, to produce a typology of community-based ‘out-of-hours’ care and classify models of SPC. Output/impact Phase 2: Publication of typology of ‘out-of-hours’ palliative care, including ranked importance of components to inform Phase 3. Phase 3: Patient experience Aim: To explore and contrast patients’ and families’ experiences of different models of ‘out-of-hours’ community-based palliative care, and elucidate drivers of service utilisation (ED attendances and unplanned admissions) and preferred place of care Design: A multicentre qualitative study with patients/family purposively sampled from three SPC services with differing models of ‘out of hours’ care (using Phase 2 definitions). Methods: Patient and family dyads will be purposively sampled (age, gender and cancer/non-cancer, Phase of Illness21) to allow for case-mix variations. Interviews will begin asking patients about their service utilisation. This will guide the interviews to explore patient/family experiences of ‘out-of-hours’ care and the effects on preferred and actual place of care. We will interview patients and family dyads from each model of care until data saturation (anticipating ~20 dyads for each model). Output/impact Phase 3: Publication on patients’/families’ experience from different models of ‘out-of-hours’ community-based care, and policy brief. Proposed Findings This study will deliver a systematic review, typologies and experiences of care, moving forward the state of science providing essential evidence for health policy decision-makers to make informed decisions on service provision. This will move the state of science to readiness for robust experimental comparative designs.

Lay abstract: Community-based specialist palliative care services usually only run a full service between Monday–Friday, 9-5pm. This is only a quarter of the time; for the remaining three-quarters of their time, patients and their families/carers must rely on ‘out-of-hours’ services. Care outside usual working hours is very variable depending on where someone lives. Some specialist palliative care teams have no ‘out-of-hours’ provision, so if patients or their families have urgent questions or an emergency, they must contact the on-call GP who can be hard to access and often does not know them, or attend an emergency department. This can result in a costly strain on accident and emergency departments and be very distressing for patients and their families/carers. When specialist palliative care services do have ‘out-of-hours’ services, they are often delivered in different ways (e.g. by phone, or in person, sometimes by nurses, and sometimes by doctors). We do not know which combination of ‘out-of-hours’ care best meets patients’ and families’ needs. This is a three phase study. In phase 1) we will examine published evidence on different ways of providing community palliative care. In phase 2) we will develop a standard way to describe the different ‘models of care’ currently available talking with patient, family/ carers and staff members to identify important components for good quality ‘out-of-hours’ care. We will compare and contrast sites’ models of care using the standard criteria we have developed and from this we will identify differing ‘out-of-hours’ models of care. In phase 3) we will interview patients and family caregivers about their experiences of care outside normal working hours from the three identified services in phase 2. We will ask patients and families about any unmet needs outside of working hours and will consider how the different models of care affect the patients and family caregivers experience and their ability to remain in their preferred place of care. The impact of the study will be wide-reaching; it will provide insight into the variability of current services, highlight areas of concern from patients, families and staff, and improve care for over 125,000 people seen annually by specialist palliative care services in the UK, through i) providing a detailed classification to understand and define ‘out-of-hours’ palliative care which can be used nationwide, and ii) give us invaluable insights into what works best for patients and their families in ‘out-of-hours’ care and why.

Research activity codes: 7.2 END OF LIFE CARE;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE