Views of patients with progressive illness and carers about the role of digital advance care planning systems to record and share information: A qualitative study.

BACKGROUND: Digital approaches are being explored internationally to support the elicitation, documentation and sharing of advance care planning information. However, the views and experiences of patients and carers are little understood, impeding the development and impact of digital approaches to strengthen palliative and end-of-life care. AIM: To explore perspectives of patients with progressive illness and their carers on digital approaches to advance care planning, anticipated impact from their use and expectations for their future development. DESIGN: A qualitative study employing thematic framework analysis of data collected from focus groups and semi-structured interviews. SETTING/PARTICIPANTS: Purposive sample of 29 patients and 15 current or bereaved carers in London and West Yorkshire from hospice settings, non-governmental support and advocacy groups, and care home residents. RESULTS: Four generated themes included: 1. 'Why haven't you read what's wrong with me?'; uncertainty around professionals' documenting, sharing and use of information; 2. The art of decision-making relies on the art of conversation; 3. The perceived value in having 'a say in matters': control and responsibility; 4. Enabling patient and carer control of their records: 'custodianship is key'. CONCLUSIONS: Lived experiences of information sharing influenced trust and confidence in digital advance care planning systems. Despite scepticism about the extent that care can be delivered in line with their preferences, patients and carers acknowledge digital systems could facilitate care through contemporaneous and accurately documented wishes and preferences. There remains a need to determine how independent patient and public-facing advance care planning resources might be integrated with existing digital health record systems.

Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops.

BACKGROUND: Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that considers integration of primary care and palliative care services is rare. AIM: To address the questions: 'how can inequalities in access to community palliative and end of life care be improved through the integration of primary and palliative care, and what are the benefits?' DESIGN: A theory-driven realist inquiry with two stakeholder workshops to explore how, when and why inequalities can be improved through integration. Realist analysis leading to explanatory context(c)-mechanism(m)-outcome(o) configurations(c) (CMOCs). FINDINGS: A total of 27 participants attended online workshops (July and September 2022): patient and public members (n = 6), commissioners (n = 2), primary care (n = 5) and specialist palliative care professionals (n = 14). Most were White British (n = 22), other ethnicities were Asian (n = 3), Black African (n = 1) and British mixed race (n = 1). Power imbalances and racism hinder people from ethnic minority backgrounds accessing current services. Shared commitment to addressing these across palliative care and primary care is required in integrated partnerships. Partnership functioning depends on trusted relationships and effective communication, enabled by co-location and record sharing. Positive patient experiences provide affirmation for the multi-disciplinary team, grow confidence and drive improvements. CONCLUSIONS: Integration to address inequalities needs recognition of current barriers. Integration grounded in trust, faith and confidence can lead to a cycle of positive patient, carer and professional experience. Prioritising inequalities as whole system concern is required for future service delivery and research.

Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework.

BACKGROUND: Telephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. AIM: To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services. DESIGN: A cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework. SETTING/PARTICIPANTS: Professionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. RESULTS: Seventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability: Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion: It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities: Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care: Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning: Sustained funding was often an issue for charitably funded organisations. CONCLUSIONS: Our novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience.

The effectiveness of out-of-hours palliative care telephone advice lines: A rapid systematic review.

BACKGROUND: People with palliative care needs and their carers often rely on out-of-hours services to remain at home. Policymakers have recommended implementing telephone advice lines to ensure 24/7 access to support. However, the impact of these services on patient and carer outcomes, as well as the health care system, remains poorly understood. AIM: To evaluate the clinical- and cost-effectiveness of out-of-hours palliative care telephone advice lines, and to identify service characteristics associated with effectiveness. DESIGN: Rapid systematic review (PROSPERO ID: CRD42023400370) with narrative synthesis. DATA SOURCES: Three databases (Medline, EMBASE and CINAHL) were searched in February 2023 for studies of any design reporting on telephone advice lines with at least partial out-of-hours availability. Study quality was assessed using the Mixed Methods Appraisal Tool, and quantitative and qualitative data were synthesised narratively. RESULTS: Twenty-one studies, published 2000-2022, were included. Most studies were observational, none were experimental. While some evidence suggested that telephone advice lines offer guidance and reassurance, supporting care at home and potentially reducing avoidable emergency care use in the last months of life, variability in reporting and poor methodological quality across studies limit our understanding of patient/carer and health care system outcomes. CONCLUSION: Despite their increasing use, evidence for the clinical- and cost-effectiveness of palliative care telephone advice lines remains limited, primarily due to the lack of robust comparative studies. There is a need for more rigorous evaluations incorporating experimental or quasi-experimental methods and longer follow-up, and standardised reporting of telephone advice line models and outcomes, to guide policy and practice.

The influence of care home registration type and size on senior care leader's confidence to provide palliative and end-of-life care: an explanatory sequential mixed methods study.

BACKGROUND: Care home staff are key providers of palliative and end-of-life care. Yet, little is known about how care home characteristics can influence care leader's confidence in their ability to provide optimal palliative and end-of-life care. AIM: To understand the influence of care home registration type (nursing, residential or dual registered) and size on senior care leader's confidence to provide palliative and end-of-life care. DESIGN: An explanatory sequential mixed methods study comprising an online cross-sectional survey (including the Palliative Care Self-Efficacy Scale) and qualitative individual interviews. Analysis of survey data used a multivariate logistic regression and qualitative interview data used Framework Analysis. A 'Following the Thread' method was undertaken for data integration. SETTING/PARTICIPANTS: UK care home senior care leaders, purposively sampled by registration type, size and geographical location. RESULTS: The online survey (N = 107) results indicated that nursing home senior care leaders had higher confidence scores on the Palliative Care Self-Efficacy Scale than residential care home leaders (aOR: 3.85, 95% CI 1.20-12.31, p = 0.02). Care home size did not show effect when adjusting for registration type (medium - aOR 1.71, 95% CI 0.59-4.97, p = 0.33; large - aOR 0.65, 95% CI 0.18-2.30, p = 0.5). Interviews (n = 27) identified three themes that promote confidence, (1) 'feelings of preparedness' stemming from staff expertise and experience and care home infrastructure, (2) 'partnership working' with external services as a valued member of the multidisciplinary team, and (3) a shared language developed from end-of-life care guidance. CONCLUSION: Care home senior care leader's confidence is influenced by care home characteristics, particularly availability of on-site registered nurses and the infrastructure of large care homes. All care home leaders benefit from training, working with external, multidisciplinary teams and use of guidance. However, mechanisms to achieve this differed by care home type and size. Further exploration is needed on successful integration of palliative care services and interventions to enhance confidence in residential care homes.

Factors Influencing the Implementation of Digital Advance Care Planning: Qualitative Interview Study.

BACKGROUND: Palliative care aims to improve the quality of life for people with life-limiting illnesses. Advance care planning conversations that establish a patient's wishes and preferences for care are part of a person-centered approach. Internationally, electronic health record systems are digital interventions used to record and share patients' advance care plans across health care services and settings. They aim to provide tools that support electronic information sharing and care coordination. Within the United Kingdom, Electronic Palliative Care Coordination Systems (EPaCCS) are an example of this. Despite over a decade of policy promoting EPaCCS nationally, there has been limited implementation and consistently low levels of use by health professionals. OBJECTIVE: The aim of this study is to explore the factors that influence the implementation of EPaCCS into routine clinical practice across different care services and settings in 2 major regions of England. METHODS: A qualitative interview study design was used, guided by Normalization Process Theory (NPT). NPT explores factors affecting the implementation of complex interventions and consists of 4 primary components (coherence, cognitive participation, collective action, and reflexive monitoring). Health care and social care practitioners were purposively sampled based on their professional role and work setting. Individual web-based semistructured interviews were conducted. Data were analyzed using thematic framework analysis to explore issues which affected the implementation of EPaCCS across different settings at individual, team, organizational, and technical levels. RESULTS: Participants (N=52) representing a range of professional roles were recruited across 6 care settings (hospice, primary care, care home, hospital, ambulatory, and community). In total, 6 themes were developed which mapped onto the 4 primary components of NPT and represented the multilevel influences affecting implementation. At an individual level, these included (1) EPaCCS providing a clear and distinct way of working and (2) collective contributions and buy-in. At a team and organizational level, these included (3) embedding EPaCCS into everyday practice and (4) championing driving implementation. At a technical level, these included (5) electronic functionality, interoperability, and access. Breakdowns in implementation at different levels led to variations in (6) confidence and trust in EPaCCS in terms of record accuracy and availability of access. CONCLUSIONS: EPaCCS implementation is influenced by individual, organizational, and technical factors. Key challenges include problems with access alongside inconsistent use and engagement across care settings. EPaCCS, in their current format as digital advance care planning systems are not consistently facilitating electronic information sharing and care coordination. A redesign of EPaCCS is likely to be necessary to determine configurations for their optimal implementation across different settings and locations. This includes supporting health care practitioners to document, access, use, and share information across multiple care settings. Lessons learned are relevant to other forms of digital advance care planning approaches being developed internationally.

The Use of Person-Centered Outcome Measures to Support Integrated Palliative Care for Older People: A Systematic Review.

OBJECTIVES: The aim was to synthesize evidence on the use of person-centered outcome measures to facilitate integrated palliative care for older people and build a logic model depicting the mechanisms through which person-centered outcome measures support integrated care. DESIGN: Mixed methods systematic review using a data-based convergent synthesis design. SETTING AND PARTICIPANTS: Older people aged ≥60 years who are approaching the end of their lives in multiple settings. METHODS: The study was underpinned by a conceptual framework of integrated palliative care, which informed the search strategy, data extraction, analysis, and synthesis. A hybrid search strategy was implemented, with database searches (PsycINFO, MEDLINE, CINAHL, and ASSIA) complemented by snowball searches. Qualitative and quantitative data were analyzed by narrative synthesis to summarize and explain the findings. The findings informed a logic model depicting the mechanisms of using person-centered outcome measures to support integrated palliative care. RESULTS: Twenty-six studies were included. Three mixed methods studies, 2 qualitative studies, and 21 quantitative studies were included. There was evidence that person-centered outcome measures could support integrated palliative care through informing palliative care policy development (n = 4), facilitating joint working across settings (n = 5), enabling close collaboration of multidisciplinary teams (n = 14), promoting joint education (n = 1), facilitating timing and specialist referral (n = 6), and enhancing patient-centered care (n = 3). CONCLUSIONS AND IMPLICATIONS: This review makes an important, novel, and theoretically informed contribution to the delivery of scalable and sustainable integrated palliative care into the care of older people using person-centered outcome measures. The constructed logic model provides a conceptual framework and practical approach to how person-centered outcome measures support multilevel integration. A future area of research is the development of person-centered outcome measure interventions informed by the logic model to meet clinical needs.

Advance care planning before and during COVID-19: evaluation of 73,675 patients' records.

BACKGROUND: Advance care planning (ACP) was encouraged by policymakers throughout the COVID-19 pandemic. Little is known about use of ACP during this time. AIM: To compare use of ACP before and during the COVID-19 pandemic. DESIGN & SETTING: Retrospective, observational cohort study, comparing the creation, use and content of Electronic Palliative Care Co-ordination System records in London. Individuals aged 18+ with a Coordinate My Care Record, created and published in the pre-pandemic period (01/01/2018-31/12/2019), Wave1 (W1) (20/03/2020-04/07/2020), and Wave2 (W2) (01/10/2020-05/03/2021). METHOD: Patient demographics and components of ACP were compared using descriptive and comparative statistics. RESULTS: 73,675 records were included; 35,108 pre-pandemic, 21,235 W1, 9,925 W2. Most records were created in primary care (56% pre-COVID, 76% in W1 and 48% in W2).Compared to the pre-pandemic period, the average weekly number of records created increased by 297% W1 (P<0.005) and 29.1% W2 (P<0.005). Patients with records created during the pandemic were younger (61% aged 80+ W1, 59% W2, 65% pre-pandemic (P<0.005)). Patients with records created in W1 had longer estimated prognoses at record creation (73% had an estimated prognosis of 1 year+ W1 vs 53% pre-pandemic (P<0.005)) and were more likely to be "For Resuscitation" (38% W1 vs 30% pre-pandemic (P<0.005)). CONCLUSION: During the COVID-19 pandemic, increased ACP activity was observed, especially in primary care, and for younger people and those not imminently dying. Further research is needed to identify training and planning requirements as well as organisational and system changes to support sustained high-quality ACP within primary care.

A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research.

BACKGROUND: There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist services. Multi-disciplinary research partnerships, bringing together primary care (the main providers of palliative care to diverse communities) and specialist palliative care, have the potential to work together in new ways to do research to address inequalities and improve palliative care in practice. This report describes a research partnership between primary care and palliative care that aimed to: (1) create opportunities for more inclusive PPI in palliative care research, (2) co-design new resources to support more equitable, diverse and inclusive PPI for palliative care, (3) propose a new framework for inclusive PPI in palliative care research. METHODS: PPI members were recruited via primary care and palliative care research networks from three diverse areas of the UK. A pragmatic, collaborative approach was taken to achieve the partnership aims. Online workshops were carried out to understand barriers to inclusive PPI in palliative care and to co-design resources. Evaluation included a "you said, we did" impact log and a short survey. The approach was informed by good practice principles from previous PPI, and existing theory relating to equity, equality, diversity, and inclusion. RESULTS: In total, 16 PPI members were recruited. Most were White British (n = 10), other ethnicities were Asian (n = 4), Black African (n = 1) and British mixed race (n = 1). The research team co-ordinated communication and activities, leading to honest conversations about barriers to inclusive PPI. Resources were co-designed, including a role description for an Equity, Equality, Diversity and Inclusion Champion, a "jargon buster", an animation and an online recipe book ( http://www.re-equipp.co.uk/ ) to inform future PPI. Learning from the partnership has been collated into a new framework to inform more inclusive PPI for future palliative care research. CONCLUSION: Collaboration and reciprocal learning across a multi-disciplinary primary care and palliative care research partnership led to the development of new approaches and resources. Research team commitment, shared vision, adequate resource, careful planning, relationship building and evaluation should underpin approaches to increase equality, diversity and inclusivity in future PPI for palliative care research.

Research is needed to understand how inequalities in palliative care can be addressed, so that everyone living with advanced illness can receive the care they need. Research into inequalities in palliative care should be guided by Patient and Public Involvement (PPI) that includes people from diverse backgrounds, who are less likely to receive specialist palliative care. Primary care services are grounded in the community they serve and can be the main providers of palliative care, but this is rarely the focus of research. Primary care and palliative care researchers can work together in new ways to do research to address inequalities and improve palliative care in practice. This paper describes the work of the RE-EQUIPP (REducing inEQUalities through Integration of Primary and Palliative Care) Care Partnership. The partnership involved researchers from primary care and palliative care working with people with lived experience of serious illness as patient or carer from three diverse areas of the United Kingdom: (1) London, (2) inner-city Sheffield and (3) Worthing in Sussex, a rural, coastal setting. The project provided opportunity to develop new ways of working and resources for more inclusive and equitable PPI for future palliative care research. Sixteen PPI members from diverse backgrounds and with a range of experience joined the partnership. Workshops were held to understand the barriers to inclusive PPI. New roles and resources were developed, including an Equity, Equality, Diversity and Inclusion Champion role, a "jargon buster", an animation, and an online recipe book to inform future PPI. Learning from the partnership was used to develop a new framework, which is presented to inform inclusive PPI for palliative care research in the future. This outlines the need for research team commitment and shared vision, adequate resource, careful planning, relationship building and evaluation.