The perceived impact of project ECHO networks in Northern Ireland for health and social care providers, patients, and the health system: A qualitative analysis.

This study assesses the perceived impact and benefits of Project ECHO (Extension for Community Healthcare Outcomes), a tele-mentoring intervention for health and social care providers, patients and the health system in Northern Ireland. Having access to a specialist, a space to share experiences, and being able to disseminate up-to-date best practice were all cited as improving provider knowledge as well as improving quality of care for patients. Healthcare providers reported being more confident in managing patients and that relationships had been improved between different levels of the health system. ECHO was described as improving access to education and training by removing geographic and time barriers. This is one of the first studies to qualitatively analyse impact across a number of different clinical and social care ECHO networks. The results strongly indicate the perceived benefit of ECHO in improving provider, patient and health system outcomes such as increased healthcare provider knowledge and confidence to manage patients at primary levels of the health system. This has implications for future service design, particularly within the context of COVID-19 in which virtual and online training is necessitated by social distancing requirements.

'Hospice inpatient deep vein thrombosis detection (HIDDen) in advanced non-malignant diseases': a longitudinal pilot study.

OBJECTIVES: To gain preliminary data regarding the prevalence of proximal deep vein thrombosis (DVT) in those with non-malignant conditions admitted to specialist palliative care units (SPCUs). METHODS: Data were collected as part of a prospective longitudinal observational study in five SPCUs in England, Wales and Northern Ireland (Registration: ISRCTN97567719) to estimate the prevalence of proximal femoral vein DVT in people admitted to SPCUs. The primary outcome for this exploratory substudy was the prevalence of DVT in patients with non-malignant palliative conditions. Consecutive consenting adults underwent bilateral femoral vein ultrasonography within 48 hours of admission. Data were collected on symptoms associated with venous thromboembolism. Patients were ineligible if the estimated prognosis was <5 days. Cross-sectional descriptive analysis was conducted on baseline data and prevalence estimates presented with 95% CIs. RESULTS: 1390 patients were screened, 28 patients had non-malignant disease and all were recruited. The mean age 68·8 (SD 12·0), range 43-86 years; men 61%; survival mean 86 (SD 108.5) range 1-345 days. No patient had a history of venous thromboembolism. Four (14%) were receiving thromboprophylaxis. Of 22 evaluable scans, 8 (36%, 95% CI: 17% to 59%) showed femoral vein DVT. The level of reported relevant symptoms (leg oedema, leg pain, chest pain and breathlessness) was high irrespective of the presence of DVT. CONCLUSIONS: Our exploratory data indicate one in three people admitted to an SPCU with non-malignant disease had a femoral vein DVT. Although definitive conclusions cannot be drawn, these data justify a larger prospective survey.

Using the United Kingdom standards for public involvement to evaluate the impact of public involvement in a multinational clinical study.

BACKGROUND: The publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and expertise that lay people may offer to the development, conduct and dissemination of clinical research. The UK Standards provide a benchmark which researchers should aim to achieve, yet its implementation continues to be a step wise iterative process of change management. A recent evaluation by a regional research group has suggested that our understanding of PI is enhanced through reflection on the UK Standards. We report on the utility of PI in the design, conduct and dissemination of the HIDDen study, a national, multicentre clinical study based across three UK centres. METHODS: A retrospective review of PI within the HIDDen study was conducted using field notes taken by the lead author from interactions throughout their involvement as a lay representative on the study. Key members of the HIDDen study were interviewed and data analysed to explore adherence to the UK Standards. RESULTS: There was universal support for PI across the study management group with genuine inclusivity of lay members of the committee. All six of the UK Standards were met to varying degrees. The greatest opportunities lay in 'working together' and 'support and learning'. There were challenges meeting 'governance' with evidence of participation in decision making but less evidence of opportunities in management, regulation, leadership. CONCLUSION: This study concurs with previous research supporting the utility of the Standards in the conduct and evaluation of PI in clinical research. To our knowledge this is the first multi-national study to be evaluated against the UK Standards.

The past decade has seen a genuine increase in patient and public involvement (PI) in clinical research, far beyond a symbolic presence on a trial management committee or inclusion on a grant application. The United Kingdom (UK) Standards for Public Involvement provide a useful structure to support PI throughout a study as well as defining a benchmark that can be used to improve the involvement of patients and the public in studies.The importance of reflecting on and reporting on PI in specific studies has been recognised since it contributes to a stepwise change process which will eventually lead to PI becoming normal practice for clinical research. A recent review identified a myriad of frameworks by which PI may be evaluated, risking an inconsistent approach to PI evaluation and consequently slowing down its progression.The Hospice Inpatient Deep vein thrombosis Detection study (HIDDen) was a national multicentre study to explore the prevalence and associated variables of blood clots in patients with advanced cancer when they were admitted to the specialist palliative care unit.In this paper we will be considering the HIDDen research in terms of the UK Standards for Public Involvement.

Patient and service-related barriers and facitators to the acceptance and use of interventions to promote communication in health and social care: a realist review.

BACKGROUND: More people living into old age with dementia. The complexity of treatment and care, particularly those with multiple health problems, can be experienced as disjointed. As part of an evaluation of a 'healthcare passport' for people living with dementia we undertook a realist review of communication tools within health and social care for people living with dementia. AIMS: To explore how a 'healthcare passport' might work in the 'real world' of people living with dementia through a better understanding of the theoretical issues related to, and the contextual issues that facilitate, successful communication. METHODS: A realist review was considered the most appropriate methodology to inform the further development and evaluation of the healthcare passport. We undertook a purposive literature search related to communication tools to identify (a) underlying programme theories; (b) published reports and papers on their use in various healthcare settings; (c) evidence on barriers and facliitators of their use. RESULTS: Communication tools were noted as a way of improving communication and outcomes through: (1) improvement of service user autonomy; (2) strengthening the therapeutic alliance; and (3) building integrated care. However, while intuitively perceived to of benefit, evidence on their use is limited and key barriers to their acceptance and use include: (1) difficulties in clearly defining purpose, content, ownership and usage; (2) understanding the role of family caregivers; and (3) preparation among healthcare professionsals. CONCLUSION: Patient-held communication tools may be helpful to some people living with dementia but will require considerable preparation and engagement with key stakeholders.

Acceptability and use of a patient-held communication tool for people living with dementia: a longitudinal qualitative study.

OBJECTIVES: To assess the acceptability and use of a low-cost patient-held communication tool. DESIGN: Longitudinal qualitative interviews at three time points over 18 months and document content analysis. SETTING: Primary and community services. PARTICIPANTS: Twenty-eight dyads: People living with dementia in Northern Ireland and their informal carers. INTERVENTIONS: A patient-held healthcare 'passport' for people living with dementia. PRIMARY AND SECONDARY OUTCOMES: Acceptability and use of the passport-barriers and facilitators to successful engagement. RESULTS: There was a qualified appreciation of the healthcare passport and a much more nuanced, individualistic or personalised approach to its desirability and use. How people perceive it and what they actually do with it are strongly determined by individual contexts, dementia stage and other health problems, social and family needs and capacities. We noted concerns about privacy and ambivalence about engaging with health professionals. CONCLUSION: Such tools may be of use but there is a need for demanding, thoughtful and nuanced programme delivery for future implementation in dementia care. The incentivisation and commitment of general practitioners is crucial. Altering the asymmetrical relationship between professionals and patients requires more extensive attention.

Optimised clinical study recruitment in palliative care: success strategies and lessons learned.

Recruitment challenges to clinical research studies in palliative care settings, particularly in hospices, are well documented. However, a recent study (Hospice Inpatient Deep vein thrombosis Detection (HIDDen) study) performed across five hospices in the UK recruited above target and on time. We describe strategies that aided successful recruitment in this study, and the lessons learnt for improving future studies. A recent review suggested that the 'Social Marketing Mix Framework' (SMMF) could help researchers with recruitment strategies in palliative care. We describe the recruiting strategies employed through the Social Marketing Mix lens and consider if it would be a useful framework for future researchers to use at the planning stage. Successful recruitment strategies employed in HIDDen study included: (i) addressing particular study-related factors, (ii) ensuring all patients were screened and offered participation if eligible, (iii) reducing impact on the clinical team through dedicated research nurses at sites, (iv) addressing research team issues with cross-cover between sites, where geographically possible, and (v) regular video conferencing meetings for support and collaborative solving of challenges. Limited pre-existing research infrastructure at most of the recruiting hospices created particular challenges. The SMMF provides a potential structure to help researchers to plan recruitment. However, to fully streamline trial set up and in order for hospice involvement in research to be realised systematically, a centralised approach to governance, organisational culture change whereby hospices embrace research as a legitimate purpose and consistent access to research staff are identified as key strategic elements promoting recruitment to studies in hospices.

Palliative care for patients with motor neurone disease and their bereaved carers: a qualitative study.

BACKGROUND: Internationally, it is widely accepted that holistic care is as an integral part of the care for people with motor neurone disease (MND), and their informal carers. However the optimal role of generalist and specialist palliative care, and how it integrates with specialist neurology services, is not fully established. Using a qualitative approach we sought to examine end of life care for people with MND in Northern Ireland, and the role of specialist and generalist palliative care. METHODS: Qualitative study involving a convenience sample of 13 bereaved carers recruited using the Northern Ireland MND Register. Data collection consisted of semi-structured interviews with the bereaved carers of patients who had died 3-24 months previously with a diagnosis of MND. Data were analysed using thematic analysis. RESULTS: Findings illuminated variations in relation to the levels of holistic care provided to this cohort of patients. Unmanaged respiratory and psychological symptoms caused perceived distress amongst patients. Participants' experiences additionally highlighted reluctance amongst patients with MND to engage with services such as specialist palliative care. Conversely, for those who received input from specialist palliative care services carers portrayed these services to be of great benefit to the patient. CONCLUSIONS: Patients with MND in Northern Ireland may have many unmet holistic care needs. Key areas that require particular focus in terms of service development include neuromuscular respiratory physiotherapy and psychological services for patients. Future research must explore an optimal model of holistic care delivery for patients with MND and how this can be effectively integrated to best meet this patient cohorts palliative care needs.

Prevalence, symptom burden, and natural history of deep vein thrombosis in people with advanced cancer in specialist palliative care units (HIDDen): a prospective longitudinal observational study.

BACKGROUND: The prevalence of deep venous thrombosis in patients with advanced cancer is unconfirmed and it is unknown whether current international thromboprophylaxis guidance is applicable to this population. We aimed to determine prevalence and predictors of femoral deep vein thrombosis in patients admitted to specialist palliative care units (SPCUs). METHODS: We did this prospective longitudinal observational study in five SPCUs in England, Wales, and Northern Ireland (four hospices and one palliative care unit). Consecutive adults with cancer underwent bilateral femoral vein ultrasonography on admission and weekly until death or discharge for a maximum of 3 weeks. Data were collected on performance status, attributable symptoms, and variables known to be associated with venous thromboembolism. Patients with a short estimated prognosis (<5 days) were ineligible. The primary endpoint of the study was the prevalence of femoral deep vein thrombosis within 48 h of SPCU admission, analysed by intention to treat. This study is registered with the ISRCTN registry, number ISRCTN97567719. FINDINGS: Between June 20, 2016, and Oct 16, 2017, 343 participants were enrolled (mean age 68·2 years [SD 12·8; range 25-102]; 179 [52%] male; mean Australian-modified Karnofsky performance status 49 [SD 16·6; range 20-90]). Of 273 patients with evaluable scans, 92 (34%, 95% CI 28-40) had femoral deep vein thrombosis. Four participants with a scan showing no deep vein thrombosis on admission developed a deep vein thrombosis on repeat scanning over 21 days. Previous venous thromboembolism (p=0·014), being bedbound in the past 12 weeks for any reason (p=0·003), and lower limb oedema (p=0·009) independently predicted deep vein thrombosis. Serum albumin concentration (p=0·43), thromboprophylaxis (p=0·17), and survival (p=0·45) were unrelated to deep vein thrombosis. INTERPRETATION: About a third of patients with advanced cancer admitted to SPCUs had a femoral deep vein thrombosis. Deep vein thrombosis was not associated with thromboprophylaxis, survival, or symptoms other than leg oedema. These findings are consistent with venous thromboembolism being a manifestation of advanced disease rather than a cause of premature death. Thromboprophylaxis for SPCU inpatients with poor performance status seems to be of little benefit. FUNDING: National Institute for Health Research (Research for Patient Benefit programme).

Supporting and improving community health services-a prospective evaluation of ECHO technology in community palliative care nursing teams.

INTRODUCTION: Project ECHO (Extension for Community Healthcare Outcomes) uses teleconferencing technology to support and train healthcare providers (HCPs) remotely, and has improved care across the USA. A 6-month pilot was trialled in a community palliative care nursing setting to determine if ECHO would be effective in the UK in providing education and support to community hospice nurses (CHN). METHODS: The pilot involved weekly 2 hour sessions of teaching and case-based discussions facilitated by hospice staff linking with nine teams of CHN using video conferencing technology. A mixed-methods prospective longitudinal cohort study was used to evaluate the pilot. Each CHN provided demographic data, and completed a written knowledge assessment and a self-efficacy tool before and after the pilot. Two focus groups were also performed after the pilot. RESULTS: 28 CHNs completed the evaluation. Mean knowledge score improved significantly from 71.3% to 82.7% (p=0.0005) as did overall self-efficacy scores following the ECHO pilot. Pre-ECHO (p=0.036) and Retro-Pretest ECHO (p=0.0005) self-efficacy were significantly lower than post-ECHO. There was no significant difference between Pretest and Retro-Pretest ECHO self-efficacy (p=0.063). 96% recorded gains in learning, and 90% felt that ECHO had improved the care they provided for patients. 83% would recommend ECHO to other HCPs. 70% stated the technology used in ECHO had given them access to education that would have been hard to access due to geography. CONCLUSIONS: This study supports the use of Project ECHO for CHNs in the UK by demonstrating how a 6-month pilot improved knowledge and self-efficacy. As a low-cost high-impact model, ECHO provides an affordable solution to addressing growing need.

Patient healthcare passports in community specialist palliative care: a mixed methods study.

BACKGROUND: Patient held records need to be evaluated in palliative care settings. OBJECTIVES: To evaluate how patients, families and professionals in a specialist palliative setting use a patient held record created through close consultation with patients and carers. METHODS: A mixed methods prospective longitudinal cohort study in the UK-adult patients under community specialist palliative care nurse review or attending day hospice were given questionnaires at record introduction and after 4-6 weeks. Hospice staff completed a questionnaire and focus group after 8 months. RESULTS: From Sept 2016 to June 2017, 550 patients were screened, 347 (63.1%) were offered records and 259 accepted (74.6%). 238 accepted a research pack, 105 returned questionnaire 1 (44.1% response rate) and 26 returned questionnaire 2 (24.8% of initial respondents). Questionnaire 1 (patients): 40% found it burdensome repeating information, and almost 70% were interested in a record to reduce this. Questionnaire 2 (patients): 74% found the record easy to use, but few (4, 15.4%) used it regularly. Over 60% stated the record was useful and would recommend it to others, despite not using it themselves. Professionals indicated that it was mainly patients and relatives who used the record, not non-palliative professionals. CONCLUSIONS: While initial uptake of the record was high, use appeared low. While people saw real value in the record for others, they did not generally use it themselves. This evaluation demonstrates that patient held records are unlikely to be used by palliative care patients even though they see value in the concept.

"A tool doesn't add anything". The importance of added value: Use of observational pain tools with patients with advanced dementia approaching the end of life-a qualitative study of physician and nurse experiences and perspectives.

BACKGROUND: Observational pain tools (OPTs) are widely recommended in health care policies, clinical guidelines, and recommendations for pain assessment and management. However, it is unclear whether and how these tools are used for patients with advanced dementia approaching the end of life. AIM: To explore hospice, secondary, and primary care physicians' and nurses' use of OPTs with patients dying with advanced dementia and their perspectives on practice development and training needs. METHODS: Twenty-three physicians and 24 nurses with experience of caring for people dying with advanced dementia were recruited from primary care surgeries (n = 5), hospitals (n = 6), hospices (n = 4), and nursing homes (n = 10). Semistructured, face-to-face interviews were conducted. Interviews were digitally recorded, transcribed verbatim, and thematic analysis applied to identify core themes. RESULTS: Three key themes emerged: (1) use of OPTs in this vulnerable patient population, (2) barriers to the use of OPTs and lack of perceived "added value", and (3) perspectives on practice development and training in pain assessment in advanced dementia at end of life. Just over one-quarter of participants (n = 13) routinely used OPTs. Reasons for nonuse included perceived limitations of such tools, difficulties with their use and integration with existing practice, and lack of perceived added value. Most participants strongly emphasised a need for ongoing training and development which facilitated transfer of knowledge and multidisciplinary skills across professions and specialties. CONCLUSIONS: Health professionals require ongoing support in developing and integrating change to existing pain assessment protocols and approaches. These findings have important implications for health education, practice, and policy.

Providing Palliative Care in Rural Nepal: Perceptions of Mid-Level Health Workers.

INTRODUCTION: Nepal is beginning to develop palliative care services across the country. Most people live in rural areas, where the Mid-Level Health Workers (MHWs) are the major service providers. Their views on providing palliative care are most important in determining how the service is organized and developed. AIM: This study aims to ascertain the perceptions of MHWs about palliative care in their local community, to inform service development. METHODS: A qualitative descriptive design, using focus group discussions, was used to collect data from a rural district of Makwanpur, 1 of the 75 districts of Nepal. Twenty-eight MHWs participated in four focus group discussions. The data were analyzed using content analysis. RESULT: Four themes emerged from the discussion: (i) suffering of patients and families inflicted by life-threatening illness, (ii) helplessness and frustration felt when caring for such patients, (iii) sociocultural issues at the end of life, and (iv) improving care for patients with palliative care needs. CONCLUSION: MHWs practicing in rural areas reported the suffering of patients inflicted with life-limiting illness and their family due to poverty, poor access, lack of resources, social discrimination, and lack of knowledge and skills of the health workers. While there are clear frustrations with the limited resources, there is a willingness to learn among the health workers and provide care in the community.

Evaluation of the impact of telementoring using ECHO© technology on healthcare professionals' knowledge and self-efficacy in assessing and managing pain for people with advanced dementia nearing the end of life.

BACKGROUND: Pain assessment and management in advanced and end-stage dementia are challenging; patients are at risk of under-diagnosis, under-assessment and under-treatment. Previous research has highlighted the importance of needs-driven training and development in this area for physicians, nurses and healthcare assistants (HCAs) across specialties, disciplines and care settings. This study used teleconferencing technology to connect healthcare professionals across multiple settings and disciplines in real-time clinics, based on the Project ECHO© model. This paper reports the evaluation of the clinics by physicians, nurses and HCAs, including their knowledge and self-efficacy in pain assessment and management for patients with advanced and end-stage dementia. METHODS: A mixed method evaluation comprising quantitative survey of self-reported knowledge and self-efficacy pre- and post-ECHO clinic participation, and qualitative exploration of experiences of the clinics using focus group interviews. A census approach to sampling was undertaken. Pre- and post-ECHO evaluations were administered electronically using Survey Monkey software. Mann-Whitney U tests were used to explore differences in knowledge and self-efficacy scores pre- and post-ECHO clinic participation. Statistical significance was set a-priori at p = 0.05. Focus groups were video- and audio-recorded, transcribed verbatim and analysed using Braun & Clarke's model of thematic analysis. RESULTS: Eighteen healthcare professionals [HCPs] (physicians [n = 7], nurses [n = 10], HCA [n = 1]) and twenty HCPs (physicians [n = 10], nurses [n = 10]) completed pre- and post-ECHO evaluations respectively, reporting improvements in knowledge and self-efficacy on participation in ECHO clinics and perceived utility of the clinics. Seven HCPs (physicians [n = 2], nurses [n = 5]) participated in two focus groups. Four themes emerged: knowledge and skills development and dissemination; protected time; areas for improvement; and the future of ECHO. CONCLUSIONS: Telementoring clinics for HCP education and training in pain assessment and management in advanced and end-stage dementia demonstrate a positive impact on knowledge and self-efficacy of HCPs and highlight the value of a cross-specialty network of practice which spans across disciplines/HCP types, care settings and geographical areas. Further development of ECHO services in this and in other clinical areas, shows significant potential to support delivery of high-quality care to complex patient populations.

Assessment and management of constipation for patients receiving palliative care in specialist palliative care settings: A systematic review of the literature.

BACKGROUND: Constipation is an important issue for patients receiving palliative care within specialist palliative care settings. Questions and ambiguity, however, persist about international best practice and management. AIM: To synthesise the current evidence base on the assessment and management of constipation for palliative care patients within a specialist palliative care setting. DESIGN: This is a systematic review. DATA SOURCES: MEDLINE, Embase, CINAHL, Scopus and Cochrane databases were systematically searched in April 2017 for empirical studies, written in English, on the assessment and management of constipation in specialist palliative care settings, published between 2007 and 2017. Two researchers independently reviewed and critically appraised all studies, conducted data extraction, and undertook a thematic analysis. RESULTS: In total, 13 studies were included in the review comprising randomised trials ( n = 3), observational ( n = 4) and descriptive studies ( n = 6). Most research was conducted in specialist palliative care units, targeting either healthcare professionals or patients. The analysis highlighted a lack of standard definition of constipation, raising questions on the existence and comparability of baseline prevalence figures, the physical and psychological impact on patients, resource impact on staff and service, the subjective and objective methods of assessing constipation, and key aspects of constipation management, including a lack of focus on non-pharmacological management in this setting. CONCLUSION: The results of this review are being used to inform the development of an educational intervention targeting healthcare professionals. Gaps in the evidence base include lack of consistent definition of constipation, constipation prevention, non-pharmacological management, and the consideration of the management of constipation for the dying patient.

A multi-professional educational intervention to improve and sustain respondents' confidence to deliver palliative care: A mixed-methods study.

BACKGROUND: Education has been highlighted as fundamental in equipping healthcare professionals with essential knowledge and skills to provide good end-of-life care. Multiprofessional educational programmes have a positive influence on knowledge, attitude and confidence but few have sought to understand the longer term impact on care delivery. The European Certificate in Essential Palliative Care is an 8-week home-study-based programme for healthcare professionals and is currently run in nine centres. Successful candidates have undertaken the course from their own countries around the world. This article describes the evaluation of the European Certificate in Essential Palliative Care which has been evolving over 15 years. AIMS: To evaluate the impact an educational intervention has on participants' confidence in palliative care, to determine whether this is sustained over time and explore participants' perception of the influence of the course on confidence. DESIGN: A mixed-method longitudinal approach. SETTING/PARTICIPANTS: A survey using a self-efficacy scale was emailed to 342 candidates who received an educational intervention and semi-structured interviews to a sub-sample of 15 candidates at baseline, 3 and 6 months. RESULTS: At 3 months, candidates had almost 20 times higher odds of being above any given level of confidence than at baseline which was sustained at 6 months. Qualitative analysis identified examples of increased competence and confidence improving palliative care delivery. CONCLUSION: Findings suggest that the European Certificate in Essential Palliative Care improves confidence in palliative care and that this is sustained over time with evidence of confidence in symptom control, communication and a holistic approach in clinical practice.