Extracorporeal photopheresis (ECP) in the treatment of chronic lung allograft dysfunction (CLAD): a prospective, multicentre, open-label, randomised controlled trial studying the addition of ECP to standard care in the treatment of bilateral lung transplant patients with CLAD (E-CLAD UK).

BACKGROUND: Long-term survival after lung transplantation is limited compared with other organ transplants. The main cause is development of progressive immune-mediated damage to the lung allograft. This damage, which can develop via multiple immune pathways, is captured under the umbrella term chronic lung allograft dysfunction (CLAD). Despite the availability of powerful immunosuppressive drugs, there are presently no treatments proven to reverse or reliably halt the loss of lung function caused by CLAD. The aim of the E-CLAD UK trial is to determine whether the addition of immunomodulatory therapy, in the form of extracorporeal photopheresis (ECP), to standard care is more efficacious at stabilising lung function in CLAD compared with standard care alone. METHODS AND ANALYSIS: E-CLAD UK is a Phase II clinical trial of an investigational medicinal product (Methoxsalen) delivered to a buffy coat prepared via an enclosed ECP circuit. Target recruitment is 90 bilateral lung transplant patients identified as having CLAD and being treated at one of the five UK adult lung transplant centres. Participants will be randomised 1:1 to intervention plus standard of care, or standard of care alone. Intervention will comprise nine ECP cycles spread over 20 weeks, each course involving two treatments of ECP on consecutive days. All participants will be followed up for a period of 24 weeks.The primary outcome is lung function stabilisation derived from change in forced expiratory volume in one second and forced vital capacity at 12 and 24 weeks compared with baseline at study entry. Other parameters include change in exercise capacity, health-related quality of life and safety. A mechanistic study will seek to identify molecular or cellular markers linked to treatment response and qualitative interviews will explore patient experiences of CLAD and the ECP treatment.A patient and public advisory group is integral to the trial from design to implementation, developing material to support the consent process and interview materials. ETHICS AND DISSEMINATION: The East Midlands-Derby Research Ethics Committee has provided ethical approval (REC 22/EM/0218). Dissemination will be via publications, patient-friendly summaries and presentation at scientific meetings. TRIAL REGISTRATION NUMBER: EudraCT number 2022-002659-20; ISRCTN 10615985.

Role modelling to support careers in general practice: a realist review protocol.

BACKGROUND: Role models encountered during undergraduate training play an important part in shaping future doctors. They can act as powerful attractants towards, and deterrents away from a career in general practice. Many general practitioner (GP) educators who act as role models are burnt-out and wish to leave the profession which may limit their ability to influence students positively, with consequent detrimental impact on recruitment to the specialty. AIM: A realist review will be undertaken, aiming to explore how, why and for whom role modelling in undergraduate medical education can support medical students towards careers in general practice. DESIGN & SETTING: The realist review will follow Pawson's five steps, including: locating existing theories, searching for evidence, article selection, data extraction, synthesising evidence and drawing conclusions and will explore literature published in English language between 2013 and 2024. METHOD: An initial explanatory framework (initial programme theory, IPT) will be developed guided by a stakeholder panel including medical undergraduates, GPs and patient/public representatives. Searches will be developed and conducted in electronic databases and grey literature. Studies will be included if they explore the relationship between GP role modelling and undergraduate career choice and relevant data will be extracted. CONCLUSION: Findings will refine the initial programme theory, unveiling key contexts, mechanisms and outcomes which influence role modelling in undergraduate GP medical education and support or deter students from careers in general practice. These findings will support recommendations and interventions to facilitate positive outcomes, including improved recruitment to general practice.

Young people's and adults' views and experiences of decision-making to manage compromised first permanent molars: a qualitative study.

BACKGROUND: Little information on young people's and adults' views and experiences on decision-making for managing compromised first permanent molars (cFPM) exists. AIM: To establish young people's and adults' views and experiences of decision-making for managing cFPM. DESIGN: Face-to-face (online) semi-structured interviews were undertaken using an iteratively designed topic guide. Participants aged 12-65 were purposively sampled with recruitment from different dental clinics (three primary care, an out-of-hours emergency and one dental hospital). Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: Three themes were generated from young people's interviews (n = 9): (i) influencing factors; (ii) long-term considerations; and (iii) shared decision-making. Three themes were generated from adults' interviews (n = 13): (i) influences that affect decisions; (ii) perceptions of the specialist's role; and (iii) importance of shared decision-making for children and young people. CONCLUSION: Several factors influenced decision-making; for young people, professional opinions were important, and parental/peer influences less so. For adults, it was based on decisions on their prior experiences. Adults felt young people were abnormal if referred to a specialist. Young people wanted autonomy in decision-making to be respected; in reality, their views were rarely heard. There is potential to increase young people's involvement in shared decision-making for cFPM, which aligns with their aspirations.

Assessing quality of life in solid organ transplant recipients: A systematic review of the development, content, and quality of available condition- and transplant-specific patient-reported outcome measures.

PURPOSE: We aimed to identify the condition- and transplant-specific patient-reported outcome measures (PROMs) available to measure quality of life (QoL) in solid organ transplant (SOT) recipients, examine their development and content, and critically appraise the quality of their measurement properties, to inform recommendations for clinical and research use. METHODS: We systematically searched MEDLINE, Embase, CINAHL, PsycINFO, Cochrane CENTRAL, and Scopus from inception to 27th January 2023. Search hits were screened for eligibility by two independent reviewers; papers reporting the development and/or validation of condition- and transplant-specific PROMs measuring QoL in adult SOT recipients were considered eligible. We abstracted and synthesised data on PROM characteristics, development (item generation and/or reduction), and content (QoL dimensions). Quality appraisal and synthesis were informed by the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) guidelines, and included methodological and quality assessment of measurement properties, GRADE levels of evidence, feasibility and interpretability. RESULTS: We identified 33 papers reporting 26 QoL PROMs validated in SOT recipients (kidney n = 10 PROMs; liver n = 6; lung n = 3; heart n = 2; pancreas n = 1; multiple organs n = 4). Patient discussions (n = 17 PROMs) and factor analysis (n = 11) were the most common item generation and reduction techniques used, respectively. All PROMs measured ≥3 of nine QoL dimensions (all measured emotional functioning); KDQoL-SF and NIDDK-QA measured all nine. Methodological quality was variable; no PROM had low evidence or better for all measurement properties. All PROMs were COSMIN recommendation category 'B', primarily because none had sufficient content validity. CONCLUSIONS: There are many condition- and transplant-specific QoL PROMs validated in SOT recipients, particularly kidney. These findings can help inform PROM selection for clinicians and researchers. However, caution is required when adopting measures, due to the substantial heterogeneity in development, content, and quality. Each PROM has potential but requires further research to be recommendable. Greater consideration of patient and professional involvement in PROM development in this setting is needed to ensure sufficient content validity.

A multicentre prospective evaluation of health-related quality of life and patient related outcomes in pancreatic and peripancreatic cancer: PROMCAN study.

BACKGROUND: The temporal evolution of HRQoL and the importance of other PROs to patients, following resection for pancreatic and peripancreatic malignancy remains unexplored. METHODS: Patients undergoing pancreatic resection between 2021 and 2022 were enrolled from 2 UK HPB centres. Patients completed the EORTC QLQ-C30, QLQ-PAN26 tools and rated 56 PROs preoperatively (T1), at discharge (T2), 6-weeks (T3), 3-months (T4) and 6-months (T5) postoperatively. ANOVA followed by post-hoc analysis was used to examine patterns in HRQoL through time. Multivariable ANOVA was used to identify impact of clinical factors on HRQoL. RESULTS: 63 patients were recruited [median age, 72 (IQR 41-85); 39/63 male]. Physical functioning declined from 70.4 (26.2) at T1 to 53.5 (20.9) at T2 (p = 0.016). Global QoL score increased significantly from 41.0 (23.0) at T2 to 60.0 (26.1) at T5 (p = 0.007), as did role functioning [21.1 (27.9) at T2 to 59.4 (32.8) at T5, p < 0.001]. Chemotherapy status and the postoperative complications did not significantly change HRQoL. General QoL and health were the only PROs rated as 'very important' (scores 7-9) by more than 80 % of participants at five time-points. CONCLUSION: Recuperation of HRQoL measures is seen at 6-months postoperative and was not affected by chemotherapy or postoperative complications. Notably, PROs important to patients varied over time.

An ethnography of mealtime care for people living with dementia in care homes.

Many people living with dementia have difficulties at mealtimes, which can result in serious complications for physical and mental health, leading to hospital admissions and even death. However, current training in mealtime care for staff working with this population has been found to be poorly reported, with variable effectiveness. It is essential that care home staff are able to provide good care at mealtimes. This study used ethnography to explore current practice in mealtime care for this population, identify good practice, and understand the factors influencing mealtime care. Approximately 28 h of mealtime observations were conducted in two UK care homes with diverse characteristics. Observations focused on interactions between care staff and residents living with dementia. Twenty-five semi-structured interviews were carried out with care home staff, family carers, and visiting health and social care professionals, to explore mealtime care from their perspectives. A constant comparative approach was taken, to probe emergent findings and explore topics in greater depth. Key thematic categories were identified, including: tensions in mealtime care; the symbolic nature of mealtime care; navigating tensions via a person-centred approach; contextual constraints on mealtime care; and teamwork in mealtime care. The findings indicated that a person-centred approach helps carers to find the right balance between apparently competing priorities, and teamwork is instrumental in overcoming contextual constraints. This evidence has contributed to development of a training intervention for care home staff. Future research should investigate the feasibility of mealtime care training in care homes.

Exploring dental treatment decision-making experiences of people living with dementia and family carers.

INTRODUCTION: People living with dementia can have complex dental care needs. Dentists and patients should make treatment decisions together, yet some people living with dementia may be unable to make their own decisions about their dental care. Dental treatment decision-making and patients' experiences of this process have not been comprehensively researched. OBJECTIVE: This study aimed to explore the dental treatment decision-making perspectives and experiences of people living with dementia and their family members. METHODS: Semi-structured interviews were undertaken with 8 people living with dementia and 17 family caregivers. A constructivist grounded theory approach was adopted, using a maximum variation sample. Qualitative data collection and analysis occurred concurrently. Data underwent initial open coding followed by more focused coding, supported by reflexive memo writing, which supported data categorisation. RESULTS: People living with dementia reported wanting to be understood as unique individuals with specific needs. All participants described wanting to be actively involved in dental treatment decisions. However, many felt that they were insufficiently involved in treatment decision-making. This perceived underinvolvement meant that some people living with dementia and family members felt the treatment outcomes they sought were neither discussed nor considered. CONCLUSION: People living with dementia and carers had specific expectations of dental care yet felt passive in decision-making despite their desire to be involved in this process. Dentists should seek to actively establish patients' preferences, regardless of mental capacity and consider these in discussions and decisions about dental treatment.

Assessing impact, needs and quality-of-life among informal carers of people with pancreatic cancer, a prospective study: the PAN-CARER study protocol.

INTRODUCTION: Approximately 10 300 people are diagnosed with pancreatic cancer each year in the UK. The cancer and its treatment inflict a significant physical, functional and emotional burden on patients. Research suggests that patients have many ongoing needs for support and care, but that these needs are not met by existing services. Family members often step in to fill this gap and provide support and care during and after treatment. Research in other cancers shows that this informal caregiving can place a very heavy burden on carers. However, there are few studies in the international literature that have focused on informal carers in pancreatic cancer; none have been conducted in the UK. METHODS AND ANALYSIS: Two complementary research methods will be utilised. First, a longitudinal quantitative study of 300 carers investigating, using validated questionnaires to assess the impact of caregiving (Caregiver Reaction Assessment), the unmet needs of carers (Supportive Care Needs Survey) and the quality-of-life (Short Form 12-item health survey), will be conducted. Second, qualitative interviews will be conducted with up to 30 carers to explore their experiences in more depth. Mixed-effects regression models will be applied to survey results to determine how impact, needs and quality-of-life vary over time, compare outcomes between carers of patients with operable and inoperable disease and identify social factors which affect outcomes. Interview data will undergo reflexive thematic analysis. ETHICS AND DISSEMINATION: The protocol has been approved by the Health Research Authority of the UK (Ethical approval IRAS ID 309503). Findings will be published in peer-reviewed journals and presented at national and international conferences.

Patient Priorities in Autoimmune Hepatitis: The Need for Better Treatments, More Education and Challenging Stigma.

BACKGROUND: Data show that patients with autoimmune hepatitis have significantly reduced quality-of-life and that corticosteroids carry marked side effects. AIMS: This study explored patients' experiences of autoimmune hepatitis and its treatments; key aspects for developing safe and effective new approaches to therapy. METHODS: An anonymised, internet-based survey collected data including patient demographics, treatments, side-effects, impact on day-to-day life, sources of support and attitudes towards autoimmune hepatitis between December 2019-January 2020. Semi-structured interviews were conducted with 13 patients to further explore their support networks, treatment experiences and health priorities. Descriptive and quantitative analyses were undertaken using R and free text responses were subject to thematic analysis. RESULTS: In total, 270 survey responses were received (median age 55 years and 94% female). Perceived medication side-effects were reported by 66% (169/257) and 73% responded negatively about their experience of corticosteroids. The majority (62·3% [(109/175]) would 'definitely' or 'probably' consider clinical trial participation to improve their care. Only 18·7% (31/166) reported access to a specialist liver nurse and nearly half were involved in support groups. Interview and survey data suggested that major issues were stigma, loss of control and fatigue. CONCLUSIONS: This study provides insights into the realities of living with autoimmune hepatitis with clear issues around lack of support networks, need for patient empowerment and stigma surrounding liver disease. Patient priorities are better therapies to slow disease progression, avoiding corticosteroids and minimising side-effects. Patient willingness to participate in trials suggests that they are achievable provided they have the right design and clinical endpoints.

How do patients make decisions in the context of a multidisciplinary team: an ethnographic study of four head and neck cancer centres in the north of England.

OBJECTIVES: To describe how patients are engaged with cancer decisions in the context of multidisciplinary team (MDT) and how MDT recommendations are operationalised in the context of a shared decision. DESIGN: Ethnographic qualitative study. SETTING: Four head and neck cancer centres in the north of England. PARTICIPANTS: Patients with a diagnosis of new or recurrent head and neck cancer; non-participant observation of 35 MDT meetings and 37 MDT clinics, informal interviews, and formal, semistructured interviews with 20 patients and 9 MDT staff members. METHODS: Ethnographic methods including non-participant observation of MDT meetings and clinic appointments, informal interviews, field notes and formal semistructured interviews with patients and MDT members. RESULTS: MDT discussions often conclude with a firm recommendation for treatment. When delivered to a patient in clinic, this recommendation is often accepted by the patient, but this response may result from the disempowered position in which they find themselves. While patient behaviour may thus appear to endorse clinicians' views that a paternalistic approach is desired by patients (creating a 'cycle of paternalism'), the rigidity of the MDT treatment recommendation can act as a barrier to discussion of options and the exploration of patient values. CONCLUSIONS: The current model of MDT decision-making does not support shared decision-making and may actively undermine it. A model should be developed whereby the individual patient perspective has more input into MDT discussions, and where decisions are made on potential treatment options rather than providing a single recommendation for discussion with the patient. Deeper consideration should be given to how the MDT incorporates the patient perspective and/or delivers its discussion of options to the patient. In order to achieve these objectives, a new model of MDT working is required.

When should palliative care be introduced for people with progressive fibrotic interstitial lung disease? A meta-ethnography of the experiences of people with end-stage interstitial lung disease and their family carers.

BACKGROUND: Little is currently known about the perspectives of people with interstitial lung disease and their carers in relation to the timing of palliative care conversations. AIM: To establish patients' and carers' views on palliative care in interstitial lung disease and identify an optimum time to introduce the concept of palliative care. DESIGN: Meta-ethnography of qualitative evidence. The review protocol was prospectively registered with PROSPERO (CRD42021243179). DATA SOURCES: Five electronic healthcare databases were searched (Medline, Embase, CINAHL, Scopus and Web of Science) from 1st January 1996 to 31st March 2022. Studies were included that used qualitative methodology and included patients' or carers' perspectives on living with end-stage disease or palliative care. Quality was assessed using the Critical Appraisal Skills Programme checklist. RESULTS: About 1779 articles were identified by initial searches. Twelve met the inclusion criteria, providing evidence from 266 individuals across five countries. Three stages were identified in the illness journey of a person with interstitial lung disease: (1) Information seeking, (2) Grief and adjustment, (3) Fear of the future. Palliative care involvement was believed to be most appropriate in the latter two stages and should be prompted by changes in patients' health such as respiratory infections, onset of new symptoms, hospital admission, decline in physical function and initiation of oxygen. CONCLUSIONS: Patients and carers prefer referral to palliative care services to be prompted by changes in health status. Future research should focus on supporting timely recognition of changes in patients' health status and how to respond in a community setting.

Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis.

BACKGROUND: People dying from interstitial lung disease experience considerable symptoms and commonly die in an acute healthcare environment. However, there is limited understanding about the quality of their end-of-life care. AIM: To synthesise evidence about end-of-life care in interstitial lung disease and identify factors that influence quality of care. DESIGN: Systematic literature review and narrative synthesis. The review protocol was prospectively registered with PROSPERO (CRD42020203197). DATA SOURCES: Five electronic healthcare databases were searched (Medline, Embase, PubMed, Scopus and Web of Science) from January 1996 to February 2021. Studies were included if they focussed on the end-of-life care or death of patients with interstitial lung disease. Quality was assessed using the Critical Appraisal Skills Programme checklist for the relevant study design. RESULTS: A total of 4088 articles were identified by initial searches. Twenty-four met the inclusion criteria, providing evidence from 300,736 individuals across eight countries. Most patients with interstitial lung disease died in hospital, with some subjected to a high burden of investigations or life-prolonging treatments. Low levels of involvement with palliative care services and advance care planning contributed to the trend of patients dying in acute environments. This review identified a paucity of research that addressed symptom management in the last few days or weeks of life. CONCLUSIONS: There is inadequate knowledge regarding the most appropriate location for end-of-life care for people with interstitial lung disease. Early palliative care involvement can improve accordance with end-of-life care wishes. Future research should consider symptom management at the end-of-life and association with location of death.

'You can't start a car when there's no petrol left': a qualitative study of patient, family and clinician perspectives on implantable cardioverter defibrillator deactivation.

OBJECTIVE: To explore the attitudes towards implantable cardioverter defibrillator (ICD) deactivation and initiation of deactivation discussions among patients, relatives and clinicians. DESIGN: A multiphase qualitative study consisting of in situ hospital ICD clinic observations, and semistructured interviews of clinicians, patients and relatives. Data were analysed using a constant comparative approach. SETTING: One tertiary and two district general hospitals in England. PARTICIPANTS: We completed 38 observations of hospital consultations prior to ICD implantation, and 80 interviews with patients, family members and clinicians between 2013 and 2015. Patients were recruited from preimplantation to postdeactivation. Clinicians included cardiologists, cardiac physiologists, heart failure nurses and palliative care professionals. RESULTS: Four key themes were identified from the data: the current status of deactivation discussions; patients' perceptions of deactivation; who should take responsibility for deactivation discussions and decisions; and timing of deactivation discussions. We found that although patients and doctors recognised the importance of advance care planning, including ICD deactivation at an early stage in the patient journey, this was often not reflected in practice. The most appropriate clinician to take the lead was thought to be dependent on the context, but could include any appropriately trained member of the healthcare team. It was suggested that deactivation should be raised preimplantation and regularly reviewed. Identification of trigger points postimplantation for deactivation discussions may help ensure that these are timely and inappropriate shocks are avoided. CONCLUSIONS: There is a need for early, ongoing and evolving discussion between ICD recipients and clinicians regarding the eventual need for ICD deactivation. The most appropriate clinician to instigate deactivation discussions is likely to vary between patients and models of care. Reminders at key trigger points, and routine discussion of deactivation at implantation and during advance care planning could prevent distressing experiences for both the patient and their family at the end of life.

How do we provide good mealtime care for people with dementia living in care homes? A systematic review of carer-resident interactions.

People with dementia who live in care homes often depend on care home staff for help with eating and drinking. It is essential that care home staff have the skills and support they need to provide good care at mealtimes. Good mealtime care may improve quality of life for residents, and reduce hospital admissions. The aim of this systematic review was to identify good practice in mealtime care for people with dementia living in care homes, by focusing on carer-resident interactions at mealtimes. Robust systematic review methods were followed. Seven databases were searched: AgeLine, BNI, CENTRAL, CINAHL, MEDLINE, PsycINFO and Web of Science. Titles, abstracts, and full texts were screened independently by two reviewers, and study quality was assessed with Joanna Briggs Institute tools. Narrative synthesis was used to analyse quantitative and qualitative evidence in parallel. Data were interrogated to identify thematic categories of carer-resident interaction. The synthesis process was undertaken by one reviewer, and discussed throughout with other reviewers for cross-checking. After title/abstract and full-text screening, 18 studies were included. Some studies assessed mealtime care interventions, others investigated factors contributing to oral intake, whilst others explored the mealtime experience. The synthesis identified four categories of carer-resident interaction important to mealtime care: Social connection, Tailored care, Empowering the resident, and Responding to food refusal. Each of the categories has echoes in related literature, and provides promising directions for future research. They merit further consideration, as new interventions are developed to improve mealtime care for this population.

Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions.

BACKGROUND: Dementia can have a profound impact on decision making. People living with dementia (PLwD) often need to make decisions about health care, and, as dementia progresses, decisions may need to be made on their behalf. Specific interventions may support this process. REVIEW QUESTION: What interventions are effective in improving shared decision making or surrogate decision making on the health care of PLwD? METHODS: A narrative systematic review of existing literature was conducted. Seven databases, grey literature and key journals were searched. After exclusion by title, abstracts then full texts were reviewed collaboratively to manage any disagreements. RESULTS: Eight studies met the inclusion criteria. Two articles, including one RCT, evaluated decision aids regarding the use of enteral feeding in advanced dementia. Six further articles, including five RCTs, were found which evaluated the effectiveness of interventions supporting patients or carers with advance care planning. CONCLUSION: Decision-making interventions typically consist of multiple components which aim to establish preferences for future health care. Advance care planning interventions supported aspects of the decision-making processes but their impact on decision quality was rarely evaluated. Interventions did not increase the concordance of decisions with a person's values. The decision-specific interventions are unlikely to produce benefit in other decision contexts. PATIENT INVOLVEMENT: Two caregivers, a public stakeholder group and a carer group were consulted in the design of the wider study to which this review relates. Six PLwD refined the research questions addressed in this paper.

Disentangling a web of causation: An ethnographic study of interlinked patient barriers to planned dental visiting, and strategies to overcome them.

OBJECTIVE: To explore barriers to planned dental visiting, investigating how barriers interlink, how they accumulate and change, and how individuals envisage overcoming their combination of barriers through personal strategies. METHODS: An ethnographic study was conducted of adult urgent dental care attenders who did not have a dentist, including 155 hours of nonparticipant observations, 97 interviews and 19 follow-up interviews in six urgent dental care settings. Data were analysed using constant comparison, first identifying barriers and personal strategies to overcome them, and subsequently analysing interlinks between barriers and personal strategies. RESULTS: Accounts of barriers to planned dental visiting encompassed multiple barriers, which related to socioeconomic circumstances as well as experiences of oral health care. Barriers were multi-layered and more difficult to overcome when occurring together. Personal strategies to overcome diverse barriers often hinged on increasing importance of oral health to individuals, yet this was not always sufficient. The combination of barriers participants experience was dynamic, changing due to personal, family, or employment circumstances, and with increasing severity of barriers over time. Over time, this could lead to higher cost, and additional barriers, particularly embarrassment. CONCLUSION: Barriers to planned dental visiting are complex, multi-layered and change over time, constituting a 'web of causation'. This adds a novel perspective to the literature on barriers to dental visiting, and requires that researchers, dental practitioners and policy makers remain open to barriers' interlinked effects, changes in primacy among individual patients' barriers, and their accumulation over time to better support uptake of planned dental visiting.

Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System.

OBJECTIVES: To explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences. DESIGN: Qualitative study using interviews and focus groups. SETTING: Health and Social Care Services in the North of England. PARTICIPANTS: 71 participants, 62 health and social care professionals, 9 patients and family members. RESULTS: Four key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well-paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system. CONCLUSIONS: EPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.

A critical exploration of professional jurisdictions and role boundaries in inter-professional end-of-life care in the community.

This article critically examines how professional boundaries and hierarchies influence how end-of-life care is managed and negotiated between health and social care professionals. Our findings suggest there is uncertainty and lack of clarity amongst health and social care professionals regarding whose responsibility it is to engage, and document, the wishes of patients who are dying, which can lead to ambiguity in treatment decisions. We go on to explore the potential role of a new electronic system, designed to facilitate information sharing across professional boundaries, in shaping and bridging professional boundaries in the delivery of end-of-life care. We highlight potential negative impacts that may arise when health and social care groups are permitted varying levels of access to the system, and how this may be seen to reflect the value placed on their role in end-of-life care.

Care priorities for stroke patients developing cognitive difficulties: a Delphi survey of UK professional views.

BACKGROUND: Post stroke cognitive difficulties are common but generally prioritised below other impairments. In the UK, clinical guidelines recommend a holistic review at six-months post-stroke including an assessment of cognitive function. In order to assist clinicians to provide better care for patients with post-stroke cognitive deficits and assist with service planning, our aim was to establish professional consensus on key actions at the six-month review. METHODS: An electronic Delphi survey was developed with ten potential actions for clinicians to prioritise across five different clinical scenarios describing patients with cognitive difficulties. Scenarios varied in terms of age of the stroke-survivor, stroke severity and use of dementia risk assessment. A panel of professional volunteers was obtained through the British Association of Stroke Physicians and the UK National Stroke Nursing Forum. RESULTS: Forty-five stroke clinicians completed round one, with 21 participants completing round two. Priorities consistently supported by professionals included access to psychological services, screening for a mood disorder and ensuring multi-professional input. Direct access to specialist memory services was not generally supported unless a dementia risk assessment tool indicated that the individual was at high risk of dementia. CONCLUSIONS: Assessment of post-stroke cognitive deficits needs to be routinely considered during the six-month review. A formal risk assessment tool could be a way to streamline direct access to memory clinic services to ensure that individuals at-risk of dementia receive ongoing care.