Hilary Buchanan

Potentially Inappropriate Prescribing Among People with Dementia in Primary Care: A Retrospective Cross-Sectional Study Using the Enhanced Prescribing Database

BACKGROUND Little is known about prescribing appropriateness for community-dwelling people with dementia (PWD). OBJECTIVE To estimate potentially inappropriate prescribing (PIP) prevalence among PWD in primary care in Northern Ireland, and to investigate associations between PIP, polypharmacy, age, and gender. METHODS A retrospective cross-sectional study was conducted, using data from the Enhanced Prescribing Database. Patients were eligible if a medicine indicated for dementia management was dispensed to them during 1 January 2013-31 December 2013. Polypharmacy was indicated by use of ≥4 repeat medications from different drug groups. A subset of the Screening Tool of Older Persons Potentially Inappropriate Prescriptions (STOPP) criteria, comprising 36 indicators, was applied to the dataset. Overall prevalence of PIP and the prevalence per each STOPP criterion was calculated as a proportion of all eligible persons in the dataset. Logistic regression was used to investigate associations between PIP, polypharmacy, age, and gender. RESULTS The study population comprised 6826 patients. Polypharmacy was observed in 81.5% (n = 5564) of patients. PIP prevalence during the study period was 64.4% (95% CI 63.2- 65.5; n = 4393). The most common instance of PIP was the use of anticholinergic/antimuscarinic medications (25.2%; 95% CI 24.2-26.2; n = 1718). In multivariable analyses, both polypharmacy and gender (being female) were associated with PIP, with odds ratios of 7.6 (95% CI 6.6-8.7) and 1.3 (95% CI 1.2-1.4), respectively. No association was observed between PIP and age, after adjustments for gender and polypharmacy. CONCLUSION This study identified a high prevalence of PIP in community-dwelling PWD. Future interventions may need to focus on certain therapeutic categories and polypharmacy.

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

BackgroundPain 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.MethodsA 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.ResultsEighteen 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.ConclusionsTelementoring 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.

“There’s a Catch-22”. The complexities of pain management for people with advanced dementia nearing the end of life: a qualitative exploration of physicians’ perspectives

Background: Pain management is a cornerstone of palliative care. The clinical issues encountered by physicians when managing pain in patients dying with advanced dementia, and how these may impact on prescribing and treatment, are unknown. Aim: To explore physicians’ experiences of pain management for patients nearing the end of life, the impact of these on prescribing and treatment approaches, and the methods employed to overcome these challenges. Design: Qualitative, semi-structured interview study exploring barriers to and facilitators of pain management, prescribing and treatment decisions, and training needs. Thematic analysis was used to elicit key themes. Setting/participants: A total of 23 physicians, responsible for treating patients with advanced dementia approaching the end of life, were recruited from primary care (n = 9), psychiatry (n = 7) and hospice care (n = 7). Results: Six themes emerged: diagnosing pain, complex prescribing and treatment approaches, side effects and adverse events, route of administration, importance of sharing knowledge and training needs. Knowledge exchange was often practised through liaison with physicians from other specialities. Cross-speciality mentoring and the creation of knowledge networks were believed to improve pain management in this patient population. Conclusion: Pain management in end-stage dementia is complex, requiring cross-population of knowledge between palliative care specialists and non-specialists, in addition to collateral information provided by other health professionals and patients’ families. Regular, cost- and time-effective mentoring and ongoing professional development are perceived to be essential in empowering physicians to meet clinical challenges in this area.

“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

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.

I Don't Need a Piece of Paper with Scores to Tell Me that Somebody's in Pain and I Need to Do Something about it. Nurses' and Healthcare Assistants' Perspectives on and Use of Pain Assessment Tools with People Dying with Advanced Dementia

Background: People dying with advanced dementia areoften unable to effectively self-report pain and are at riskof under-assessment which may hinder pain diagnosis andmanagement. Pain assessment tools for use in advanceddementia are available but their use by physicians withdying patients has not been explored.Aims: To explore hospice, secondary and primary carephysicians’ use of pain assessment tools with patientsdying with advanced dementia.Methods: Twenty-three, semi-structured, face-to-facephysician interviews were conducted and transcribed verbatim.Thematic analysis was applied to identify corethemes across healthcare settings. Three researchers verifiedfinal themes.Results: Four key themes emerged: non-use of painassessment tools; perceived limitations of tools; clinicaloutcomes of use and improving pain assessment. Physiciansdid not routinely use pain assessment tools withpatients dying with advanced dementia. Information fromphysical examination, physiological parameters andpatient observation in addition to collateral patient historyfrom families and nursing staff were perceived to providea more reliable and holistic approach to assessment andmanagement. Scoring subjectivity, proxy-reporting andoverreliance on nonverbal and behavioural cues were limitationsassociated with pain tools. Physicians perceived theclinical outcome of pain tool use to be quicker identificationand reporting of pain by nurses. Most physiciansbelieved pain assessment could be improved via betterintegration of secondary, hospice and primary care servicesin addition to ongoing medical education andmentoring.Conclusion: Physicians preferred clinical investigationand collateral patient history from family and other healthprofessionals to assess pain and guide management. Thesefindings have important implications for medical education,practice and health policy.Funding: HSC Research and Development Division, PublicHealth Agency, Northern Ireland.PROJECT TEAM MEMBERS Dr Martin Dempster, Queen’s University Belfast (Joint lead applicant) Dr Noleen McCorry, Marie Curie Hospice, Belfast (Joint lead applicant) Dr Kathy Armour, Marie Curie Hospice, West Midlands Professor Joanna Coast, University of Birmingham Professor Joachim Cohen, Vrije Universiteit, Brussels Dr Michael Donnelly, Queen’s University Belfast Dr Anne Finucane, Marie Curie Hospice, Edinburgh Dr Joan Fyvie, Marie Curie Hospice, Belfast Dr Louise Jones, Royal Free & University College Medical School Professor George Kernohan, University of Ulster Dr Kathleen Leemans, Vrije Universiteit, Brussels Dr Sean O’Connor, Queen’s University Belfast Professor David Oxenham Dr Paul Perkins, Sue RyderBackground: Management of advanced chronic obstructive pulmonary disease (COPD) should relieve symptoms, optimise daily functioning and reduce carer burden. Health care professional (HCP) barriers and facilitators to meeting patient and carer needs exist but our understanding of them is limited, and we don’t know stakeholder views of actionable responses to them. Aim: To identify barriers and facilitators to HCPs’ ability to meet patient and carer needs in advanced COPD, and stakeholder views of actionable responses to them. Method: HCPs were nominated by a population-based cohort of patients participating in the multiple-perspective mixed-method Living with Breathlessness Study. We purposively sampled 45 HCPs for topic-guided interviews: medical and nursing specialists and generalists from primary and secondary care. Verbatim transcripts analysed with framework approach. National stakeholder workshop (October 2015) will review actionable responses. Results: Barriers and facilitators to meeting needs exist at operational, professional and patient levels, varying by professional group and setting. Barriers included: the drive of organisational and medical agenda, focus on prognostication and patient categorisation, time constraints, lack of confidence and skills in psychological support and end of life conversations, lack of patient support needs assessment, lack of referable services, service location, managing expectations (commissioners and patients), and non-compliance. Facilitators included: longevity of patient-HCP relationships, listening skills, accessibility and patient expertise. Some HCPs described the facilitative effect of the study interviews for reflection on their clinical practice. Stakeholder views of actionable-responses will be reported. Conclusion: Actioning stakeholder-endorsed responses to HCP barriers and facilitators to meeting needs could improve care and support of patients and carers living with advanced COPD.Background: Palliative and end of life care research is an underdeveloped research area. The importance of setting research priorities has been recognized internationally, however to date, this has largely been led by researchers and academics. James Lind Alliance advocate an approach to research priority setting whereby patients, carers and clinicians work together to agree the most important questions.Aim: To identify and prioritise research questions for palliative and end of life care from the perspective of patients, carers and health care professionals in Ireland.Method: Mixed methods four stage approach.Stage 1: was part of a larger national study, which involved a survey focused on uncertainties of care, (n=1403 responses), subsequently categorized as interventional questions, into a list of questions (n=83).Stage 2: An online survey asking user/carer organizations and professional groups in Ireland to rate these questions in terms of low to high priority (n=168 responses).Stage 3: Involved a final prioritization workshop, using nominal group technique undertaken with user/carers (n=16), resulting in the identification of the top ten research priority for Ireland. Stage 4: Comprised a strategic workshop with academics, researchers and funders from the island of Ireland, to develop action plans for each of the areas.Results: The top ten areas were identified and include aspects such as co-ordination of care; out of hours; care at home; pain and symptom management, palliative care and non-cancer and advanced care planning.Conclusions: This process enables researchers to demonstrate that their research is relevant, targeted and valuable to the people who most need it. We will report preliminary findings on the process and types of questions proposed. Discussion with key stakeholders contributes to better co-ordination, seeking to address the highest priority areas together.Funded: AIIHPC, larger study led by Marie Curie UKGood communication is of utmost importance in all forms of cancer care and especially so in the palliative context. To render the ungraspable graspable, metaphors are frequently used drawing on the ...Background: The experience of care transitions for family carers of a relative living with dementia do not necessarily lessen once their relative is admitted to a care home.Goals of care and end of life care decisions need to be made. The process of reaching these decisions can be significantly challenging.Aim: To explore the experience of family carers responsible for decision-making on behalf of a relative living with advanced dementia through their transitions from the community into a care home.Method: Carers of a resident living with dementia were offered an individual interview in a qualitative study within a randomised trial evaluating an Advanced Care Planning intervention in care homes in Northern Ireland,UK. Twenty participants completed a semi-structured audio recorded interview, from which transcripts were thematically analysed.Results: Interviews highlighted that carers were at differentstages of the decision-making process for their relative’s carewhen they were admitted to the care home. Some had previouslydiscussed end of life care wishes with their relative,whereas others had to make an informed choice for the care without prior discussions. The emotional impact of this transition varied from high levels of stress and extreme guilt, to a sense of relief that their relative was content and safe in their new setting. Some carers reported that this decision process left them feeling isolated due to family conflict, but support was also available for others from their new ‘family’:the care home staff. However, reports of poor communication with and amongst staff, and inconsistencies of healthcare provision were an additional source of distress.Conclusion: Key findings which require further investigation include: holding goals of care decision-making earlier in the dementia disease trajectory; recognition of family dynamics; the need for improved knowledge to facilitate informed decision-making, and improving communication with and between staff.Background: Evidence suggests that end-of-life care in heart failure is poor, characterized by high levels of symptoms, inadequate support and poor quality of life. Family carers play a crucial role in supporting advanced HF patients yet there is a lack of knowledge on the needs and experiences of carers for this group of patients.Aim: To examine the palliative care needs, quality of life, perceived burden and level of preparedness of carers of people living with advanced heart failure.Methods: A sequential confirmatory mixed methods approach comprising two phases.Phase 1: Postal survey with carers identified via a database of patients living with advanced heart failure (NYHA Classification III-IV, ejection fraction < 40% and ⩾ 1 unscheduled hospital admission in the previous 12 months) across Ireland. Data included measures of depression, anxiety, QoL, perceived social support and illness beliefs, caregiver burden, needs assessment and preparedness for caregiving. Inclusion criteria: carers identified by the patient as the main person who provides care.Phase 2: semi structured face to face interviews with carers (n=20). Thematic analysis of verbatim transcripts was used to identify emergent themes. Descriptive and inferential data analysis using SPSS was undertaken.Results: 82 carer responses was obtained (response rate 47%). Nearly one third of the carers experienced moderate to severe levels of depression and anxiety and their quality of life was impacted by their caregiving role. They spent a considerable time on caregiving tasks with over 60% spending over 50 hours per week. Themes from the qualitative interviews indicated that the carers considered that their life is on hold; expressing feelings of isolation and frustration at a perceived lack of support.Conclusions: Carer’s needs are variable depending on the patients’ medical stability. A holistic approach is needed to support these carers.Funding: Health Research Board & AIIHPC.Background: Patient-reported outcome measurements are important for measuring changes in patients’ health over time, evaluating the quality of care given, and improving the quality of care service. ...Background: User involvement is widely promotedwithin health and social care policy as an effective meansof developing patient-centred services. This has, however,particular challenges for palliative care, as patients arelikely to be experiencing poor health, are psychologicallyvulnerable and socially isolated. Nevertheless this is animportant agenda for palliative care to address. Voices-4Care is a user/carer Forum comprised of: patients serviceusers, carers or former carers, and people from the widercommunity across the island of Ireland.Aim: To evaluate the implementation process, contributionand lessons learnt from a Voices4Care initiative thathave wider international relevance.Method: A mixed methods approach comprised of fourstrands of work. Phase 1: Review of the literature on modelsof user involvement; Phase 2: secondary analysis anddocument review of user involvement activities and process;Phase 3: Two focus group with members of user/carer Forum (n= 14) and Phase 4: Key stakeholder telephoneinterviews with policy and hospice representatives(n=10) were conducted. Thematic analysis of verbatimtranscripts was used to identify emergent themes.Results: it was found that the Forum provided a supportivecontext in which the voices of users and carers could be heard,valued and contribute to mutual sharing of information andexperiences. The impact of the forum was identified at personal,practice and policy levels. The personal level developeda sense of empowerment whilst the practice level challengedprofessional complacency and triggered discussions.The policy level was considered as more aspirational withpotential for further development. Challenges were notedhowever with sustainability and building on progress to date.Conclusions: Organisational cultures need to be supportiveof user involvement and dedicated resources; leadershipand openness are key factors for sustainabilityThe UK Consensus Project on Quality in Palliative Care Day Services is funded by MarieCurie and based at Queen’s University, Belfast. It is being carried out in collaboration with anumber of other academic institutions and key stakeholder organizations. The project willinvolve and take into account the perspectives of a range of different stakeholders and itsoutcomes will be relevant to patients, family members, palliative care professionals, andpolicy makers. The aim is to use an expert consensus process to develop a set of qualityindicators for assessment of all aspects [structure, process and outcomes] of quality of care in Palliative Care Day Services. This expert panel will include around 20 people from all over the UK who work in, or have experience of day services. The panel will include a wide range of different professionals and volunteers, as well as people who have experience of attending day services as a patient, a carer or family member.Agreement on a quality indicator set will be reached using the RAND/UCLA Appropriateness Method [1], a method of reaching consensus based on differing opinions. The first stage of the process will involve a panel of 20 experts individually considering and rating the appropriateness of potential quality indicators. Ratings will be based on their own experience and knowledge, as well as a series of evidence summary tables drawn up based on a systematic review carried out to identify existing indicators relevant to palliative care day services. Ratings will be analysed and summarised in advance of the second round, at an expert panel meeting. At this meeting quality indicators and their preliminary ratings will be discussed and re-rated. All ratings will be made anonymously. Unlike other consensus development processes, complete agreement is not required. During the meeting, discussions will be focused specifically on any areas of disagreement, in order to understand how and why the variation was found. Indicators will be considered to be “appropriate” if they have a median rating of 7 or more without disagreement. Disagreement will be defined as more than 30% of panel members give a rating of 3 or less to a potential indicator. An indicator will be considered as “not appropriate” if its median score is 3 or less without disagreement (disagreement being when 30% or more of the ratings are 7 or more). When the median rating is between 4 and 6, or if disagreement is observed, the appropriateness of the indicator will be considered as uncertain and it will be discussed at the panel meeting. The following options will be offered to the panel members: acceptance of a quality indicator, rejection or adjustment of a quality indicator, and merging multiple indicators into a single quality indicator. Panel members will also be asked to identify additional indicators not on the original list, modify existing indicators that may require re-wording and remove those perceived to be irrelevant. Following this discussion, a revised list of indictors will be developed, and panel members will re-rate the appropriateness of each. Panel members will also be asked to rate the feasibility or practicability of measuring each indicator in a typical day service setting using the same 9-point scale. At the end of the process, a set of quality indicators will be developed that passed the first round of individual rating as well as the second-round discussion. This set of quality indicators will be sent to the expert panel by e-mail after the meeting, as well as to other stakeholders, for final approval. Following this, further work will be conducted to develop and test the suitability of a toolkit which can be used to measure quality indicators in palliative care day services.Background: Evidence suggests ACP can improve thecare provided to people with dementia in long-term caresettings (LTCSs), facilitating their participation in caredecisions. However, few people with dementia haveengaged in ACP, despite it being advocated by internationalpolicy. The role of health care professionals is integralto addressing this deficit, therefore further understandingof their perspective is needed.Aim: To examine registered nursing home managers(RMs) knowledge & attitudes in relation to ACP for peoplewith dementia in LTCSs.Design: A cross-sectional postal survey was carried out aspart of a larger scale sequential explanatory mixed methodsstudy. An adapted survey instrument was used, developedthrough incorporation of results from an in-depthanalysis of the literature & consultation with key experts inACP & dementia. Principal component analysis was conducted,revealing 6 components.Setting/participants: All registered nursing home managersemployed by homes caring for people with dementiaacross Northern Ireland (n=178).Results: Response rate of 66% achieved(n=116). Thelevel of knowledge in relation to ACP was poor, with correspondinglow levels of confidence reported. A lack ofclarity surrounding who should lead the process was evident.Varying levels of support impacted on practice. Thepositive influence of ACP training was evident, with subsequentincreased perceived control reported. However,RMs struggle with the ethical dilemma created when outweighingthe potential benefits of ACP to the person withdementia with the desire to protect them.Conclusions: Whilst RMs recognise the potential benefitsof ACP, intention to engage is influenced by several interrelatedfactors, making implementation in practice complex.Enhanced understanding of the factors which influencetheir perspective will contribute to the developmentof future educational support and guidance, in order toimprove facilitation of ACP in this setting.Objective: Despite increasing levels of research evidencebeing generated in palliative care, there appear to be severalbarriers to the implementation of research in practice.The aim of this project was to review knowledge transferand exchange (KTE) frameworks used in health settingsand assess their relevance to palliative care.Methods: In line with PRISMA guidelines, a systematicscoping review was developed to search articles included insix electronic databases (including MEDLINE, EMBASE,CINAHL and PsycINFO) for four terms (knowledge, transfer,framework, healthcare) and their variations.Results: The search identified 4288 abstracts, with 294eligible for full-text screening, resulting in 79 papers analysed.Studies were published between 1985 and 2014 (twothirds since 2006); the majority were conducted in North America. In total 87 models were indicated, with the PromotingAction on Research Implementation in Health ServicesFramework (PARIHS) being the most common (n =15).The key components of the models include a partnershipor collaborative approach to KTE, focus on the needsof the audience, and an awareness of different modes ofcommunication. The papers were appraised for relevanceto the palliative care and it was found that the study or thetarget population were relevant in many of the papers. Thecomponents most relevant to palliative care were used toestablish a proposed model of KTE for palliative care.Conclusions: The model offers guidance as to effectiveways of translating different types of research knowledgeto care providers and stakeholders, and could be utilised inhospital, community and home based settings as well as toinform future research. It is recommended that researchersadopt this model of KTE for palliative care in futureresearch to ensure that research is conducted with knowledgetransfer in mind.Background: Palliative care day services (typically known as “day hospices”) are provided routinely across Europe. Due largely to the historically localised nature of development, there is wide variability in the organisation and content of services, which militates against strategic planning and development.Aims: We aimed to address this knowledge deficit by identifying core service provision within one country by mapping three regional providers of palliative care day services. Methods: A retrospective, observational study design, using the Donabedian quality framework, involved two components. Firstly, a review of local policy and operational documents at each site provided information on the structure of each service (how care is organised). This covered four key areas: service organisational structure; funding arrangements and expenditure; staffing and management structure, and; other information relevant to estimating the costs of service delivery. Secondly, a retrospective review of the clinical records of patients referred to the service at each site delivered information on the process of care (what is provided). Using reported attendance figures, cases were randomly selected according to a proportionate regime. Results: The review covers key features of: the local-level patient populations, including socio-economic and diagnostic profile; referral, allocation and discharge; all interventions offered; service uptake, and; contextual information onpatient circumstances, need and preferences for care. Itdelivers a comprehensive body of evidence concerning thestructure and process of UK palliative care day services.Conclusions:Our study makes a fundamental contributionto a previously limited evidence base on the organisation,content and mechanisms of delivery of palliative care dayservices.Background: Evidence indicates that people nearing endof life fear loss of dignity and a central tenet of palliativecare is to help people die with dignity. The Dignity CareIntervention (DCI), based on the Chochinov theoreticalmodel of dignity care, comprises four components: educationmanual; patient dignity inventory, reflective questionsand care actions.Aim: To evaluate the usability and acceptability of a DignityCare Intervention (DCI) delivered by communitynurses for people with advanced and life limitingconditions.Method: Mixed methods research design, with threephases.Phase 1: Semi-structured, face-to-face interviews withpatient/carer dyads (n=18),Phase 2: four focus groups with (n=24) and an onlinesurvey with community nurses (n=27),Phase 3: analysis of completed DCI tools (n=27). Datawere analysed using thematic analysis of verbatim transcriptsand descriptive statistical analysis.Results: The DCI was acceptable to the communitynurses. It contributed to the overall assessment of palliativecare patients; identified areas that might not otherwisehave been identified; supported communication andassisted the nurses to provide holistic end of life care. Concernshowever were expressed that the tool ‘opened a canof worms’ initiating difficult conversations for which thenurses felt unprepared. The patients however found thatthe tool helped them to identify and consider future needsand were happy to discuss death and dying.Conclusion: The DCI helped nurses to delivered individualisedholistic care. Whilst all the nurses wished to continueto use the DCI, there were barriers identified such asthe time taken to complete; the identification of suitablepatients and the need for more training to enable them toinitiate difficult conversations on dignity conserving careand end of life care.Background & aim: The evidence-base for educational interventions to support informal carers and enhance their caregiving capacity is limited. Our aim was to develop an evidence-based educational intervention on breathlessness in advanced disease for carers. Method: Stage 1: Qualitative in-depth interviews with purposive sample of 25 patient-carer dyads from two disease groups (COPD and cancer) to identify educational needs and intervention preferences. Stage 2: One-day multidisciplinary workshop with 13 clinical experts to identify evidence-based content and acceptability and feasibility of potential delivery modes. Stage 3: Two half-day workshops (one COPD and one cancer) with 10 carers and seven patients to review intervention content, format, and language. Qualitative data analysis used a Framework approach. Results: Carers wanted to learn about breathlessness. Six key topics emerged from patient-carer dyad interviews: understanding breathlessness, de-escalating anxiety and panic, keeping active, living positively, managing infections (in COPD), and knowing what to expect in the future. There was wide variation in how carers wanted to learn, but written resources were less popular than face-to-face, group, video and web-based learning. Carers wanted an intervention that drew on both clinical expertise and peer-carer experience. In general, they wanted to learn with the patient. Building on these findings, the clinical expert workshop identified evidence-based content for the six topics and discussed a potential web-based platform to facilitate multiple modes of access e.g. via clinicians, established support groups, or by carers independently. Carer workshops endorsed the need for the intervention, its content and format, and refined its language and presentation style. Conclusion: Developed with carer, patient and clinician expertise this educational intervention on breathlessness has the potential to be highly relevant and acceptable to carers.

Development of Telementoring to Enhance Assessment and Management of Pain in Advanced Dementia (TEAM Pain AD) teleECHO© Clinics for Healthcare Professionals in Primary, Secondary, Nursing Home and Hospice Settings

Background: Communication is present in all encounters in care and of importance to create a caring relation. A good relation between patients, next of kin and health care staff is crucial, not lea ...Background: Previous research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of nonmalignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease and their bereaved carers in the North and Republic of Ireland. Methods: Qualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from a rural and urban site in Northern Ireland, and a rural and urban site in the Republic of Ireland. Data collection consisted of semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3-18 months previously; and 4 focus groups with healthcare professionals. Data were analysed using thematic analysis. Results: Findings highlighted the lack of a clear model of holistic care delivery for patients with non-malignant respiratory disease and illuminated the varying levels of palliative care provision this client group experienced. Additionally, ambiguity amongst healthcare professionals regarding prognostication illuminated the importance of the provision of palliative care being based on patient need, not prognosis. This research developed a potential model of palliative care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory of non-malignant respiratory disease, whilst also encouraging the involvement of specialist palliative care for complex symptom management. Conclusion: This research provides an important insight into a potential model of palliative care for people with non-malignant respiratory disease, inclusive of bronchiectasis, which incorporates palliative care in a responsive and dynamic way. However, the feasibility of integrating this model into clinical practice requires further exploration.number: INV1 Abstract type: Invited Speaker Integrating Palliative Care Aside Curative Treatment in HematoOncological Diseases LeBlanc Thomas Duke Cancer Institute, Durham, NC, USA Patients with hematologic malignancies are much less likely to receive palliative care services, as compared to those with solid tumors. Yet hematologic malignancy patients appear to have similar palliative care needs, including a marked symptom burden, and significant psychological distress. In addition, those with hematologic malignancies are more likely to die in the hospital, receive chemotherapy in the last 2 weeks of life, or spend time in an intensive care unit at end of life. They are also less likely to utilize hospice care services at all, and when they do utilize hospice care, they are much more likely to die within the first few hours or days of enrollment as compared to those with solid tumors. In this lecture, a dual-trained oncologist and palliative care physician will: (1) review the evidence demonstrating marked unmet palliative care needs in hematology patients, (2) highlight differences in hematologic diseases (and hematologists) that call for a unique approach to palliative care integration, and (3) demonstrate opportunities to collaborate with our colleagues in hematology to address the unmet palliative care needs of those living with hematologic malignancies. Abstract number: INV2 Abstract type: Invited Speakernumber: INV2 Abstract type: Invited Speaker Emerging International Evidence: What’s New in Nursing Community-based Palliative Care? Mcilfatrick Sonja1,2 1Ulster University, Belfast, United Kingdom, 2All Ireland Institute of Hospice and Palliative Care, Dublin, Ireland Palliative care should be provided to all in need irrespective of place. Evidence indicates that the majority of people would prefer to die at home and yet the majority of people are still dying in hospital. Global policy recommendations emphasize the role of community care for accessible palliative care provision. There is, however, an emerging evidence base for and global pattern towards death in the community setting, influenced by multiple factors including the role of nursing in the community context. However various challenges remain, particularly questions and ambiguity around the role of the specialist and generalist nurse; linked to other considerations such as the need for early identification of patients, timeliness of referrals to SPC, and ongoing support and education for staff. Whilst various models of care have also been suggested to help inform the future development of community nursing in palliative care, questions remain around factors such as the impact on outcomes such as place of death, carer experience and patient quality of life. This presentation seeks to address some of these factors by posing the question: What is the emerging evidence in relation to community based palliative care and the implications for nursing Abstract number: INV3 Abstract type: Invited Speaker Advance Care Planning: How Nurses Can Lead the Way in Research and Practice Bakitas Marie1,2 1University of Alabama at Birmingham, School of Nursing, Birmingham, AL, USA, 2University of Alabama at Birmingham, Center for Palliative and Supportive Care, Birmingham, AL, USA Advance care planning (ACP) is the process whereby individuals define goals and preferences for future medical treatment and care, and communicate them to their family and health care providers. ACP is an important area of research and practice for nurses in general but especially for nurses concerned with palliative care. Despite large-scale educational and legal efforts to promote completion of an advance directive, a recent review found that in the United States (U.S.), only about a third of adults have completed one. U.S. and EAPC investigators have recently conducted Delphi studies to reach consensus on the most important ACP constructs and metrics that can move the field forward. However, more evidence is needed to define best practices for implementing the processes and strategies that can address patient-level, provider-level, and system level barriers so that ACP can be more fully integrated as a routine part of adult health care. Nurse scientists and clinicians in all practice settings are in unique positions to influence how patients engage effectively in ACP. A critical antecedent to influencing patients to engage in ACP is for nurses to understand the ACP process and complete their own advance directives. Then, nurses in practice need to identify opportunities within their health systems to translate best practices for promoting patient awareness, completion, and visible / retrievable documentation of conversations and documents that will ensure that patients’ values and preferences are honored. This presentation will describe recent research and strategies for nurses to be advocates in helping patients and their families to engage in the ACP process. Abstract number: INV4 Abstract type: Invited Speakernumber: INV4 Abstract type: Invited Speaker Nursing Research at the End of Life – What Is the Evidence Telling the Practice Teunissen Saskia Center of Expertise of Palliative Care Utrecht, the Netherlands University Medical Center Utrecht, Julius Center for Health Sciences and Primary Care, Utrecht, Netherlands Background: Personalized medicine asks for a structured route from bench to bedside. Personalized end of life research often does not come from benches but from bedsides. Nevertheless a structured route is needed to apply valuable results from bedsides to evidence based personalized care for as many patients and families as possible. Methods: A review of recent nursing research at the end of life and its applicability in daily practice. Results: A lot of research with various methods and measures have been done in an continuously heterogeneous population; end-of-life seems still difficult to define in research and practice. Five themes are selected for 10th World Research Congress of the European Association for Palliative Care (EAPC) 769196 PMJ0010.1177/0269216318769196Palliative MedicineEAPC 2018 Abstract Book research-article2018 Palliative Medicine 2018; 3–330 01_PMJ769196.indd 3 12/05/2018 12:26:51 PM 4 Palliative Medicine 32(1S) reflection on applicability in nursing practice in community-care, hospitaland hospice-care: 1) symptom management; 2) advance care planning (including improving hospital discharge, timely end-of-life care); 3) communication including personalized care plans, wish lists and multidisciplinary collaboration; 4) end-of-Life services (incl. early access and community-based support from hospices) and 5) nurse leadership and levels of competence. Conclusions: Evidence to support end of life care asks for a worldwide implementation to ameliorate patient and family outcomes. The challenge is in the diversity of definitions and cultures around the world as well the diversity of organization of palliative care and the aimed outcomes in relation to diagnostic categories. Abstract number: INV5 Abstract type: Invited Speakernumber: INV5 Abstract type: Invited Speaker So Palliative Care Works: What Now? Achieving the Routine Integration of Palliative Care in Clinical Practice Collins Anna University of Melbourne, Department of Medicine, St Vincent’s Hospital, Melbourne, Australia Since its inception, palliative care practice has evolved in response to the emerging evidence base and the needs of the population it serves. This has resulted in the increasing health system focus on models of early integration of palliative care, enabling improved quality of life, prevention of suffering, and the achievement of goals considered important by people with serious illness and their families. Yet, population data from international jurisdictions including those such as Australia with “advanced” systems of integrated care suggest a picture of missed opportunities, whereby patterns of care do not reflect the evidence for best practice. If palliative care represents “best quality care” for people with serious illness, why do many patients and their families engage late, or not at all? This presentation will explore the next steps for achieving routine integration in practice: when to introduce palliative care, how to talk about it with patients and their carers, and the need to shift community perceptions of palliative care. Mixed methods data will be drawn upon to discuss key opportunities for health system change, public health communication, and the future promotion of palliative care. Achieving the routine integration of palliative care in clinical practice requires not only a health system focus, but also strategic community engagement. Abstract number: INV6 Abstract type: Invited Speakernumber: INV6 Abstract type: Invited Speaker Children and Young People with Palliative Care Needs: what do the data tell us? Fraser Lorna Katherine Department of Health Sciences, University of York, UK The World Health Organisation’s definition of children palliative definition is clear that ‘It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease’. Palliative care services for children in the UK have developed over the last 30 plus years in a very organic and non –systematic way, with many of the services being provided by voluntary sector organisations. This has led to patchy availability of services and a poor understanding of the needs for these services. This presentation will summarise a programme of research, undertaken by the author, which has aimed to address some of these gaps in knowledge. The results of studies which have analysed routinely collected health and administrative data from the UK to estimate the number of children with life-limiting or life-threatening conditions, the stage of condition of these children and the benefits of specialist palliative care input in this population wil

A qualitative study of healthcare professionals’ perceptions of barriers and facilitators to successful medicines management for people with dementia in primary care.

not available: SESSION 1: GS MIXTE RESPIRATION Bitter taste receptors in the lung: a new pharmacological target? S Grassin-Delyle UPRES EA220, Hôpital Foch, Universit e Versailles Saint Quentin en Yvelines, Saint Quentin en Yvelines Bitter taste receptors (TAS2Rs) are known for long for their role in taste as sensors of the presence of toxic compounds in foods, but their unexpected expression in airways epithelium and smooth muscle cells or in peripheral blood leucocytes has been recently documented. This family of GPCRs includes about 25 members in humans and each subtype has a variable selectivity towards bitter compounds, some of them being restrictedly selective to a unique molecule and others responding to a wider range. More than a hundred molecules such as chloroquine, caffeine, strychnine, colchicine or erythromycin have thus been described as TAS2R agonists while TAS2R19, 41, 42, 45 and 60 are considered as orphans since no agonist has been identified. In the airways, the initial observation by Desphandes et al. (2010) described the relaxation of pre-contracted mouse trachea following exposure to chloroquine, denatonium, quinine or saccharine, which was suggested to be even more pronounced that the relaxation obtained with the reference relaxing agents b2 adrenoreceptor agonists. Interestingly, an original intracellular signaling pathway in the response of airway smooth muscle cells to bitter-taste receptor agonists was proposed, involving the G-protein bc subunit and leading to a localized increase in intracellular calcium, which in turn causes membrane hyperpolarisation through an activation of large conductance potassium channels (BK Ca). In addition to these results in cell cultures or airways preparations, inhaled bitter tastants were shown effective in decreasing airway resistance in ovalbumin-sensitized mice, but very little is known in humans to date. However, transcriptome analysis revealed upregulation of TAS2R signaling in peripheral blood leucocytes from patients with severe asthma, as well as a correlation between clinical markers of asthma severity and TAS2R expression. Overall, these works suggest that bitter taste receptors may constitute a new pharmacological target for obstructive lung diseases such as asthma and COPD. We will address the role of bitter taste receptors in respiratory pharmacology, with a special focus on results obtained in human tissues.

Pharmacists’ perceptions of the barriers and facilitators to successful medicines management for people with dementia in primary care

Abstract of paper presented at the Health Services Research and Pharmacy Practice Conference, University of Nottingham, UK, 10–11 April 2017In recent years, self-care has been in the forefront of UK health policy [1], with community pharmacies being promoted as a first point of contact for patients [2], when seeking advice for the treatment of a variety of conditions and minor ailments. As more medicines have become available without prescription this has led to community pharmacists dealing with a wider range of presenting problems and spending more time on making clinical decisions. Aims / objectives The area of how community pharmacists make a clinical diagnosis is under-researched. The aim of this exploratory study was to gain an initial insight on how community pharmacists make clinical decisions in order to reach a diagnosis. Method A qualitative methodology was employed where semi-structured, face-to-face interviews were conducted with community pharmacists that had been practicing for at least six months at the time of the interviews and did not hold, or were working towards, a prescribing qualification. Pharmacists were identified through snow balling sampling and consent sheets sent to their pharmacies’ registered address. Pharmacists who returned completed consent forms were recruited to the study. All interviews were audio recorded and transcribed ad verbatim. Interviews were analysed, with a team-based approach, using a clinical reasoning based framework analysis to identify themes and subthemes. Ethical approval was granted by the ethics committee at the University of Wolverhampton. Results Eight interviews were conducted across England, with five male and three female pharmacists, who had been practicing for periods ranging from one to forty years. The major theme that emerged from the analysis was the poor diagnostic knowledge and ability of the pharmacists and a non-evidence based approach to decision-making. Pharmacists constantly used and overly relied on mnemonic methods both for diagnostic purposes and product selection. Their motives within consultations appeared to be establishing an appropriate product to recommend, rather than the need to establish a diagnosis, and the inability to differentiate between the two processes. However, they did have a sense of the limitations of the methods they used and an awareness for the need to ‘delve deeper’ during consultations but could not articulate how or why this was the case. Themes and sub-themes are explained using confirmatory quotes from the data. Discussion or Conclusion The findings of this study suggest that even though community pharmacists are tasked with advising symptom-presenting patients, their poor clinical reasoning skills are preventing them from reaching appropriate diagnoses. In order for community pharmacists to better perform this role, greater emphasis should be given in teaching and practicing clinical reasoning skills during their studies and through continuous professional development. The study is limited by its small sample size. 1. Department of Health. The NHS Plan. A Plan for Investment, A Plan for Reform [Internet]. London: National Health Service; 2000 [cited 6 October 2012]. Available from: http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/publicationsandstatistics/publications/publicationspolicyandguidance/dh_4002960 2. Royal Pharmaceutical Society. Improving Urgent and Emergency care through better use of pharmacists [Internet]; 2014 [cited 5 October 2016]. Available from: http://www.rpharms.com/policy-pdfs/urgent-and-emergency-care.pdf

A Tool Doesn't Add Anything Physicians' Perceptions and Use of Pain Assessment Tools with People with Advanced Dementia Approaching the End of Life

Background: People dying with advanced dementia areoften unable to effectively self-report pain and are at riskof under-assessment which may hinder pain diagnosis andmanagement. Pain assessment tools for use in advanceddementia are available but their use by physicians withdying patients has not been explored.Aims: To explore hospice, secondary and primary carephysicians’ use of pain assessment tools with patientsdying with advanced dementia.Methods: Twenty-three, semi-structured, face-to-facephysician interviews were conducted and transcribed verbatim.Thematic analysis was applied to identify corethemes across healthcare settings. Three researchers verifiedfinal themes.Results: Four key themes emerged: non-use of painassessment tools; perceived limitations of tools; clinicaloutcomes of use and improving pain assessment. Physiciansdid not routinely use pain assessment tools withpatients dying with advanced dementia. Information fromphysical examination, physiological parameters andpatient observation in addition to collateral patient historyfrom families and nursing staff were perceived to providea more reliable and holistic approach to assessment andmanagement. Scoring subjectivity, proxy-reporting andoverreliance on nonverbal and behavioural cues were limitationsassociated with pain tools. Physicians perceived theclinical outcome of pain tool use to be quicker identificationand reporting of pain by nurses. Most physiciansbelieved pain assessment could be improved via betterintegration of secondary, hospice and primary care servicesin addition to ongoing medical education andmentoring.Conclusion: Physicians preferred clinical investigationand collateral patient history from family and other healthprofessionals to assess pain and guide management. Thesefindings have important implications for medical education,practice and health policy.Funding: HSC Research and Development Division, PublicHealth Agency, Northern Ireland.PROJECT TEAM MEMBERS Dr Martin Dempster, Queen’s University Belfast (Joint lead applicant) Dr Noleen McCorry, Marie Curie Hospice, Belfast (Joint lead applicant) Dr Kathy Armour, Marie Curie Hospice, West Midlands Professor Joanna Coast, University of Birmingham Professor Joachim Cohen, Vrije Universiteit, Brussels Dr Michael Donnelly, Queen’s University Belfast Dr Anne Finucane, Marie Curie Hospice, Edinburgh Dr Joan Fyvie, Marie Curie Hospice, Belfast Dr Louise Jones, Royal Free & University College Medical School Professor George Kernohan, University of Ulster Dr Kathleen Leemans, Vrije Universiteit, Brussels Dr Sean O’Connor, Queen’s University Belfast Professor David Oxenham Dr Paul Perkins, Sue RyderBackground: Management of advanced chronic obstructive pulmonary disease (COPD) should relieve symptoms, optimise daily functioning and reduce carer burden. Health care professional (HCP) barriers and facilitators to meeting patient and carer needs exist but our understanding of them is limited, and we don’t know stakeholder views of actionable responses to them. Aim: To identify barriers and facilitators to HCPs’ ability to meet patient and carer needs in advanced COPD, and stakeholder views of actionable responses to them. Method: HCPs were nominated by a population-based cohort of patients participating in the multiple-perspective mixed-method Living with Breathlessness Study. We purposively sampled 45 HCPs for topic-guided interviews: medical and nursing specialists and generalists from primary and secondary care. Verbatim transcripts analysed with framework approach. National stakeholder workshop (October 2015) will review actionable responses. Results: Barriers and facilitators to meeting needs exist at operational, professional and patient levels, varying by professional group and setting. Barriers included: the drive of organisational and medical agenda, focus on prognostication and patient categorisation, time constraints, lack of confidence and skills in psychological support and end of life conversations, lack of patient support needs assessment, lack of referable services, service location, managing expectations (commissioners and patients), and non-compliance. Facilitators included: longevity of patient-HCP relationships, listening skills, accessibility and patient expertise. Some HCPs described the facilitative effect of the study interviews for reflection on their clinical practice. Stakeholder views of actionable-responses will be reported. Conclusion: Actioning stakeholder-endorsed responses to HCP barriers and facilitators to meeting needs could improve care and support of patients and carers living with advanced COPD.Background: Palliative and end of life care research is an underdeveloped research area. The importance of setting research priorities has been recognized internationally, however to date, this has largely been led by researchers and academics. James Lind Alliance advocate an approach to research priority setting whereby patients, carers and clinicians work together to agree the most important questions.Aim: To identify and prioritise research questions for palliative and end of life care from the perspective of patients, carers and health care professionals in Ireland.Method: Mixed methods four stage approach.Stage 1: was part of a larger national study, which involved a survey focused on uncertainties of care, (n=1403 responses), subsequently categorized as interventional questions, into a list of questions (n=83).Stage 2: An online survey asking user/carer organizations and professional groups in Ireland to rate these questions in terms of low to high priority (n=168 responses).Stage 3: Involved a final prioritization workshop, using nominal group technique undertaken with user/carers (n=16), resulting in the identification of the top ten research priority for Ireland. Stage 4: Comprised a strategic workshop with academics, researchers and funders from the island of Ireland, to develop action plans for each of the areas.Results: The top ten areas were identified and include aspects such as co-ordination of care; out of hours; care at home; pain and symptom management, palliative care and non-cancer and advanced care planning.Conclusions: This process enables researchers to demonstrate that their research is relevant, targeted and valuable to the people who most need it. We will report preliminary findings on the process and types of questions proposed. Discussion with key stakeholders contributes to better co-ordination, seeking to address the highest priority areas together.Funded: AIIHPC, larger study led by Marie Curie UKGood communication is of utmost importance in all forms of cancer care and especially so in the palliative context. To render the ungraspable graspable, metaphors are frequently used drawing on the ...Background: The experience of care transitions for family carers of a relative living with dementia do not necessarily lessen once their relative is admitted to a care home.Goals of care and end of life care decisions need to be made. The process of reaching these decisions can be significantly challenging.Aim: To explore the experience of family carers responsible for decision-making on behalf of a relative living with advanced dementia through their transitions from the community into a care home.Method: Carers of a resident living with dementia were offered an individual interview in a qualitative study within a randomised trial evaluating an Advanced Care Planning intervention in care homes in Northern Ireland,UK. Twenty participants completed a semi-structured audio recorded interview, from which transcripts were thematically analysed.Results: Interviews highlighted that carers were at differentstages of the decision-making process for their relative’s carewhen they were admitted to the care home. Some had previouslydiscussed end of life care wishes with their relative,whereas others had to make an informed choice for the care without prior discussions. The emotional impact of this transition varied from high levels of stress and extreme guilt, to a sense of relief that their relative was content and safe in their new setting. Some carers reported that this decision process left them feeling isolated due to family conflict, but support was also available for others from their new ‘family’:the care home staff. However, reports of poor communication with and amongst staff, and inconsistencies of healthcare provision were an additional source of distress.Conclusion: Key findings which require further investigation include: holding goals of care decision-making earlier in the dementia disease trajectory; recognition of family dynamics; the need for improved knowledge to facilitate informed decision-making, and improving communication with and between staff.Background: Evidence suggests that end-of-life care in heart failure is poor, characterized by high levels of symptoms, inadequate support and poor quality of life. Family carers play a crucial role in supporting advanced HF patients yet there is a lack of knowledge on the needs and experiences of carers for this group of patients.Aim: To examine the palliative care needs, quality of life, perceived burden and level of preparedness of carers of people living with advanced heart failure.Methods: A sequential confirmatory mixed methods approach comprising two phases.Phase 1: Postal survey with carers identified via a database of patients living with advanced heart failure (NYHA Classification III-IV, ejection fraction < 40% and ⩾ 1 unscheduled hospital admission in the previous 12 months) across Ireland. Data included measures of depression, anxiety, QoL, perceived social support and illness beliefs, caregiver burden, needs assessment and preparedness for caregiving. Inclusion criteria: carers identified by the patient as the main person who provides care.Phase 2: semi structured face to face interviews with carers (n=20). Thematic analysis of verbatim transcripts was used to identify emergent themes. Descriptive and inferential data analysis using SPSS was undertaken.Results: 82 carer responses was obtained (response rate 47%). Nearly one third of the carers experienced moderate to severe levels of depression and anxiety and their quality of life was impacted by their caregiving role. They spent a considerable time on caregiving tasks with over 60% spending over 50 hours per week. Themes from the qualitative interviews indicated that the carers considered that their life is on hold; expressing feelings of isolation and frustration at a perceived lack of support.Conclusions: Carer’s needs are variable depending on the patients’ medical stability. A holistic approach is needed to support these carers.Funding: Health Research Board & AIIHPC.Background: Patient-reported outcome measurements are important for measuring changes in patients’ health over time, evaluating the quality of care given, and improving the quality of care service. ...Background: User involvement is widely promotedwithin health and social care policy as an effective meansof developing patient-centred services. This has, however,particular challenges for palliative care, as patients arelikely to be experiencing poor health, are psychologicallyvulnerable and socially isolated. Nevertheless this is animportant agenda for palliative care to address. Voices-4Care is a user/carer Forum comprised of: patients serviceusers, carers or former carers, and people from the widercommunity across the island of Ireland.Aim: To evaluate the implementation process, contributionand lessons learnt from a Voices4Care initiative thathave wider international relevance.Method: A mixed methods approach comprised of fourstrands of work. Phase 1: Review of the literature on modelsof user involvement; Phase 2: secondary analysis anddocument review of user involvement activities and process;Phase 3: Two focus group with members of user/carer Forum (n= 14) and Phase 4: Key stakeholder telephoneinterviews with policy and hospice representatives(n=10) were conducted. Thematic analysis of verbatimtranscripts was used to identify emergent themes.Results: it was found that the Forum provided a supportivecontext in which the voices of users and carers could be heard,valued and contribute to mutual sharing of information andexperiences. The impact of the forum was identified at personal,practice and policy levels. The personal level developeda sense of empowerment whilst the practice level challengedprofessional complacency and triggered discussions.The policy level was considered as more aspirational withpotential for further development. Challenges were notedhowever with sustainability and building on progress to date.Conclusions: Organisational cultures need to be supportiveof user involvement and dedicated resources; leadershipand openness are key factors for sustainabilityThe UK Consensus Project on Quality in Palliative Care Day Services is funded by MarieCurie and based at Queen’s University, Belfast. It is being carried out in collaboration with anumber of other academic institutions and key stakeholder organizations. The project willinvolve and take into account the perspectives of a range of different stakeholders and itsoutcomes will be relevant to patients, family members, palliative care professionals, andpolicy makers. The aim is to use an expert consensus process to develop a set of qualityindicators for assessment of all aspects [structure, process and outcomes] of quality of care in Palliative Care Day Services. This expert panel will include around 20 people from all over the UK who work in, or have experience of day services. The panel will include a wide range of different professionals and volunteers, as well as people who have experience of attending day services as a patient, a carer or family member.Agreement on a quality indicator set will be reached using the RAND/UCLA Appropriateness Method [1], a method of reaching consensus based on differing opinions. The first stage of the process will involve a panel of 20 experts individually considering and rating the appropriateness of potential quality indicators. Ratings will be based on their own experience and knowledge, as well as a series of evidence summary tables drawn up based on a systematic review carried out to identify existing indicators relevant to palliative care day services. Ratings will be analysed and summarised in advance of the second round, at an expert panel meeting. At this meeting quality indicators and their preliminary ratings will be discussed and re-rated. All ratings will be made anonymously. Unlike other consensus development processes, complete agreement is not required. During the meeting, discussions will be focused specifically on any areas of disagreement, in order to understand how and why the variation was found. Indicators will be considered to be “appropriate” if they have a median rating of 7 or more without disagreement. Disagreement will be defined as more than 30% of panel members give a rating of 3 or less to a potential indicator. An indicator will be considered as “not appropriate” if its median score is 3 or less without disagreement (disagreement being when 30% or more of the ratings are 7 or more). When the median rating is between 4 and 6, or if disagreement is observed, the appropriateness of the indicator will be considered as uncertain and it will be discussed at the panel meeting. The following options will be offered to the panel members: acceptance of a quality indicator, rejection or adjustment of a quality indicator, and merging multiple indicators into a single quality indicator. Panel members will also be asked to identify additional indicators not on the original list, modify existing indicators that may require re-wording and remove those perceived to be irrelevant. Following this discussion, a revised list of indictors will be developed, and panel members will re-rate the appropriateness of each. Panel members will also be asked to rate the feasibility or practicability of measuring each indicator in a typical day service setting using the same 9-point scale. At the end of the process, a set of quality indicators will be developed that passed the first round of individual rating as well as the second-round discussion. This set of quality indicators will be sent to the expert panel by e-mail after the meeting, as well as to other stakeholders, for final approval. Following this, further work will be conducted to develop and test the suitability of a toolkit which can be used to measure quality indicators in palliative care day services.Background: Evidence suggests ACP can improve thecare provided to people with dementia in long-term caresettings (LTCSs), facilitating their participation in caredecisions. However, few people with dementia haveengaged in ACP, despite it being advocated by internationalpolicy. The role of health care professionals is integralto addressing this deficit, therefore further understandingof their perspective is needed.Aim: To examine registered nursing home managers(RMs) knowledge & attitudes in relation to ACP for peoplewith dementia in LTCSs.Design: A cross-sectional postal survey was carried out aspart of a larger scale sequential explanatory mixed methodsstudy. An adapted survey instrument was used, developedthrough incorporation of results from an in-depthanalysis of the literature & consultation with key experts inACP & dementia. Principal component analysis was conducted,revealing 6 components.Setting/participants: All registered nursing home managersemployed by homes caring for people with dementiaacross Northern Ireland (n=178).Results: Response rate of 66% achieved(n=116). Thelevel of knowledge in relation to ACP was poor, with correspondinglow levels of confidence reported. A lack ofclarity surrounding who should lead the process was evident.Varying levels of support impacted on practice. Thepositive influence of ACP training was evident, with subsequentincreased perceived control reported. However,RMs struggle with the ethical dilemma created when outweighingthe potential benefits of ACP to the person withdementia with the desire to protect them.Conclusions: Whilst RMs recognise the potential benefitsof ACP, intention to engage is influenced by several interrelatedfactors, making implementation in practice complex.Enhanced understanding of the factors which influencetheir perspective will contribute to the developmentof future educational support and guidance, in order toimprove facilitation of ACP in this setting.Objective: Despite increasing levels of research evidencebeing generated in palliative care, there appear to be severalbarriers to the implementation of research in practice.The aim of this project was to review knowledge transferand exchange (KTE) frameworks used in health settingsand assess their relevance to palliative care.Methods: In line with PRISMA guidelines, a systematicscoping review was developed to search articles included insix electronic databases (including MEDLINE, EMBASE,CINAHL and PsycINFO) for four terms (knowledge, transfer,framework, healthcare) and their variations.Results: The search identified 4288 abstracts, with 294eligible for full-text screening, resulting in 79 papers analysed.Studies were published between 1985 and 2014 (twothirds since 2006); the majority were conducted in North America. In total 87 models were indicated, with the PromotingAction on Research Implementation in Health ServicesFramework (PARIHS) being the most common (n =15).The key components of the models include a partnershipor collaborative approach to KTE, focus on the needsof the audience, and an awareness of different modes ofcommunication. The papers were appraised for relevanceto the palliative care and it was found that the study or thetarget population were relevant in many of the papers. Thecomponents most relevant to palliative care were used toestablish a proposed model of KTE for palliative care.Conclusions: The model offers guidance as to effectiveways of translating different types of research knowledgeto care providers and stakeholders, and could be utilised inhospital, community and home based settings as well as toinform future research. It is recommended that researchersadopt this model of KTE for palliative care in futureresearch to ensure that research is conducted with knowledgetransfer in mind.Background: Palliative care day services (typically known as “day hospices”) are provided routinely across Europe. Due largely to the historically localised nature of development, there is wide variability in the organisation and content of services, which militates against strategic planning and development.Aims: We aimed to address this knowledge deficit by identifying core service provision within one country by mapping three regional providers of palliative care day services. Methods: A retrospective, observational study design, using the Donabedian quality framework, involved two components. Firstly, a review of local policy and operational documents at each site provided information on the structure of each service (how care is organised). This covered four key areas: service organisational structure; funding arrangements and expenditure; staffing and management structure, and; other information relevant to estimating the costs of service delivery. Secondly, a retrospective review of the clinical records of patients referred to the service at each site delivered information on the process of care (what is provided). Using reported attendance figures, cases were randomly selected according to a proportionate regime. Results: The review covers key features of: the local-level patient populations, including socio-economic and diagnostic profile; referral, allocation and discharge; all interventions offered; service uptake, and; contextual information onpatient circumstances, need and preferences for care. Itdelivers a comprehensive body of evidence concerning thestructure and process of UK palliative care day services.Conclusions:Our study makes a fundamental contributionto a previously limited evidence base on the organisation,content and mechanisms of delivery of palliative care dayservices.Background: Evidence indicates that people nearing endof life fear loss of dignity and a central tenet of palliativecare is to help people die with dignity. The Dignity CareIntervention (DCI), based on the Chochinov theoreticalmodel of dignity care, comprises four components: educationmanual; patient dignity inventory, reflective questionsand care actions.Aim: To evaluate the usability and acceptability of a DignityCare Intervention (DCI) delivered by communitynurses for people with advanced and life limitingconditions.Method: Mixed methods research design, with threephases.Phase 1: Semi-structured, face-to-face interviews withpatient/carer dyads (n=18),Phase 2: four focus groups with (n=24) and an onlinesurvey with community nurses (n=27),Phase 3: analysis of completed DCI tools (n=27). Datawere analysed using thematic analysis of verbatim transcriptsand descriptive statistical analysis.Results: The DCI was acceptable to the communitynurses. It contributed to the overall assessment of palliativecare patients; identified areas that might not otherwisehave been identified; supported communication andassisted the nurses to provide holistic end of life care. Concernshowever were expressed that the tool ‘opened a canof worms’ initiating difficult conversations for which thenurses felt unprepared. The patients however found thatthe tool helped them to identify and consider future needsand were happy to discuss death and dying.Conclusion: The DCI helped nurses to delivered individualisedholistic care. Whilst all the nurses wished to continueto use the DCI, there were barriers identified such asthe time taken to complete; the identification of suitablepatients and the need for more training to enable them toinitiate difficult conversations on dignity conserving careand end of life care.Background & aim: The evidence-base for educational interventions to support informal carers and enhance their caregiving capacity is limited. Our aim was to develop an evidence-based educational intervention on breathlessness in advanced disease for carers. Method: Stage 1: Qualitative in-depth interviews with purposive sample of 25 patient-carer dyads from two disease groups (COPD and cancer) to identify educational needs and intervention preferences. Stage 2: One-day multidisciplinary workshop with 13 clinical experts to identify evidence-based content and acceptability and feasibility of potential delivery modes. Stage 3: Two half-day workshops (one COPD and one cancer) with 10 carers and seven patients to review intervention content, format, and language. Qualitative data analysis used a Framework approach. Results: Carers wanted to learn about breathlessness. Six key topics emerged from patient-carer dyad interviews: understanding breathlessness, de-escalating anxiety and panic, keeping active, living positively, managing infections (in COPD), and knowing what to expect in the future. There was wide variation in how carers wanted to learn, but written resources were less popular than face-to-face, group, video and web-based learning. Carers wanted an intervention that drew on both clinical expertise and peer-carer experience. In general, they wanted to learn with the patient. Building on these findings, the clinical expert workshop identified evidence-based content for the six topics and discussed a potential web-based platform to facilitate multiple modes of access e.g. via clinicians, established support groups, or by carers independently. Carer workshops endorsed the need for the intervention, its content and format, and refined its language and presentation style. Conclusion: Developed with carer, patient and clinician expertise this educational intervention on breathlessness has the potential to be highly relevant and acceptable to carers.

The development of a core outcome set for medicines management interventions in people with dementia

Focal Points: Aim was to assess the impact of an educational intervention delivered by community pharmacists to improve self-management for people with mild to moderate psoriasis. Educational advice from pharmacists improved significantly patient knowledge, disease severity and quality of life. Community pharmacists could provide an important contribution to the care of patients with psoriasis Introduction: Psoriasis is a chronic inflammatory skin condition affecting up to 3% of the population in the UK. Most patients have mild to moderate disease which can be managed in primary care with topical therapies. Studies suggest that patients want, but rarely get, advice on the use of prescribed treatments. Community pharmacists have developed a more clinically focused supportive role with patients, though their role in helping those with long-term dermatological conditions is less clear. The aim of this research was to assess the impact of an educational intervention delivered by community pharmacists to improve self-management for people with mild to moderate psoriasis. Methods: Seven study pharmacies were selected based on their location (urban, rural etc.) to provide a range of different settings and pharmacists recruited via a comprehensive research network. Each was given a training guide on the management of psoriasis, with emphasis on patient education. Pharmacists identified patients prescribed topical psoriasis treatments, invited them to participate in the study (opportunistically or via a letter of invite) and obtained informed consent. During a face-to-face consultation in the pharmacy, the pharmacists provided education on psoriasis and its management and arranged a follow-up consultation 6 weeks later. During the consultations, pharmacists assessed patients’ knowledge and understanding of psoriasis and its management using the person-centred dermatology self-care index (PEDESI). This ten item tool evaluates the educational and support needs of those with long-term skin conditions. Pharmacists assigned an “ability score” for each item reflecting understanding. Scores were summed to give an overall score ranging from zero (worse state) to 30 (best state). In addition, disease severity and quality of life were self-assessed by patients using the self-assessed psoriasis and severity index (SAPASI) and dermatology quality of life index (DLQI) respectively. The primary outcome measure was the change in PEDESI score at at 6 weeks and secondary outcomes were changes in SAPASI and DLQI values. The study was approved by an NHS ethics committee. Results: Pharmacists recruited a total of 47 patients ̧ though 5 were lost to follow-up. The number of patients recruited per pharmacy ranged from 1 to 10. There was a significant increase in mean PEDESI scores (25.15 versus 17.78 P < 0.001) at 6 weeks compared to baseline. The increased mean PEDESI scores was mirrored by a rise in ability scores across all questions. Both SAPASI (11.60 versus 7.74, P < 0.001) and DLQI (7.21 versus 4.14, P < 0.001) scores improved significantly and 17 patients experienced a clinically meaningful change in quality of life, defined as a four-point improvement on the scale. Discussion: Pharmacist-led educational advice to patients with psoriasis improved disease and treatment knowledge, reducing disease severity and the impact on quality of life. Though limited by the sample size and a single follow-up, this is the first study to explore the potential role of pharmacists in helping to facilitate effective self-management in patients with long-term skin conditions. The results suggest a potential role for community pharmacists in the care of patients with psoriasis. Further studies are needed to explore the costeffectiveness of the intervention on patient-related disease outcomes compared to other services.