Jodie Burchell

Individualised mindfulness-based stress reduction for head and neck cancer patients undergoing radiotherapy of curative intent: a descriptive pilot study.

People with head and neck cancer (HNC) experience elevated symptom toxicity and co-morbidity as a result of treatment, which is associated with poorer psychosocial and quality-of-life (QoL) outcomes. This Phase I study examined whether an individualised mindfulness-based stress reduction (IMBSR) programme could be successfully used with HNC patients undergoing curative treatment. Primary aims were to explore feasibility, compliance, acceptability and fidelity. Secondary aims were to determine whether (1) participation in the intervention was associated with changes in post-intervention mindfulness and (2) post-intervention mindfulness was associated with post-intervention distress and QoL. Nineteen HNC patients participated in a seven-session IMBSR programme with pre- and post-test outcome measures of psychological distress, depression, anxiety and QoL. Primary aims were assessed by therapists or participants. Mindfulness, distress and QoL were assessed using self-report questionnaires at pre- and post-intervention. Longer time spent meditating daily was associated with higher post-intervention mindfulness. After controlling for pre-intervention mindfulness, there was an association between higher post-intervention mindfulness and lower psychological distress and higher total, social and emotional QoL. This study offers important preliminary evidence than an IMBSR intervention can be administered to HNC patients during active cancer treatment. A randomised controlled trial is warranted to confirm these findings.

Comparative Effectiveness of Routine Invasive Coronary Angiography for Managing Unstable Angina

Acute coronary syndromes consist of ST-segment elevation myocardial infarction (MI), nonST-segment elevation MI, and unstable angina. The latter 2 conditions, collectively termed nonST-segment elevation acute coronary syndromes, are differentiated primarily by whether the patients troponin level is elevated (nonST-segment elevation MI) or not (unstable angina). Reported rates of unstable angina have declined with the introduction of high-sensitivity troponin testing, which identifies patients with nonST-segment elevation MI (1). However, patients with unstable angina still account for one quarter to one half of all those with acute coronary syndromes who present to the hospital (2, 3). In general, current guidelines recommend routine invasive coronary angiography for patients with nonST-segment elevation MI but not for those with unstable angina (46). European guidelines recommend a selective rather than routine invasive strategy for patients with a negative troponin test, no further chest pain, no evidence of heart failure, and a normal electrocardiogram; however, they do not give explicit advice regarding the timing of angiography in all patients with unstable angina and negative biomarkers (6). The U.S. guidelines advise against a routine, early, invasive strategy in patients (particularly women) with troponin-negative chest pain and a low likelihood of acute coronary syndromes (4). Five trials have included patients with unstable angina; the 3 largestthe FRISC II (Fragmin and Fast Revascularization During Instability in Coronary Artery Disease [1996 to 1998]) trial (n= 2456, 45% with negative biomarkers) (7), the TACTICS TIMI 18 (Treat Angina With Aggrastat and Determine Cost of Therapy With an Invasive or Conservative StrategyThrombolysis in Myocardial Infarction 18 [1997 to 1999]) trial (n= 2220, 46% with negative biomarkers) (8), and RITA-3 (Randomized Intervention Trial of Unstable Angina 3 [1997 to 2001]) (n= 1810, 25% with negative biomarkers) (9)were done in the era of dual-antiplatelet therapy and stenting. Several meta-analyses of these trials have been conducted (1012), 2 of which commented on patients with biomarker-negative unstable angina. Mehta and colleagues (12) found that among patients with negative results on troponin testing, the odds of death or acute MI within the average follow-up of 17.3 months were 11% lower in those who received invasive management; however, this finding was not statistically significant (odds ratio [OR], 0.89 [95% CI, 0.67 to 1.18]). Manfrini and colleagues (11), using a different meta-analytic approach, reported a statistically significant decrease in odds of 21% (OR, 0.79 [CI, 0.70 to 0.90]) for studies including patients with unstable angina. Of note, all included trials had high crossover rates, with nearly 50% of the control group having revascularization within 2 years, predominantly to manage refractory symptoms or recurrent acute coronary syndromes (13). To add to the evidence in this area, we sought to examine the effect of a routine invasive management strategy, beginning with invasive coronary angiography and followed by revascularization as indicated, on the cumulative risk for death at 12 months in patients with unstable angina by using clinically coded hospital discharge data from Victoria, Australia, between 2001 and 2011. Moreover, we used an analytic approach that accounted for additional angiograms, revascularizations, and acute coronary syndromes during this 12-month period. Methods Setting and Data Sources Victoria is Australias second largest state; during the study, its multiethnic population ranged from 4.8 million to 5.6 million. The states age and sex distribution is similar to that of the United States. Public hospitals are freely accessible to all permanent residents of Australia and are funded by state and federal governments through a prospective payment system with capped funding. Approximately 45% of Australians have private health insurance. In each hospital and emergency department in Victoria (131 public and 179 private hospitals), routinely collected data are coded by qualified coders (hospitals) or attending doctors (emergency departments) using the International Statistical Classification of Diseases and Related Health Problems, 10th Revision, Australian Modification (ICD-10AM), and the Australian Classification of Health Interventions, 7th edition. A statewide independent audit program maintains hospital coding quality, and a series of internal logic checks combined with manual reviews of randomly selected case groups ensures high-quality data linkage. Linked death data released for this project were rounded to the nearest month of death after hospital discharge. Study Population The sampling frame included all patients admitted to the hospital from 1 July 2001 to 30 June 2011 who had a discharge diagnosis of unstable angina (ICD-10AM 4-digit code I200 as a primary diagnosis) but no history of acute coronary syndromes, invasive coronary angiography, percutaneous coronary intervention, or coronary artery bypass grafting in the year before this index hospitalization. The University of Melbourne ethics committee approved the study (approval number 1033080). Statistical Analysis Data are presented as frequencies and percentages for categorical variables and as means and SDs for continuous variables. To quantify the treatment effect of angiography (henceforth referred to as the treatment effect) on the cumulative incidence of death at 12 months in patients with unstable angina, we obtained 3 treatment effect estimates: the average treatment effect, the average treatment effect in treated patients, and the average treatment effect in untreated patients. The average treatment effect provides a whole-population perspective, as if the entire sample of observed patients with unstable angina were moved from the untreated to the treated group (14). The average treatment effect in treated patients demonstrates the effect of angiography in the sample who originally were chosen for treatment; this subsample may be younger, with fewer comorbid conditions. The average effect of treatment in untreated patients estimates the effect of angiography if patients who did not receive this treatment had received it. This group likely is older and frailer, with more comorbid conditions. To account for the observational nature of the data, a propensity score was developed from which weights were calculated for each treatment effect. These weights were used in separate discrete-time survival models to estimate each treatment effect (14, 15). To determine the association between angiography and mortality given the time variability of further angiograms, revascularizations, and acute coronary episodes, these events were included as time-varying covariates (16). The model also included further adjustments for age, sex, and comorbidity burden based on Charlson comorbidity score. Sensitivity analysis was conducted to determine whether the presence of an unmeasured confounder (such as receipt of optimal medical therapy) altered the observed treatment effect. The prevalence in the exposed versus unexposed group (the prevalence gap) and the effect size of the putative unmeasured confounder used in the sensitivity analysis were based on the basis of previous studies. The sensitivity analysis was performed by using the user-written Stata (StataCorp) command episensrri (17). All analyses were performed by using Stata 13.1 (18). Further details on the statistical methods are presented in the Appendix. Role of the Funding Source Grants from the National Health and Medical Research Council, the Victorian Department of Health and Human Services, and the BUPA Health Foundation funded the study; none of the funders had any role in study design, conduct, or reporting. Results Our study included 33901 patients with a primary diagnosis of unstable angina (Figure 1); their baseline characteristics are presented in Table 1. Figure 1. Flowchart of sample selection. Table 1. Baseline Characteristics of Overall and Propensity ScoreWeighted Samples* In the overall sample, 43% of patients received angiography at the index admission and an additional 9% received it within 12 months (mostly within 3 months of the index admission). The proportion of patients receiving revascularization at index admission was similar to that of patients who received it later: 41.1% versus 42.5% (Table 2). Of patients who had 2 or more angiograms during the 12-month period, nearly 100% had revascularization after the second angiogram. At the index hospitalization, percutaneous coronary intervention was performed twice as often as coronary artery bypass grafting; this ratio decreased to 1.7:1 when angiography and revascularization were delayed. Table 2. Receipt of ICA and Revascularization in Overall Sample* During the 12 months after the index admission, approximately 3.1% of patients who received angiography and 5.2% of those who did not (P < 0.001) had at least 1 readmission for acute MI (Table 3). Readmission was more than 3 times likelier during the first month after the index admission than in the subsequent 11 months. Table 3. Hospital Readmissions After Index Hospitalization for Unstable Angina in Overall Sample, Stratified by the Receipt of ICA at Index Admission* Characteristics of weighted samples used to evaluate the average treatment effect represent those of all patients with unstable angina, characteristics of those used to evaluate the effect in treated patients represent those of patients who received angiography, and characteristics of those used to evaluate the effect in untreated patients represent those of patients who did not receive angiography. Patients who received angiography were younger, mostly male, and from rural areas; a larger proportion arrived by ambulance and used private health insurance. The comorbidity burden and cardiac sequelae were fairly similar, whereas car

Toll-like Receptor Expression and Signaling in Peripheral Blood Mononuclear Cells Correlate With Clinical Outcomes in Acute Hepatitis C Virus Infection

BACKGROUND Mechanisms by which spontaneous clearance of acute hepatitis C occurs are unclear. A critical role for the innate immune system and IFNL4 polymorphisms has been proposed. This study investigates whether Toll-like receptor (TLR) expression and signaling during acute hepatitis C correlates with clinical outcomes. METHODS Participants identified from the Australian Trial in Acute Hepatitis C and the Networks study were followed longitudinally from the time of diagnosis of acute hepatitis C. Peripheral blood mononuclear cells (PBMCs) and plasma were collected at and 2 time points after diagnosis. At each time point, TLR2, TLR4, and CD86 expression on peripheral blood monocytes, natural killer (NK) cells, and NK T cells was measured, as well as the response of PBMCs to stimulation with TLR ligands. Cytokine and chemokine levels were measured in stimulated PBMCs and plasma. RESULTS We identified 20 participants with acute hepatitis C (10 with hepatitis C virus [HCV] monoinfection and 10 with HCV and human immunodeficiency virus coinfection). Eleven participants (55%) spontaneously cleared HCV. Acute hepatitis C and spontaneous clearance was associated with lower TLR4 expression on monocytes (P = .009) and NK cells (P = .029). Acute hepatitis C and spontaneous clearance was also associated with a reduced interferon γ response to TLR4 (P = .038) and TLR7/8 stimulation (P = .035), a reduced interleukin 6 response to TLR7/8 stimulation (P = .037), and reduced IFN-γ-inducible protein 10 (IP-10) response to TLR2 stimulation (P = .042). Lower plasma IP-10 levels were associated with spontaneous clearance (P = .001). CONCLUSIONS These findings implicate TLR4 signaling as playing a critical role in the outcome of acute hepatitis C.

Responding to urgency of need: Initial qualitative stage in the development of a triage tool for use in palliative care services:

Background: Palliative care services face the challenge of a workload increasing in volume and diversity. An evidence-based triage method to assess urgency of palliative care needs is required to ensure equitable, efficient and transparent allocation of specialist resources when managing waiting lists. Aim: As the initial stage of a mixed-method sequential design, this study aimed to explore palliative care providers’ practices and attitudes towards triaging palliative care needs and their views regarding the implementation of a standardised approach. Design: A qualitative study was conducted involving focus groups and interviews. Transcripts were subjected to deductive thematic analysis. Setting/Participants: A total of 20 palliative care providers were purposively sampled to ensure representation across disciplines (primary, specialist; medicine, nursing and allied health), service types (inpatient, hospital liaison and community) and locations (metropolitan and rural). Results: A series of markers of urgency were identified, including physical and psychological suffering, caregiver distress, discrepancy between care needs and care arrangements, mismatch between current site of care and desired site of death when in terminal phase and complex communication needs. Performance status and phase of disease were reported to be less informative when considered in isolation. Interpersonal and system-based barriers to the implementation of a palliative care triage tool were highlighted. Conclusion: The process of triage in the palliative care setting is complex but can be conceptualised using a limited number of domains. Further research is required to establish the relative value clinicians attribute to these domains and thus inform the development of an acceptable and useful evidence-based palliative care triage tool.

Exploring the Landscape of Palliative Care for People with Non-Hodgkin's Lymphoma: Do they Receive Quality End of Life Care?

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 Quality of End of Life Care of Patients with Metastatic Small Cell Lung Cancer: Does it Differ from Other Lung Cancer Patients?

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.