Marlene Malmström

Quality of life measurements as an indicator for timing of support after oesophagectomy for cancer: a prospective study.

BackgroundOesophagectomy is a major procedure with known side effects and reduced postoperative quality of life (QOL). It has been shown that support of patients in their new life situation is often lacking. Knowledge about how QOL changes over time is fundamental for addressing patient needs and for determining the optimal timing of supportive care. The aim of this study was to identify QOL changes over time as well as factors that may impact patient QOL during the first year after oesophagectomy for cancer.MethodsPatients operated on for adenocarcinoma or squamous cell cancer of the oesophagus were included in this study. Seventy-nine patients completed the European Organisation for Research and Treatment of Cancer QOL questionnaires (QLQ-C30 and QLQ-OES18) before and 2, 4, 6, 9, and 12 months after surgery. A general linear model with repeated measurement analysis of variance was used for statistical testing.ResultsThere was a significant QOL nadir at 2 months compared to 12 months after surgery (QLQ-C30 function scales p < 0.001, symptom scales p < 0.001, QLQ-OES18 scales p < 0.001). Treatment with proton-pump inhibitors was associated with enhanced QOL according to QLQ-C30 symptom scales (p = 0.003) and OES-18 scales (p = 0.015), but age, gender and American Society of Anaesthesiologists classification did not significantly impact QOL.ConclusionsPatient QOL is severely hampered the first year after oesophagectomy for cancer, with a nadir at 2 months after surgery. Treatment with proton-pump inhibitors improved patient responses to symptom scales. Evidence of severely affected QOL after surgery indicates that these patients need support at an early stage after surgery. These results can be used by healthcare professionals to develop a postoperative supportive-care programme that is timed and better optimised to meet patient needs. Trial registration: EudraCT database 2009-009997-28.

Patients' initial steps to cancer diagnosis in Denmark, England and Sweden: What can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?

Objectives To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. Design Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer. Participants 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview. Setting Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants’ homes. Results Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden. Conclusion We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.

Translation and cultural adaptation of the integrated palliative care outcome scale for use in Sweden

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.