bluuebunny/crossref_metadata_2025_split huggingface dataset:
35 Online randomised controlled trial to improve clinical estimates of survival (ORACLES): study design
Authors: Oostendorp Linda , White Nicola , Harries Priscilla , Yardley Sarah , Tomlinson Christopher , Ricciardi Federico , Gokalp Hulya , Stone Patrick 
Published: August 2018

IntroductionClinicians often struggle to recognise whether palliative care patients are imminently dying.1 2A previous study identified the factors that expert palliative care doctors (with demonstrated prognostic skills) had used to judge the probability of patients dying within 72 hours.Aim and methodsTo evaluate whether an online training resource can teach medical students to formulate survival estimates for palliative care patients that are more similar to experts’ estimates. In this online randomised controlled trial we will recruit 128 students in the penultimate/final year of medical school. Participants are asked to review three series of vignettes describing patients referred to palliative care and provide estimates (0%–100%) about the probability that patients will die within 72 hours. After the first series of vignettes students in the intervention arm are given access to the training resource showing how experts weighted the various symptoms/signs. Participants are asked to complete a second series of vignettes and then a third series after two weeks to assess if any effect has been maintained.ResultsStudents’ survival estimates will be correlated with experts’ estimates to determine the baseline level of agreement and any changes following the intervention. The primary outcome will be the survival estimates provided in the second series of vignettes. Secondary outcomes include the estimates provided at the follow-up the weighting of symptoms/signs and levels of discrimination and consistency.ConclusionThis study will provide evidence about whether a brief low-cost online training resource can influence how medical students make prognostic decisions in an experimental setting.References. Neuberger J. More care less pathway: A review of the liverpool care pathway.Department of Health2013. Available from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/212450/Liverpool_Care_Pathway.pdf [Accessed: 30thMay 2018]. White N, Reid F, Harris A, Harries P, Stone P. A systematic review of predictions of survival in palliative care: How accurate are clinicians and who are the experts?PLoS One25 August 2016;11(8):e0161407. Available from: http://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0161407&type=printable [Accessed: 30th May 2018]
4 Designing dying well: toward a new architectural approach of in-patient palliative care environments
Authors: Bellamy Annie 
Published: August 2018

Neither a ‘hospital’ nor a ‘home’; the in-patient hospice has a unique architectural identity remaining largely undocumented. There is a plethora of architectural research regarding more common-place healthcare buildings such as hospitals and care-homes. (RIBA n.d) However the architecture of in-patient hospices is misunderstood in the role it can play in supporting the holistic principles of palliative care as backdrops for ‘not just a good death but a good life to the very end’ (Gawande 2014, pg. 245).Reconciling the social and spatial this research aims to establish an authentic identity for in-patient hospices; developing opportunities and situations for environments that become ‘sympathetic extensions of our sense of ourselves’ (Bloomer KC + Moore CW 1977, pg. 78) enabling those at the end of their life to dwell with dignity.An ethnographic study involving practise led design research; the research engages with experiences of the researcher and users of Welsh in-patient hospices alongside interrogations of existing architectural strategies. This inter-disciplinary methodology will provide a ‘back and forth’ movement to reflect with the community of practise upon design projects and fieldwork.Foundation work concluded that ‘homely’ is a too broad and subjective concept with which to define meaningful architectural responses for the variety of users and uses of in-patient hospices. Building upon this initial visits to Welsh in-patient hospices and design primers of key moments of inhabitation aims to provide conclusions on how architecture can create and balance the individual phenomenological experiences and needs of patients family and staff.References. RIBA.Health buildings and hospitals[Online] (n.d). Available at https://www.ribabookshops.com/books/health-buildings-and-hospitals/010503/ (Accessed: 31 May 2018). Gawande A.Being mortal: Medicine and what matters in the end2014;245. New York: Metropolitan Books Henry Holt and Company.. Kent BC, Charles MW.Body memory and architecture1977;78. New Haven & London: Yale University Press.
40 Detailing public involvement (PI) within a study of bereavement support services for adults bereaved through advanced illness
Authors: Seddon Kathy , Fitzgibbon Jim , Harrington Barbara , Morgan Fiona , Scott Hannah , Sivell Stephanie , Pickett Sara , Longo Mirella , Byrne Anthony , Nelson Annmarie , Harrop Emily 
Published: August 2018

IntroductionAdults experiencing a loss might develop complicated grief reactions which is associated with mental and physical health problems. This study included a systematic review of the evidence and the development of a core outcome set for bereavement research in palliative care. Public involvement was integral throughout. The collaborative relationship with the research partners (RPs) was fully planned and then documented through reflective log sheets.AimTo detail the research partners’ contribution to the study.MethodologyRPs helped refine the RQ. The study protocol set out the steps needed to ensure that:Research design and methods used were appropriate for bereaved adultsStudy documentation and outputs were accessible to ‘lay’ readersRPs ‘experience based’ expertise was embedded in ongoing project planning outputs and future research designThe experience for RPs was worthwhile leading to new skills and knowledgeReflective log sheets were used to capture how well this was achieved. These were completed independently by the researcher and RPs. Their reflections were shared at quarterly meetings.ResultsThe reflective logs confirmed that steps one to five were carried out. RP inputs achieved the planned impact (e.g. the questionnaires held hardly any missing data reflecting content and face-validity). Enhancement of the bereavement research through planned documented collaboration was thus confirmed.ConclusionWell planned and documented PI enhances the quality of health care research. Researchers felt that the solid collaboration with the research partner broadened their perspective and signalled a clear departure from a simple tick box exercise.
41 ‘We should not shy away from asking what it is that patients want’ a supplementary qualitative analysis of the jla peolcpsp free text data
Authors: Sivell S , Baillie J , VanGodwin J , Byrne A , Nelson A 
Published: August 2018

IntroductionPalliative and end-of-life care is under-researched (Higginson 2016) with stakeholders likely to have a range of unmet communication information and support needs. The James Lind Alliance (JLA) Priority Setting Partnership (PeolcPSP) identified the pertinent ‘treatment uncertainties’ for palliative and end-of-life care focusing on interventional based research (JLA PeolcPSP Survey 2015). Respondents also submitted comments that were out of scope of the JLA methodology.AimTo undertake a supplementary analysis of JLA PeolcPSP survey free text data focusing on communication information and support needs.MethodsA supplementary thematic qualitative analysis of the JLA PeolcPSP free-text data was undertaken in the final dataset of 1403 responses. The original coding framework was reviewed and refined until agreement was reached (Nelson 2016).ResultsApproximately one third of respondents (n=444; 31.65%) were included in this analysis; four overarching themes were identified:Availability accessibility and improving information: focusing on support and guidance as well as improving and finding information.Effectiveness of communication between stakeholders: openness and transparency between stakeholders; improving the communication of diagnosis and prognosis; exploring decision–making responsibilities.Eliciting preferences and values: treatment decisions Advance Care Planning and preferred place of care.Spiritual and psychosocial needs:providing emotional and psychological support for patients carers and professionals.ConclusionsWe identified a wide range of communication and decision-making concerns as well as psychosocial support adding further insight to the survey results. Both quantitative and qualitative approaches are recommended if we are to meet all stakeholders’ needs in palliative and end-of-life care.References. Higginson IJ. Research challenges in palliative and end of life care. BMJ Supportive & Palliative Care2016;6:2–4.. Nelson A. Between the lines/beyond the questions; Shared experiences of palliative and end of life care.Summary ReportJuly 2016. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/publications/beyond-the-questions-esrc-report.pdf. Palliative and end of life care Priority Setting Partnership (PeolcPSP). (2015).Final Report15 January 2015. Available from https://www.mariecurie.org.uk/globalassets/media/documents/research/PeolcPSP_Final_Report.pdf (Accessed: 30 May 2018)
42 Bittersweet life in the face of loss: the experience of parenteral nutrition for women with ovarian cancer and their relatives
Authors: Sowerbutts Anne Marie , Lal Simon , Clamp Andrew , Jayson Gordon C , Todd Chris , Raftery Anne-Marie , Hardy Lisa , Sutton Eileen , Sremanakova Jana , Burden Sorrel 
Published: August 2018

IntroductionPatients with advanced ovarian cancer can develop bowel obstruction. Oral intake is limited in these patients and home parenteral nutrition (PN) may be used to meet nutritional requirements.AimTo explore patient and family experience of home PN.MethodNinety-three longitudinal in-depth interviews were conducted with 20 women with ovarian cancer and inoperable bowel obstruction receiving PN, their lay-carers and healthcare professionals. Interviews were transcribed verbatim and analysed thematically influenced by the techniques of Van Manen (1990).ResultsWomen and their relatives viewed PN as increasing length of life and allowing the women to live at home with some normality. However, the treatment was not without problems which may not be acknowledged by healthcare professionals. These included difficulties with activities of daily living, incursions of physical freedom as patients were attached to heavy PN bags and dealing with the bureaucracy associated with PN. Healthcare professionals were working to a patient-centred rather than a family-centred palliative care model, which could be problematic for some families with frail relatives. However, carers coped but emotionally were often left in a vulnerable state.ConclusionsFor patients and carers the treatment was a life line and they appreciated the extra time the women received. However this was gained through many losses which healthcare professionals need to portray accurately and implement a family-centred palliative care model when appropriate. Nevertheless, patients are prepared to suffer losses in order to continue living.Reference. Van Manen M.Researching lived experience: Human science for an action sensitive pedagogy1990. London Ont: Althouse Press.
43 Decision making about prognoses in multidisciplinary teams: an ethnographic study
Authors: Fordham Florence Todd , McCullagh Angela , Stone Paddy 
Published: August 2018

IntroductionThis study uses ethnographic methods to explore multidisciplinary team decision-making with a focus on prognoses at the end of life.Previous research highlights that patients carers and clinicians value accurate prognostication. Both the recognition of dying and communicating this to patients and carers were acknowledged as key unanswered research questions in the PeolcPSP.Providing quality palliative care requires different specialisms to meet the needs of the whole person – medically but also spiritually emotionally and socially. Multidisciplinary teams are considered vital to ensure that care is of the highest quality and that decisions made are evidence-based.AimThis study aims to understand how palliative multidisciplinary teams form collective judgements about prognoses.MethodsEthnography provided an appropriate methodology for this study as it facilitates the documentation of prognostic estimates in MDTs capturing insights into the perspectives and practices of team members exploring the influences of the structure location and nature of the meetings. Through observations and semi-structured interviews ethnography allowed an interrogation of the issues in decision-making.Results and next stepsPreliminary findings have highlighted that different disciplines use prognoses in diverse ways. For example social workers and discharge administrators use prognoses to fast-track care decisions and funding favouring an accurate numerical score whilst the medical team use prognoses as a suggestion of appropriate care preferring fluid descriptive terms.The findings will be used to will inform recommendations for future guidelines to MDTs to improve communication and decision making while discussing the prognoses of patients at the end of life.References. Adams E, Boulton M, Watson E. The information needs of partners and family members of cancer patients: A systematic literature review.Patient Education & Counseling2009;77(2):179–86.. Steinhauser KE, Christakis NA, Clipp EC, et al.Preparing for the end of life: Preferences of patients families physicians and other care providers.Journal of Pain & Symptom Management2001;22(3):727–37.. Kutner JS, Steiner JF, Corbett KK, et al. Information needs in terminal illness. Social Science & Medicine1999;48(10):1341–52.. Steinhauser KE., Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients family physicians and other care providers. JAMA2000;284(19):2476–82.. The Palliative and end of life care Priority Setting Partnership (PeolcPSP). Final Report (January 2015). https://palliativecarepsp.files.wordpress.com/2015/01/peolcpsp_final_report.pdf. Blazeby J, Wilson L, Metcalfe C, et al. Analysis of clinical decision making in multi-disciplinary cancer teams. Annals of Oncology2006;17:457–60.
45 Maximising recruitment to clinical trials in hospices- experience of a multicentre study using the ‘social marketing mix framework’
Authors: White Clare , Noble Simon , Watson Max , Swan Flavia , Johnson Miriam 
Published: August 2018

IntroductionResearch in specialist palliative care units (SPCUs) has traditionally been considered difficult and studies are limited with poor recruitment and high attrition rates making interpretation of results challenging.AimsTo analyse recruitment from a UK multisite study in 5 SPCUs which recruited above target and compare recruitment strategies with recommendations from the ‘Social Marketing Mix Framework’ (SMMF) and learn lessons for future research in SPCUs.MethodsRecruitment data from the HIDDen (Hospice Inpatient DVT Detection) Study was analysed and compared with SMMF recommendations for improving recruitment to trials in palliative care.ResultsOver 17 months 1390 patients with cancer were screened for HIDDen study inclusion in five SPCUs (three in N. Ireland, one in England and one in Wales) 797 (57%) patients were ineligible. 206 (35% of those eligible) declined participation with 387 (65% of those eligible) recruited. When compared with the ‘6Ps’ of SMMF the study protocol addressed ‘Participants’ with broad study eligibility criteria ‘Product’ by replicating clinical practice with no change to routine clinical care and no competing trials ‘Price’ through minimising patient and carer burden and easing the consent process ‘Place’ by being done in patients own room in the SPCU and using five sites ‘Promoting’ through role play and maintaining the research profile and ‘Partners’ by addressing gatekeeping and minimising input from clinical staff by having on-site research staff.DiscussionGood recruitment to trials is possible in a SPCU setting and use of the ‘6Ps’ of SMMF can help in trial design and recruitment.Reference. Dunleavy L, Walshe C, Oriani A, Preston N. Using the ‘social marketing mix framework’ to explore recruitment barriers and facilitators in palliative care randomised controlled trials? A narrative synthesis review.Palliative Medicine2018;32(5):990–1009. doi:10.1177/0269216318757623
47 The impact of supportive-expressive group therapy (SEGT) as an intervention on health-related outcomes and social support for people with advanced disease: a systematic review
Authors: Bei Eva , Kupeli Nuriye , Candy Bridget 
Published: August 2018

IntroductionSEGT has been found to be a valuable manualised model of therapy for reducing emotional distress facilitating the person’s management of the disease-related symptoms and improving quality of life in cancer populations (Butleret al. 2009; Classenet al. 2001; Lemieuxet al. 2007). The fundamental domains covered by this model include promoting emotional expression confronting existential issues and optimising social support (Classenet al. 2001; Spiegel Bloom and Yalom 1981). Despite trials there are to our knowledge no systematic reviews that have sought to critic and pool evidence from all Randomised Controlled Trials (RCTs) on SEGT for people with advanced disease.AimsTo critique and pool the evidence from RCTs on the effectiveness of SEGT as a palliative care intervention for patients with advanced disease.MethodsFour databases (Pubmed Medline CINAHL PsycINFO) conference proceedings and grey literature were searched for relevant studies in April 2018. A combination of MeSH and free-text terms on SEGT and end-of-life were used. Key review processes will be undertaken in duplicate. If appropriate meta-analysis will be considered.ResultsThe search identified unique 2291 citations. Screening these identified 27 potential relevant studies. Following full text review and contact with the authors of not-available full text papers five RCTs on SEGT met our inclusion criteria.ConclusionsThis review is at data extraction phase it will be completed by September. Further understanding of the quality of evidence impact of SEGT on health-related outcomes and social support will allow conclusion to be made for clinical practice.References. Butler LD, Koopman C, Neri E, Giese-Davis J, Palesh O, Thorne-Yocam KA, Dimiceli S, Chen X, Fobair P, Kraemer HC, Spiegel D. Effects of supportive-expressive group therapy on pain in women with metastatic breast cancer. Health Psychology2009;28(5):579–587.. Classen C, Butler LD, Koopman C, Miller E, DiMiceli S, Giese- Davis J, Fobair P, Carlson RW, Kraemer EC, Spiegel D. Supportive-expressive group therapy and distress in patients with metastatic breast cancer: A randomized clinical intervention trial. Archives of General Psychiatry2001;58:494–495.. Lemieux J, Beaton ED, Hogg-Johnson S, Bordeleau JL, Hunter J, Goodwin PJ. Responsiveness to change to change due to supportive-expressive group therapy improvement in mood and disease progression in women with metastatic breast cancer. Qual Life Res2007;16:1007–1017.. Spiegel D, Bloom JR, Yalom I. Group support for patients with metastatic cancer. A randomized outcome study. Archives of General Psychiatry1981;38:527–533.
49 The use of patient-held records by children and young people managing a health condition: a realist review of the literature
Authors: Diffin Janet , Byrne Bronagh , O’Halloran Peter 
Published: August 2018

IntroductionPatient-held records (PHRs) are proposed to improve communication and coordination of care amongst young people with life-limiting conditions their families and health professionals. However implementation of PHRs has proved difficult due to technical organisational and professional barriers.1AimsTo identify the factors which help or hinder the use of PHRs by young people with life-limiting conditions.MethodSystematic realist review. Literature was sourced from six databases: Medline Embase CINAHL PsychInfo The Cochrane Library Science Direct (from 1946 to December Week 1 2016). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme (CASP) tool.ResultsNine articles were included each reporting on a different PHR. Young people (and/or parents/carers) with conditions of higher severity requiring ongoing care more medications and frequent appointments with multiple providers were more engaged with the PHR. Service providers need sufficient knowledge about the PHR and organisations need to ensure staff can see the benefits of using the PHR for implementation success. Mechanisms triggered by the PHR included improved self-advocacy and young people becoming empowered to self-manage their condition.ConclusionClear definitions of which young people would benefit from using a PHR must be established in order to direct resources accordingly. These definitions will help inform which organisations and service providers would see the most reward from PHR implementation.Reference. Archer N, Fevrier-Thomas U, Lokker C, McKibbon KA, Straus SE. Personal health records: A scoping review.Journal of American Medical Information Association2011;18(4):515–522.
55 Palliative care for people with motor neurone disease. An integrative literature review
Authors: Hollowood Lorna 
Published: August 2018

Motor neurone disease (MND) is a rare progressive neurodegenerative disease which results in muscle weakness reduced mobility dysphagia and speech and breathing difficulties with no curative treatment or remission where 50% of patients die within three years of their first symptom and many dying within a year of diagnosis (Whiteheadet al.2012 Wood-Allum 2014). Access to palliative care for people with motor neurone disease (MND) is an area of concern for the person with the condition as well as the carers supporting them (NICE 2016). This literature review examines the specific challenges in palliative care for people with MND and their carers.A systematic search was undertaken of the literature yielding 534 articles. This was reduced by inclusion and exclusion criteria to 43 articles which were selected for critical appraisal for their relevance to the topic using MacKenzie et al’s (2010) quality review tool resulting. 16 articles were themed using Thomas and Harden’s (2008) thematic analysis approach.Four themes emerged from the literature: the specific needs of carers of people with MND; Service provision; hope and depression and ethical decision-making.Despite a lack of quantifiable data relating to specialist palliative care to improve palliative outcomes in people with MND the literature shows that MND patents and their care-givers have a great need for integrated services which are equipped to deal with their very specific needs. The management of hope and depression should form an integral part of the palliative care provision. Advance care planning offers a framework to support communication between services and families. The symptoms experienced at end of life require specialist skills to manage and needs the support of a multidisciplinary team.References. Whitehead B, O’Brien MR, Jack BA, Mitchell D. Experiences of dying death and bereavement in motor neurone disease: a qualitative study.Palliative Medicine[online] 2012;26(4):368–78. Available from: MEDLINE. Wood-Allum CA. Unanswered questions and barriers to research in the palliative care of motor neurone disease patients.Journal of Palliative Care[online] 2014;30(4):302–306. Available from: Academic Search Complete. NICE.Motor neurone disease: assessment and management NICE guidelines[NG42] [online]2016. Available from: https://www.nice.org.uk/guidance/cg105