bluuebunny/crossref_metadata_2025_split huggingface dataset:
Cancer cachexia: rationale for the MENAC (Multimodal—Exercise, Nutrition and Anti-inflammatory medication for Cachexia) trial
Authors: Solheim Tora S , Laird Barry J A , Balstad Trude R , Bye Asta , Stene Guro , Baracos Vickie , Strasser Florian , Griffiths Gareth , Maddocks Matthew , Fallon Marie , Kaasa Stein , Fearon Kenneth 
Published: August 2018

Cancer cachexia is a multifactorial syndrome characterised by an ongoing loss of skeletal muscle mass that cannot be fully reversed by conventional nutritional support alone. Cachexia has a high prevalence in cancer and a major impact on patient physical function, morbidity and mortality. Despite the consequences of cachexia, there is no licensed treatment for cachexia and no accepted standard of care. It has been argued that the multifactorial genesis of cachexia lends itself to therapeutic targeting through a multimodal treatment. Following a successful phase II trial, a phase III randomised controlled trial of a multimodal cachexia intervention is under way. Termed the MENAC trial (Multimodal—Exercise, Nutrition and Anti-inflammatory medication for Cachexia), this intervention is based on evidence to date and consists of non-steroidal anti-inflammatory drugs and eicosapentaenoic acid to reduce inflammation, a physical exercise programme using resistance and aerobic training to increase anabolism, as well as dietary counselling and oral nutritional supplements to promote energy and protein balance. Herein we describe the development of this trial.Trial registration numberNCT02330926.
1 Evaluation of a nurse directed beds model of care in a stand-alone hospice inpatient unit (IPU)
Authors: Brigden Charlotte , Thorns Andrew , Hills Wendy , Timms Amanda 
Published: August 2018

IntroductionPatient complexity needs to be understood to match resources to need in palliative care (Pasket al.2018). A future increase in need for these services means alternative models of care should be considered (Etkindet al.2017). Pilgrims Hospice is unique in having three IPUs run by a single organisation covering a distinct geographical area. This set up enabled the implementation of a stand-alone nurse directed unit taking less medically complex patients alongside traditionally staffed IPUs.AimsThe project aimed to answer the following:Can we identify medical complexity prior to admission?Do nurse directed beds in a stand–alone unit improve use of resources produce similar outcome and satisfaction.MethodsData were collected from routine activity figures surveys of staff and service users’ thematic analysis of operational meetings and a focus group of staff at a strategic level. Tools were utilised to measure complexity and level of need (Gannon 2017).ResultsThe findings supported using resources more efficiently and for the nursing team to be empowered and developed.Concerns related to:Travel time when patients not admitted to the closest unit.Inefficient use of bedsA perceived need for a full multidisciplinary team including medicineDelay in death certificate completionThe medical complexity tool appeared unreliable as a triage toolConclusionsThe concept received support from participants. However we were unable to effectively answer the questions posed for a mixture of system data collection and methodological reasons. For nurse directed beds to be successful a different approach is required.References. Pask S, Pinto C, Bristowe K, van Vliet L, Nicholson C, Evans C, George R, Bailey K, Davies J, Guo P, Daveson B, Higginson IJ, Murtagh FEM. A framework for complexity in palliative care: A qualitative study with patients family carers and professionals. Palliative Medicine2018;32(6):1078–1090.. Etkind SN, Bone AE, Gomes B, Lovell N, Evans CJ, Higginson IJ. How many people will need palliative care in 2040? Past trends future projections and implications for services. BMC Medicine2017;15:102. Available at https://doi.org/10.1186/s12916-017-0860-2. Gannon C. P-82 what level of medical input do hospice inpatients need and does this correspond to their need for specialist nursing input? A service evaluation in a UK hospice.BMJ Supportive and Palliative Care2017;7(Suppl 1). Available at https://www.pah.org.uk/wp-content/uploads/2018/04/pah_jm_A0_medical_input_poster.pdf (Accessed: 25 May 2018)
13 Exploring patient safety incidents arising from advance care planning for end of life patients: a mixed methods analysis of incident reports
Authors: Dinnen Toby , Williams Huw , Noble Simon , Edwards Adrian , Kenkre Joyce , Hibbert Peter , Donaldson Liam , Carson-Stevens Andrew 
Published: August 2018

IntroductionAdvance Care Planning (ACP) is an important component of patient centred end-of-life care (Houbenet al.2014; Brinkman-Stoppelenburget al.2014). However there is little evidence available on the safety of the process and its impact on quality of care.AimTo characterise the nature of patient safety incidents arising around the ACP process for patients approaching end-of-life.MethodThe National Reporting and Learning System (NRLS) collates patient safety incident reports across England and Wales. We performed a keyword search and manual review to identify relevant reports between 2005 and 2015. A mixed methods process combining structured data coding and exploratory descriptive analysis was undertaken to describe incidents underlying causes and outcomes. A thematic analysis identified areas on which to focus improvement initiatives.ResultsWe identified 67 incident reports in which patients experienced inadequate care due to issues with implementation of ACP. The most common source of error was (mis)communication of ACP (n=27) where documentation was lost or verbal handover was inaccurate. Over one third of reports (n=24) described an ACP not being followed. In the remaining reports (n=16) an ACP was not completed despite being appropriate. The most common contributory factor was inadequate staff knowledge (n=18). Common outcomes were cardiopulmonary resuscitation attempts contrary to a patient’s wishes (n=18). Other outcomes included inappropriate treatment or transfer/admission.ConclusionOur national level analysis identifies key priorities which should be explored in local contexts: specifically improving public and staff understanding and engagement with ACP and developing systems for recording and accessing ACP documentation across healthcare services.References. Brinkman-Stoppelenburg A, Rietjens JA, Van Der Heide A. The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine2014;28:1000–25.. Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ. Efficacy of advance care planning: A systematic review and meta-analysis. Journal of the American Medical Directors Association2014;15:477–89.
17 Key information summary (KIS) generation for people who died in scotland in 2017: a mixed methods study
Authors: Finucane Anne M , Davydaitis Deborah , Carduff Emma , Horseman Zoe , Baughan Paul , Meade Richard , Warren Tim , Tapsfield Julia , Spiller Juliet , Campbell Sandra , Murray Scott A 
Published: August 2018

IntroductionThe percentage of people with a key information summary (KIS) or an anticipatory care plan (ACP) at the time of death can act as an indicator of access to palliative care. Key information summaries (KIS) introduced throughout Scotland in 2013, are shared electronic patient records which contain essential information relevant to a patient’s care including palliative care. There is now a need to examine current levels of KIS generation and ACP documentation in the last months of life to assess progress and review barriers and facilitators to sharing patient information across settings and to inform out-of-hours care.AimsTo estimate the extent and timing of KIS and ACP generation for people who die with an advanced progressive condition and to compare with our previous study (Tapsfield et al. 2016).To explore GP experiences of commencing and updating a KIS; and their perspectives on what works well and what can be improved in supporting this process.MethodsA mixed methods study consisting of a retrospective review of the electronic records of all patients who died in 16 Scottish general practices in 2017 and semi-structured interviews with 16 GPs.ResultsQuantitative and qualitative data collection is in progress.ConclusionFindings will describe current levels of KIS and ACP documentation for people who die in Scotland. We will synthesize GP experiences of KIS use and describe the essential components of an ACP that need to be documented to enable good palliative care across settings including emergency and out-of-hours care.Reference. Tapsfield J, Hall C, Lunan C, McCutheon H, McLoughlin P, Rhee J, Rus A, Spiller J, Finucane AM, Murray SA. Many people in Scotland now benefit from anticipatory care before they die: An after death analysis and interviews with general practitioners.BMJ Supportive and Palliative Care2016. doi:10.1136/bmjspcare-2015-001014
18 Brief engagement and acceptance coaching in community and hospice settings (the beaches study): protocol for developing and pilot testing an evidence-based intervention to enhance wellbeing at transition into palliative care
Authors: Hulbert-Williams Nick , Gillanders David , Finucane Anne , Millington Susan , Norwood Sabrina , Spiller Juliet , Strachan Jenny , Swash Brooke 
Published: August 2018

IntroductionThe transition into palliative care can cause uncertainty fear and distress. Quality of life can be detrimentally affected and advance planning for end-of-life is often avoided. Acceptance and Commitment Therapy (ACT) is a promising intervention for supporting palliative patients; the focus on values may be especially relevant to restoring meaningful living. We present a protocol for development and piloting of a brief ACT-based intervention for delivery at the palliative care transition point.Aims and methodsA multiple-baseline single-case non-controlled design is used. This enables exploration of effectiveness and processes causing outcome improvement. Integrated qualitative interviews provide acceptability data. The five-session intervention is delivered by psychologists to 14 participants in two hospices. Participants with an incurable cancer diagnosis but life expectancy of four months or more are eligible. Weekly self-report questionnaires assess study outcomes (quality of life distress) and changes in therapeutic processes. A smartphone app facilitates daily assessment of brief measures to enable sensitive measurement of process change.ResultsQuantitative data will be analysed using visual plots and statistical change indices across study phases: this enables calculation of indicative effect sizes for future trial planning. Recruitment attrition and engagement will be analysed descriptively as feasibility indicators. Framework analysis is used to for qualitative data.ConclusionsSingle-case designs are not commonly used in psychosocial oncology however they offer a scientific data-driven approach to intervention development. By the end of this study we aim to manualise our intervention for non-psychologist delivery to plan a randomised trial with maximised implementation potential.References. Hayes SC, Strosahl KD, Wilson KG.Acceptance and commitment therapy: The process and practice of mindful change2011. Guilford Press.. Murray, et al. Patterns of social psychological and spiritual decline toward the end of life in lung cancer and heart failure. Journal of Pain and Symptom Management2007;34(4):393–402.. Ost L. The efficacy of acceptance and commitment therapy: An updated systematic review and meta-analysis. Behaviour Research and Therapy2014;61:105–12.
19 ‘The model for dementia palliative care project’: implementing knowledge transfer and exchange as a core activity
Authors: Fox Siobhán , Drennan Jonathan , Guerin Suzanne , Kernohan George , McKeon Marie , Murphy Aileen , Rabbitte Mary , Robins Amy , Timmons Suzanne 
Published: August 2018

BackgroundDementia is a terminal illness but often isn’t recognised as such. The Model for Dementia Palliative Care Project will develop a service delivery model for dementia palliative care for use in the Irish Healthcare System. Research methods include reviewing the research evidence and conducting site evaluations of existing services in the Republic of Ireland and other countries. The project timeline is October 2017–October 2020.AimThis project will impact people with dementia their families the public researchers and the healthcare system. A key project aim is to ensure effective dissemination to each of these audiences; to meet this aim we included knowledge transfer and exchange (KTE) as a dedicated project work package.MethodsWe used the evidence-based model for the transfer and exchange of research knowledge (‘EMTReK’) to design a KTE plan. The EMTReK model was produced to support researchers developing strategic dissemination strategies in the context of palliative care.Results and discussionThe core KTE activity involves identifying key messages on an ongoing basis. De-stigmatising and raising awareness about palliative care and dementia palliative care is important. Thus public awareness is central to our KTE plan. Results are being disseminated through multiple media both traditional and non-traditional including print and broadcast media social media a purpose built website and public engagement events. KTE is a two-way process and messages received are shaping our language and research activities. By establishing KTE as a core research activity we will maximise the impact of our findings to all key audiences.
24 Understanding and management of terminal illness within tanzanian traditional medicine
Authors: Higton Naomi , Lewis Emma Grace , Walker Richard , Lee Richard 
Published: August 2018

BackgroundPalliative care (PC) need in Africa is projected to rise by 300% over the next 20 years.1Late presentation and poor community awareness of services are recognised challenges to effective healthcare delivery.2 3Traditional and faith healers (TFH) hold cultural importance and provide a significant proportion of primary healthcare in Africa.4 5This project sought to explore their understanding and management of terminal illness with the aim of improving PC delivery through collaborations between TFH and allopathic services.MethodologyData were collected through semi-structured qualitative interviews with traditional healers (n=11) and faith healers (n=8) working within the Kilimanjaro region of Tanzania. Participants were recruited through convenience and purposive sampling. Interviews were audio-recorded and translated transcripts analysed by thematic analysis.FindingsAll TFH had experience of terminally ill and dying patients. Participants had a holistic approach to healthcare with themes of biological psychological social and spiritual factors identified throughout conceptualisation and management of both terminal illness and death. This also informed opinions towards collaboration seeing healthcare professionals and TFH holding different roles within these areas.ConclusionsThe overlap with allopathic explanatory models of health (i.e. the BioPsychoSocial model) provides positive grounds for future collaborations. TFH could complement allopathic PC services through culturally acceptable spiritual care perceived to be lacking in hospitals. Joint dialogue and education between practitioners is necessary to begin collaboration. A significant challenge to this is mistrust between traditional healers and faith healers. The findings merit further research into patient’s preferences and experiences of TFHs in terminal illness.References. Grant L, Downing J, Namukwaya E. Palliative care in Africa since 2005: Good progress but much further to go. BMJ Supportive & Palliative Care2011;1(2).. Harding R, et al. Current HIV/AIDS end-of-life care in sub-Saharan Africa: A survey of models services challenges and priorities. BMC Public Health2003;3(33).. Lewis EG, Oates LL, Rogathi J, Duinmaijer A, Shayo A, Megiroo S, Bakari B, Dewhurst F, Walker RW, Dewhurst M, Urasa S. ‘We never speak about death.’ Healthcare professionals’ views on palliative care for inpatients in Tanzania: A qualitative study. Palliat Support CareAugust 2017;22:1–14.. World Health Organisation.WHO: Traditional medicine strategy: 2014–20232013. Geneva: World Health Organisation Geneva.. Stanifer JW, et al. The determinants of traditional medicine use in Northern Tanzania: A mixed-methods study. PLoS One2015;10(4):e0122638.
26 ‘What matters to me?’ staff perspectives on the identification and documentation of ‘what matters’ and the role of values-clarification in palliative care settings
Authors: Irvine Jack , Spiller Juliet , Finucane Anne 
Published: August 2018

IntroductionValues-clarification has an important role in palliative care for clinical staff and their patients (Edwards 2014). The question ‘What matters to me?’ seeks to support patients in voicing their values and forms part of the daily assessment of each patient at the Marie Curie Hospice Edinburgh.AimsExplore staff perspectives on the role of understanding patient values and their interaction with clinical practice in a palliative care setting.MethodThe current study was a service evaluation investigating the practical application of ‘What matters to me?’ as a proxy question for values identification using a retrospective casenotes review and focus group discussion with 12 clinical staff. Data was analysed using a qualitative method thematic analysis.ResultsDoctors recorded ‘What matters to me?’ information most frequently (52%) and nurses second (36%). Focus group results indicated widespread understanding of the importance of values to staff personally and person-centred care but revealed varying approaches to electronic documentation. Multidisciplinary team meeting electronic records were found to be less useful than intended. Quality of evidence of community documentation of ‘What matters’ being transitioned to the inpatient setting was overall positive. Casenotes analysis gave rise to patient values core themes including family being at home and general health.DiscussionThis evaluation found extensive agreement regarding the positive impact of using the ‘What matters to me?’ question to elicit patient values. Implications for hospice practice will be discussed including clarifying electronic documentation practices increased healthcare assistant access to electronic records and regular updating of the nursing handover sheets.Reference. Edwards AW. Therapeutic values clarification and values development for end-of-life patients: A conceptual model.American Journal of Hospice and Palliative Medicine®2014;31(4):414–419.
33 Development of an intervention to support lung cancer patients and their clinicians when considering systematic anti-cancer therapy: the pact study, a prospective multi-centre multi-methods five-stage qualitative study
Authors: Nelson Annmarie , Byrne Anthony , Sivell Stephanie , Longo Mirella , Noble Simon , Lester Jason , Anagnostou Despina , Sampson Catherine 
Published: August 2018

BackgroundThe NHS aspires to place patients’ needs wishes and preferences at the heart of a clinical decision-making; however it is not clear how this can be routinely implemented. One example is the patient clinical care pathway for patients diagnosed with advanced non-small cell lung cancer (NSCLC) where there may be misunderstanding of the extent of disease prognosis and aims of treatment.AimTo understand how treatment decisions are made for NSCLC patients and map the decisions pathway.MethodologyPACT is a prospective multi-centre multi-methods five-stage qualitative study. Non-participant observation of MDT meetings (n=12) determined patients’ allocation to treatment. Non-participant observation of patient-clinician consultations (n=14) explored communication of treatment options and decision-making. Interviews with patients/companions and clinicians (n=27) explored perception of treatment options and involvement in decision-making. Mediated discourse thematic framework and narrative analysis were used to analyse the data. An expert consensus meeting (n=33) finalised the content and format of a proposed intervention.ResultsFor NSCLC patients decision making was a process rather than a single event. Patients’ priorities and preferences were not routinely or intrinsically part of the clinical pathway and arose according to the skills/attitudes of the clinician and the confidence/awareness of the patient. The interviews illustrate the uncertainty for patients around treatment considerations and highlighted the importance of knowing patients’ priorities and preferences.ConclusionCurrent pathway for NSCLC patients focuses on clinical management at the expense of patient-centred care. However clinicians’ attitude towards hope for patients with non-curative diagnosis is instrumental to any process change.
34 Specialist palliative care providers’ perspectives on how to meet the service delivery challenges in adult care homes in england: a national survey
Authors: Newman Alisha , Allnatt Gemma , Bowtell Nicola , Archer-Dutton Kerry , Hayes Anita , Longo Mirella , Pring Andy , Read Amanda , Taylor Ros , Verne Julia , Nelson Annmarie 
Published: August 2018

IntroductionCare homes (CHs) play a vital role in the delivery of care towards the end of life (National Institute for Health Research 2017; Public Health England 2017) yet little is known about specialist palliative care (SPC) support in this setting.AimTo increase understanding of how SPC services support adult CHs in England and identify from a SPC provider perspective the challenges and enablers to good quality SPC.MethodSPC services working directly with CHs in the community in England were invited to complete an online survey. Content analysis enabled qualitative data to be described.Results108 services participated. A range of challenges were identified including CH staff turnover lack of funding and retention of CH staff knowledge skills and competency.Proposed ways to reduce/resolve challenges included:Increased commissioning of SPC staff to work directly with CHs particularly to provide education/trainingStrategic centralised and longer–term approaches to funding to facilitate continuity of support to CHsMandatory SPC core competencies and accessible training for CH staff to facilitate the prioritisation and uptake of trainingIncreased collaboration within and across organisations including regulators commissioners and providers of SPC CH and GP services to increase consistency and quality of SPC education and resident careConclusionsThe data are of national relevance and enhances our understanding of the challenges and potential enablers to CH support from a SPC provider perspective. Increased funding and cross-organisational collaboration are thought to be important instruments for change. The views of others including CH staff should be sought.References. National Institute for Health Research.Advancing care – Research with care homes2017. Available at: https://www.dc.nihr.ac.uk/themed-reviews/care-home-research.htm [Accessed: 29th May 2018]. Public Health England.Briefing 1 – Care home bed provision and potential end of life care need in people aged 75 or older in England2017. Available at: http://www.endoflifecareintelligence.org.uk/resources/publications/carehomes [Accessed: 29th May 2018]