bluuebunny/crossref_metadata_2025_split huggingface dataset:
Advancing mixed-methods research: using timelines to depict patient journeys
Authors: Momen Natalie , Kendall Marilyn , Barclay Stephen , Murray Scott 
Published: March 2012

BackgroundThere is great interest to explore best models of collaborative cancer care, with specialists and Primary Care work together. In a study evaluating an electronic cancer ongoing record in primary care, the research team needed to display and overview a large amount of diverse data from clinical records, hospital letters and study interviews. Innovative techniques were required to understand the complexities of patient experiences involved.AimsTo investigate the use of timelines to help display, overview and analyse a complex dataset in order to examine patients' experiences and the relationships between primary and secondary care.MethodsGeneral Practice case note reviews were carried out for 106 patients who had received a new diagnosis of cancer in the previous 12 months. Data concerning each patient was extracted into a form designed for the study. Timelines were created in Microsoft Visio, displaying cancer related consultations with clinicians in primary care (home visits, surgery consultations and phone calls) and secondary care (outpatient clinics, inpatient admissions, outpatient treatments).ResultsIn addition to cancer related primary care appointments, all postdiagnosis primary care consultations were depicted, with additional annotations if co-morbidities were the main reason for consultation, to provide context. Relevant prediagnosis appointments, from initial presentation with symptoms, were included. The timelines were used to aid discussion in meetings of the project team and advisory group and in presentations of the study findings.DiscussionThe timelines provide a visualisation of patients' journeys that incorporated a diverse dataset from a range of sources, including case reviews and interview data. In some cases they highlighted the ways in which patients may recall consultations differently from health professionals' clinical records. Patient timelines are a useful technique to add to the health services research toolbox.
Conceptualisation of volunteering in palliative care: a narrative synthesis of the literature
Authors: Sallnow Libby 
Published: March 2012

BackgroundVolunteering in the UK has recently been embraced under the banner of the ‘Big Society’ but its history has long been aligned to the development of the hospice movement. As the philosophy of palliative care has spread throughout the world, volunteer roles have evolved differently, influenced by local needs, local structures and the available resources. Although it is widely believed that volunteering makes important contributions to patients, their families, hospice organisations, individual volunteers and the wider society, attempts to quantify its impact or outcomes have been limited. This study aimed to develop a conceptual model through which volunteering in palliative care could be understood.MethodsNarrative synthesis was used to develop a conceptual model of volunteering in palliative care based on a systematic review of the literature regarding volunteering in palliative care.ResultsA systematic search of the literature identified 5613 papers, of which 126 met the inclusion criteria. The review revealed three inter-related themes: (1) the impact of volunteering; (2) motivations of those volunteering; (3) the locus of control in volunteering in palliative care. Meta-ethnographic analysis produced a theoretical model in which satisfaction in volunteering is conceived as a continual process of negotiation between seeking to improve outcomes for the patient, family or organisation as well as to improve personal fulfilment and self-esteem of the individual volunteer. These aspects of volunteering may be in alignment or in opposition.ConclusionThis review identifies the range of influences that may act on an individual volunteering within an organisation, and suggests that the traditional processes of engaging and managing volunteers require reappraisal. Greater focus should be placed on understanding the benefits of volunteering both for the organisation and the individual and the measurement of both the process and outcomes associated with volunteering.
A new, palliative care led, pathway approach to care in metastatic cancer of unknown primary origin
Authors: Hughes Philippa , Farrington Clare , Brooks David , Bath Peter , Noble Bill 
Published: March 2012

BackgroundRecent NICE guidance highlights inequity of care for CUP compared to site-specific cancer, and recommends instigating CUP teams, to include a palliative care physician, oncologist and specialist nurse.Aim and methodsWithin a study to evaluate the development of a CUP team and pathway, we undertook a retrospective cross-sectional analysis of patient data before and during implementation.ResultsEighty-eight patients were identified with CUP during two six-month periods: median age 75 years. Fifty-two patients (59.1%) scored 3–4 on ECOG Performance Scale (PS). Thirty-nine (44.3%) were referred for consideration of Tumour Directed Treatment (TDT) and twenty-three (26.1%) completed the planned treatment. Median time from presentation to death was 40 days. Of 88 patients, 50 were pre pathway-implementation; 38 postimplementation, not differing significantly in gender, age or PS. In the postimplementation group, patients had experienced varying degrees of application of the new pathway approach. Time from referral to instigation of definitive treatment ranged from 0 to 115 days in the prepathway group, and from 0 to 74 days in the postimplementation group. No significant difference was found between the groups in the mean rank of these times: prepathway 40.05 days; postimplementation 33.77 days (Z=−1.2348; p=0.217). Fourteen (28%) prepathway patients and 9 (23.7%) postimplementation patients received TDT as planned or with modifications. Prepathway; of 48 deaths, 7 were at home, 30 in hospital, 10 in a hospice, (one place unknown): postimplementation; of 33 deaths, 12 were at home, 14 in hospital and 7 in a hospice.Discussion and conclusionThe majority of patients presenting with CUP have poor performance status and short life expectancy. A minority received tumour directed treatment. Early palliative care involvement has the potential to aid symptom management and curtail the longest investigatory periods, without reducing oncology referral. Further evaluation is warranted when the pathway is embedded.
Blood, glorious blood: are attitudes to blood transfusions for palliative purposes always positive?
Authors: Hayward Holly , Hiersche Andreas , Watson Liz 
Published: March 2012

BackgroundOne in five patients suffering with terminal cancer is given a blood transfusion. However, given that blood is a finite resource, research is currently lacking on healthcare professional's opinions on blood transfusions in terminally ill cancer patients.AimsTo explore the views of healthcare staff regarding the value of blood transfusions for symptom management in patients with advanced cancer in the last months of life, and to compare practices and attitudes in palliative care and oncology staff towards palliative blood transfusions.MethodsA web-link to an online questionnaire was distributed to 120 healthcare assistants, nurses and doctors working in either oncology or palliative care. 46 completed the questionnaire, which contained questions about the use and indications of blood transfusions in their specialty. It also asked about their views on the subject of blood transfusions in terminally ill cancer patients. Responses were compared using means, medians and percentages.ResultsBoth groups of healthcare professionals thought that blood transfusions in terminally ill patients were ‘sometimes appropriate’ (3.91(4), 3.90(4)), and no oncology nurses, or doctors in either group thought blood should be withheld from them. However, some nurses in palliative care thought blood transfusions should be withheld (n=2). Less palliative care healthcare professionals than oncology healthcare professionals thought that suffering was an appropriate reason for blood transfusions (74% and 90%, respectively).ConclusionsThere is a lack of current guidelines outlining when to give terminally ill cancer patients a blood transfusion, due to the fact that every patient needs to be individually assessed. Generally, attitudes towards blood transfusions were positive; most thought that suffering was an appropriate reason for a blood transfusion. The large majority did not think that blood transfusions should be withheld. Attitudes towards blood transfusions with palliative intent were slightly more positive in oncology compared to palliative care healthcare professionals.
A review of the symptoms experienced by patients sent home from hospital as rapid discharges at the end of life
Authors: Faull Christina , Beeching Jo 
Published: March 2012

BackgroundSurprisingly there is a very limited evidence base concerning the symptoms that patients who are dying experience. The Liverpool Care Pathway (LCP) utilised the evidence derived from patients cared for in a hospice setting, arguably patients with more complexity of symptoms than those that might die elsewhere and predominantly patients with cancer. The rapid discharge service in Leicestershire accepts adult patients with any diagnosis thought to be in the last 48 h of life who wish to die at home. All patients are cared for using the LCP and anticipatory medications for symptom management are dispensed on discharge.AimsTo review the symptoms that arose in patients sent home from hospital who were in the last phase of life.MethodsCase notes were reviewed for 23 consecutive patients referred in three months to the rapid discharge service. Symptoms were identified through the LCP documentation and use of drugs noted.ResultsEight died before discharge. Six of the 15 discharged had cancer. Other patients had a very eclectic range of illnesses. Non cancer patients lived longer than cancer patients (mean 4.8 vs 1.8 days). Only one patient had a syringe driver on discharge but 11 in the last 24 h. All patients required at least one drug for symptom management. Only one needed haloperidol (for nausea). 14/15 patients required pain relief, but the majority of non-cancer patients received a higher dose of morphine in the last 24 h than cancer patients. The symptom burden of non-cancer patients, with some exceptions was greater and required higher doses of drugs in the last 24 h than cancer patients.ConclusionsThe symptom management of cancer patients who came home to die required lower doses and fewer drugs than non-cancer patients. The terminal phase for non-cancer patients is longer and their symptom burden is greater.
Interventions for the management of persistent and intractable hiccups in adults – a systematic review
Authors: Methal Naseena , Kelt Sarah , Jordan Joanne 
Published: March 2012

BackgroundPersistent and intractable hiccup is a distressing symptom seen in patients with underlying diagnosis of cancer or end stage systemic disease.ObjectiveFind and appraise the evidence for different interventions used in the management of persistent and intractable hiccups in adults.DesignSystematic review.Data sourceElectronic databases, reference lists of studies, authors and experts.MethodsRandomised controlled trials (RCTs) and controlled clinical trials (CCTs) retrieved through search were assessed for inclusion in the review. Data extraction and quality assessment were carried out. Meta-analyses were not feasible due to lack of comparable controlled studies and therefore a narrative synthesis was carried out. Uncontrolled studies conducted with a sample size of five or more were also analysed due to small number of controlled trials retrieved.ResultsOne RCT and three uncontrolled studies conducted with Baclofen reported successful results. Three studies conducted with Gabapentin and four studies conducted using acupuncture were uncontrolled and showed positive therapeutic effects. Successful results were reported by two RCTs conducted using acupoint injection of Vitamin B6 and electric needling of Tianding. Significant improvement of hiccup was reported in two CCTs conducted with magnetic needle therapy and acupuncture and auricular plaster therapy. Other interventions reported to be potentially successful in uncontrolled studies included Valproic acid, Metoclopramide, Nifedipine, breathing pacemakers, linearly polarised near-infrared irradiation, cervical phrenic nerve block and electro-acupuncture.ConclusionReview suggests many possible pharmacological and non-pharmacological interventions including Baclofen, Gabapentin and different variants of acupuncture. Most studies were uncontrolled, underpowered and lacked comprehensive data and therefore recommendations are made cautiously.Well designed RCTs are essential to generate guidelines in clinical practice. The implementation of interventions in palliative care population should be a main consideration in designing future studies. Treatment of intractable and persistent hiccup is based on patients and clinicians preferences until more evidence from RCTs is available.
Sedation in palliative care: an understanding of values in clinical practice
Authors: Frew Katie , Paes Paul , Exley Catherine , Hughes Julian 
Published: March 2012

BackgroundSedation is a controversial issue in palliative care. Previous research has explored aspects of administration, concerns of relatives and staff and also ethical issues, predominately in retrospective studies. These studies suggest that the authors require prospective observational research into the day to day use of sedation.AimsThe aim of this research was to describe the normative underpinnings of current hospice practice with respect to the use of sedation in palliative care.MethodsThis is an ethnographic study of the use of sedation in a palliative care inpatient unit. The primary research methods were participant observation and indepth interviewing. Data was analysed taking a constructivist grounded theory approach.ResultsThrough data analysis three overarching concepts were developed. These were 1) the concept of ‘routine’ sedation; 2) the relationship of sedation to ensuring good dying and death; 3) the fundamental role of values in the use of sedation. This paper will consider the third of these. Decisions to use sedation were found in this research to be primarily motivated by values. These values related predominately to the nature of, and requirement to ensure, good dying and death in the hospice.ConclusionDecisions to use sedation are highly evaluative decisions, especially at the end of life. These decisions fundamentally represent the palliative care core values regarding dying in a hospice. This is important as palliative care develops to incorporate patients with different diseases and dying trajectories and as it seeks to provide equity of care to different cultural and social groups. Values-based-practice is an approach which embraces the evaluative nature of decision-making and provides a set of practical tools which are centred on individual patients' values. Values-based practice is suggested as a model to equip those making decisions about sedation while retaining the ‘framework values’ of the palliative care approach.
Sedation: understanding a normative basis for its use
Authors: Frew Katie , Hughes Julian , Paes Paul , Exley Catherine 
Published: March 2012

BackgroundSedation is a controversial issue in palliative care. Previous research has explored aspects of administration, concerns of relatives and staff and also ethical issues, predominately in retrospective studies. These studies suggest that the authors require prospective observational research into the day to day use of sedation.AimsThe aim of this research was to describe the normative underpinnings of current hospice practice with respect to the use of sedation in palliative care.MethodsThis is an ethnographic study of the use of sedation in a palliative care inpatient unit. The primary research methods were participant observation and indepth interviewing. Data was analysed taking a constructivist grounded theory approach.ResultsThrough data analysis three overarching concepts were developed. These were i) the concept of ‘routine’ sedation; ii) the relationship of sedation to ensuring a good dying and death; iii) the fundamental role of values in the use of sedation. This paper will consider the second of these. The use of sedation at the end of life was found to be motivated by healthcare professionals' desire to bring about good dying and death. This ‘good dying’ centred on symptom control and relief of distress with the aim of bringing about what was conceptualised as a ‘natural’ death, that is dying in sleep. Sedation was used to facilitate this process.ConclusionThis research provides the first empirical evidence of the normative basis to the use of sedation, which lies in the hospice construct of good dying and death. This has important implications for the specialty as it expands to provide care for patients with different illnesses and dying trajectories. Uncertainty about diagnosing dying raises challenges regarding the use of sedation, especially when continuous sedation is used until death. The desire to bring about good dying must be balanced by good decision-making in uncertainty.
A qualitative study exploring patients experience of ACS and a structured approach to its management
Authors: Waterfield Kerry , Andrew Inga , Macnaughton Jane , Hawkins Colette 
Published: March 2012

BackgroundAnorexia Cachexia syndrome (ACS) is a common and devastating condition in cancer patients. It is poorly defined and heterogeneous, with many difficulties in conducting research and translating those findings into practice. A literature review revealed that patients' experience of the care offered by healthcare professionals was generally negative. Professionals were seen to avoid the issue or offer scanty/ineffective advice. It was hypothesised that proactive, systematic management could overcome some of these barriers. This was seen in an interventional study of such an approach, QISAM (Quantifying the impact of Standardised Assessment and Management).AimsThe aim of this qualitative study was to increase understanding of the experience of ACS from the individual patient perspective and to determine how taking part in QISAM impacted upon this experience. It also aimed to determine why the intervention had been beneficial and help with the process of translating the results of that study into practice.MethodTen patients suffering from ACS who had participated in QISAM were interviewed postintervention in their homes using a semistructured approach. Interviews were transcribed verbatim and analysed using an interpretative phenomenological approach.ResultsA common experience of patients was a struggle with the lack of control or uncertainty they faced. The huge anxiety linked to ACS was also apparent. Participating in QISAM seemed to help patients regain a little of that sense of control as they learned to manage their symptoms and access help. The structured approach of QISAM, including the practical advice given, provided much needed reassurance.ConclusionsThis study is the first to explore patient's experience of an intervention to address ACS. The results support previous findings of the significant impact of the condition. It suggests the benefit of the intervention was influenced by the fact that patients felt reassured and empowered.
Exercise rehabilitation for cancer related fatigue: home or gym based?
Authors: Watson Max , Dunwoody Lynn , Payne Cathy 
Published: March 2012

BackgroundAs people live longer the number living with and beyond cancer is increasing. Due to the after effects of disease and treatments many individuals who survive cancer do not enjoy the same quality of life as the general population. The aftercare for this population is largely biomedical in orientation, focusing on monitoring and surveillance of recurrence. However, research highlights the importance of well-being and the use of exercise rehabilitation in the management of CRF.ObjectivesThe Back on Track (BoT) 8 week pilot service for patients with CRF, evaluated the feasibility of providing an individually tailored exercise rehabilitation programme based on evidence gathered from multiple trials into the use of rehabilitation interventions for CRF.MethodIndividuals who had completed cancer treatment were recruited from the membership of the Ulster Cancer Foundation. A holistic baseline assessment of the 18 participants was carried out at the Health and Rehabilitation Sciences Research Institute (HRSRI), University of Ulster. A personalised 8 week exercise programme was agreed with each participant. 12 participants chose to partake of a home-based aerobic and resistance training programme with weekly telephone support and six chose an additional weekly exercise programme at the HRSRI. On completion the initial assesments were repeated. 17 of 18 participants completed the baseline and follow up assessments.ResultsSignificant improvements were noted in the 6 min Walk Test (6MWT), the Fatigue VAS, the FACT-F, the Beck Depression Inventory, the BORG scale post 6MWT, Triceps skin-fold thickness and timed sit to stand. These improvements were achieved in both the home based and gym supported groups. A change in lean body mass was noted.ConclusionAn 8 week home-based exercise rehabilitation programme with or without weekly gym based activity makes significant improvements to both physical and psychosocial outcomes in patients with CRF.
NHS south of tyne and wear's (SOTW) supportive and palliative care standards for end of life care in primary care
Authors: Watson Louise , Richardson Jackie 
Published: March 2012

The end of life strategy (2008) has set key recommendations as to what constitutes high quality care at end of life. In light of this ground-breaking document, and following on from the Keep Improving the Experience (KITE, 2006–2009 used as an alternative to Gold Standards Framework) project across SoTW, a new set of eight standards for supportive and palliative care were developed locally. An initial qualitative baseline pilot was carried out across SOTW examining the workability of these standards, followed by a project with a single practice based commissioning group to further test their feasibility and to demonstrate the value of the standards in primary care. Initial phase workshops were followed by in-depth, practice-based sessions which afforded individualised and focused support for participating practices. Key areas of improvement were:Identifying patients in the last 6 to 12 months of lifeManaging palliative care registersManaging multidisciplinary team meetingsProactively planning palliative careCommunication and co-ordination of care.Practices worked to uplift from their baseline assessment by demonstrating progression with supporting evidence to achieve accredited status. The results have been encouraging although it is not possible to fully evaluate the impact of the Standards in terms of clinical outcomes as this data is not yet available (eg, quality outcomes framework). However, qualitative feedback from practices who achieved accreditation is overwhelmingly positive. In particular the one-to-one support was highly valued and the standards themselves have attracted positive feedback, in both this project and the pilot. The authors believe that it is this combined approach which is of most benefit in primary care. The evidence suggests that it is a workable model for other clinical commissioning groups to adopt. Furthermore, practices previously KITE-accredited have consistently demonstrated continued improvement over several years, indicating that the model is also sustainable.