bluuebunny/crossref_metadata_2025_split huggingface dataset:
Introducing an electronic palliative care summary: patient, carer and professional perspectives
Authors: Hall S , Campbell C , Kiehlman P , Murchie P , Murray S A 
Published: May 2011

AbstractIntroduction and aimsThe electronic Palliative Care Summary (ePCS) is being introduced throughout Scotland to provide out of hours (OOH) staff with up to date records of medications, decisions regarding treatment and health status of patients requiring palliative care. Automatic twice-daily updates of information from General Practitioner (GP) records to a central electronic repository are available to OOH services. We sought to identify key issues related to the introduction of ePCS from primary care and OOH staff, to identify facilitators and barriers to its use, to explore the experiences of patients and carers, and to make recommendations for improvements.MethodsSemi-structured interviews were carried out with a purposive sample of GPs from practices using different computing software systems; out-of-hours GPs; and patients (and/or their carer) for whom an ePCS had been completed. Interviews were digitally recorded with consent, transcribed and analysed thematically.ResultsPatients and carers were reassured that OOH staff were informed about their current circumstances. OOH staff considered the ePCS allowed them to be better informed in decision–making and in carrying out home visits. GPs viewed the introduction of ePCSs to have benefits for in-hours structures of care such as advance care planning. No interviewee expressed concern about loss of confidentiality. Barriers raised related mainly to the introduction of a new technology including unfamiliarity with the process, limited time and IT skills.ConclusionsThe ePCS has the potential to improve patient care. Training in ePCS completion and updating should be available for all GPs and community nurses.
Improving care and support for people with progressive illness in primary care
Authors: Harrison N , Cavers D , Campbell C , Murray S A 
Published: May 2011

AbstractIntroduction and aimsThe Palliative Care Directed Enhanced Service (DES) was introduced in Scotland in 2008/2009 to stimulate anticipatory care by GP practice teams. We aimed to evaluate how practices were implementing this by assessing how they were▶identifying patients for their palliative care register (PCR),▶assessing/reviewing needs,▶sharing information with out of hours (OOH) providers,▶using the Liverpool Care Pathway (LCP).MethodsSix practices were recruited from three Scottish Health Boards. Data were collected on current palliative care patients and on patients dying in the previous 6 months; semi-structured interviews were conducted with GPs, district nurses (DN) and administrative staff (total 20) and with patients and bereaved relatives (total 11); the researcher observed multidisciplinary practice meetings.ResultsOnly 29% of patients were on the PCR prior to death (range 10–38% between practices). Of these, 69% had cancer, 17% organ failure and 14% dementia or physical frailty and 25% died in hospital (cf. 44% of all deaths). 52% on the current PCR had a record of preferred place of care and 35% of resuscitation status. Practices valued better focused and structured palliative care, improved communication with OOH providers and introduction of the LCP but raised some difficulties in including non-cancer patients on the PCR. Patients and relatives appreciated pro-active care.ConclusionDespite this initiative few patients were identified for palliative care. However when identified, their multidisciplinary and OOH care improved and hospital admissions to die decreased. Practices must identify more patients earlier for palliative care.
Identifying patients with supportive and palliative care needs in acute cardiology
Authors: Fenning S J , Woolcock R , Haga K , Skene C , Boyd K , Murray S A , Denvir M 
Published: May 2011

AbstractIntroduction and aimsDue to the variable illness trajectory and uncertain prognosis, most patients with advanced heart disease fail to receive adequate end-of-life care. The Gold Standards Framework (GSF) has been used in primary care to identify such patients. We assessed its utility in patients presenting in the acute hospital setting with acute coronary syndrome (ACS).MethodsConsecutive patients with ACS admitted to an acute cardiology unit, over two separate 4 week periods, were included. Data were collected from patient notes and interviews with doctors. Patients were assessed using GSF and a clinical prognostic score (Global Registry of Acute Coronary Events, GRACE). All patients were followed-up for 1 year.Results168 patients were included. 40 (24%) patients were identified under the GSF as being in the last year of life due to their heart disease. Compared with GSF negative patients, GSF positive patients had a significantly higher GRACE score (13.9 vs 8.3, p=0.002). The GRACE score of patients who died within 6 months was significantly higher than those who survived (20.2 vs 9.27, p=0.008). GSF poorly predicted 6 month mortality (sensitivity 17%) but was strongly predictive of all-cause readmission during follow-up (p=0.000001).ConclusionGSF may be useful in predicting readmissions in ACS patients but is poor at predicting mortality. Combining GSF criteria with GRACE may guide secondary care clinicians in identifying ACS patients who may benefit from end of life care.
Systemic inflammation and symptom severity in patients with advanced cancer: a prospective study
Authors: Haworth G , Rush R , Fallon M , Laird B 
Published: May 2011

AbstractAimPain, depression, fatigue and nausea are common symptoms in cancer and can cause significant physical and psychological distress. In non-malignant conditions, systemic inflammation is implicated in the genesis of these symptoms. The relationship between inflammation and these symptoms in cancer is less clear. The aim of this study was to examine the relationship of systemic inflammation and pain, fatigue, depression and nausea/vomiting in patients with advanced cancer.MethodsAn observational, cross-sectional study conducted in a specialist palliative care unit. All cancer patients admitted over a 3 month period were assessed. Eligible patients had assessments of inflammation (C reactive protein (CRP) and albumin) and symptoms (ESAS). A bivariate statistical analysis was conducted.Results64 patients were assessed with 50 being eligible. Significant correlations (Spearman) were found for pain (0.343, p=0.015) and depression (0.357, p= 0.011) with CRP. No significant correlations were found for fatigue (0.020, p=0.890) and nausea/vomiting (0.276, p=0.052). No significant associations were found for any symptom and serum albumin.ConclusionSystemic inflammation is related to pain and depression in cancer. Such a relationship may provide a therapeutic opportunity for specific anti-inflammatory therapy that improved pain and depression. Further work examining this relationship would be of interest.
Audit of the use of a screening tool to improve recognition of delirium in a palliative care unit
Authors: Cogdell L M , Lunt C 
Published: May 2011

AbstractIntroductionThe British Geriatric Society recommends that all older patients admitted to hospital are screened for delirium using a tool such as the abbreviated mental test (AMT). No similar guidelines specifically for palliative patients exist. However delirium is very common in patients in specialist palliative care units (SPCU). Delirium remains under diagnosed and is associated with a poor prognosis. It is often reversible if recognised early and the cause identified and treated promptly. A previously undertaken audit showed that no screening tool for delirium was currently used in our SPCU despite high prevalence of delirium. The action plan recommended the introduction of routine screening.AimTo audit the use of AMT in patients admitted to SPCU.MethodsFollowing previous audit junior doctors were asked to perform an AMT on every new admission. Education and labels listing the 10 AMT questions to stick in notes were provided. Case note review for 20 SPCU in-patients was performed on 1 day 4 months after the introduction of screening tool.Results70% of patients had an AMT performed on admission. The patients who did not have an AMT done were mainly in the terminal phase of their illness. 43% of patients who had an AMT performed scored less than 8 suggesting that they have a high chance of delirium.ConclusionThe introduction of the screening tool has improved the number of newly admitted patient's being assessed for delirium.
COMPASS collaborative research Strand 1: assessment
Authors: Stark D , Bennett M , Johnson B , Murray S A , Rainey P , Rayner L , Gao W , Higginson I J 
Published: May 2011

AbstractIntroduction and aimsStrand 1 develops assessment and outcome measures for use and intervention in research and clinical practice. We set out to improve the patient assessment platform, to improve comparable measurement within and between studies.MethodsOur process of meeting, rigorous collaborative discussion, guidance for researchers in training, grant application and dissemination has brought integration of service user involvement and collaboration among the different universities. We focused upon symptoms including psychological distress care giver burden and palliative outcomes. We evaluated measures from diagnosis to survivorship and end of life care.ResultsWe have recently published about measures of psychological distress across cancer trajectories, clinical and psychometrics features of the General Health Questionnaire across the cancer trajectory, complex interventions for cancer survivors and assessment of care giver burden. In our collaborative's evolution, we continue to work on psychological distress assessment across cancers, characteristics of psychological distress, political challenges to supportive and palliative care research, cancer pain, palliative outcomes, short-form carer burden questionnaires, the selection of research assessment measures, telehealth with advanced symptoms, dignity-conserving interventions, place of death in non-cancer conditions and evaluation of services. Each of these can shape clinical research studies and services in supportive and palliative care.ConclusionsOur commitment, complementary insights, backgrounds and methodological expertise were essential and productive. We continue to collaborate, developing high impact research, infrastructure and training and wider collaborations across Europe and beyond (PRISMA in palliative care, ENCCA in young people with cancer) across disciplines and professions in supportive and cancer survivorship care, palliative and end of life care.
‘You're sicker than you think’: continuing communication problems in end stage heart failure
Authors: Mair F S , Browne S , Morrison D , Macleod U , May C R 
Published: May 2011

AbstractHeart failure is a terminal condition. Yet it has been demonstrated that compared to cancer, health professionals (HPs) lack confidence in diagnosing end stage heart failure (ESHF) and communicating a poor prognosis to patients. The present study seeks to explore patient and carer level of understanding of the diagnosis and prognosis, and how ESHF patients and carers make sense of their condition and plan for the future, and what part HPs play.MethodsThis study involves semi-structured interviews with 22 ESHF patients and their carers and explored their knowledge and understanding of the condition and its prognosis. Qualitative data analysed using thematic analysis but informed by Normalisation Process Theory. Inclusion criteria: at least Grade 3 or 4 NYHA classification HF; who have ongoing symptoms despite optimal therapy; and have a history of admissions for this condition and their carer (defined as the person most closely involved with them).ResultsPatients and carers generally understood the patient had heart problems although the term ‘heart failure’ was rarely used. Many patients had been unwell with heart problems for many years and the transition to ESHF remained unclear with few seeming to appreciate their prognosis. There was little evidence of direct communication about prognosis, with patients sometimes becoming fixated on comments by HPs such as, ‘you’re sicker than you think, you know' and wondering how to interpret such comments.ConclusionsThis study has highlighted continuing problems with regard to ESHF patient and carer knowledge and understanding of their condition.
The role of primary care in cancer care: the views and experiences of patients and family members
Authors: Adams E , Watson E K , Boulton M G , Rose P W , Richardson A , Lund S , Wilson S , Savage B , Rauf A , Belcher J 
Published: May 2011

AbstractIntroduction and aimsThe role of primary care in the provision of cancer care is poorly defined. Practices in are offered a financial incentive to conduct a review with new patients within 6 months of diagnosis, but the extent to which these reviews occur and their scope and perceived usefulness is unknown. The purpose of this study was to explore the role of primary care in caring for and supporting cancer patients and their families.MethodSemi-structured interviews were conducted with 38 patients, diagnosed within the last 3 years. Patients were stratified by time since diagnosis, and a maximum variation sampling strategy was employed to achieve heterogeneity in terms of cancer type and socio-demographic variables. We interviewed 19 males and 19 females, with a range of 14 different cancers. Patients were invited to ask their partner/close relative to participate – 24 family members were interviewed.ResultsAlthough generally satisfied with their GP practice, most patients were unaware of having had a review or any specific discussion of their cancer-related care, despite records indicating the contrary. Most patients and family members would have welcomed pro-active involvement from their GP practice and felt that a designated review appointment would provide a good opportunity to raise any concerns.ConclusionsAlthough patients and family members see an important role for primary care in cancer follow-up care this is not universally being delivered at present and there is real scope for improving practice in this area.
Healthcare professionals' views on factors influencing end-of-life care in hospitals
Authors: Forbes K , Gibbins J , Burcombe M E , Bloor S J , Reid C M , McCoubrie R C 
Published: May 2011

AbstractIntroduction and aimsThe majority of patients die in the acute setting, yet care delivered to the dying in hospitals is variable and the underlying reasons for this are not documented well. We aimed to explore healthcare professionals' views on the factors influencing good quality end-of-life care within an acute hospital Trust.MethodsWithin a feasibility study examining the impact of a simple end-of-life care tool on the dying experience we carried out qualitative interviews with healthcare professionals caring for dying patients.ResultsFive focus groups, nine face-to-face and two ‘think aloud’ interviews were analysed using the framework approach. The emerging themes were: difficulties in diagnosing dying (eg, senior doctors were required to validate the diagnosis when they might not know the patient well); role of the doctor (often task-based and directed by the nurses); changing role of nursing staff (leading end-of-life care); hospital culture (reluctance to withdraw active treatments; it was ‘brave’ to state a patient was dying); environment (appropriateness for dying patients) and the EOL tool validating care (nurses found the regular symptom scoring required by the tool helped them approach patients and families and give more appropriate care).ConclusionThis qualitative study has identified factors influencing care given to dying patients in an acute hospital setting. We suggest these factors need to be taken into account when trying to improve care for dying patients and in facilitating the use of EOL care pathways.
Non-professional carers' views on the care of the dying; the impact of a simple end-of-life care tool
Authors: Forbes K , Gibbins J , Burcombe M E , Bloor S J , Reid C M , McCoubrie R C 
Published: May 2011

AbstractIntroduction and aimsThe Department of Health's End of Life (EOL) strategy promotes integrated care pathways for the dying as a means of improving end-of-life care. We designed a pilot study to determine whether a simple EOL care tool could improve the dying experience in an acute hospital setting as perceived by carers.Methods40 patients received ‘usual’ end-of-life care and 30 patients had their end-of-life care directed by a simplified EOL care tool. Bereaved carers were contacted a month after the patient's death and asked to complete the validated VOICES questionnaire.Results20/40 questionnaires were returned by carers whose relatives received ‘usual’ care and 18/30 by carers whose relative received care directed by the tool. Although numbers are small and therefore changes are not statistically significant, improvements were seen in the responses regarding medical and nursing care (43.8% of relatives rated nursing care as excellent in the usual care group compared to 83% in the EOL tool group). Benefits were also seen for pain management (56.3% of carers perceived their relative had pain receiving usual care vs 28% in those receiving the care tool). More carers were present when their relative died following introduction of the tool (43.8% for usual care vs 67% for those receiving the care tool).ConclusionNon-professional carers reported improvements in some aspects of end-of-life care following the introduction of a simple EOL care tool. This needs further testing in an adequately powered trial.
Palliative care pathways for teenagers and young adults with cancer
Authors: Stirling L C , Anderson A K , Lewis J , Stoneham S 
Published: May 2011

AbstractIn 2009, a Palliative Care subgroup of the teenagers and young adults with cancer (TYAC) service development group was formed and asked to develop best practice guidelines for the Palliative, End of Life (EoL) and Bereavement care for teenagers and young adults (TYA) with cancer.MethodsRelevant national guidelines from paediatric and adult palliative care, as well as clinical expertise from around the UK from both medical, nurse, social and education, were used to develop draft pathways to guide generic clinicians in the provision of care of a TYA with cancer, and his/her loved ones, from the time that it is recognised that his/her malignancy is incurable, through to care in early bereavement. The pathways were disseminated widely within the membership of TYAC for comments and suggestions as well as from parents and carers. Amendments were made in the light of the comments received.ResultsThree pathways were developed that outline the range of interventions needed to provide optimal Palliative care, End of Life care and Bereavement care for TYA with cancer.ConclusionsThese pathways will be disseminated and used as a gold standard to guide provision of service and audit care for this population.
Using the measure of patient centred communication to assess oncology consultations
Authors: Absolom K , Hector C , Campbell L , Eng S , Taylor S , Takeuchi E , Warrington L , Ziegler L , Velikova G 
Published: May 2011

AbstractNumerous instruments to assess doctor-patient communication have been developed to date. The Measure of Patient Centred Communication (MPCC)1 was created for use in primary care and measures three components of communication (1) Exploring the disease (2) Understanding the whole person (3) Finding common ground. In ongoing research we are exploring the suitability of the MPCC for assessing chemotherapy review consultations. Here we present our preliminary experiences of using this coding framework.MethodsBetween October 2009 and November 2010, 496 outpatient consultations with 124 patients were audio-recorded at St James' Institute of Oncology, Leeds. All patients were receiving chemotherapy for either advanced colorectal (n=49), gynaecological (n=48) or breast cancer (n=27). A team of eight coders are analysing recordings using both the MPCC and content analyses.ResultsPreliminary findings suggest the MPCC can be applied to oncology consultations. The coding team have reached agreement on how to code key issues discussed by patients and doctors including symptoms of the cancer, side effects of treatment, questions about prognosis, treatment decision making and the doctors' explanations about cancer status throughout chemotherapy cycles.ConclusionsThe MPCC may be a useful tool for examining patient-centredness in oncology. Future work will explore the value of the MPCC in assessing the impact of routinely collecting and feeding back patient reported outcome (PRO) data to oncologists. The MPCC will be used to assess if training oncologists to interpret and use the PRO data improves patient-centred care in consultations.
COMPASS collaborative research Strand 2: The development and evaluation of complex interventions for psychological distress in cancer patients
Authors: Velikova G , Sharpe M , Brown J 
Published: May 2011

AbstractAimsTo provide the basis for the development of active components of complex interventions for distress and rigorous evaluation of process measures and patient outcomes. A staged co-ordinated approach was adopted, with collaborative members completing different components of the work.MethodsTo supplement COMPASS trials evaluating screening for distress and testing complex interventions for depression in cancer patients, preparatory work for an intervention for distress was undertaken. Systematic meta-review of the use and meaning of the terms ‘psychological distress’ and ‘psychological interventions’ were completed. A prospective study of the outcomes of moderate distress over time (n=326) and a qualitative study of patient's views on potential treatments for moderate psychological distress (n=25) was undertaken in Edinburgh. The views of hospital-based oncology professionals about the assessment and management of psychological distress were explored in an interview study across the Yorkshire Cancer Network.ResultsModerate distress is common in cancer patients and persistent in a substantial minority at 7 months (36%). Distressed patients prefer information and guidance provided by those who understand the effect of cancer but are reluctant to see mental health professionals. 23 cancer professionals were interviewed (8 oncologists, 4 surgeons, 6 clinical nurse specialists (CNS) and 5 nurses). The CNS was pivotal to the detection and management of distress and overall, effective management was not optimal due to a lack of referral guidance and limited access to specialist psychological care. These studies supplement ongoing work evaluating screening for distress and depression and the evaluation of intensive treatments for depression in cancer patients.Future researchFuture research generated from the COMPASS collaboration includes development of a training programme to enable clinicians to use output from screening measures and self-help interventions for psychological distress incorporating e-health technology.