bluuebunny/crossref_metadata_2025_split huggingface dataset:
UTILITY OF THE ‘SURPRISE QUESTION’ IN A DAY THERAPY PALLIATIVE CARE PRACTICE; SHOULD SPECIALIST PALLIATIVE CARE BE FOCUSING ON TOTAL SYMPTOM BURDEN AND COMPLEXITY RATHER THAN PROGNOSTICATION?
Authors: Gishen F , Eades J , Tookman A 
Published: February 2014

IntroductionThere is recognition that the nature of palliative care may be changing, as cancer survival improves and long-term conditions increase the complexity of the case load. Previous work has examined the accuracy of expert prognostication in patients with a life expectancy of less than a year. This piece of work also considers the accuracy of prognostication in patients thought to have a longer prognosis, and who may therefore be largely excluded from referral to specialist palliative care services, based on current referral patterns. It questions whether the palliative care net should be widened to reflect uncertainties in prognostication, and thereby extend valuable end of life services to a broader range of patients.Aim(s) and method(s)A ‘snapshot’ cohort of the total number of patients accessing a palliative care day therapy unit on a given date was taken. Patients were categorised into the groups below using the ‘Surprise Question’ (Gold Standards Framework) by two experts in Palliative Care (one clinical nurse specialist/ one physician) and triple-read by a second palliative care consultant.End of life care=likely to have less than 12 month prognosis (malignant & non-malignant diagnoses).Cancer Survivorship= malignant diagnosis with a probable life expectancy of greater than 12 months.Non Malignant Survivorship=Patient has a non-malignant diagnosis with a probable life expectancy of greater than 12 months.The patient group was re-analysed one year later, to assess the accuracy of prognostication.ResultsSee Abstract P 37 Table 1.Table 1Status after one yearOriginal classificationOriginal numberAliveDiedLost to F/UEnd of life care8836 (41%)49 (56%)3 (3%)Cancer survivorship188135 (72%)42 (22%)11 (6%)Non malignant survivorship2518 (72%)5 (20%)2 (8%)Conclusion(s)Our end of life predictions mirror other studies for those patients predicted to have a life expectancy of less than one year. We have also demonstrated that the cancer survivorship population (ie greater than 12 months life expectancy) had higher than predicted mortality rates within the first year. Is the surprise question an optimal tool? Does the surprise question promote ‘cherry picking’; should specialist palliative care be focusing on total symptom burden and complexity rather than prognostication?
EVALUATING AN NHS COMPLEMENTARY THERAPIES SERVICE
Authors: Briscoe J , Browne N 
Published: February 2014

IntroductionA complementary therapies service was introduced at Whipps Cross University Hospital for patients with cancer and palliative care needs. The service was evaluated using an evaluation tool. A range of therapies are offered including aromatherapy, massage, reflexology, shiatsu and homoeopathy. They are provided on a one-to-one basis for patients and, to a lesser extent, for carers; a weekly relaxation class also serves as a drop-in support group. We support self-help in a range of ways, from providing simple items, such as aromasticks, to offering training on mindfulness and relaxation techniques.Aim(s) and method(s)National guidelines suggest the main purposes of service evaluation are to analyse patient views, wellbeing and outcomes, and measure symptom management. The Measure Your Concerns and Wellbeing (MYCaW) questionnaire meets these needs, and was designed specifically for evaluating supportive cancer care interventions, including complementary therapies. We use MYCaW to identify patients' own priorities for interventions and enable them to offer personalised feedback. Results can provide vital data about their experience and symptom management, particularly how this changes over time and how other aspects of patients' lives are affected.ResultsThe results indicated a 30% perceived improvement of symptoms, including wellbeing. Results for male patients were slightly higher than female patients.Conclusion(s)The MYCaW questionnaire has generated a local evidence base that shows perceived improvements in symptoms and wellbeing following complementary treatments. It is important to undertake individualised qualitative evaluations as well as quantitative studies. Evidence demonstrating efficacy is vital in all areas of healthcare, including complementary therapies, to justify their provision.
BENEFITS OF HEALTH AND SOCIAL CARE INTEGRATION
Authors: Layden J , Nicol B , Connelly M , Hekerem Diana , Meade R 
Published: February 2014

IntroductionScotland's health boards and local authorities are moving towards integrated funding and service provision. Effective integration will depend on health, social care and third/independent sector partners pooling resources and planning care together, led by clinicians and other professionals. Working with a voluntary sector expert as a partner in service design can enable these principles to be put into practice in palliative care.Aim(s) and method(s)Marie Curie Service Development in Scotland's principles are whole system review and development of services; identifying opportunities for collaborative working; and implementing cross sector initiatives and partnerships. Demographic and activity data, stakeholder focus groups and workshops, service user survey and NHS and Scottish Government programme assurance have been used to design, review and improve integrated services and programmes.ResultsIntegrated Health and Personal Care Community Support – Over 77 patients would have required hospital admission without the integrated service. 83% of respondents thought the service had enabled more input into decision making about their care; and 66% were able to spend more time with their loved ones, and have reported an improved quality of life. Redesign Programmes – The 3 redesign programmes collaboratively bring together health, social care and third/independent sector partners at both strategic and operational levels.Conclusion(s)The voluntary sector as a key partner in supporting the integration agenda with specific expert knowledge. For palliative care, Marie Curie can test new ways of working and develop community focused collaborations, with evidence of benefits to patients and families as well as the health economy.
PALLIATIVE CARE BY THE COMMUNITY – MAXIMISING THE IMPACT OF VOLUNTEERS IN HOME CARE SERVICES
Authors: Hill M , Ockenden N , Morris S , Payne S 
Published: February 2014

IntroductionThe Volunteer Management in Palliative Care (VMPC) survey (67% response rate) revealed that 32% of hospices that involve volunteers do so within their home care service. This is considerably lower than in day care (90%), bereavement (79%) or inpatient care (74%). Moreover, community volunteering is considerably more developed in some other countries.Aim(s) and method(s)The paper aims to assess the impact of volunteering within community care and explore challenges and opportunities for expanding its role by drawing on data from the VMPC project which engaged 205 staff, volunteers, patients and relatives in primarily face-to-face individual interviews across eleven in-depth organisational case studies.ResultsAs well as their time, the evidence shows that volunteers make substantial distinctive contributions to community care outcomes underpinned by their unique relationship with patients, relatives and the community. Substantial good practice learning included the need for specialist training and induction sessions; more flexible and comprehensive remote and contact management mechanisms to ensure volunteers are emotionally and practically supported; developing clear guidelines for volunteers, staff and patients to effectively manage boundary and attachment issues; and a more sophisticated understanding of risk. The lack of involvement of volunteers in community care is often driven by historical organisational conceptions of appropriate roles and fears of job substitution. Where volunteers have been successfully introduced these concerns have been sensitively confronted through engaging community care staff in role development and organisational change.Conclusion(s)There is considerable potential for increasing the role of volunteers in emotional, social and practical support roles in community care.
‘RING US IF YOU NEED US’: THE IMPORTANCE OF REASSURANCE TO FAMILY CAREGIVERS PROVIDING HOME-BASED END-OF-LIFE CARE
Authors: Dunn L , Byrne P , Lloyd-Williams M 
Published: February 2014

IntroductionThis research explores the experience of uncertainty and reassurance from the perspective of family carers.Aim(s) and method(s)To explore the phenomenological experience of providing end of life care for a family member with a life-limiting illness, at home. Fifty-one narrative interviews were conducted with bereaved family carers. Data was analysed using thematic structural analysis (Robichaux 2003; Riessman 2008).ResultsUncertainty emerged as a key feature of the caregiving experience. Many carers were invited by community health care professionals to ‘ring us if you need us’. However, carers explained that they were reluctant to telephone about non-emergency issues. In some cases, this led to feelings of isolation, uncertainty about pain and symptom management and uncertainty as their relative approached death. By contrast, carers explained that they would feel more reassured if they had received additional contact from health and social care professionals to ‘check up’ on them and ‘see how they were doing’. Additionally, scheduled visits from community and district nurses were a great source of reassurance to many carers. Feelings of uncertainty were greatest in the days and hours approaching their relative's death.Conclusion(s)Health care professionals working in the community may have limited awareness of the important impact that their presence has in reassuring family caregivers and improving their confidence in caring. In addition, increased informal contact made by health and social care professionals may reduce carers' uncertainty in providing end-of-life care at home.
SUPPORTING PATIENTS TO ACHIEVE THEIR PREFERRED PLACE OF CARE AT THE END OF LIFE
Authors: Griggs C , Gleeson K 
Published: February 2014

IntroductionHospital deaths make up more than half of all deaths in England and Wales, despite the finding that the vast majority of patients express a preference for home death. The Royal Liverpool and Broadgreen University Hospitals Trust and Marie Curie Cancer Care have developed the role of Case Manager – End of Life Care (CM-EOLC) and created a Supported Discharge Service (SDS) to facilitate and support urgent and rapid discharges to home of deteriorating and dying patients.Aim(s) and method(s)To illustrate the impact of the role of CM-EOLC in RLBUHT and of SDS in enabling individuals to meet and remain in their PPC at the end of life.ResultsPertinent information, including outcome data, is collected routinely for each patient referred to the service. Data between December 2012 to November 2013 was analysed and illustrates a 37% increase on the previous year in successful rapid discharges home to die. Forty-seven patients who were deteriorating quickly were also urgently discharged home. Forty-four patients received additional care from SDS enabling them to die at home. There were no readmissions to hospital for this cohort of patients.Conclusion(s)Through partnership working, the development of innovative new services and improving individual case management, patients who are nearing the end of their lives are being identified earlier. Patients are being discharged to their preferred place of care with additional support and care in the home environment enabling them to remain there for their last hours/days.
DO INDIVIDUALS WITH SEVERE MENTAL ILLNESS RECEIVE EQUITABLE CARE IN THE LAST YEAR OF LIFE?
Authors: Gola A 
Published: February 2014

IntroductionDo individuals with severe mental illness receive equitable care in the last year of life? People living with severe mental illness (SMI) have higher morbidity rates compared to general population. This is partly explained by lifestyle factors; however there is emerging evidence that the increased prevalence rates of cancer and infectious diseases are also attributable to the lack of appropriate healthcare provision, including in the last year of life. For these patients, tasks to quantify the degree of under-use of medical care, as well as to draw health economic implications have been challenging for researchers.Aim(s) and method(s)To estimate whether people with SMI in the UK have poorer access to healthcare services in the last year of life. The analysis utilises the Heath Improvement Network, a UK primary care database with over 450 General practices. In the cohort study, we identify patients with and without SMI deceased due to cancers and infectious diseases and estimate the reduced likelihood of receiving adequate medical attention for patients with SMI, adjusting for various factors such as race and deprivation area. Patient, provider, and system-level factors are integrated to consider health outcomes in people with SMI.ResultsCompared to demographically similar general practice patients, people with SMI diagnosis have fewer recorded screening tests, lifestyle counselling and referrals for treatments. Furthermore, they frequently receive inadequate advice from healthcare professionals regarding modifiable risk factors. Disparities are also seen after medical hospitalizations.Conclusion(s)Fragmentation of healthcare produces poor outcomes for individuals with SMI. Health economic, clinical and research implications are drawn.
WHAT DO WE KNOW ABOUT THE END-OF-LIFE DECISION-MAKING EXPERIENCES OF PATIENTS WITH ADVANCED LUNG CANCER?
Authors: Roulston A 
Published: February 2014

IntroductionLung cancer is an unforgiving illness with most patients being diagnosed in the advanced stages of disease. How much do we really know about the range of end-of-life care decisions that patients encounter?Aim(s) and method(s)To explore end-of-life care decision-making by patients diagnosed with advanced lung cancer known to a community palliative care team in Northern Ireland.Qualitative data were obtained during two individual interviews (mean duration 48 minutes) with 12 community patients diagnosed with advanced lung cancer. Llewellyn-Thomas' decision-making framework informed data collection and data were analysed using Interpretative Phenomenological Analysis and narrative analysis.ResultsEmergent themes mirrored an illness journey. (1) Beginnings: There's something not right, bad news, emotional responses and no way back; (2) Middles: Treatment decision-making, impact of treatment on quality of life and impact of illness on self, social relations and engagement with the physical world; (3) Endings: Preferred priorities for care, a good death, legacy, coping patterns and funeral wishes. Three cross-cutting themes were common: preciousness of time; importance of skilful communication, and maintenance of hope.Conclusion(s)This study offers insight into patients' experiences of living with advanced lung cancer, their daily navigation of decisions that surpassed our assumptions, and patient expectations of professionals. Despite knowing their inevitable fate, findings highlighted the importance of maintaining hope and exploring futures.
10 YEARS ON - HAS THE GOLD STANDARDS FRAMEWORK (GSF) INFLUENCED NURSING CARE OF PATIENTS WITH END OF LIFE CARE NEEDS IN THE COMMUNITY?
Authors: Meehan HC , Munday D 
Published: February 2014

IntroductionDistrict nurses (DN) play a key role in supporting patients with palliative care needs in the community. Gold Standards Framework (GSF) is a service improvement tool that was developed over 10 years ago for primary care, to enable GP practices to proactively support patients with palliative care needs.Aim(s) and method(s)This study explores the experiences of DNs working with practices that have implemented GSF and investigates their perceptions of how GSF has influenced provision of nursing care to patients with palliative care needs in the community. A qualitative methodology was used. Semi-structured interviews were undertaken with 8 DNs from one Trust. This Trust provided community nursing services to practices that had been early adopters of GSF.ResultsThe results identified a number of benefits and challenges for DNs in working with GSF practices. The benefits included early referral of patients to district nursing, proactive provision of supportive nursing care, team working, improved communication and improved recognition of the DN role in end of life care. Challenges included supporting practices with varying levels of GSF adoption, working with variability of engagement by GPs within a practice, supporting more patients with palliative care needs in the community, lack of continuity when working with external providers.Conclusion(s)There was evidence that GSF had influenced DN roles. There was evidence of an emerging advocacy role for GSF, the development of a nursing model using the principles of GSF to provide proactive nursing care to patients and empowerment of DNs to embed and sustain GSF within a local area.
HELPING PEOPLE WITH VERY SEVERE COPD: FEASIBILITY STUDY OF A NOVEL COMMUNITY-BASED HOLISTIC INTERVENTION
Authors: Kendall M , Buckingham S , Ferguson S , Sheikh A , Murray SA , Boyd K , Pinnock H , MacNee W , Worth A , White P 
Published: February 2014

IntroductionChronic Obstructive Pulmonary Disease (COPD) is a major cause of death worldwide. Research shows people with severe COPD have unmet needs, and the traditional cancer palliative care model is not appropriate.Aim(s) and method(s)To pilot and evaluate HELP-COPD - a community-based proactive holistic assessment of needs. The intervention comprised a home visit by a respiratory nurse, following discharge from hospital after an exacerbation, to discuss social/psychological/spiritual/physical needs, provide advice/information and make further referrals. A HELP_COPD Action Plan was completed and given to the patient and general practitioner. Follow-up included three phone calls over six months.Qualitative evaluation of HELP-COPD comprised interviews with participating patients, lay-carers and health professionals, alongside documentary analysis of completed action plans. Interviews were recorded, transcribed and entered into NVivo for thematic analysis.Results23 patients, from two hospitals, completed action plans. 31 interviews were completed. Patients were generally positive, openly discussing concerns and coping strategies in all domains. Professionals considered the intervention feasible and potentially valuable. Actions included facilitating discussion with their GP on palliative use of opiates, reinforcing referral to pulmonary rehabilitation and providing details of local voluntary services. However, fewer unmet needs were identified than expected, and some patients declined proffered services/information. Participants highlighted overlap with discharge planning and case management provided by community teams.Conclusion(s)HELP COPD was feasible and generally welcomed by patients. Fewer actions were identified than anticipated due to a combination of inappropriate timing, reluctance to accept social services, duplication by existing services and long-term adaptation reducing recognition of need and of the seriousness of the condition.
THE EVIDENCE BASE OF QUALITY STATEMENTS ON ADVANCED DEMENTIA: A SYSTEMATIC REVIEW
Authors: Candy B , Elliott M , Jones L , Sampson E 
Published: February 2014

IntroductionThe National Institute for Health and Care Excellence (NICE) clinical guideline on dementia highlighted how people with dementia may not be able to access good quality palliative care (NICE 2007). Subsequently, the NICE Quality Standards Programme for Dementia provided quality statements for commissioners to guide the care of those with advanced dementia. However, the literature review supporting these statements identified little empirical evidence behind these. Since then new research on end of life care in dementia has been published.Aim(s) and method(s)To undertake a systematic review of the current evidence relevant to three NICE quality statements on care of people with advanced dementia: (1) advanced care planning; (2) assessment of palliative care needs; (3) a named care co-ordinator. We are searching four databases including EMBASE and other sources including expert consultation. We seek high quality quantitative and qualitative research. For the quantitative evidence, in our summation we are prioritising studies of comparative design. If there are randomised trials we will use as appropriate meta-analysis to combine the trials. For the qualitative evidence we are using thematic synthesis approaches as appropriate. All key stages are undertaken in duplicate.ResultsWe will have completed our review by March 2014 and will summarise how well each quality statement is supported by evidence.Conclusion(s)This review will identify how robust these commissioning statements are with respect to the evidence that underlies them. We will be able to make recommendations on how the quality standards may be improved and made more effective in day to day practice.
Introduction of a manual vacuum aspiration service: a model of service within a NHS Sexual Health Service
Authors: Pillai Mary , Welsh Val , Sedgeman Kirsty , Gazet A Caroline , Staddon Juliet , Carter Helen 
Published: February 2014

BackgroundWe assessed the applicability, acceptability and cost implications of introducing the manual vacuum aspiration (MVA) technique with local anaesthesia for fully conscious first-trimester termination of pregnancy within our service and for our population.SettingThe outpatient setting of a Pregnancy Advisory Service within a NHS Sexual Health Service.MethodsSelf-administered misoprostol and diclofenac, extra-amniotic local anaesthetic gel and paracervical mepivicaine prior to MVA. Routinely collected data were used to provide information on uptake, demographic details, timing, pain score, complications, contraceptive uptake, and economic implications for our service.ResultsMVA was chosen by 305/1681 potentially eligible women. Forty percent had the procedure on the day they attended for assessment. Seventy-nine percent gave a pain score of 3 or less out of 10. Complications occurred in six cases (2%); these included cervical rigidity, a false passage, retained products of conception, bleeding (more than 200 ml) and one allergic reaction. Eighty percent of women chose to commence a long-acting reversible contraception (LARC) method at the time of MVA. Operating theatre utilisation was reduced by one termination list per week and cost savings of around £60 000 per annum were realised.ConclusionsThe technique for fully conscious MVA was very suitable for our outpatient setting. It was associated with very low levels of pain and bleeding. The uptake of LARC was high, and particularly the ability to provide intrauterine contraception at MVA was associated with a very high uptake.