bluuebunny/crossref_metadata_2025_split huggingface dataset:
‘Palliative care equals end-of-life care’: barriers to referral in a paediatric tertiary care centre
Authors: Twamley Katherine , Kelly Paula , Craig Finella , Hollowell Delia Rizpah , Mendoza Patricia , Bluebond-Langner Myra 
Published: March 2012

BackgroundReferral rates to children's palliative care services are consistently low and occur late in the illness trajectory. Previous studies cite healthcare professionals' (HCP) attitudes and knowledge as barriers to referral. The majority of these studies were conducted in the US, where differences in palliative care services limit the applicability of findings to the UK. This paper presents the first ever survey of UK paediatric HCPs' knowledge and attitudes towards paediatric palliative care.AimTo describe attitudes towards palliative care and knowledge of services among HCPs working in a paediatric tertiary care hospital in the UK, and to consider their role in referrals.MethodsA survey of closed and opened-ended questions was sent to 923 HCPs in a large paediatric tertiary care hospital. Descriptive statistical analyses were conducted with SPSS, and thematic analysis of open-ended responses with NVIVO software.Results132 HCPs responded (14% response rate) including 60 nurses, 42 physicians and 30 other HCPs. HCPs were most likely to choose ‘diagnosis’ as the appropriate time to refer a patient to palliative care (48%); only 4% selected the end of life period. 63% disagreed with the statement ‘Palliative care is primarily about providing care at the end of life.’ Yet the most frequently reported reason for previous palliative care referrals was to ‘discuss with parents the option of the child dying at home or in a hospice’ (49%); 50 % of those completing the open text response box indicated that they associated palliative care with end-of-life care and dying.ConclusionsOur data suggest that given the HCPs' awareness of the principles of palliative care and knowledge of services, more attention needs to be given to HCPs' underlying association of palliative care with end-of-life. Other factors may also play a role in referral and require further research and consideration.
‘It's not just about death’: changing attitudes and knowledge of palliative care in neonatal units
Authors: Kelly Paula , Twamley Katherine , Moss Rebecca , Mancini Alexandra , Bluebond-Langner Myra , Koh Michelle 
Published: March 2012

BackgroundIn an effort to facilitate improved and earlier access to palliative care (PC) for babies and their families, a 4 h educational workshop on the principles, practice and resources in PC was offered in 21 neonatal units across London. Each workshop was tailored to ensure locally relevant information. This paper assesses the impact of these workshops.AimTo evaluate the impact of a short 4 h workshop on the attitudes towards PC and knowledge of services among neonatal clinical staff.MethodsBefore and after each workshop, attendees completed a survey of open and closed questions to assess changes in attitudes and knowledge. Descriptive statistical analyses were conducted with SPSS, and thematic analysis of open-ended responses with NVIVO software.Results331 healthcare professionals attended the sessions, and 264 (80%) completed questionnaires. The majority of attendees were experienced neonatal nurses working in NICU, with limited experience making referrals to PC services. Statistical tests showed significant (p<0.05) shifts in attitudes and knowledge. After the session, 80% of respondents felt confident referring to palliative care services, compared with 46% before. An additional 20% of respondents selected ‘diagnosis’ as the appropriate time to refer to PC. Analysis of open text responses revealed a shift in attitude after the sessions from a focus on dying/end of life, towards integrating PC as part of a holistic treatment plan. Over 79% of respondents reported that the workshop met their learning needs with regard to PC services and referral procedures.ConclusionsA short locally delivered workshop can change attitudes and increase knowledge in neonatal staff. Further work is being conducted to assess the impact of such changes on clinical practice, including referral to community and specialist PC services.
Living and dying with cancer in Thailand
Authors: Nilmanat Kittikorn , Chailungka Pachariya , Phungrassami Temsak , Promnoi Chantra , Tulathamkit Kandawasri , Phattaranavig Sasiwimon 
Published: March 2012

BackgroundCancer is a leading cause of death in Thailand. Thai cancer patients often seek medical treatment while in advanced stages of the disease. Despite a recent increase in this attention given to improve end of life care in Thailand, little research has been undertaken to describe the experiences of those who live at the end of life.AimsThe aim of this longitudinal ethnographic case study was to explore the experiences of living toward end of life in patients with advanced cancer.MethodsSeries interviews and participant observation were conducted on 15 patients with terminal advanced cancer and 20 family caregivers. The inductive qualitative analysis was applied.ResultsThe stories of these informants with advanced and terminal cancer reflected the experiences of living with suffering and moving beyond suffering. Sufferings experienced by informants included suffering related to the ill body and suffering related to care. Adopting religious doctrine, being hopeful, and being surrounded by love and care from family helps the informants move beyond and transcend the sufferings.ConclusionThe result of this study will be useful for healthcare providers to develop end of life care program in order to improve quality of life of the terminal cancer patients and to promote peaceful death at home.
Prognostic indicator tools in COPD: a systematic review
Authors: Firth Adam , Frank Tim , Sanders Caroline 
Published: March 2012

BackgroundPatients with severe chronic obstructive pulmonary disease have a burden of symptoms at least equivalent to that of patients with terminal cancer yet palliative care provision is less well established. A significant obstacle to providing palliative care for patients with COPD is the challenge associated with identifying those at risk of death when the condition is associated with such an unpredictable illness trajectory. Prognostic indicator tools may help overcome this but no systematic review has considered the utility of COPD specific prognostic indicator tools in primary care settings.AimTo explore whether multidimensional prognostic indicator tools in COPD can predict 12-month mortality in patients being managed in primary care.MethodsThis systematic review employs the discipline of narrative synthesis following the approach recommended by the Centre for Reviews and Dissemination (CRD). An extensive search incorporating relevant conference proceedings was conducted, followed by data extraction through tabulation, quality assessment by two researchers and synthesis of available data.Results22 individual tools were identified from 37 relevant papers. Four tools: the ADO index, HADO score, DOSE index and TARDIS were developed with a specific focus on primary care. Only the BODE index had been validated in sufficient cohorts for its efficacy to be confidently established; however the BODE index, with its 6-min walking test, lacks utility in primary care settings. No studies have assessed the prognostic approach currently recommended in UK clinical practice.ConclusionsNo current multidimensional prognostic indicator tools are sufficiently validated to be recommended for widespread use in UK primary care to identify patients at risk of death in the next 12-months. The research conducted to date suggests that there is scope to further validate some of the proposed tools and more work is required to understand the accuracy and applicability of prognostic indicator tools for use in COPD.
Male carers' perceptions of support for adults with multiple sclerosis: national survey findings
Authors: Sibley Andrew , Payne Sheila , Addington-Hall Julia 
Published: March 2012

BackgroundMultiple Sclerosis (MS) is more prevalent in women than men. Men are particularly likely to take on the role of carers in MS but this has been rarely researched. The EAPC Carer White Paper notes the paucity of research into carer subgroups' support needs.AimTo investigate the perception of support for adults with MS and of men caring for adults severely affected by MS.MethodQuestionnaire survey design. Questionnaire developed from initial qualitative interviews. Widely disseminated via UK MS Society.Findings231 men took part (85% online, 15% by post). Most cared for an adult with Secondary Progressive (44.2%) or Primary Progressive MS (37%). Men lived in 45 UK counties, mean age was 60 years, and half reported spending at least 50 h a week caring (52%). A third (34%) had not tried to access advice/information about support/services. Of those that had, most found it ‘very’ (15%) or ‘fairly easy to find’ (54%). Men aged under 55 years reported most difficulty in accessing information (p=0.006). Twenty-five per cent of men had received no support/services in the last year. Of the remainder, 67% reported the support/services had ‘made things easier’. Most men reported the amount of support received ‘was about right’ (68%), and rated professional care staff as ‘completely’ (16%), ‘very’ (37%) or ‘fairly reliable’ (32%). Most men were ‘extremely (8%), ‘very (29%) or ‘fairly satisfied’ (30%) with support from social services. Those still working reported significantly more dissatisfaction than retired men (p=0.05).ConclusionsMen were largely positive, but not effusive, about services/support available to them and the person in their care. Younger men repeatedly differed in their perceptions, suggesting that they either have higher expectations, greater need or both. Health professionals need to consider the specific needs of men carers.
Effect of opioids on the phagocytosis of neutrophils and monocytes: a systematic in vitro analysis
Authors: Boland Jason , Foulds Gemma , Ahmedzai Sam , Pockley Graham 
Published: March 2012

BackgroundBacterial infection is a common complication in patients with advanced disease, including cancer. Ingestion (phagocytosis) and subsequent killing of bacteria by neutrophils and monocytes are critical in the control of infection. Using a range of different methodologies, previous invitro and in vivo studies have generally reported that some commonly prescribed opioids are immunosuppressive (ie, morphine), whereas others have been shown to be immunoneutral (ie, fentanyl), and even immunostimulatory (ie, tramadol). However, direct, comparative, systematic studies aimed at analysing their relative impact remain lacking.AimsTo systematically assess the in vitro effects of clinically-relevant concentrations of commonly used opioids on the phagocytosis ofE coliby peripheral blood neutrophils and monocytes.MethodsPeripheral blood was collected from healthy volunteers and incubated with clinically-relevant concentrations of morphine, fentanyl, tramadol, buprenorphine, oxycodone, diamorphine, methadone or codeine for 60 min. Samples were then incubated with FITC-conjugated E.coli for 10 min at 37°C, at which time the proportion of neutrophils and monocytes that had phagocytosed E.coli, and the intensity of the phagocytic response was determined using whole blood flow cytometry (PHAGOTEST, Orpegen Pharma GmbH, Germany). Control samples were incubated at 4°C.ResultsAlthough morphine, fentanyl, tramadol and buprenorphine inhibited the phagocytic responses of neutrophils and monocytes by up to 75% in some individuals, due to inter-individual variability this did not reach statistical significance. Codeine, oxycodone, diamorphine and methadone had no detectable effect on neutrophil or monocyte phagocytosis.ConclusionAlthough the true impact of opioid treatment on the susceptibility of patients to bacterial infection in vivo has yet to be defined, these systematically observed in vitro findings indicate that opioid choice might impact on the clinical status of some patients who are at an increased risk of bacterial infection. Future work needs to elucidate the population prevalence to the susceptibility from these potentially immunosuppressive opioids.
Involvement, attitudes and training needs in palliative care of doctors in Camau, Vietnam
Authors: To Nghi M , Noble Bill 
Published: March 2012

BackgroundThe Camau Province of Vietnam has a population of over 1.2 million and the number of cancer patients needing palliative care is estimated approximately 1500. In 2010, an educational project in palliative care aiming to raise the standards of generalist palliative care for cancer patients in the community was funded by the Camau Cancer Control Committee. Therefore, as a first step, the authors undertook a survey of practitioners to evaluate key aspects of current palliative care provision in the province.AimTo evaluate the involvement, attitudes and training needs of doctors whose work relates to palliative care for advanced cancer patients.MethodA survey of 131 doctors who attended the first workshop of the project was undertaken in Camau City in July, 2010.ResultsA response rate of 71% was obtained. Palliative care provision to cancer patients was involved over 80% of rural family doctors. Pain, anorexia and fatigue were three most frequent symptoms. Over half of doctors believed that local services and home are likely appropriate place for patients with advanced cancer being cared for. The confidence levels in dyspnoea and pain management were 8% and 53%, respectively. Moreover, only one-tenth of doctors had experienced training in palliative care in 2 years recently.ConclusionsPalliative care for cancer patients formed a small but significant part of rural family doctors' caseload. The majority of respondents indicate their willingness to engage further with palliative care at their workplace. However, there are still barriers that prevent them from providing sound palliative care to cancer patients who need it. Lack of training in the field is more likely the most challenging issue.
Patients dying in the community – what role for primary care?
Authors: Gregan Paul , Lynch Marie , Loughrey Emer , O'Toole Eve 
Published: March 2012

BackgroundIn Ireland there are no formal frameworks to support primary care teams to identify and respond to the palliative care needs of their patients.AimsAs part of the Primary Palliative Care programme, the Irish Hospice Foundation, Irish College of General Practitioners and Health Service Executive surveyed GPs, Community Nursing (CN) and Allied Health Professionals (AHPs) to establish initiatives that would support the care for patients facing death in the community.MethodsFormal views were gathered from staff through consultation meetings (5) and subsequent distribution of questionnaires (685). Palliative care themes addressed included education, medication, patient pathways, communication and non-cancer. 105 staff participated in the consultation meetings and the questionnaires had a 27% (n=127) response rate.ResultsThe initiatives identified that directly benefit patient care included: introducing an electronic hand-over form between GP and out-of-hours services (78%); guidance in management of palliative medications (48%) and introducing a system for primary care teams to identify patients with palliative care needs (38%). From an education perspective, training in symptom control (66%) and palliative care for non-malignant disease (40%) were highly rated by all professions. The service enhancements identified, that have resource implications include: timely access to equipment (87%); greater access to OOH community nursing (73%); improved access to psychological support for patients/families (71%) and access to advice and information from specialist palliative care outside traditional hours (69%).ConclusionsCommunity healthcare professionals recognise the role they play in responding to patient's palliative care needs. The challenges and education deficits identified were broadly in keeping with data available from other countries. Enhancing co-ordinated and communication of care as well as the role for palliative care for patients with non-malignant disease require attention. More resources are required to ensure fully responsive and holistic primary care service for patients dying in the community.
Healthcare professionals' views on factors influencing end-of-life care in hospitals
Authors: Reid Colette , Bloor Sophia , Gibbins Jane , Burcombe Melanie , McCoubrie Rachel , Forbes Karen 
Published: March 2012

AimsThe majority of patients die in hospitals, yet care delivered to the dying in the acute setting is variable and the underlying reasons for this are not documented well. The authors aimed to explore healthcare professionals' views on the factors influencing good quality end-of-life (EOL) care in an acute hospital trust.MethodsWithin a feasibility study examining the impact of a simple EOL care tool on the dying experience, the authors 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 (staff felt that the decision to switch to comfort care was often made late which meant that patients received unnecessary treatments); hospital culture (reluctance to withdraw active treatments; it was ‘brave’ to state a patient was dying); hospital systems (patients moved frequently between wards which did not facilitate diagnosing dying and medical notes did not provide sufficient information to aid junior doctors out of hours when making decisions about sick patients) and the impact of the EOL tool on 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. The authors 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.
Narrative interventions with patients in healthcare: a literature review
Authors: Vedder Rachel , Winslow Michelle , Noble Bill 
Published: March 2012

BackgroundSerious illness disrupts the narrative coherence central to maintaining our sense of self. In healthcare interactions, including palliative medicine consultations, paying close attention to patient narrative provides insight into the multi-dimensional impact illness has on the whole person, and can be therapeutic; helping a person make sense of their illness and engage in narrative repair. Co-construction of narrative in consultation reflects a shared understanding of a patient's problems and a plan for future action that is collaborative. This literature review is the first step in a study to develop and evaluate a narrative-based approach for palliative medicine consultations following the Medical Research Council guidance on development and evaluation of complex interventions.AimTo describe the scope and effectiveness of narrative interventions with patients in healthcare.MethodsLiterature was sought from three electronic databases, hand-searching of journals, citation lists and on recommendations. Sources include all types of papers from peer-reviewed journals and textbooks published in English that describe narrative practice in healthcare and evaluate narrative interventions with adult patients in healthcare settings.ResultsOf 1884 references initially identified 222 sources were included in the review. These were sorted into three categories: 1. Narrative theory applied in healthcare; 2. Biographical interventions; 3. Narrative therapy.ConclusionsThe application of narrative theory in healthcare has grown since the 1980s, has broad scope, and includes many different interventions with patients few of which have been evaluated. Biographical interventions in gerontology however predate this more general interest, and with regards to life review therapy have demonstrated benefit in emotional well-being and life satisfaction for older people. Life review interventions such as Dignity Therapy have been successfully adapted for use in palliative care.
A study of pain, peripheral neuropathy and psychosocial late effects in multiple myeloma patients
Authors: Cachia Elaine , Eiser Christine , Ezaydi Youssef , Greenfield Diana , Ahmedzai Sam , Snowden John 
Published: March 2012

BackgroundWhile intensive and novel treatments have significantly extended life expectancy in multiple myeloma, the cumulative impact of disease and treatment related factors on quality of life in relapsed patients is poorly characterised.AimsTo define the spectrum of quality of life, fatigue, pain, peripheral neuropathy and work disability affecting patients living with advanced relapsed myeloma.MethodsThe authors prospectively recruited patients with myeloma who had undergone intensive management of myeloma and had received at least one subsequent treatment for progressive disease. Patients were assessed for generic (SF-12) and cancer specific (EORTC) health related quality of life parameters, pain (BPI-SF), peripheral neuropathy (s-LANSS), and concerns (adapted from the Profile of Concern's Questionnaire).Results32 patients (median age 61 years) participated: median duration from diagnosis was 5.5 years (range 2–12) and the median number of lines of previous treatment was 3 (range 2-6). The majority (69%) of patients were on regular analgesia. Despite stable disease, ongoing fatigue and pain were predominant symptoms. Pain had a predominantly neuropathic element in half of the cohort. Other features of neuropathy, paraesthesiae and sensory loss, were also common. Physical functioning scores were highly correlated with pain (r=−0.671; p=0.001) and QoL (r=0.576; p=0.001) and fatigue (r=−0.558; p=0.001). Social functioning was also compromised and patients reported dwelling on their current and future illness, worried of recurrence and shortened lifespan. Work disability was reflected by a fall in active or recent employment from 72 to 44% from diagnosis to the date of assessment.ConclusionThe late effects of myeloma and its treatments result in compromised quality of life with fatigue, pain, peripheral neuropathy and functional disability despite disease control with modern therapy. Models for comprehensive care of myeloma should actively address physical and social quality of life in this expanding population of patients.