http://www.biomedcentral.com/bmcpalliatcare/ The latest research articles published by BMC Palliative Care 2009-11-28T00:00:00Z This is an RSS newsfeed from BioMed Central It is intended to be used with an RSS reader. For more information about RSS newsfeeds from BioMed Central, visit http://www.biomedcentral.com/info/about/rss/ Background: Out-of-hours GP care in England, Denmark and the Netherlands has been reorganised and is now provided by large scale GP co-operatives. Adequate transfer of information is necessary in order to assure continuity of care, which is of major importance in palliative care. We conducted a study to assess the availability, content and effect of information transferred to the GP co-operatives. Methods: Cross-sectional exploratory study of all palliative care phone calls during a period of one year to a GP co-operative. Results: The total number of phone calls about patients who needed palliative care was 0.75% of all calls to the GP co-operative. Information was transferred by GPs on 25.5% of palliative care patient calls, and on 12% of palliative care patient calls from residential care homes. For terminally ill patients the number of information transfers increased to 28.9%. When information was transferred, the content consisted mainly of clinical data. Information about the diagnosis and current problems was transferred in more than 90% of cases, information about the patient's wishes in 45% and information about the patient's psychosocial situation in 30.5% of cases.A home visit was made after 53% of the palliative care calls.When information was transferred, fewer patients were referred to a hospital. Conclusion: GPs frequently fail to transfer information about their palliative care patients to the GP co-operatives. Locums working at the GP co-operative are thus required to provide palliative care in complex situations without receiving adequate informationGPs should be encouraged and trained to make this information available to the GP co-operatives. http://www.biomedcentral.com/1472-684X/8/17 Bart Schweitzer Nettie Blankensterin Luc Deliens Henriette van der Horst BMC Palliative Care 2009, 8:17 2009-11-28T00:00:00Z doi:10.1186/1472-684X-8-17 BMC Palliative Care 1472-684X 8 17 2009-11-28T00:00:00Z XML Background: Unbearable suffering is an important issue in end-of-life decisions. However, there has been no systematic, prospective, patient-oriented research which has focused on unbearable suffering, nor is there a suitable measurement instrument. This article describes the methodological development of a quantitative instrument to measure the nature and intensity of unbearable suffering, practical aspects of its use in end-stage cancer patients in general practice, and studies content validity and psychometric properties. Methods: Recognizing the conceptual difference between unbearability of suffering and extent or intensity of suffering, we developed an instrument. The compilation of aspects considered to be of importance was based on a literature search. Psychometric properties were determined on results of the first interviews with 64 end-stage cancer patients that participated in a longitudinal study in the Netherlands. Results: The instrument measures five domains: medical signs and symptoms, loss of function, personal aspects, aspects of environment, and nature and prognosis of the disease. Sixty nine aspects were investigated, and an overall score was asked. In 64 end-stage cancer patients the instrument was used in total 153 times with an average interview time varying from 20-40 minutes. Cronbachs alpha's of the subscales were in majority above 0.7. The sum scores of (sub)scales were correlated strongly to overall measures on suffering. Conclusion: The SOS-V is an instrument for measuring the unbearability of suffering in end-stage cancer patients with good content validity and psychometric properties, which is feasible to be used in practice. This structured instrument makes it possible to identify and study unbearable suffering in a quantitative and patient-oriented way. http://www.biomedcentral.com/1472-684X/8/16 Kees Ruijs Bregje Onwuteaka-Philipsen Gerrit van der Wal Ad Kerkhof BMC Palliative Care 2009, 8:16 2009-11-03T00:00:00Z doi:10.1186/1472-684X-8-16 BMC Palliative Care 1472-684X 8 16 2009-11-03T00:00:00Z XML Background: As the populations of many developed nations continue to age at rapid rates it is becoming increasingly important to enhance palliative care service delivery in order to meet anticipated demand. Rural areas face a number of challenges in doing this, and thus dedicated attention must be given to determining how to best enhance service delivery in ways that are sensitive to their particular needs. The purposes of this article are to determine the vision for establishing secondary palliative care service hubs (SPCH) in rural communities through undertaking a case study, and to ascertain the criteria that need to be considered when siting such hubs. Methods: A rural region of British Columbia, Canada was selected for primary data collection, which took place over a five-month period in 2008. Formal and informal palliative care providers (n = 31) were interviewed. A purposeful recruitment strategy was used to maximize occupational and practice diversity. Interviews were conducted by phone using a semi-structured guide. Interviews were audio recorded and transcribed verbatim. Data were managed using NVivo8™ software and analyzed thematically, using investigator triangulation to strengthen interpretation. Results: Four themes emerged from the dataset: (1) main SPCH features; (2) determining a location; (3) value-added outcomes; and (4) key considerations. It was found that participants generally supported implementing a SPCH in the rural region of focus. Several consistent messages emerged, including that: (1) SPCHs must create opportunities for two-way information exchange between specialists and generalists and communities; (2) SPCHs should diffuse information and ideas throughout the region, thus serving as a locus for education and a means of enhancing training opportunities; and (3) hubs need not be physical sites in the community (e.g., an office in a hospice or hospital), but may be virtual or take other forms based upon local needs. Conclusion: Visioning innovation in the provision of palliative care service in rural communities can be enhanced by consultation with local providers. Interviews are a means of determining local concerns and priorities. There was widespread support for SPCH coupled with some uncertainty about means of implementation. http://www.biomedcentral.com/1472-684X/8/15 Valorie Crooks Heather Castleden Nadine Schuurman Neil Hanlon BMC Palliative Care 2009, 8:15 2009-10-09T00:00:00Z doi:10.1186/1472-684X-8-15 BMC Palliative Care 1472-684X 8 15 2009-10-09T00:00:00Z XML Background: Opioid analgesics have proven efficacy in the short-term management of chronic cancer pain, but data on their long-term use is more limited. OROS® hydromorphone is a controlled-release formulation of oral hydromorphone that may be particularly well suited to long-term management of chronic cancer pain because it provides stable plasma concentrations and consistent analgesia with convenient once-daily dosing. The objective of this study (DO-118X) was to characterise the pain control achieved with long-term repeated dosing of OROS® hydromorphone in patients with chronic cancer pain. Methods: In this multicentre, phase III, open-label, single treatment, 1-year extension study, OROS® hydromorphone was administered to 68 patients with moderate-to-severe chronic cancer pain, who had successfully completed a short-term equivalence study, and whose pain was controlled with a stable dose of medication (≥ 8 mg OROS® hydromorphone or equivalent controlled-release morphine). Patients were started on the dose of OROS® hydromorphone equivalent to the opioid dose on which they achieved dose-stable pain control in the equivalence study; dose adjustments were made as necessary and breakthrough pain medication was permitted. Efficacy was assessed with the Brief Pain Inventory (BPI) and patient and investigator global evaluations of treatment effectiveness. No formal statistical analysis was done. Results: The mean (standard deviation) duration of exposure to study medication was 139 (129.9) days and the mean (standard deviation) average daily consumption of OROS® hydromorphone was 43.7 (28.14) mg/day. All scores were maintained at a mild to moderate severity throughout the study; however, BPI scores for pain at its worst, pain at its least, pain on average, pain right now, and pain relief were slightly worsened at end point compared with baseline. Mean BPI pain interference with daily activities and patient and investigator global evaluation scores also remained generally stable. Treatment effectiveness was rated as fair to good throughout the study. The most frequently reported adverse events were nausea (n = 24, 35.3%), constipation (n = 22, 32.4%), and vomiting (n = 15, 22.1%). Conclusion: The results of this extension study suggest that long-term repeated dosing with once-daily OROS® hydromorphone can be beneficial in the continuing management of persistent, moderate-to-severe cancer pain. http://www.biomedcentral.com/1472-684X/8/14 Magdi Hanna Alberto Tuca John Thipphawong BMC Palliative Care 2009, 8:14 2009-09-15T00:00:00Z doi:10.1186/1472-684X-8-14 BMC Palliative Care 1472-684X 8 14 2009-09-15T00:00:00Z XML Background: Primary health care providers play a dominant role in the provision of palliative care (PC) in Australia but many gaps in after hours service remain. In some rural areas only 19% of people receiving palliative care achieve their goal of dying at home. This study, which builds on an earlier qualitative phase of the project, investigates the gaps in care from the perspective of general practitioners (GPs) and PC nurses. Methods: Questionnaires, developed from the outcomes of the earlier phase, and containing both structured and open ended questions, were distributed through Divisions of General Practice (1 urban, 1 rural, 1 mixed) to GPs (n = 524) and through a special interest group to palliative care nurses (n = 122) in both rural and urban areas. Results: Questionnaires were returned by 114 GPs (22%) and 52 nurses (43%). The majority of GPs were associated with a practice which provided some after hours services but PC was not a strong focus for most. This was reflected in low levels of PC training, limited awareness of the existence of after hours triage services in their area, and of the availability of Enhanced Primary Care (EPC) Medicare items for care planning for palliative patients. However, more than half of both nurses and GPs were aware of accessible PC resources.Factors such as poor communication and limited availability of after hours services were identified the as most likely to impact negatively on service provision. Strategies considered most likely to improve after hours services were individual patient protocols, palliative care trained respite carers and regular multidisciplinary meetings that included the GP. Conclusion: While some of the identified gaps can only be met by long term funding and policy change, educational tools for use in training programs in PC for health professionals, which focus on the utilisation of EPC Medicare items in palliative care planning, the development of advance care plans and good communication between members of multidisciplinary teams, which include the GP, may enhance after hours service provision for patients receiving palliative care at home. The role of locums in after PC is an area for further research http://www.biomedcentral.com/1472-684X/8/13 Heather Tan Margaret O'Connor Gail Miles Britt Klein Peter Schattner BMC Palliative Care 2009, 8:13 2009-09-14T00:00:00Z doi:10.1186/1472-684X-8-13 BMC Palliative Care 1472-684X 8 13 2009-09-14T00:00:00Z XML Background: Spinal fractures are a common source of morbidity in cancer patients. Balloon Kyphoplasty (BKP) is a minimally invasive procedure designed to stabilize fractures and correct vertebral deformities. We performed a meta-analysis to determine the efficacy and safety of BKP for spinal fractures in cancer patients. Methods: We searched several electronic databases up to September 2008 and the reference lists of relevant publications for studies reporting on BKP in patients with spinal fractures secondary to osteolytic metastasis and multiple myeloma. Outcomes sought included pain relief, functional capacity, quality of life, vertebral height, kyphotic angle and adverse events. Studies were assessed for methodological bias, and estimates of effect were calculated using a random-effects model. Potential reasons for heterogeneity were explored. Results: The literature search revealed seven relevant studies published from 2003 to 2008, none of which were randomized trials. Analysis of those studies indicated that BKP resulted in less pain and better functional outcomes, and that these effects were maintained up to 2 years post-procedure. While BKP also improved early vertebral height loss and spinal deformity, these effects were not long-term. No serious procedure-related complications were described. Clinically asymptomatic cement leakage occurred in 6% of all treated levels, and new vertebral fractures in 10% of patients. While there is a lack of studies comparing BKP to other interventions, some data suggested that BKP provided similar pain relief as vertebroplasty and a lower cement leakage rate. Conclusion: It appears that there is level III evidence showing BKP is a well-tolerated, relatively safe and effective technique that provides early pain relief and improved functional outcomes in patients with painful neoplastic spinal fractures. BKP also provided long-term benefits in terms of pain and disability. However, the methodological quality of the original studies prevents definitive conclusions being drawn. Further investigation into the use of BKP for spinal fractures in cancer patients is warranted. http://www.biomedcentral.com/1472-684X/8/12 Carmen Bouza Teresa Lopez-Cuadrado Patricia Cediel Zuleika Saz-Parkinson Jose Maria Amate BMC Palliative Care 2009, 8:12 2009-09-09T00:00:00Z doi:10.1186/1472-684X-8-12 BMC Palliative Care 1472-684X 8 12 2009-09-09T00:00:00Z XML Background: Southern Africa is disproportionately affected by the HIV/AIDS epidemic. In Lesotho 23% of adults are HIV-positive, and only 26% of those in need are accessing antiretroviral treatment (ART). Consequently, about 18,000 people die from AIDS each year. In this situation, palliative care is needed towards the end of life, but is also recommended throughout the HIV disease trajectory. The World Health Organisation (WHO) has produced the Integrated Management of Adolescent and Adult Illness (IMAI) guidelines, which includes a palliative care guidebook (as well as acute and chronic ART guidebooks). IMAI aims to facilitate the implementation of integrated HIV/AIDS care in resource-poor areas. The opinions of health workers towards this integrated approach to care and the use of IMAI has not been considered in previous research studies. This paper therefore aims to address some of these issues. Methods: Semi-structured interviews were conducted with six key informants and ten nurses in Lesotho. The interviews were transcribed verbatim and analysed using content thematic analysis. Results: Many nurses described palliative care as synonymous with chronic care and felt that palliative care is necessary for HIV-positive patients despite the introduction of ART. It was thought that the approach taken should be holistic and integrated throughout the disease trajectory. Pain management was noted to be a particular area of need for palliative care, and it was suggested that this could be improved in Lesotho. The IMAI guidelines were thought to be useful, but knowledge of the palliative care booklet was limited. Conclusion: Palliative care remains necessary for HIV despite the increasing availability of ART. However, it is currently significantly lacking in Lesotho and many other sub-Saharan African countries. Greater understanding of palliative care amongst health workers is required, as well as strong political will from the Ministry of Health. The IMAI guidelines are a useful tool for holistic HIV care, including palliative care, but they need to be used more effectively. As ART is becoming increasingly available worldwide, the complex chronic care issues for patients with HIV/AIDS should not be neglected. http://www.biomedcentral.com/1472-684X/8/11 Megan Kell John Walley BMC Palliative Care 2009, 8:11 2009-08-15T00:00:00Z doi:10.1186/1472-684X-8-11 BMC Palliative Care 1472-684X 8 11 2009-08-15T00:00:00Z XML Background: Statements on potential measures to improve palliative care in Germany predominantly reflect the points of view of experts from specialized palliative care organizations. By contrast, relatively little is known about the views of representatives of organizations and institutions that do not explicitly specialize in palliative care, but are involved to a relevant extent in the decision-making and policy-making processes. Therefore, for the first time in Germany, we carried out a representative study of the attitudes of a broad range of different stakeholders acting at the national or state level of the health care system. Methods: 442 organizations and institutions were included and grouped as follows: patient organizations, nursing organizations, medical associations, specialized palliative care organizations, political institutions, health insurance funds and others. Using a standardized questionnaire, the participants were asked to rate their agreement with the World Health Organization's definition of palliative care (five-point scale: 1 = completely agree, 5 = completely disagree) and to evaluate 18 pre-selected improvement measures with regard to their general meaningfulness and the feasibility of their introduction into the German health care system (two-point scale: 1 = good, 2 = poor). Results: The response rate was 67%. Overall, the acceptance of the aims of palliative care in the WHO definition was strong. However, the level of agreement among health insurance funds' representatives was significantly less than that among representatives of the palliative care organizations. All the improvement measures selected for evaluation were rated significantly higher in respect of their meaningfulness than of their feasibility in Germany. In detail, the meaningfulness of 16 measures was evaluated positively (70–100% participants chose the answer "good"); for six of these measures feasibility was evaluated negatively (0–30% "good"), while for the remaining ten measures feasibility was evaluated inconsistently (31–69% "good"). Conclusion: The reason why potentially meaningful improvement measures are considered to be not very feasible in Germany may be the existence of barriers resulting from the high degree of fragmentation of health care provision and responsibilities. In overcoming these barriers and further improving palliative care it may be helpful that the basic understanding of the palliative care approach seems to be quite homogenous among the different groups. http://www.biomedcentral.com/1472-684X/8/10 Sara Lueckmann Mareike Behmann Susanne Bisson Nils Schneider BMC Palliative Care 2009, 8:10 2009-07-22T00:00:00Z doi:10.1186/1472-684X-8-10 BMC Palliative Care 1472-684X 8 10 2009-07-22T00:00:00Z XML Background: The Breathlessness Intervention Service is a novel service for patients with intractable breathlessness regardless of aetiology. It is being evaluated using the Medical Research Council's framework for the evaluation of complex interventions. This paper describes the feasibility results of Phase II: a single-blinded fast-track pragmatic randomised controlled trial. Methods: A single-blinded fast-track pragmatic randomised controlled trial was conducted for patients with chronic obstructive pulmonary disease referred to the service. Patients were randomised to either receive the intervention immediately for an eight-week period, or receive the intervention after an eight-week period on a waiting list during which time they received standard care. Outcomes examined included: response rates to the trial; response rates to the individual questionnaires and items; comments relating to the trial functioning made during interviews with patients, carers, referrers and service providers; and, researcher fieldwork notes. Results: 16 of the 20 eligible patients agreed to participate in a recruitment visit (16/20); 14 respondents went on to complete a recruitment visit/baseline interview. The majority of those who completed a recruitment visit/baseline interview completed the RCT protocol (13/14); 12 of their carers were recruited and completed the protocol. An unblinding rate of 6/25 respondents (patients and carers) was identified. Missing data were minimal and only one patient was lost to follow up. The fast-track trial methodology proved feasible and acceptable. Two of the baseline/outcome measures proved unsuitable: the WHO performance scale and the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Conclusion: This study adds to the evidence that fast-track randomised controlled trials are feasible and acceptable in evaluations of palliative care interventions for patients with non-malignant conditions. Reasonable response rates and low attrition rates were achieved. Further, with adequate preparation of the research and randomisation teams, clinicians, and responders, and effective liaison with the clinicians, single-blinding proved possible. Methods were identified to reduce unblinding through careful attention to the type of data collected at unblinded measurement points; the content of interviews should be carefully considered when designing blinded-trial protocols.Trial registrationClinical Trials.gov NCT00711438 http://www.biomedcentral.com/1472-684X/8/9 Morag Farquhar Irene Higginson Petrea Fagan Sara Booth BMC Palliative Care 2009, 8:9 2009-07-07T00:00:00Z doi:10.1186/1472-684X-8-9 BMC Palliative Care 1472-684X 8 9 2009-07-07T00:00:00Z XML Background: Clinical guidance recommends early CHF palliative care intervention, but the magnitude of need is unknown and evidence-based referral criteria absent.This study aimed to: 1) Measure point prevalence of inpatients appropriate for palliative care. 2) Identify patient characteristics associated with palliative care appropriateness. 3) Propose evidence-based clinical referral criteria. Methods: Census: all adult medical inpatient files in a UK tertiary teaching hospital were reviewed, identifying patients with CHF as a reason for current admission, using NYHA stage 3/4 classification, cross referenced with existing ECHO data. Each CHF patient was classified according to appropriateness for palliative care against a definition of unresolved pain and/or symptoms and/or psychosocial problems 7 days post admission. Results: Three hundred and sixty-five patient files were reviewed, and 28 clinically identified as having CHF. Of these, 11 had confirmed unpreserved ejection fraction,16 of the 28 patients were appropriate for palliative care. Of the total inpatient population reviewed, 10 (2.7%) had both confirmed ejection fraction ≤45%, and were appropriate for palliative care. Of the 17 clinically-identified CHF patients with no recorded evidence of ejection fraction ≤45%, 5 (29.4%) were still appropriate for palliative care. A total of 4.4% of the reviewed inpatient population had a clinical diagnosis of CHF and were appropriate for palliative care. Conclusion: CHF patients with ejection fraction >45% also require palliative care. Our conservative criteria suggest a point prevalence of 2.7% of patients having both ejection fraction ≤45% and palliative care needs, although this may be a conservative estimate due to the file review methodology to identify unresolved palliative care problems. It is important to note that the point prevalence of patients with clinical diagnosis and palliative care needs was 4.4% of the population. We present evidence-based referral criteria from the larger multi methods study. http://www.biomedcentral.com/1472-684X/8/8 Richard Harding Teresa Beynon Fiona Hodson Elaine Coady Mark Kinirons Lucy Selman Irene Higginson BMC Palliative Care 2009, 8:8 2009-06-29T00:00:00Z doi:10.1186/1472-684X-8-8 BMC Palliative Care 1472-684X 8 8 2009-06-29T00:00:00Z XML