当前期刊: BMC Palliative Care Go to current issue    加入关注   
显示样式:        排序: 导出
我的关注
我的收藏
您暂时未登录!
登录
  • Correction to: Health-related quality of life and its socio-economic and cultural predictors among advanced cancer patients: evidence from the APPROACH cross-sectional survey in Hyderabad-India
    BMC Palliat. Care (IF 2.922) Pub Date : 

    Correction to: BMC Palliat Care https://doi.org/10.1186/s12904-019-0465-y Following publication of the original article [1], the corresponding author reported an error on the name of the fourth author. “Priya Chandran” should be “Priya Kumari”. 1. Jacob J, Palat G, Verghese N, Kumari P, Rapelli V, Kumari S, Malhotra C, Teo I, Finkelstein E, Ozdemir S. Health-related quality of life and its socio-economic and cultural predictors among advanced cancer patients: evidence from the APPROACH cross-sectional survey in Hyderabad-India. BMC Palliat Care. 2019;18:94. Article Google Scholar Download references Affiliations MNJ Institute of Oncology and Regional Cancer Center (MNJIORCC), Hyderabad, Telangana, India Jean Jacob , Gayatri Palat , Priya Kumari , Vineela Rapelli  & Sanjeeva Kumari Department of Supportive Care, Princess Margaret Cancer Centre, University Health Network, Toronto, Canada Jean Jacob Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore, 169857, Singapore Naina Verghese , Chetna Malhotra , Irene Teo , Eric Finkelstein  & Semra Ozdemir Saw Swee Hock School of Public Health, National University of Singapore, Singapore, Singapore Eric Finkelstein  & Semra OzdemirAuthors Search for Jean Jacob in: PubMed • Google Scholar Search for Gayatri Palat in: PubMed • Google Scholar Search for Naina Verghese in: PubMed • Google Scholar Search for Priya Kumari in: PubMed • Google Scholar Search for Vineela Rapelli in: PubMed • Google Scholar Search for Sanjeeva Kumari in: PubMed • Google Scholar Search for Chetna Malhotra in: PubMed • Google Scholar Search for Irene Teo in: PubMed • Google Scholar Search for Eric Finkelstein in: PubMed • Google Scholar Search for Semra Ozdemir in: PubMed • Google Scholar Corresponding author Correspondence to Semra Ozdemir. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Reprints and Permissions Cite this article Jacob, J., Palat, G., Verghese, N. et al. Correction to: Health-related quality of life and its socio-economic and cultural predictors among advanced cancer patients: evidence from the APPROACH cross-sectional survey in Hyderabad-India. BMC Palliat Care 19, 11 (2020). https://doi.org/10.1186/s12904-020-0519-1 Download citation Published: 23 January 2020 DOI: https://doi.org/10.1186/s12904-020-0519-1

    更新日期:2020-01-23
  • Variation in the implementation of PaTz: a method to improve palliative care in general practice - a prospective observational study
    BMC Palliat. Care (IF 2.922) Pub Date : 2020-01-16
    Ian Koper; H. Roeline W. Pasman; Bart P. M. Schweitzer; Greet van der Zweep; Gon Uyttewaal; Bregje D. Onwuteaka-Philipsen

    PaTz (palliative care at home) is a method to improve palliative care in the primary care setting in the Netherlands. PaTz has three basic principles: (1) local GPs and DNs meet at least six times per year to identify and discuss their patients with a life-threatening illness; (2) these meetings are supervised by a specialist palliative care professional; (3) groups use a palliative care register on which all identified patients are listed. Since the start in 2010, the number of PaTz-groups in the Netherlands has been growing consistently. Although the theory of all PaTz-groups is the same, the practical functioning of PaTz-groups may vary substantially, which may complicate further implementation of PaTz as well as interpretation of effect studies. This study aims to describe the variation in practice of PaTz-groups in the Netherlands. In this prospective observational study, ten PaTz-groups logged and described the activities in their meetings as well as the registered and discussed patients and topics of discussions in registration forms for a 1 year follow-up period. In addition, non-participatory observations were performed in all participating groups. Meeting and patient characteristics were analysed using descriptive statistics. Conventional content analysis was performed in the analysis of topic discussions. While the basic principles of PaTz are found in almost every PaTz-group, there is considerable variation in the practice and content of the meetings of different PaTz-groups. Most groups spend little time on other topics than their patients, although the number of patients discussed in a single meeting varies considerably, as well as the time spent on an individual patient. Most registered patients were diagnosed with cancer and patient discussions mainly concerned current affairs and rarely concerned future issues. The basic principles are the cornerstone of any PaTz-group. At the same time, the observed variation between PaTz-groups indicates that tailoring a PaTz-group to the needs of its participants is important and may enhance its sustainability. The flexibility of PaTz-groups may also provide opportunity to modify the content and tools used, and improve identification of palliative patients and advance care planning.

    更新日期:2020-01-17
  • An EAPC white paper on multi-disciplinary education for spiritual care in palliative care
    BMC Palliat. Care (IF 2.922) Pub Date : 2020-01-15
    Megan Best; Carlo Leget; Andrew Goodhead; Piret Paal

    The EAPC White Paper addresses the issue of spiritual care education for all palliative care professionals. It is to guide health care professionals involved in teaching or training of palliative care and spiritual care; stakeholders, leaders and decision makers responsible for training and education; as well as national and local curricula development groups. Early in 2018, preliminary draft paper was written by members of the European Association for Palliative Care (EAPC) spiritual care reference group inviting comment on the four core elements of spiritual care education as outlined by Gamondi et al. (2013) in their paper on palliative care core competencies. The preliminary draft paper was circulated to experts from the EAPC spiritual care reference group for feedback. At the second stage feedback was incorporated into a second draft paper and experts and representatives of national palliative care organizations were invited to provide feedback and suggest revisions. The final version incorporated the subsequent criticism and as a result, the Gamondi framework was explored and critically revised leading to updated suggestions for spiritual care education in palliative care. The EAPC white paper points out the importance of spiritual care as an integral part of palliative care and suggests incorporating it accordingly into educational activities and training models in palliative care. The revised spiritual care education competencies for all palliative care providers are accompanied by the best practice models and research evidence, at the same time being sensitive towards different development stages of the palliative care services across the European region. Better education can help the healthcare practitioner to avoid being distracted by their own fears, prejudices, and restraints and attend to the patient and his/her family. This EAPC white paper encourages and facilitates high quality, multi-disciplinary, academically and financially accessible spiritual care education to all palliative care staff.

    更新日期:2020-01-15
  • Palliative care for patients with substance use disorder and multiple problems: a qualitative study on experiences of healthcare professionals, volunteers and experts-by-experience
    BMC Palliat. Care (IF 2.922) Pub Date : 2020-01-14
    Anne Ebenau; Boukje Dijkstra; Chantal ter Huurne; Jeroen Hasselaar; Kris Vissers; Marieke Groot

    There is little information about how healthcare professionals feel about providing palliative care for patients with a substance use disorder (SUD). Therefore, this study aims to explore: 1) the problems and needs experienced by healthcare professionals, volunteers and experts-by-experience (HCP/VE) during their work with patients with SUD in a palliative care trajectory and; 2) to make suggestions for improvements using the quality of care model by Donabedian (Structure, Process, Outcome). A qualitative study was conducted, consisting of six focus group interviews which consisted of HCP/VE working with patients with SUD in a palliative care phase. At the end of the focus group interviews, participants structured and summarized their experiences within a Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. Interview transcripts (other than the SWOT) were analysed by the researchers following procedures from the Grounded Theory Approach (‘Grounded Theory Lite’). SWOT-findings were not subjected to in-depth analysis. HCP/VE stated that within the Structure of care, care networks are fragmented and HCP/VE often lack knowledge about patients’ multiplicity of problems and the time to unravel these. Communication with this patient group appears limited. The actual care-giving Process requires HCP/VE a lot of creativity and time spent seeking for cooperation with other caregivers and appropriate care settings. The latter is often hindered by stigma. Since no formalized knowledge is available, care-delivery is often exclusively experience-based. Pain-medication is often ineffective due to active substance use. Finally, several Outcomes were brought forward: Firstly, a palliative care phase is often identified only at a late stage. Secondly, education and a (mobile) team of expertise are desired. Thirdly, care for the caregivers themselves is often de-prioritized. Better integration and collaboration between the different professionals with extensive experience in addiction, palliative and general curative care is imperative to assure good palliative care for patients with SUD. Currently, the resources for this care appear to be insufficient. Development of an educational program and social mapping may be the first steps in improving palliative care for patients with severe SUD.

    更新日期:2020-01-15
  • A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study
    BMC Palliat. Care (IF 2.922) Pub Date : 2020-01-11
    Reidun Hov; Bente Bjørsland; Bente Ødegård Kjøs; Bodil Wilde-Larsson

    As palliative care increasingly takes place in patients’ homes, perceptions of security among patients in the late palliative phase and their relatives are important. To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care. A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients’ Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon’s signed rank test. Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation. There are several statistically significant differences between patients and relatives’ perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients’ spokespersons. What they assess as important can guide the development of palliative homecare.

    更新日期:2020-01-13
  • Are the MORECare guidelines on reporting of attrition in palliative care research populations appropriate? A systematic review and meta-analysis of randomised controlled trials
    BMC Palliat. Care (IF 2.922) Pub Date : 2020-01-09
    Anna Oriani; Lesley Dunleavy; Paul Sharples; Guillermo Perez Algorta; Nancy J. Preston

    Palliative care trials have higher rates of attrition. The MORECare guidance recommends applying classifications of attrition to report attrition to help interpret trial results. The guidance separates attrition into three categories: attrition due to death, illness or at random. The aim of our study is to apply the MORECare classifications on reported attrition rates in trials. A systematic review was conducted and attrition classifications retrospectively applied. Four databases, EMBASE; Medline, CINHAL and PsychINFO, were searched for randomised controlled trials of palliative care populations from 01.01.2010 to 08.10.2016. This systematic review is part of a larger review looking at recruitment to randomised controlled trials in palliative care, from January 1990 to early October 2016. We ran random-effect models with and without moderators and descriptive statistics to calculate rates of missing data. One hundred nineteen trials showed a total attrition of 29% (95% CI 28 to 30%). We applied the MORECare classifications of attrition to the 91 papers that contained sufficient information. The main reason for attrition was attrition due to death with a weighted mean of 31.6% (SD 27.4) of attrition cases. Attrition due to illness was cited as the reason for 17.6% (SD 24.5) of participants. In 50.8% (SD 26.5) of cases, the attrition was at random. We did not observe significant differences in missing data between total attrition in non-cancer patients (26%; 95% CI 18–34%) and cancer patients (24%; 95% CI 20–29%). There was significantly more missing data in outpatients (29%; 95% CI 22–36%) than inpatients (16%; 95% CI 10–23%). We noted increased attrition in trials with longer durations. Reporting the cause of attrition is useful in helping to understand trial results. Prospective reporting using the MORECare classifications should improve our understanding of future trials.

    更新日期:2020-01-11
  • Implementing the theory-based advance care planning ACP+ programme for nursing homes: study protocol for a cluster randomised controlled trial and process evaluation
    BMC Palliat. Care (IF 2.922) Pub Date : 2020-01-08
    Joni Gilissen; Lara Pivodic; Annelien Wendrich-van Dael; Chris Gastmans; Robert Vander Stichele; Yvonne Engels; Myrra Vernooij-Dassen; Luc Deliens; Lieve Van den Block

    Research has highlighted the need for improving the implementation of advance care planning (ACP) in nursing homes. We developed a theory-based multicomponent ACP intervention (the ACP+ programme) aimed at supporting nursing home staff with the implementation of ACP into routine nursing home care. We describe here the protocol of a cluster randomised controlled trial (RCT) that aims to evaluate the effects of ACP+ on nursing home staff and volunteer level outcomes and its underlying processes of change. We will conduct a cluster RCT in Flanders, Belgium. Fourteen eligible nursing homes will be pair-matched and one from each pair will be randomised to either continue care and education as usual or to receive the ACP+ programme (a multicomponent programme which is delivered stepwise over an eight-month period with the help of an external trainer). Primary outcomes are: nursing home care staff’s knowledge of, and self-efficacy regarding ACP. Secondary outcomes are: 1) nursing home care staff’s attitudes towards ACP and ACP practices; 2) support staff’s and volunteer’s ACP practices and 3) support staff’s and volunteers’ self-efficacy. Measurements will be performed at baseline and eight months post-measurement, using structured self-reported questionnaires. A process evaluation will accompany the outcome evaluation in the intervention group, with measurements throughout and post-intervention to assess implementation, mechanisms of impact and context and will be carried out using a mixed-methods design. There is little high-quality evidence regarding the effectiveness and underlying processes of change of ACP in nursing homes. This combined outcome and process evaluation of the ACP+ programme aims to contribute to building the necessary evidence to improve ACP and its uptake for nursing home residents and their family. The study is registered at ClinicalTrials.gov (no. NCT03521206). Registration date: May 10, 2018. Inclusion of nursing homes started March, 2018. Hence, the trial was retrospectively registered but before end of data collection and analyses.

    更新日期:2020-01-08
  • End-of-life decision making by Austrian physicians - a cross-sectional study
    BMC Palliat. Care (IF 2.922) Pub Date : 2020-01-04
    D. Jahn-Kuch; A. Domke; S. Bitsche; H. Stöger; A. Avian; K. Jeitler; N. Posch; A. Siebenhofer

    Austria has recently been embroiled in the complex debate on the legalization of measures to end life prematurely. Empirical data on end-of-life decisions made by Austrian physicians barely exists. This study is the first in Austria aimed at finding out how physicians generally approach and make end-of-life therapy decisions. The European end-of-life decisions (EURELD) questionnaire, translated and adapted by Schildmann et al., was used to conduct this cross-sectional postal survey. Questions on palliative care training, legal issues, and use of and satisfaction with palliative care were added. All Austrian specialists in hematology and oncology, a representative sample of doctors specialized in internal medicine, and a sample of general practitioners, were invited to participate in this anonymous postal survey. Five hundred forty-eight questionnaires (response rate: 10.4%) were evaluated. 88.3% of participants had treated a patient who had died in the previous 12 months. 23% of respondents had an additional qualification in palliative medicine. The cause of death in 53.1% of patients was cancer, and 44.8% died at home. In 86.3% of cases, pain relief and / or symptom relief had been intensified. Further treatment had been withheld by 60.0%, and an existing treatment discontinued by 49.1% of respondents. In 5 cases, the respondents had prescribed, provided or administered a drug which had resulted in death. 51.3% of physicians said they would never carry out physician-assisted suicide (PAS), while 30.3% could imagine doing so under certain conditions. 38.5% of respondents supported the current prohibition of PAS, 23.9% opposed it, and 33.2% were undecided. 52.4% of physicians felt the legal situation with respect to measures to end life prematurely was ambiguous. An additional qualification in palliative medicine had no influence on measures taken, or attitudes towards PAS. The majority of doctors perform symptom control in terminally ill patients. PAS is frequently requested but rarely carried out. Attending physicians felt the legal situation was ambiguous. Physicians should therefore receive training in current legislation relating to end-of-life choices and medical decisions. The data collected in this survey will help political decision-makers provide the necessary legal framework for end-of-life medical care.

    更新日期:2020-01-04
  • A rapid positive influence of S-ketamine on the anxiety of patients in palliative care: a retrospective pilot study
    BMC Palliat. Care (IF 2.922) Pub Date : 2020-01-03
    Eduard Falk; Daniel Schlieper; Patrick van Caster; Matthias J. Lutterbeck; Jacqueline Schwartz; Joachim Cordes; Ina Grau; Peter Kienbaum; Martin Neukirchen

    Patients in palliative care need rapid-acting pharmacological options for psychological distress. N-methyl-D-aspartate antagonist ketamine is known to have a fast onset of anti-depressant and anxiolytic action. Its S-enantiomer S-ketamine (or esketamine) is an analgesic used as a routine treatment for refractory pain as an intravenous infusion (0.25 mg/kg over 45 min). This study investigates whether S-ketamine pain therapy has a positive impact on psychological distress caused by anxiety and depression in palliative care. Patient routine data from a palliative care unit of a tertiary care hospital were used in a retrospective analysis after positive ethics approval. Eight patients, who received analgesic S-ketamine treatment, were compared to a control group matched by gender and age. The main analysis was conducted using three-way mixed MANOVA followed by two-way mixed ANOVA. Target variables were the values for anxiety and depression in the state-trait anxiety-depression inventory STADI. The predictor variables were the time of measurement before (T1) and after (T2) S-ketamine application and group membership. Comparison of the S-ketamine group (n = 8; 4 male, 4 female; average age 52 years) with the control group (n = 8; 3 male, 5 female; average age 55 years) revealed a significant multivariate effect on anxiety and depression F(1, 14) = 4.78; p = 0.046; r = 0.50. The univariate comparisons showed a significant reduction of the anxiety scores from T1 to T2 in the S-ketamine group compared to the control group F(1, 14) = 10.14; p = 0.007; r = 0.65. With regard to depression, there was no significant reduction from T1 to T2 in the group comparison F(1, 14) = 1.60; p = 0.23; r = 0.32. No long-lasting effects on pain were found. Our findings show that psychological distress of patients in palliative care may improve after a single administration of S-ketamine, which mainly alleviates anxiety in those patients. Limitations of this study arise from non-randomization, retrospective analysis and low sample size. Therefore, further prospective and ideally randomized studies are necessary.

    更新日期:2020-01-04
  • Nursing home staff’s perspective on end-of-life care of German nursing home residents: a cross-sectional survey
    BMC Palliat. Care (IF 2.922) Pub Date : 2020-01-03
    Anke Strautmann; Katharina Allers; Alexander Maximilian Fassmer; Falk Hoffmann

    Nursing homes are becoming more important for end-of-life care. Within the industrialised world, Germany is among the countries with the most end-of-life hospitalizations in nursing home residents. To improve end-of-life care, investigation in the status quo is required. The objective was to gain a better understanding of the perspectives of nursing home staff on the current situation of end-of-life care in Germany. A cross-sectional study was conducted as a postal survey among a random sample of 1069 German nursing homes in 2019. The survey was primarily addressed to nursing staff management. Data was analyzed using descriptive statistics. Staff was asked to rate different items regarding common practices and potential deficits of end-of-life care on a 5-point-Likert-scale. Estimations of the proportions of in-hospital deaths, residents with advance directives (AD), cases in which documented ADs were ignored, and most important measures for improvement of end-of-life care were requested. 486 (45.5%) questionnaires were returned, mostly by nursing staff managers (64.7%) and nursing home directors (29.9%). 64.4% of the respondents rated end-of-life care rather good, the remainder rated it as rather bad. The prevalence of in-hospital death was estimated by the respondents at 31.5% (SD: 19.9). Approximately a third suggested that residents receive hospital treatments too frequently. Respondents estimated that 45.9% (SD: 21.6) of the residents held ADs and that 28.4% (SD: 26.8) of available ADs are not being considered. Increased staffing, better qualification, closer involvement of general practitioners and better availability of palliative care concepts were the most important measures for improvement. Together with higher staffing, better availability and integration of palliative care concepts may well improve end-of-life care. Prerequisite for stronger ties between nursing home and palliative care is high-quality education of those involved in end-of-life care.

    更新日期:2020-01-04
  • Oxygen use and survival in patients with advanced cancer and low oxygen saturation in home care: a preliminary retrospective cohort study
    BMC Palliat. Care (IF 2.922) Pub Date : 2020-01-03
    Hiroshi Igarashi; Motoharu Fukushi; Naoki Nago

    The role of oxygen therapy in end-of-life care for patients with advanced cancer is incompletely understood. We aimed to evaluate the association between oxygen use and survival in patients with advanced cancer and low oxygen saturation in home care. We conducted a retrospective cohort study at a primary care practice in suburban Tokyo. Adult patients in home care with advanced cancer demonstrating first low oxygen saturation (less than 90%) detected in home visits were consecutively included in the study. Cox proportional hazards regression was used to investigate the effect of oxygen use on overall survival and survival at home, adjusted for systolic blood pressure, decreased level of consciousness, dyspnea, oral intake, performance status, and cardiopulmonary comorbidity. Of 433 identified patients with advanced cancer, we enrolled 137 patients (oxygen use, n = 35; no oxygen use, n = 102) who developed low oxygen saturation. In multivariable analysis, the adjusted hazard ratio (HR) of oxygen use was 0.68 (95% confidence interval 0.39–1.17) for death and 0.70 (0.38–1.27) for death at home. In patients with dyspnea, the HR was 0.35 (0.13–0.89) for death and 0.33 (0.11–0.96) for death at home; without dyspnea, it was 1.03 (0.49–2.17) for death and 0.84 (0.36–1.96) for death at home. Oxygen use was not significantly associated with survival in patients with advanced cancer and low oxygen saturation, after adjusting for potential confounders. It may not be necessary to use oxygen for prolongation of survival in such patients, particularly in those without dyspnea.

    更新日期:2020-01-04
  • The last week of life of nursing home residents with advanced dementia: a retrospective study
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-27
    Franco Toscani; Silvia Finetti; Fabrizio Giunco; Ines Basso; Debora Rosa; Francesca Pettenati; Alessandro Bussotti; Daniele Villani; Simona Gentile; Lorenzo Boncinelli; Massimo Monti; Sandro Spinsanti; Massimo Piazza; Lorena Charrier; Paola Di Giulio

    Barriers to palliative care still exist in long-term care settings for older people, which can mean that people with advanced dementia may not receive of adequate palliative care in the last days of their life; instead, they may be exposed to aggressive and/or inappropriate treatments. The aim of this multicentre study was to assess the clinical interventions and care at end of life in a cohort of nursing home (NH) residents with advanced dementia in a large Italian region. This retrospective study included a convenience sample of 29 NHs in the Lombardy Region. Data were collected from the clinical records of 482 residents with advanced dementia, who had resided in the NH for at least 6 months before death, mainly focusing on the 7 days before death. Most residents (97.1%) died in the NH. In the 7 days before death, 20% were fed and hydrated by mouth, and 13.4% were tube fed. A median of five, often inappropriate, drugs were prescribed. Fifty-seven percent of residents had an acknowledgement of worsening condition recorded in their clinical records, a median of 4 days before death. Full implementation of palliative care was not achieved in our study, possibly due to insufficient acknowledgement of the appropriateness of some drugs and interventions, and health professionals’ lack of implementation of palliative interventions. Future studies should focus on how to improve care for NH residents.

    更新日期:2019-12-30
  • Screening with the double surprise question to predict deterioration and death: an explorative study
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-27
    C. M. M. Veldhoven; N. Nutma; W. De Graaf; H. Schers; C. A. H. H. V. M. Verhagen; K. C. P. Vissers; Y. Engels

    Early identification of palliative patients is challenging. The Surprise Question (SQ1; Would I be surprised if this patient were to die within 12 months?) is widely used to identify palliative patients. However, its predictive value is low. Therefore, we added a second question (SQ2) to SQ1: ‘Would I be surprised if this patient is still alive after 12 months?’ We studied the accuracy of this double surprise question (DSQ) in a general practice. We performed a prospective cohort study with retrospective medical record review in a general practice in the eastern part of the Netherlands. Two general practitioners (GPs) answered both questions for all 292 patients aged ≥75 years (mean age 84 years). Primary outcome was 1-year death, secondary outcomes were aspects of palliative care. SQ1 was answered with ‘no‘ for 161/292 patients. Of these, SQ2 was answered with ‘yes’ in 22 patients. Within 12 months 26 patients died, of whom 24 had been identified with SQ1 (sensitivity: 92%, specificity: 49%). Ten of them were also identified with SQ2 (sensitivity: 42%, specificity: 91%). The latter group had more contacts with their GP and more palliative care aspects were discussed. The DSQ appears a feasible and easy applicable screening tool in general practice. It is highly effective in predicting patients in high need for palliative care and using it helps to discriminate between patients with different life expectancies and palliative care needs. Further research is necessary to confirm the findings of this study.

    更新日期:2019-12-30
  • Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-29
    Ubolrat Piamjariyakul; Trisha Petitte; Angel Smothers; Sijin Wen; Elizabeth Morrissey; Stephanie Young; George Sokos; Alvin H. Moss; Carol E. Smith

    Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home. This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state. The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process. ClinicalTrials.gov NCT04153890, Registered on 4 November 2019

    更新日期:2019-12-30
  • Palliative home parenteral nutrition in patients with ovarian cancer and malignant bowel obstruction: experiences of women and family caregivers
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-29
    Anne Marie Sowerbutts; Simon Lal; Jana Sremanakova; Andrew R. Clamp; Gordon C. Jayson; Antje Teubner; Lisa Hardy; Chris Todd; Anne-Marie Raftery; Eileen Sutton; Robert D. Morgan; Alexander J. Vickers; Sorrel Burden

    Malnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients’ and family caregivers’ experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO. This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n = 57) were carried out with 20 women considered for HPN and 13 of their family caregivers. Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8–506) and for those 17 on HPN was 156 days (range 46–506). Women experienced HPN as one facet of their illness, but viewed it as a “lifeline” that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state. Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.

    更新日期:2019-12-30
  • A conceptual model of barriers and facilitators to primary clinical teams requesting pediatric palliative care consultation based upon a narrative review
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-21
    Jennifer K. Walter; Douglas L. Hill; Concetta DiDomenico; Shefali Parikh; Chris Feudtner

    Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents. Building on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral. Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition “clinician regoaling”. Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians’ willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility. Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.

    更新日期:2019-12-21
  • Telehealth in palliative care is being described but not evaluated: a systematic review
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-13
    Sophie Hancock; Nancy Preston; Helen Jones; Amy Gadoud

    Telehealth is growing and its application in palliative care is seen as a solution to pressures on palliative care services. A 2010 UK review reported growing awareness of telehealth in palliative care but a lack of evidence-based research to support its use. The primary aim of this review was to describe the current use of telehealth in palliative care in the UK and evaluate telehealth initiatives against a digital service standard. The secondary aim was to explore whether telehealth results in a reduction in emergency care access. Systematic review of the literature with thematic synthesis. Records were screened and data extracted by two reviewers. EMBASE, MEDLINE, CINAHL, Psychinfo and Cochrane central register for controlled trials were searched using pre-defined terms. Hand searching of conference literature, thesis databases and citation tracking was also conducted. The protocol for this systematic review was registered with PROSPERO and can be found at http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42017080038. The search identified 3807 titles and 30 studies were included in the review. Telehealth was used to support patients and carers, electronic record keeping and professional education. Notably, the number of home telemonitoring initiatives for patients had increased from the 2010 review. Despite this variety, many studies were small scale, descriptive and provided little evidence of evaluation of the service. Ten papers were sufficiently detailed to allow appraisal against the digital service standard and only one of these met all of the criteria to some extent. Seven studies made reference to emergency care access. Although there is growth of telehealth services, there remains a lack of evaluation and robust study design meaning conclusions regarding the clinical application of telehealth in palliative care cannot be drawn. There is insufficient evidence to appreciate any benefit of telehealth on access to emergency care. Future work is needed to evaluate the use of telehealth in palliative care and improve telehealth design in line with digital service standards.

    更新日期:2019-12-17
  • An examination of home-based end-of-life care for cancer patients: a qualitative study
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-16
    Xiao Bin Lai; Li Qun Chen; Shu Hui Chen; Hai Ou Xia

    Only a small number of patients have utilized the home-based end-of-life care service in Shanghai that has been offered since 2012. This study explores how home-based end-of-life care is delivered in community health service centers in Shanghai and examines the difficulties in the delivery of the care. This was a qualitative study in which data were collected from interviews and analyzed using qualitative content analysis. Nineteen health care providers with experience in delivering home-based end-of-life care in 12 community health service centers were recruited. The interviews were conducted between August 2018 and February 2019. Four themes emerged from the interviews: (i) Patients under home-based end-of-life care: Patients receiving the care were cancer patients with less than 1 year of life expectancy. The criteria for patients were broad. (ii) Service structure: The service was delivered regularly by the physicians and nurses using the approaches of home visits and/or telephone follow-ups. (iii) Service process: The service consisted of multiple components, including monitoring the patient’s condition, managing the patient’s symptoms, giving daily care instructions, performing nursing procedures, and giving psychological support. However, most of the care focused on monitoring the patients and managing their physical discomfort. (iv) Difficulties in delivering care: Being unable to provide the service and feeling powerless when facing psycho-spiritual problems were the two major difficulties. Three factors contributed to the suspension of the service: The gap between the service and the needs of the patients, a lack of patients, and low work motivation. The demand that the truth be concealed from the families and their attitude of avoiding talking about death were the key factors of the failure of psycho-spiritual care. Several issues should be addressed before the service can be further developed, including fully understanding the needs and preferences of local patients and their families, securing more financial support and a better supply of drugs, delivering better training for staff, and ensuring greater rewards for individuals and institutions providing the service.

    更新日期:2019-12-17
  • The impact of population ageing on end-of-life care in Scotland: projections of place of death and recommendations for future service provision
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-12
    Anne M. Finucane; Anna E. Bone; Catherine J. Evans; Barbara Gomes; Richard Meade; Irene J. Higginson; Scott A. Murray

    Global annual deaths are rising. It is essential to examine where future deaths may occur to facilitate decisions regarding future service provision and resource allocation. To project where people will die from 2017 to 2040 in an ageing country with advanced integrated palliative care, and to prioritise recommendations based on these trends. Population-based trend analysis of place of death for people that died in Scotland (2004–2016) and projections using simple linear modelling (2017–2040); Transparent Expert Consultation to prioritise recommendations in response to projections. Deaths are projected to increase by 15.9% from 56,728 in 2016 (32.8% aged 85+ years) to 65,757 deaths in 2040 (45% aged 85+ years). Between 2004 and 2016, proportions of home and care home deaths increased (19.8–23.4% and 14.5–18.8%), while the proportion of hospital deaths declined (58.0–50.1%). If current trends continue, the numbers of deaths at home and in care homes will increase, and two-thirds will die outside hospital by 2040. To sustain current trends, priorities include: 1) to increase and upskill a community health and social care workforce through education, training and valuing of care work; 2) to build community care capacity through informal carer support and community engagement; 3) to stimulate a realistic public debate on death, dying and sustainable funding. To sustain current trends, health and social care provision in the community needs to grow to support nearly 60% more people at the end-of-life by 2040; otherwise hospital deaths will increase.

    更新日期:2019-12-13
  • “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-12
    Jennifer Im; Susanna Mak; Ross Upshur; Leah Steinberg; Kerry Kuluski

    Effective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers. In a qualitative study of older adults with heart failure and their family caregivers, fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. The interviews were transcribed verbatim and thematic analysis was applied to analyze the data. Four themes were identified in the context of participants’ understanding of illness: 1) trivializing illness-related challenges, 2) positivity in late life, 3) discomfort in having end-of-life conversations, and 4) reluctant to engage despite need. These challenges often intertwine with one another. Most participants had not engaged in end-of-life discussions with their clinicians or family members. The findings provide insights that can inform approaches to integrate end-of-life communication for older adults with serious illness and caregivers. The identified challenges highlight a need for end-of-life communication to occur earlier in illness to be able to support individuals throughout the period of decline. In addition, end-of-life communication should be introduced iteratively for those who may not be ready to engage. Alternative approaches to communication are needed to elicit the challenges that patients and caregivers experience throughout the progression of illness to improve care for people nearing the end of life.

    更新日期:2019-12-13
  • The Fami-life study: protocol of a prospective observational multicenter mixed study of psychological consequences of grieving relatives in French palliative care units on behalf of the family research in palliative care (F.R.I.P.C research network)
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-09
    Maité Garrouste-Orgeas; Cécile Flahault; Edith Poulain; Adrien Evin; Frédéric Guirimand; Virginie Fossez-Diaz; Ségolène Perruchio; Catherine Verlaine; Anne Vanbésien; Willeme Kaczmarek; Laurence Birkui de Francqueville; Emmanuel De Larivière; Guillaume Bouquet; Laure Copel; Virginie Verliac; Véronique Marché; Carmen Mathias; Dominique Gracia; Alaa Mhalla; Véronique Michonneau-Gandon; Cécile Poupardin; Licia Touzet; Gaelle Ranchou; Virginie Guastella; Bruno Richard; Florent Bienfait; Marie Sonrier; Dominique Michel; Stéphane Ruckly; Sébastien Bailly; Jean-François Timsit

    Grieving relatives can suffer from numerous consequences like anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and prolonged grief. This study aims to assess the psychological consequences of grieving relatives after patients’ death in French palliative care units and their needs for support. This is a prospective observational multicenter mixed study. Relatives of adult patients with a neoplasia expected to be hospitalized more than 72 h in a palliative care unit for end-of-life issues will be included within 48 h after patient admission. End-of-life issues are defined by the physician at patient admission. Relatives who are not able to have a phone call at 6-months are excluded. The primary outcome is the incidence of prolonged grief reaction defined by an ICG (Inventory Complicate Grief) > 25 (0 best-76 worst) at 6 months after patient’ death. Prespecified secondary outcomes are the risk factors of prolonged grief, anxiety and depression symptoms between day 3 and day 5 and at 6 months after patients’ death based on an Hospital Anxiety and Depression score (range 0–42) > 8 for each subscale (minimal clinically important difference: 2.5), post-traumatic stress disorder symptoms 6 months after patient’ death based on the Impact of Events Scale questionnaire (0 best-88 worst) score > 22, experience of relatives during palliative care based on the Fami-Life questionnaire, specifically built for the study. Between 6 and 12 months after the patient’s death, a phone interview with relatives with prolonged grief reactions will be planned by a psychologist to understand the complex system of grief. It will be analyzed with the Interpretative Phenomenological Analysis. We planned to enroll 500 patients and their close relatives assuming a 25% prolonged grief rate and a 6-month follow-up available in 60% of relatives. This study will be the first to report the psychological consequences of French relatives after a loss of a loved one in palliative care units. Evaluating relatives’ experiences can provide instrumental insights for means of improving support for relatives and evaluation of bereavement programs. NCT03748225 registered on 11/19/2018. Recruiting patients.

    更新日期:2019-12-11
  • Oral medicinal cannabinoids to relieve symptom burden in the palliative care of patients with advanced cancer: a double-blind, placebo controlled, randomised clinical trial of efficacy and safety of cannabidiol (CBD)
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-06
    Phillip Good; Alison Haywood; Gauri Gogna; Jennifer Martin; Patsy Yates; Ristan Greer; Janet Hardy

    Despite improvements in medical care, patients with advanced cancer still experience substantial symptom distress. There is increasing interest in the use of medicinal cannabinoids, but there is little high quality evidence to guide clinicians. This study aims to define the role of cannabidiol (CBD) in the management of symptom burden in patients with advanced cancer undergoing standard palliative care. This study is a multicentre, randomised, placebo controlled, two arm, parallel trial of escalating doses of oral CBD. It will compare efficacy and safety outcomes of a titrated dose of CBD (100 mg/mL formulation, dose range 50 mg to 600 mg per day) against placebo. There is a 2-week patient determined titration phase, using escalating doses of CBD or placebo to reach a dose that achieves symptom relief with tolerable side effects. This is then followed by a further 2-week assessment period on the stable dose determined in collaboration with clinicians. A major strength of this study is that it will target symptom burden as a whole, rather than just individual symptoms, in an attempt to describe the general improvement in wellbeing previously reported by some patients in open label, non controlled trials of medicinal cannabis. Randomisation with placebo is essential because of the well-documented over reporting of benefit in uncontrolled trials and high placebo response rates in cancer pain trials. This will be the first placebo controlled clinical trial to evaluate rigorously the efficacy, safety and acceptability of CBD for symptom relief in advanced cancer patients. This study will provide the medical community with evidence to present to patients wishing to access medicinal cannabis for their cancer related symptoms. ALCTRN12618001220257 Registered 20/07/2018.

    更新日期:2019-12-07
  • Paramedic information needs in end-of-life care: a qualitative interview study exploring access to a shared electronic record as a potential solution
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-05
    Rebecca Patterson; Holly Standing; Mark Lee; Sonia Dalkin; Monique Lhussier; Catherine Exley; Katie Brittain

    Limited access to, understanding of, and trust in paper-based patient information is a key factor influencing paramedic decisions to transfer patients nearing end-of-life to hospital. Practical solutions to this problem are rarely examined in research. This paper explores the extent to which access to, and quality of, patient information affects the care paramedics provide to patients nearing end-of-life, and their views on a shared electronic record as a means of accessing up-to-date patient information. Semi-structured interviews with paramedics (n = 10) based in the north of England, drawn from a group of health and social care professionals (n = 61) participating in a study exploring data recording and sharing practices in end-of-life care. Data were analysed using thematic analysis. Two key themes were identified regarding paramedic views of patient information: 1) access to information on patients nearing end-of-life, and 2) views on the proposed EPaCCS. Paramedics reported they are typically unable to access up-to-date patient information, particularly advance care planning documents, and consequently often feel they have little option but to actively treat and transport patients to hospital – a decision not always appropriate for, or desired by, the patient. While paramedics acknowledged a shared electronic record (such as EPaCCs) could support them to provide community-based care where desired and appropriate, numerous practical and technical issues must be overcome to ensure the successful implementation of such a record. Access to up-to-date patient information is a barrier to paramedics delivering appropriate end-of-life care. Current approaches to information recording are often inconsistent, inaccurate, and inaccessible to paramedics. Whilst a shared electronic record may provide paramedics with greater and timelier access to patient information, meaning they are better able to facilitate community-based care, this is only one of a series of improvements required to enable this to become routine practice.

    更新日期:2019-12-06
  • Continuous low flow ascites drainage through the urinary bladder via the Alfapump system in palliative patients with malignant ascites
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-12-05
    Christina Fotopoulou; Thomas Berg; Annekristin Hausen; René Hennig; Rajiv Jalan; Massimo Malagó; Jeroen Capel; Andrea De Gottardi; Guido Stirnimann

    Malignant Ascites (MA) is a therapeutic dilemma significantly impairing patients’ quality of life (QoL). The Sequana Medical alfapump System (AP), a subcutaneous, externally rechargeable, implantable device, continually draining ascites via the urinary bladder, has been well established in liver cirrhosis, but not yet in MA. The AP-system was evaluated in cancer patients in reducing the need for large volume paracentesis (LVP). A retrospective multicentre evaluation of all eligible patients who received an AP for MA-palliation was performed. AP was evaluated for its ability to reduce LVP and cross-correlated with adverse events (AE), survival and retrospective physician-reported QoL. Seventeen patients with median age of 63 years (range: 18–81), 70.6% female, across 7 primary tumour types were analysed. Median duration of AP-implantation was 60 min (range: 30–270) and median post-implantation hospital stay: 4 days (range: 2–24). Twelve protocol-defined AE occurred in 5 patients (29.4%): 4 kidney failures, 4 pump/catheter-related blockages, 3 infections/peritonitis and 1 wound dehiscence. Median ascitic volume (AV) pumped daily was 303.6 ml/day (range:5.6–989.3) and median total AV drained was 28 L (range: 1–638.6). Median patient post-AP-survival was 111 days (range:10–715) and median pump survival was 89 days (range: 0–715). Median number of paracenteses was 4 (range: 1–15) per patient pre-implant versus 1 (range: 0–1) post-implant (p = 0.005). 71% of patients were reported to have an improvement of at least one physician reported QoL-parameters. AP appears to be effective in palliating patients with MA by an acceptable morbidity profile. Its broader implementation in oncology services should be further explored. NCT03200106; June 27, 2017.

    更新日期:2019-12-06
  • Realizing better doctor-patient dialogue about choices in palliative care and early phase clinical trial participation: towards an online value clarification tool (OnVaCT)
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-11-29
    Liza G. G. van Lent; Nicole K. Stoel; Julia C. M. van Weert; Jelle van Gurp; Maja J. A. de Jonge; Martijn P. Lolkema; Eelke H. Gort; Saskia M. Pulleman; Esther Oomen-de Hoop; Jeroen Hasselaar; Carin C. D. van der Rijt

    Patients with advanced cancer for whom standard systemic treatment is no longer available may be offered participation in early phase clinical trials. In the decision making process, both medical-technical information and patient values and preferences are important. Since patients report decisional conflict after deciding on participation in these trials, improving the decision making process is essential. We aim to develop and evaluate an Online Value Clarification Tool (OnVaCT) to assist patients in clarifying their values around this end-of-life decision. This improved sharing of values is hypothesized to support medical oncologists in tailoring their information to individual patients’ needs and, consequently, to support patients in taking decisions in line with their values and reduce decisional conflict. In the first part, patients’ values and preferences and medical oncologists’ views hereupon will be explored in interviews and focus groups to build a first prototype OnVaCT using digital communication (serious gaming). Next, we will test feasibility during think aloud sessions, to deliver a ready-to-implement OnVaCT. In the second part, the OnVaCT, with accompanied training module, will be evaluated in a pre-test (12–18 months before implementation) post-test (12–18 months after implementation) study in three major Dutch cancer centres. We will include 276 patients (> 18 years) with advanced cancer for whom standard systemic therapy is no longer available, and who are referred for participation in early phase clinical trials. The first consultation will be recorded to analyse patient-physician communication regarding the discussion of patients’ values and the decision making process. Three weeks afterwards, decisional conflict will be measured. This project aims to support the discussion of patient values when considering participation in early phase clinical trials. By including patients before their first appointment with the medical oncologist and recording that consultation, we are able to link decisional conflict to the decision making process, e.g. the communication during consultation. The study faces challenges such as timely including patients within the short period between referral and first consultation. Furthermore, with new treatments being developed rapidly, molecular stratification may affect the patient populations included in the pre-test and post-test periods. Netherlands Trial Registry number: NTR7551 (prospective; July 17, 2018).

    更新日期:2019-11-30
  • Pharmacists’ knowledge, attitude and involvement in palliative care in selected tertiary hospitals in southwestern Nigeria
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-11-29
    Rasaq ADISA; Aderonke Tolulope ANIFOWOSE

    The growing number of people living with life-limiting illness is a global health concern. This study therefore aimed to explore the involvement of pharmacists in selected tertiary hospitals in Nigeria in palliative care (PC). It also sought to evaluate their knowledge and attitude to PC as well as factors that hinder pharmacists’ participation in PC. Questionnaire-guided survey among pharmacists working in three-tertiary hospitals in southwestern Nigeria. The self-administered questionnaire comprised 18-item general knowledge questions related to PC, attitude statements with 5-point Likert-scale options and question-items that clarify extent of involvement in PC and barriers to participation. Overall score by pharmacists in the knowledge and attitude domains developed for the purpose of this study was assigned into binary categories of “adequate” and “inadequate” knowledge (score > 75% versus≤75%), as well as “positive” and “negative” attitude (ranked score > 75% versus≤75%), respectively. Descriptive statistics, Mann-Whitney-U and Kruskal-Wallis tests were used for analysis at p < 0.05. All the 110 pharmacists enrolled responded to the questionnaire, given a response rate of 100%. Overall, our study showed that 23(21.1%) had adequate general knowledge in PC, while 14(12.8%) demonstrated positive attitude, with 45(41.3%) who enjoyed working in PC. Counselling on therapy adherence (100;90.9%) was the most frequently engaged activity by pharmacists; attending clinical meetings to advise health team members (45;40.9%) and giving educational sessions (47;42.7%) were largely cited as occasionally performed duties, while patient home visit was mostly cited (60;54.5%) as a duty not done at all. Pharmacists’ unawareness of their need in PC (86;79.6%) was a major factor hindering participation, while pharmacists with PC training significantly felt more relaxed around people receiving PC compared to those without training (p = 0.003). Hospital pharmacists in selected tertiary care institutions demonstrate inadequate knowledge, as well as negative attitude towards PC. Also, extent of involvement in core PC service is generally low, with pharmacists’ unawareness of their need in PC constituting a major barrier. Thus, a need for inclusion of PC concept into pharmacy education curriculum, while mandatory professional development programme for pharmacists should also incorporate aspects detailing fundamental principles of PC, in order to bridge the knowledge and practice gaps.

    更新日期:2019-11-30
  • Context, mechanisms and outcomes in end-of-life care for people with advanced dementia: family carers perspective
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-10-24
    Nuriye Kupeli; Elizabeth L. Sampson; Gerard Leavey; Jane Harrington; Sarah Davis; Bridget Candy; Michael King; Irwin Nazareth; Louise Jones; Kirsten Moore

    Keeping people living with advanced dementia in their usual place of residence is becoming a key governmental goal but to achieve this, family carers and health care professionals must negotiate how to provide optimal care. Previously, we reported a realist analysis of the health care professional perspective. Here, we report on family carer perspectives. We aimed to understand the similarities and differences between the two perspectives, gain insights into how the interdependent roles of family carers and HCPs can be optimised, and make recommendations for policy and practice. Qualitative study using a realist approach in which we used the criteria from guidance on optimal palliative care in advanced dementia to examine key contexts, mechanisms and outcomes highlighted by family carers. The themes and views of family caregivers resonate with those of health care professionals. Their overlapping anxieties related to business-driven care homes, uncertainty of families when making EOL decisions and the importance of symptom management referring to contexts, mechanisms and outcomes, respectively. Contexts specific to family carers were ad hoc information about services, dementia progression and access to funding. Not all family carers identified dementia as terminal, but many recognised the importance of continuity of care and knowing the wishes of the person with dementia. New mechanisms included specific resources for improving EOL care and barriers to discussing and planning for future care. Family carers identified the importance of comfort, being present, the meeting of basic care needs and feeling the right decisions have been made as good outcomes of care. Family carers and health care professionals share similar concerns about the challenges to good EOL dementia care. Better understanding of the effects of dementia at the advanced stages would improve confidence in EOL care and reduce uncertainty in decision making for family carers and health care professionals.

    更新日期:2019-11-29
  • What motivates informal caregivers of people with dementia (PWD): a qualitative study
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-11-28
    Shakiba Zahed; Maryam Emami; Shahrzad Bazargan-Hejazi; Ahmad Ali Eslami; Majid Barekatain; Fereshteh Zamani-Alavijeh

    The burden of caring for People with Dementia (PWD) is heavy; identifying incentives that motivate them in providing care is essential in facilitating and optimizing care. This study aims to explore and describe these motivating factors. We conducted this qualitative study between January 2016 and January 2017 in Isfahan, Iran. Data were extracted through in-depth, semi-structured interviews with 19 caregivers of PWD. These data were then examined through thematic content analysis. We identified four categories of psychological motives based on the caregivers’ feedback and experience. These include 1) Moral-based motives, 2) Religious, and spiritual motives; 3) Financial motives, and 4) Wicked motives. Our results revealed several aspects of caregivers’ motives. They include moral, religious, and spiritual aspects; sharing housing accommodations, and the likelihood of inheriting a portion of the patient’s assets based on unspoken rules and informal arrangements in the family, and wicked and immoral aspects. These findings can inform future efforts in enhancing the experiences of caregivers of PWD, and subsequently, the quality of care these patients receive. It further suggests that family members, members of a religious and spiritual organization, as well as social media, could play important roles in setting the stage.

    更新日期:2019-11-29
  • The conceptual understanding of pediatric palliative care: a Swiss healthcare perspective
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-07-11
    Eva De Clercq; Michael Rost; Milenko Rakic; Marc Ansari; Pierluigi Brazzola; Tenzin Wangmo; Bernice S. Elger

    Health care providers’ perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care. Five mixed focus groups were conducted with 29 health care providers (oncologists, nurses, psychologists, and social workers) at five Swiss pediatric oncology group centers. The focus group interviews were analyzed using thematic coding. Most participants associated pediatric palliative care with non-curative treatment. They regularly reported difficulties in addressing palliative care services to families due to the strong stigma surrounding this term. They also thought that the notion of palliative care is very much linked to a policy context, and difficult to reconcile with children’s everyday life. To overcome these obstacles many participants used synonyms such as comfort or supportive care. A few providers insisted on the need of using palliative care and reported the importance of positive “word of mouth”. The use of synonyms might be a pragmatic approach to overcome initial barriers to the implementation of palliative care in pediatrics. However, this tactic might ultimately prove to be ineffective as these terms might acquire the same negative connotations as palliative care. Positive word-of-mouth by satisfied families and healthcare providers might be a more sustainable way to advocate for pediatric palliative care than replacing it with a euphemistic term.

    更新日期:2019-11-28
  • Palliative care for people with substance use disorder and multiple problems: a qualitative study on experiences of patients and proxies
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-07-12
    Anne Ebenau; Boukje Dijkstra; Chantal ter Huurne; Jeroen Hasselaar; Kris Vissers; Marieke Groot

    Systematic research into palliative care (PC) for people with substance use disorder (SUD) and multiple problems is scarce. The existing literature shows problems in the organizational structure of this care, e.g., lack of clear care pathways. Furthermore, negative attitudes of healthcare professionals (HCPs) and stigmatization surrounding SUD, and patients’ care-avoidance and non-disclosure of substance use are hindering factors in providing timely and person-centered PC. Furthermore, the experiences and needs of patients and proxies themselves are unknown. Therefore, this study aims to explore which problems and needs patients with SUD and multiple problems, and their proxies, experience in a PC phase. Data-collection of this qualitative study consisted of semi-structured interviews with patients with SUD and multiple problems in a PC phase, and their proxies, about their experiences in PC and their well-being. Interviews were inductively analyzed. Nine patients and three proxies were included. Six patients suffered from COPD, one patient from cirrhosis of the liver and two patients from both. Seven patients stayed in a nursing home and two had a room in either a social care service (hostel) or an assisted living home where medical care was provided. Five themes were identified: 1) healthcare delivery (including HCPs behaviour and values); 2) end-of-life (EOL) preferences (mostly concerning only the individual patient and the ‘here-and-the-now’); 3) multidimensional problems; 4) coping (active and passive) and; 5) closed communication. Proxies’ experiences with healthcare differed. Emotionally, they were all burdened by their histories with the patients. This study shows that talking about and anticipating on PC with this patient-group appears hard due to patients’ closed and avoiding communication. Furthermore, some of patients’ EOL-preferences and needs, and coping-strategies, seem to differ from the more generally-accepted ideas and practices. Therefore, educating HCPs in communicating with this patient-group, is needed.

    更新日期:2019-11-28
  • Examining constipation assessment and management of patients with advanced cancer receiving specialist palliative care: a multi-site retrospective case note review of clinical practice
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-07-15
    Sonja McIlfatrick; Deborah H. L. Muldrew; Esther Beck; Emma Carduff; Mike Clarke; Anne Finucane; Lisa Graham-Wisener; Phil Larkin; Noleen K. McCorry; Paul Slater; Felicity Hasson

    Constipation is a common symptom for patients receiving palliative care. Whilst international clinical guidelines are available on the clinical management of constipation for people with advanced cancer receiving specialist palliative care (SPC), the extent to which the guidelines are implemented in practice is unclear. This study aimed to examine clinical practices for the assessment and management of constipation for patients with advanced cancer within inpatient SPC settings. A multi-site retrospective case-note review was conducted, consisting of 150 patient case-notes from three inpatient SPC units across the United Kingdom between August 2016 and May 2017. The variables selected for review were determined by the recommendations within the clinical guidelines. Descriptive statistics, cross tabulation, chi square, and bivariate correlations were used to examine clinical practices compared to policy guidelines for the assessment and management of constipation. Reporting was structured by the STROBE checklist for observational research (Additional File 2). A comprehensive assessment, including a full history and performing a physical exam, was recorded for 109 patients (73%), however, no standardised documentation was utilised. Assessment was nurse led, with variable involvement across sites of other members of the multidisciplinary team (MDT). Education on prevention was documented in 30 (20%) case-notes, and 53% recorded evidence of non-pharmacological intervention. Age, gender, and reason for admission did not impact on the likelihood of receiving a comprehensive assessment, education, or non-pharmacological intervention, however, significant differences were evident between sites. Pharmacological management was well developed and aligned to the guidelines however, 33% of patient case-notes recorded no information on the titration of laxatives. Twelve percent of patients experienced partial or complete bowel obstruction, and management strategies were variable. Constipation management is driven by a pharmacological approach, with little evidence of the implementation of preventative and non-pharmacological strategies. The nurse plays a key coordinating role in assessment; however, involvement and roles of the wider MDT varies. Accurate recording of care is essential when examining clinical practice and identifying areas for improvement. Further education is needed to equip HCPs with the knowledge and skills to ensure consistency in assessment and implementation of appropriate non-pharmacological/ preventative strategies.

    更新日期:2019-11-28
  • Supporting carers: health care professionals in need of system improvements and education - a qualitative study
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-07-16
    Ingebrigt Røen; Hans Stifoss-Hanssen; Gunn Grande; Stein Kaasa; Kari Sand; Anne Kari Knudsen

    Health care professionals should prevent and relieve suffering in carers of patients with advanced cancer. Despite known positive effects of systematic carer support, carers still do not receive sufficient support. Carers have reported to be less satisfied with coordination of care and involvement of the family in treatment and care decisions than patients. In a rural district of Mid-Norway, cancer palliative care services across specialist and community care were developed. Participants’ experiences and opinions were investigated as part of this development process. The aim of this qualitative study was to explore and describe health care professionals’ experiences with carer support from their own perspective. Data were collected in focus groups. Purposeful sampling guided the inclusion. Six groups were formed with 21 professionals. The discussions were audio-recorded, transcribed, and analyzed using systematic text condensation. In the analyzis of the focus group discussions, ten categories emerged from the exploration of health care professionals’ carer support, assessment of needs, and factors hampering carer support: 1) dependent on profession, role, and context, 2) personal relationship, 3) personal skills and competence, 4) adjusted to the stage of the disease, 5) informal assessment of carers’ needs, 6) lack of education 7) lack of systems for carer consultations, 8) lack of systems for documentation, 9) lack of systems for involving GPs, and 10) lack of systematic spiritual care. Health care professionals built a personal relationship with the carers as early as possible, to facilitate carer support throughout the disease trajectory. Systematic carer support was hampered by lack of education and system insufficiencies. Organizational changes were needed, including 1) education in carer support, communication, and spiritual care, 2) use of standardized care pathways, including systematic carer needs assessment, 3) systematic involvement of general practitioners, and 4) a system for documentation of clinical work with carers.

    更新日期:2019-11-28
  • Exploring the gender dimension of problems and needs of patients receiving specialist palliative care in a German palliative care unit - the perspectives of patients and healthcare professionals
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-07-17
    Anneke Ullrich; Kristina Grube; Cornelia Hlawatsch; Carsten Bokemeyer; Karin Oechsle

    Gender disparities of specific symptoms and problems have frequently been observed in palliative care patients, but research rarely focused on the range of problems and needs affected by gender. We conducted semi-structured interviews with patients and healthcare professionals (HCPs) of a hospital-based palliative care unit to examine gender effects on patients’ problems and needs based on systematically gathered qualitative data. Content analysis was used to identify emerging themes with data coded using MAXQDA. Ten patients (5 female, 5 male) and 17 HCPs (12 female, 5 male) were interviewed. Seven categories of gender-specific problems and needs emerged: “physical symptoms, care and body image”, “psychological symptoms and emotional response”, “interaction with the palliative care team”, “use of professional supportive measures”, “activation of informal social networks”, “decision-making”, and “preservation of autonomy and identity”. Both patients and HCPs felt that female patients adopt more expressive coping strategies, have stronger need for communication with and support of HCPs, and activate an extended social network for support and decision-making. Further, both groups thought that male patients mainly rely on social support from partners, have higher expectations to be cared for at home, and have higher need for preservation of autonomy. Gender relevantly impacts patients’ problems and needs during palliative care. Therefore, gender-sensitive palliative care that acknowledges the patient’s individual situation and respective ramifications are required.

    更新日期:2019-11-28
  • Table in the corner: a qualitative study of life situation and perspectives of the everyday lives of oesophageal cancer patients in palliative care
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-07-22
    Louise Laursen; Mai Nanna Schønau; Heidi Maria Bergenholtz; Mette Siemsen; Merete Christensen; Malene Missel

    Incurable oesophageal cancer patients are often affected by existential distress and deterioration of quality of life. Knowledge about the life situation of this patient group is important to provide relevant palliative care and support. The purpose of this study is to illuminate the ways in which incurable oesophageal cancer disrupts the patients’ lives and how the patients experience and adapt to life with the disease. Seventeen patients receiving palliative care for oesophageal cancer were interviewed 1–23 months after diagnosis. The epistemological approach was inspired by phenomenology and hermeneutics, and the method of data collection, analysis and interpretation consisted of individual qualitative interviews and meaning condensation, inspired by Kvale and Brinkmann. The study reveals how patients with incurable oesophageal cancer experience metaphorically to end up at a “table in the corner”. The patients experience loss of dignity, identity and community. The study illuminated how illness and symptoms impact and control daily life and social relations, described under these subheadings: “sense of isolation”; “being in a zombie-like state”; “one day at a time”; and “at sea”. Patients feel alone with the threat to their lives and everyday existence; they feel isolated due to the inhibiting symptoms of their illness, anxiety, worry and daily losses and challenges. The patients’ lives are turned upside down, and they experience loss of health, function and familiar, daily habits. The prominent issues for the patients are loneliness and lack of continuity. As far as their normal everyday lives, social networks and the health system are concerned, patients feel they have been banished to a “table in the corner”. These patients have a particular need for healthcare professionals who are dedicated to identifying what can be done to support the patients in their everyday lives, preserve dignity and provide additional palliative care.

    更新日期:2019-11-28
  • An instrument to assess the education needs of nursing assistants within a palliative approach in residential aged care facilities
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-07-23
    Sara Karacsony; Anthony Good; Esther Chang; Amanda Johnson; Michel Edenborough

    Providing quality palliative care in residential aged care facilities (RACFs) (aged care homes) is a high priority for ageing populations worldwide. Older people admitted to these facilities have palliative care needs. Nursing assistants (however termed) are the least qualified staff and provide most of the direct care. They have an important role at the frontline of care spending more time with residents than any other care provider but have been found to lack the necessary knowledge and skills to provide palliative care. The level of competence of this workforce to provide palliative care requires evaluation using a valid and reliable instrument designed for nursing assistants’ level of education and the responsibilities and practices of their role. The overall study purpose was to develop and test an instrument capable of evaluating the knowledge, skills and attitudes of nursing assistants within a palliative approach in RACFs. Development consisted of a four-phase mixed-methods sequential design. In this paper, the results and key findings following psychometric testing of the instrument in Phase 4 is reported using data collected from a random sample of 17 RACFs and 348 nursing assistants in the Greater Sydney region. Study hypotheses were tested to confirm discriminative validity and establish the utility of the instrument in both research and training assessment. Individual item properties were analysed for difficulty, discrimination and item-total correlations. Discriminative and structural validity, and internal consistency and test-retest reliability were demonstrated. Three separate questionnaires comprising 40 items were finalised: The Palliative Approach for Nursing Assistants (PANA)_Knowledge Questionnaire (17 items), the PANA_Skills Questionnaire (13 items) and the PANA_Attitudes Questionnaire (10 items). This study provides preliminary evidence for the validity and reliability of three new questionnaires that demonstrate sensitivity for nursing assistants’ level of education and required knowledge, skills and attitudes for providing a palliative approach. Implications for practice include the development of palliative care competencies through structured education and training across this workforce, and ongoing professional development opportunities for nursing assistants, especially for those with the longest tenure.

    更新日期:2019-11-28
  • Talking about end of life in general palliative care – what’s going on? A qualitative study on end-of-life conversations in an acute care hospital in Denmark
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-07-25
    Heidi Bergenholtz; Helle Ussing Timm; Malene Missel

    End-of-life (EOL) conversations in hospital should serve to give patients the opportunity to consider future treatment options and help them clarify their values and wishes before it becomes relevant to make decisions about treatment. However, it is known that EOL conversations are not performed systematically in hospital. This may mean that patients and their relatives do not address EOL issues. There is a lack of knowledge about who is responsible for conducting these conversations, and when and under what circumstances they are conducted. The aim of this study was to explore the existing practices regarding EOL conversations in an acute care hospital setting. The design was Interpretive Description and the methods for the data collection included: 1. Participatory observational studies in a pulmonary medical and surgical ward (a total of 66 h); 2. Four focus group interviews with healthcare professionals (n = 14) from the wards. The analysis followed Spradley’s ethnosemantic analysis. The results revealed three cultural categories related to: 1. The physical and organizational setting; 2. The timing of EOL conversations and competencies and roles in addressing EOL issues and 3. Topics addressed in EOL conversations. The EOL conversations were part of daily clinical practice, but there was a lack of competencies, roles were unclear and the physical and organizational environment was not conducive to the conversations. The topics of the EOL conversations revolved around a “here-and-now” status of the patient’s disease progression and decisions about the level of treatment. To a lesser extent, the conversations included the patient’s and relatives’ thoughts and wishes concerning EOL, which allowed long-term care planning. This study demonstrates that there are several barriers to talking about EOL in an acute care hospital setting, and future strategies must address an overall approach. In order to provide patients and their relatives with better opportunities to express their EOL wishes, there is a need for clearer roles and guidelines in an interdisciplinary approach to EOL conversations, alongside improved staff competencies and changes to the organizational and physical environment.

    更新日期:2019-11-28
  • Can a single question about family members’ sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient’s death
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-07-25
    Anna Milberg; Maria Liljeroos; Barbro Krevers

    It has been recognised that more evidence about important aspects of family members’ sense of security during palliative care is needed. The objectives of the study was: i) to discover what variables are associated with family members feeling secure during palliative care; ii) to develop a model of family members’ sense of security during palliative care, and iii) to evaluate if family members’ sense of security during ongoing palliative care predicts well-being during bereavement. Between September 2009 and October 2010, 227 family members (of patients admitted to six Swedish palliative home care units) participated in the study (participation rate 75%) during ongoing care and 158 participated also 1 year after the patient’s death (70%). They answered a single question regarding the family members’ sense of security during the palliative care period. The question was constructed and validated by the researchers. Data were also collected using other questions and validated instruments and analysed stepwise with Generalized Linear Models (ordinal multinomial distribution and logit link). Sixteen variables were positively related to family members’ sense of security during ongoing palliative care. The five variables with the highest importance were selected into the model (listed in decreasing importance): Family members’ mastery; nervousness and stress; self-efficacy; patient having gynaecological cancer; family members’ perceived quality of life. Moreover, the family members’ sense of security during ongoing palliative care predicted ten variables indicating their well-being 1 year after the patient’s death, e.g. psychological well-being, complicated grief symptoms, health related quality of life. The findings reveal possibilities to identify family members at risk of negative adjustment to bereavement in clinical practice and may help to develop interventions to support family members during ongoing palliative care.

    更新日期:2019-11-28
  • Advance care planning with patients on hemodialysis: an implementation study
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-07-26
    Sarah L. Goff; Mark L. Unruh; Jamie Klingensmith; Nwamaka D. Eneanya; Casey Garvey; Michael J. Germain; Lewis M. Cohen

    Patients with end-stage kidney disease (ESKD) on hemodialysis have limited life expectancy, yet their palliative care needs often go unmet. The aim of this study was to identify barriers and facilitators for implementation of “Shared Decision Making and Renal Supportive Care” (SDM-RSC), an intervention to improve advance care planning (ACP) for patients with ESKD on hemodialysis. The Consolidated Framework for Implementation Research (CFIR) was the organizing framework for this study. CFIR is a theory-based implementation framework consisting of five domains (Intervention Characteristics, Inner Setting, Outer Setting, Characteristics of Individuals, and Process), each of which has associated constructs. Potential barriers and facilitators to implementation of the SDM-RSC intervention were identified through observation of study procedures, surveys of social workers nephrologists, study participants, and family members, and assessment of intervention fidelity. Twenty-nine nephrologists and 24 social workers, representing 18 outpatient dialysis units in Massachusetts (n = 10) and New Mexico (n = 8), were trained to conduct SDM-RSC intervention sessions. A total of 102 of 125 patient enrolled in the study received the intervention; 40 had family members present. Potential barriers and facilitators to implementation of the SDM-RSC intervention were identified in each of the five CFIR domains. Barriers included complexity of the intervention; challenges to meeting with patients on non-dialysis days; difficulties scheduling intervention sessions due to nephrologists’ and social workers’ caseloads; perceived need for local policy change regarding ACP; perceived need for additional ACP training for social workers and nephrologists; and lack of endorsement of the intervention by some staff members. Facilitators included: training for social workers, national dialysis chain leadership engagement and the institution of social worker/nephrologist clinic champions. ACP for patients on hemodialysis can have a positive impact on end-of-life outcomes for patients and their families but does not take place routinely. The barriers to effective implementation of interventions to improve ACP identified in this study might be addressed by: adapting the intervention for local contexts with input from clinicians, dialysis staff, patients and families; providing nephrologists and social workers additional training prior to delivering the intervention; and developing policy that routinizes ACP for hemodialysis patients. Clinicaltrials.gov NCT02405312. Registered 04/01/2015.

    更新日期:2019-11-28
  • Expressive writing as a therapeutic intervention for people with advanced disease: a systematic review
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-08-02
    N. Kupeli; G. Chatzitheodorou; N. A. Troop; D. McInnerney; P. Stone; B. Candy

    Expressive writing involves writing about stressful or traumatic experiences. Despite trials in people with advanced disease, no systematic review to date has critiqued the evidence on expressive writing in this population. To synthesise the evidence of the effects of expressive writing on pain, sleep, depression and anxiety in people with advanced disease. A systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. CINAHL, CENTRAL, PsycINFO and PubMed were searched from January 1986 to March 2018. Other sources included clinical data registers and conference proceedings. Studies were included if they were randomised controlled trials that assessed the impact of an intervention involving expressive writing for adults with advanced disease and/or studies involving linguistic analysis on the expressive writing output. Methodological quality was assessed using the Cochrane risk of bias tool and the Mixed Methods Appraisal Tool. The Grading of Recommendations Assessment, Development and Evaluation tool was used to assess the level of evidence for the outcomes of interest. The protocol of this systematic review has been registered on PROSPERO (CRD42017058193). Six eligible studies with a total of 288 participants were identified, including four randomised controlled trials. All of the trials were in cancer and recruited predominantly women. None of the interventions were tailored to the population. Studies had methodological shortcomings and evidence was generally of low quality. Combined analysis of the four trials, involving 214 participants in total, showed no clear difference in the effect of expressive writing on sleep, anxiety or depression compared to an active control. Pain was not evaluated in the trials. In contrast, analysis of the four studies that included linguistic analysis alluded to linguistic mechanisms for potential effects. Although the trial results suggest there is no benefit in expressive writing for people with advanced disease, the current evidence is limited. There is a need for more rigorous trials. It would be of benefit first to undertake exploratory research in trial design including how best to measure impact and in tailoring of the intervention to address the specific needs of people with advanced disease. The protocol of this systematic review has been registered on PROSPERO, which can be accessed here (registration number: CRD42017058193 ).

    更新日期:2019-11-28
  • Exploring health care providers’ perceptions about home-based palliative care in terminally ill cancer patients
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-08-06
    Heshmatolah Heydari; Suzanne Hojjat-Assari; Mohammad Almasian; Pooneh Pirjani

    According to the World Health Organization, palliative care is one of the main components of healthcare. As the incidence of cancer is increasing in the world, home-based palliative care can be beneficial for many patients. This study was designed to explore health care providers’ perceptions about home-based palliative care in terminally ill cancer patients. This qualitative study was carried out using the conventional content analysis from October 2016 to September 2018 in Iran. Participants were home care providers who were selected using purposive sampling. The data were collected through 18 individual interviews, and a focus group meeting. Data were analyzed based on the method proposed by Lundman and Graneheim. from the data analysis, 511 initial codes were extracted, which were categorized into the two main categories of challenges and opportunities for home-based palliative care and 10 subcategories. The subcategories of challenges included deficiencies in inter-sectoral and inter-professional cooperation, lack of infrastructures for end-of-life care, challenges related to the management of death, challenges of transferring patients to home, providing non-academic palliative care, lack of political commitment of the government and Spiritual vacuum. The category of opportunities included subcategories of cost-effectiveness, moving towards socializing health, and structure of the health system. Home-based palliative care requires government and health system support. Structural and process modification in the healthcare can provide conditions in which terminally ill cancer patients receive appropriate care in home and experience death with dignity through support of family, friends and healthcare.

    更新日期:2019-11-28
  • Does packed red cell transfusion provide symptomatic benefits to cancer palliative patients?: a longitudinal study from a single private oncology center in Nepal
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-08-06
    Sameer Timilsina; Sirisa Karki; Santosh Timalsina; Aajeevan Gautam; Sabitri Sharma

    Palliative patients generally present with symptoms of dyspnea, easy fatigability, lethargy and feeling of being unwell which can broadly be attributed to one root cause: cancer-related anemia. So, packed red cell transfusion is often carried out aiming to improve patients’ functional status. Different cut off hemoglobin values have been suggested, with Hb < 9 g/dL the most commonly accepted. The present study aims at evaluating and comparing the benefits in subjective symptoms of fatigue and breathlessness among transfused and non-transfused palliative patients on Day 0 and Day 7. Hemoglobin values, anemia related subjective symptoms of fatigue and breathlessness were recorded from 122 patients. The patients were re-evaluated on day-7 post-transfusion. The pre and post-transfusion symptomatic benefit was compared in both transfused and non-transfused palliative care patients. The currently practiced hemoglobin trigger for packed red cell transfusion is 10 g/dL. The units of packed red cell to be transfused was decided according to the hemoglobin values targeting the rise to > 10 g/dL. A mean 1.36 units were transfused. Statistically significant improvement was observed in patient reported symptoms of fatigue and breathlessness among both transfused and non-transfused palliative patients. Anemic cancer palliative patients were found to benefit following packed red cell transfusion, suggesting a favorable association between the transfusion and patient-reported fatigue and dyspnea.

    更新日期:2019-11-28
  • Psychometric assessment of the Chinese version of the Problems and Needs in Palliative Care questionnaire-short version in advanced cancer patients
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-08-06
    Tao Wang; Alex Molassiotis; Betty Pui Man Chung; Jing-Yu Tan

    To determine the validity, reliability and acceptability of the Mandarin Chinese version of the Problems and Needs in Palliative Care questionnaire-short version (PNPC-sv) for measuring problems and palliative care needs among patients with advanced cancer. This was a validation study using a forward- and backward- translation procedure, a panel of experts and a cross-sectional study design. The Mandarin Chinese version of the PNPC-sv was translated by four independent translators. The translated Chinese version was further reviewed by an expert panel to identify its content validity. A pilot test was conducted in 10 advanced cancer patients to preliminarily assess the face validity, readability and clarity of the pre-final version of the PNPC-sv. 178 patients with advanced cancer, regardless of their gender and types of cancer diagnosis, were further recruited through a convenience sampling from three tertiary hospitals in China to assess the psychometric properties of the PNPC-sv Mandarin Chinese version. Content validity was measured using the content validity index (CVI). Construct validity was estimated via confirmatory factor analysis and the contrasted groups approach. Concurrent validity was identified by analysing the correlations between the EORTC Quality-of-Life Questionnaire-Core 30 (EORTC QLQ-C30) and the PNPC-sv. Reliability of the PNPC-sv was examined with the internal consistency reliability and item-to-total correlations. Several closed-ended and open-ended questions were designed to explore its acceptability. 174 patients completed the questionnaires. High content and face validity were determined after the two rounds of assessment with the expert panel and the patients. An excellent CVI of 1.0 was achieved and patients rated the PNPC-sv as a useful instrument for assessing their problems and needs (mean score = 7.99, 0–10 scale) and reported the items were not particularly sensitive and easy to understand. The majority of the fit indexes meet the critical criteria, with the Chi-square divided by degrees of freedom (x2/df) being 1.58 and 2.05, and the root mean squared error of approximation (RMSEA) being 0.06 and 0.07 for the problem part and need-for-care part, respectively. In relation to the contrasted groups analysis, it clearly discriminated the differences on the sub-scores of Activities of Daily Life (ADL), spiritual and psychological problems and needs between male and female patients; ADL, physical, social and financial problems and needs between age groups; and autonomic problems and needs between patients with different cancer stages. Statistically significant correlations (p < 0.05) were detected between the PNPC-sv and the EORTC QLQ-C30 in the majority of the sub-scores (positive correlations) and total scores (negative correlations). The Cronbach’s alpha of the total scale was 0.88 and 0.91 for the problem part and need-for-care part, respectively. The Cronbach’s alpha of the subscales were generally above 0.70. Item-to-total correlations were generally acceptable, with the majority of the values being above 0.40. The PNPC-sv questionnaire was reported to be convenient and easy to understand, and the average time for completing was 11 min. The Mandarin Chinese version of the PNPC-sv is a valid, reliable and user-friendly instrument for measuring problems and palliative care needs among patients with advanced cancer. Further research is needed to further examine its psychometric properties particular internal structure in a larger patient sample.

    更新日期:2019-11-28
  • A systematic review and meta-analysis of randomized controlled trials of palliative care for pain among Chinese adults with cancer
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-08-08
    Xin-Xin Zhao; Meng Cui; Yi-Hang Geng; Yi-Long Yang

    Pain is one of the most common symptoms that has a severe impact on quality of life and is associated with numerous psychosocial issues in cancer patients. Palliative care, which is a recent development in China, mainly focuses on symptom control and provides psychosocial support in order to improve quality of life for terminally ill patients. This meta-analysis aimed to evaluate the effects of palliative care on cancer pain in China. The four most comprehensive Chinese academic databases-CNKI, Wanfang, Vip and CBM-were searched from their inception until July 2019. Medline/PubMed, Web of Science, EBSCO and internet search (Google and Google Scholar) were also searched. Randomized controlled studies assessing the effects of palliative care on cancer pain were analyzed. The pooled random-effect estimates of standardized mean difference (SMD) and 95% confidence intervals (CI) were calculated. Subgroup analysis was conducted by moderating factors for heterogeneity. The present meta-analysis included 18 studies with a total of 1370 patients. The random-effect model showed a significant effect size of palliative care on cancer pain (SMD = 1.475, p < 0.001; 95% CI = 1.071–1.878). Age, pharmacological/non-pharmacological strategies and publication date could account for the heterogeneity through subgroup analysis to some extent. Palliative care was largely effective for relieving pain among Chinese adults with cancer, indicating that an adequate system should be urgently established to provide palliative care for cancer patients in Chinese medical settings. However, given the extent of heterogeneity, our findings should be interpreted cautiously.

    更新日期:2019-11-28
  • “I go into crisis when …”: ethics of care and moral dilemmas in palliative care
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-08-09
    Ludovica De Panfilis; Silvia Di Leo; Carlo Peruselli; Luca Ghirotto; Silvia Tanzi

    Recognising and knowing how to manage ethical issues and moral dilemmas can be considered an ethical skill. In this study, ethics of care is used as a theoretical framework and as a regulatory criterion in the relationship among healthcare professionals, patients with palliative care needs and family members. This study is a part of a larger project aimed at developing and implementing a training programme on “ethical communication” addressed to professionals caring for patients with palliative care needs. The aim of this study was comprehending whether and how the ethics of care informs the way healthcare professionals make sense of and handle ethical issues in palliative care. Qualitative study employing a theoretically driven thematic analysis performed on semi-structured interviews. The research was conducted in a clinical cancer centre in northern Italy. Eligible participants were physicians and nurses from eleven hospital wards who assisted patients with chronic advanced disease daily and had previously attended a 4-h training on palliative care held by the hospital Palliative Care Unit. The researchers identified five themes: morality is providing global care; morality is knowing how to have a relationship with patients; morality is recognizing moral principles; moral dimension and communication; and moral dilemmas are individual conflicts. Ethics of care seems to emerge as a theoretical framework that includes the belief systems of healthcare professionals, especially those assisting patients with palliative care needs; moreover, it allows the values of both the patients and professionals to come to light through the relationship of care. Ethics of care is also appropriate as a framework for ethical training.

    更新日期:2019-11-28
  • Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-08-13
    Nathan Davies; Jenny Hopwood; Nina Walker; Jamie Ross; Steve Iliffe; Kate Walters; Greta Rait

    Caring for someone with dementia can be physically and emotionally difficult. Acting as a caregiver can make it difficult to access sources of support, particularly in the later stages of dementia. This paper reports the development and presents the targets (subject areas) and components of a prototype website to support family caregivers of a person with dementia towards the end of life. Adopting an iterative approach and co-production methods the development process consisted of four stages: Stage1-Synthesis of data: three sources of data (interviews, systematic review and theory) were synthesised using tabulation, to identify the targets of the prototype; Stage2-Identifying intervention targets and components: a research development group (health practitioners, a family caregiver and academic experts) met to discuss the development, using a modified nominal group process, refining the synthesis from stage 1; Stage3-Developing the intervention prototype: an outline of the prototype was developed based on stage 1 and 2; and Stage4–User testing: interviews with caregivers testing the prototype website. Qualitative interviews with caregivers identified four targets for the intervention: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) valuing themselves as a caregiver and as an individual; 4) maintaining control of the caring situation and being the coordinator of care. The systematic review provided evidence on how and what components could address these targets, including providing information, peer support, contact with professionals, and psychological support. Theory helped to narrow the focus within each of these targets. Active discussion with the research development group and end users provided an outline of the prototype website. The prototype website presented addresses these targets with written information, videos from other caregivers, and peer and professional support sections. The subject areas covered included expectations at the end of life, support with day-to-day caring, care planning, and communication. This paper provides a detailed account of the development process of a prototype website for caregiver support. The transparent methodology and key lessons learnt from developing the prototype should help those who are developing similar interventions, across complex, progressive conditions and not just limited to dementia.

    更新日期:2019-11-28
  • Palliative care education in the undergraduate medical curricula: students’ views on the importance of, their confidence in, and knowledge of palliative care
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-08-28
    Jolien Pieters; Diana H. J. M. Dolmans; Daniëlle M. L. Verstegen; Franca C. Warmenhoven; Annemie M. Courtens; Marieke H. J. van den Beuken-van Everdingen

    The need for palliative care is increasing. Since almost every junior doctor will come across palliative care patients, it is important to include palliative care in the undergraduate curriculum. The objective of this research is to gather undergraduate students’ views on palliative care in terms of its importance, their confidence in and knowledge of the domain. Final-year medical students at four Dutch medical faculties were surveyed. The questionnaire measured their views on the education they had received, their self-reported confidence in dealing with palliative care patients and their knowledge of palliative care. Two hundred twenty-two medical students participated in this study. Students considered palliative care education relevant, especially training in patient-oriented care and communication with the patient. Students felt that several topics were inadequately covered in the curriculum. Overall, the students did not feel confident in providing palliative care (59.6%), especially in dealing with the spiritual aspect of palliative care (77%). The knowledge test shows that only 48% of the students answered more than half of the questions correctly. The students in this study are nearly junior doctors who will soon have to care for palliative patients. Although they think that palliative care is important, in their opinion the curriculum did not cover many important aspects, a perception that is also in line with their lack of confidence and knowledge in this domain. Therefore, it is important to improve palliative care education in the medical curriculum.

    更新日期:2019-11-28
  • Consensus on treatment for residents in long-term care facilities: perspectives from relatives and care staff in the PACE cross-sectional study in 6 European countries
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-08-29
    M. ten Koppel; H. R. W. Pasman; J. T. van der Steen; H. P. J. van Hout; M. Kylänen; L. Van den Block; T. Smets; L. Deliens; G. Gambassi; K. Froggatt; K. Szczerbińska; B. D. Onwuteaka-Philipsen

    In long-term care facilities often many care providers are involved, which could make it difficult to reach consensus in care. This may harm the relation between care providers and can complicate care. This study aimed to describe and compare in six European countries the degree of consensus among everyone involved in care decisions, from the perspective of relatives and care staff. Another aim was to assess which factors are associated with reporting that full consensus was reached, from the perspective of care staff and relatives. In Belgium, England, Finland, Italy, the Netherlands and Poland a random sample of representative long-term care facilities reported all deaths of residents in the previous three months (n = 1707). This study included residents about whom care staff (n = 1284) and relatives (n = 790) indicated in questionnaires the degree of consensus among all involved in the decision or care process. To account for clustering on facility level, Generalized Estimating Equations were conducted to analyse the degree of consensus across countries and factors associated with full consensus. Relatives indicated full consensus in more than half of the residents in all countries (NL 57.9% - EN 68%), except in Finland (40.7%). Care staff reported full consensus in 59.5% of residents in Finland to 86.1% of residents in England. Relatives more likely reported full consensus when: the resident was more comfortable or talked about treatment preferences, a care provider explained what palliative care is, family-physician communication was well perceived, their relation to the resident was other than child (compared to spouse/partner) or if they lived in Poland or Belgium (compared to Finland). Care staff more often indicated full consensus when they rated a higher comfort level of the resident, or if they lived in Italy, the Netherland, Poland or England (compared to Finland). In most countries the frequency of full consensus among all involved in care decisions was relatively high. Across countries care staff indicated full consensus more often and no consensus less often than relatives. Advance care planning, comfort and good communication between relatives and care professionals could play a role in achieving full consensus.

    更新日期:2019-11-28
  • Development of an eHealth information resource for family carers supporting a person receiving palliative care on the island of Ireland
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-08-30
    David Scott; Peter Hudson; Karen Charnley; Cathy Payne; Gareth Westcott

    Many people receiving palliative care wish to die at home. Often, support from family or friends is key to ensuring that this wish is fulfilled. However, carers report feeling underprepared to undertake this role. This paper describes the process of developing a consensus and evidence based website to provide core information to help people support someone receiving palliative care on the island of Ireland. The project comprised three phases: (1) a review of systematic reviews facilitated the identification of core information needs; (2) content was developed in collaboration with a Virtual Reference Group (VRG) comprising patients, carers and professionals; and, (3) subject experts within the project team worked with a web developer to précis the agreed content and ensure it was in a format that was appropriate for a website. Members of the VRG were then invited to test and approve the website before it was made available to the general public. Nineteen systematic reviews identified nine consensus areas of core information required by carers; a description of palliative care; prognosis and treatment of the condition; medication and pain management; personal care; specialist equipment; locally available support services; what to do in an emergency; nutrition; and, support for the carer. This information was shared with the VRG and used to develop website content. We engaged with service users and professionals to develop an evidence-based website addressing the agreed core information needs of non-professional carers who wish to provide palliative care to a friend or relative.

    更新日期:2019-11-28
  • When is hastened death considered suicide? A systematically conducted literature review about palliative care professionals’ experiences where assisted dying is legal
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-08-31
    Sheri Mila Gerson; Amanda Bingley; Nancy Preston; Anne Grinyer

    Laws allowing assisted suicide and euthanasia have been implemented in many locations around the world but some individuals suffering with terminal illness receiving palliative care services are hastening death or die by suicide without assistance. This systematic review aims to summarise evidence of palliative care professionals’ experiences of patients who died by suicide or hastened death in areas where assisted dying is legal and to understand when hastened death is considered to be a suicide. AMED, CINAHL Complete, PsycINFO, PubMED, and Academic Search Ultimate were searched for articles from inception through June 2018. Quality assessment used the Hawker framework. A total of 1518 titles were screened resulting in thirty studies meeting eligibility criteria for this review. Published studies about professionals’ experiences from areas with legalised assisted dying includes limited information about patients who hasten death outside legal guidelines, die by suicide without assistance, or if the law impacts suicide among palliative care patients. There are a range of experiences and emotions professionals’ experience with patients who die by euthanasia, assisted suicide, or hasten death without assistance. The included literature suggests improved communication among professionals is needed but does not explicitly identify when a hastened death is deemed a suicide in areas where assisted dying is practiced. More research is needed to help clarify what hastened death means in a palliative care context and identify how and if assisted dying impacts issues of suicide in palliative care settings.

    更新日期:2019-11-28
  • The developing and evaluation of an electronic tool to assess the effect of undergraduate training in palliative care: the electronic international medical education in palliative care (IMEP-e) assessment tool
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-09-02
    Amrita Rai; Stephen Mason

    With increased demand for palliative care (PC), the World Health Organisation (WHO) have called for PC teaching to be made routine. However, medical students report feeling unprepared in dealing with end-of-life care. Necessary benchmarking of the preparedness of clinicians to provide PC is required to identify where current training is sub-optimal and ensure future doctors are equipped to meet the needs of their patients. The aim of this study is to assess the utility of an electronic International Medical Education in Palliative Care (IMEP-e) assessment tool that examines the preparedness of clinicians to provide PC. A multi-phase pilot study. Phase 1: To transpose the Self-Efficacy Palliative Care Scale (SEPCs) and the Thanatophobia Scale (TS) to an electronic format and evaluate its utility. Phase 2: To assess the effects of PC teaching by comparing data from year three (Y3) and year five (Y5 - who have participated in PC placement) medical students. Scales: The 23 item SEPC and 7 item TS assess attitudes towards caring for dying patients. Total questionnaires sent =360 (280 Y3, 80 Y5). Total response rate = 46.39%, n = 167 (127 Y3, 40 Y5). Completed data: n = 125 (95 Y3, 30 Y5). Analysis identified statistically significant differences (p < 0.001) between year groups across all subscales of the SEPC; communication skills (t = − 13.52), Pain and Treatment management (t = − 14.25) and multidisciplinary management (t = − 7.89). The TS shows a statistically significant increased positive attitudes (z = − 2.85 p < 0.005). From the focus group, three themes were identified from the qualitative feedback including university based teaching, hospice based teaching and utility of IMEP-e tool. The IMEP-e tool is a viable and comparable method for collecting data on the preparedness to practice PC. A larger scale study is needed to determine and evaluate if, and how, preparing clinicians to work in PC has been adapted in to routine training.

    更新日期:2019-11-28
  • Hospitalization at the end of life among nursing home residents with dementia: a systematic review
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-09-10
    Falk Hoffmann; Anke Strautmann; Katharina Allers

    Half of nursing home residents (NHR) suffer from dementia. End-of-life hospitalizations are often burdensome in residents with dementia. A systematic review was conducted to study the occurrence of hospitalizations at the end of life in NHR with dementia and to compare these figures to NHR without dementia. A systematic literature search in MEDLINE, CINAHL and Scopus was conducted in May 2018. Studies were included if they reported proportions of in-hospital deaths or hospitalizations of NHR with dementia in the last month of life. Two authors independently selected studies, extracted data, and assessed quality of studies. Nine hundred forty-five citations were retrieved; 13 studies were included. Overall, 7 studies reported data on in-hospital death with proportions ranging between 0% in Canada and 53.3% in the UK. Studies reporting on the last 30 days of life (n = 8) varied between 8.0% in the Netherlands and 51.3% in Germany. Two studies each assessed the influence of age and sex. There seem to be fewer end-of-life hospitalizations in older age groups. The influence of sex is inconclusive. All but one study found that at the end of life residents with dementia were hospitalized less often than those without (n = 6). We found large variations in end-of-life hospitalizations of NHR with dementia, probably being explained by differences between countries. The influence of sex and age might differ when compared to residents without dementia. More studies should compare NHR with dementia to those without and assess the influence of sex and age. PROSPERO registration number CRD42018104263 .

    更新日期:2019-11-28
  • Music in palliative care: a qualitative study with patients suffering from cancer
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-10-07
    Sandrine Pommeret; Jan Chrusciel; Catherine Verlaine; Marilene Filbet; Colombe Tricou; Stephane Sanchez; Louise Hannetel

    The palliative care unit is an emotionally challenging place where patients and their families may feel at loss. Art can allow the expression of complex feelings. We aimed to examine how cancer patients hospitalized in the palliative care unit experienced a musical intervention. We conducted a qualitative study based on semi-structured interviews. The study took place in a palliative care unit from 18 January 2017 to 17 May 2017. Two artists performed in the palliative care unit once a week from 9:30 am to 5:30 pm. The data from patient interviews were analysed based on an inductive approach to the verbatim accounts. The accounts we gathered led us to weigh the positive emotions engendered by this musical intervention against the potential difficulties encountered. The artists opened a parenthesis in the care process and brought joy and well-being to the palliative care unit. Patients also encountered difficulties during the intervention: reference to an altered general state, to loss of autonomy; a sense of the effort required, of fatigue; an adaptation period; reference to the end of life, to death; a difficulty in choosing songs. Although music appeared to benefit the patients, it sometimes reminded them of their altered state. The difficulties experienced by patients during the experience were also related to physical exhaustion. Additional studies are needed to determine the benefits of music for patients and their families in the palliative care unit.

    更新日期:2019-11-28
  • Volunteers in a biography project with palliative care patients – a feasibility study
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-10-07
    Michaela Hesse; Simon Forstmeier; Henning Cuhls; Lukas Radbruch

    Increasing the quality of life with short interventions for vulnerable patients is one of the objectives of palliative care. Biographical approaches are used in a range of different interventions which may require considerable resources of staff time and energy. This study evaluated the feasibility of training hospice volunteers in biographical interviews of patients confronted with a life-limiting disease. For the purpose of this study, we evaluated resources such as time needed for training, coordination and supervision, outcome such as completion of the intervention in appropriate time and risks such as causing distress in patients or volunteers as major determinants of feasibility. Nine volunteers from a hospice service attended an advanced training with an introduction to palliative care, biography work, interview techniques, transcribing and writing. Volunteers interviewed a patient and developed a written narrative from the interview. Volunteers completed a questionnaire before training and were interviewed at the end of the project. The interviews were audiotaped, transcribed, and evaluated using descriptive and qualitative content analysis. Patients provided positive feedback from the intervention. Volunteers felt that their involvement was personally rewarding and were moved by the courage and confidence of the patients. There were no systematic problems or negative experiences reported neither by volunteers nor by patients. We found the use of volunteers for biography work with patients in palliative care feasible and effective in this study. Volunteers needed supervision and ongoing support in providing this intervention.

    更新日期:2019-11-28
  • A comparative study on decision and documentation of refraining from resuscitation in two medical home care units in Sweden
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-10-17
    Bogdan Sterpu; Pia Lindman; Linda Björkhem-Bergman

    A decision to refrain from cardiopulmonary resuscitation (CPR) in the case of cardiac arrest is recommended in terminally ill patients to avoid unnecessary suffering at time of death. The aim of this study was to describe the frequency of decisions and documentation of “do not attempt cardiopulmonary resuscitation” (DNACPR) in two Medical Home Care Units in Stockholm. Unit A had written guidelines about how to document CPR-decisions in the medical records, including a requirement for a decision to be taken (CPR: yes/no) while Unit B had no such requirement. The medical records for all patients in palliative phase of their disease at the two Units were reviewed. Data was collected on documentation of decisions about CPR (yes/no), DNACPR-decisions and documentation regarding whether the patient or next-of-kin had been informed about the DNACPR-decision. In the two Units, 316 and 219 patients in palliative phase were identified. In Unit A 100% of the patients had a CPR-decision (yes/no) compared to 79% in Unit B (p < 0.001). There was no statistically significant difference in DNACPR-decisions between the two Units, 43 and 37%. Documentation about informing the patient regarding the decision was significantly higher in Unit A, 53% compared to 14% at Unit B (p < 0.001). Documentation about informing the next-of-kin was also significantly higher at Unit A; 42% compared to 6% at Unit B (p < 0.001). Less than 50% of patients in palliative phase had a decision of DNACPR in two Medical Home Care Units in Stockholm. The presence of written guidelines and a requirement for a CPR-decision did not increase the frequency of DNACPR-decisions but was associated with a higher frequency of documentation of decisions and of information given to both the patients and the next-of-kin.

    更新日期:2019-11-28
  • Assessing the validity of the clinician-rated distress thermometer in palliative care
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-10-17
    A. Van Lander; A. Tarot; C. Savanovitch; B. Pereira; B. Vennat; V. Guastella

    The distress of patients suffering from a terminal illness can lead to a state of despair and requests for euthanasia and assisted suicide. It is a major challenge for palliative care workers. The Distress Thermometer (DT) is recommended by the National Comprehensive Cancer Network as a means of more easily assessing distress. It is available as a Self-assessment reported Distress Thermometer, but for a wider use in palliative care it should also be implemented in the form of a clinician-reported outcome (clinRO). Clinicians need to rate patient’s distress when the patient is not able to do so (subject that cannot be addressed, defensive patient…). The primary aim of the quantitative study was to assess the validity of the Clinician-Rated Distress Thermometer in palliative care. The assessments were performed by teams working in three palliative care centres. The primary endpoint was concordance between the patient and clinicians’ responses via Lin’s concordance coefficient. Eligible patients were aged 18 years or older, suffering from a severe disease in the palliative phase, and with a sufficient level of awareness to consent to participate in the study. A total of 51 patients were recruited, 55% were male, with a mean age of 65.8 years [39–90 years]. Three hundred sixty-four clinician-Rated Distress Thermometer and 467 Self-Reported Distress Thermometer were performed. Only 364 of the 467 Self-Reported Distress Thermometer were used for the study, as investigators did not systematically ask the patient to give an account of his distress. Concordance between patient and clinician responses: The Lin’s concordance coefficient with a threshold (alpha) of 5% was 0.46 [0.38; 0.54]. At the first assessment, it was 0.61 [0.44; 0.79]. The Cohen’s kappa coefficient was 0.52, with a concordance rate of 79.6%. The sensitivity was 82.9% [66.4–93.4] and the specificity 71.4% [41.9–91.6]. The first assessment gave the best results in terms of concordance between Clinician-Rated DT and Self-Reported DT. In the next assessments, the Clinician-Rated DT were less consistent with the patients’ Self-Reported DT.

    更新日期:2019-11-28
  • An exploration of the prevalence and experience of cardiac cachexia: protocol for a mixed methods cross-sectional study
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-10-20
    Matthew A. Carson; Joanne Reid; Loreena Hill; Lana Dixon; Patrick Donnelly; Paul Slater; Alyson Hill; Donna Fitzsimons

    Cachexia is a complex and multifactorial syndrome defined as severe weight loss and muscle wasting which frequently goes unrecognised in clinical practice [1]. It is a debilitating syndrome, resulting in patients experiencing decreased quality of life and an increased risk of premature death; with cancer cachexia alone resulting in 2 million deaths per annum [2]. Most work in this field has focused on cancer cachexia, with cardiac cachexia being relatively understudied – despite its potential prevalence and impact in patients who have advanced heart failure. We report here the protocol for an exploratory study which will: 1. focus on determining the prevalence and clinical implications of cardiac cachexia within advanced heart failure patients; and 2. explore the experience of cachexia from patients’ and caregivers’ perspectives. A mixed methods cross-sectional study. Phase 1: A purposive sample of 362 patients with moderate to severe heart failure from two Trusts within the United Kingdom will be assessed for known characteristics of cachexia (loss of weight, loss of muscle, muscle mass/strength, anorexia, fatigue and selected biomarkers), through basic measurements (i.e. mid-upper arm circumference) and use of three validated questionnaires; focusing on fatigue, quality of life and appetite. Phase 2: Qualitative semi-structured interviews with patients (n = 12) that meet criteria for cachexia, and their caregivers (n = 12), will explore their experience of this syndrome and its impact on daily life. Interviews will be digitally recorded and transcribed verbatim, prior to qualitative thematic and content analysis. Phase 3: Workshops with key stakeholders (patients, caregivers, healthcare professionals and policy makers) will be used to discuss study findings and identify practice implications to be tested in further research. Data collected as part of this study will allow the prevalence of cardiac cachexia in a group of patients with moderate to severe heart failure to be determined. It will also provide a unique insight into the implications and personal experience of cardiac cachexia for both patients and carers. It is hoped that robust quantitative data and rich qualitative perspectives will promote crucial clinical discussions on implications for practice, including targeted interventions to improve patients’ quality of life where appropriate.

    更新日期:2019-11-28
  • How to help researchers in palliative care improve responsiveness to migrants and other underrepresented populations: developing and testing a self-assessment instrument
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-10-21
    M. Torensma; B. D. Onwuteaka-Philipsen; K. L. Strackee; M. G. Oosterveld-Vlug; X. de Voogd; D. L. Willems; J. L. Suurmond

    European migrant populations are aging and will increasingly be in need of palliative and end of life care. However, migrant patients are often underrepresented in palliative care research populations. This poses a number of drawbacks, such as the inability to generalize findings or check the appropriateness of care innovations amongst migrant patients. The aim of this study was to develop a self-assessment instrument to help palliative care researchers assess and find ways to improve their projects’ diversity responsiveness in light of the aging migrant population, and determine whether in addition to older migrants other groups should be included in the instrument’s focus. After developing a concept instrument based on the standards for equity in healthcare for migrants and other vulnerable groups, literature review and interviews with palliative care researchers, we conducted a Delphi study to establish the content of the self-assessment instrument and used think aloud methods in a study involving seven projects for usability testing of the self-assessment instrument. A Delphi panel of 22 experts responded to a questionnaire consisting of 3 items concerning the target group and 30 items on diversity responsiveness measures. Using an a priori set consensus rate of 75% to include items in the self-assessment instrument, experts reached consensus on 25 out of 30 items on diversity responsiveness measures. Findings furthermore indicate that underserved groups in palliative care other than migrant patients should be included in the instrument’s focus. This was stressed by both the experts involved in the Delphi study and the researchers engaged in usability testing. Usability testing additionally provided insights into learnability, error-rate, satisfaction and applicability of the instrument, which were used to revise the self-assessment instrument. The final self-assessment instrument includes a list of 23 diversity responsiveness measures to be taken at varying stages of a project, and targets all groups at risk of being underrepresented. This instrument can be used in palliative care research to assess diversity responsiveness of projects and instigate action for improvement.

    更新日期:2019-11-28
  • Completion rate of physician orders for life-sustaining treatment for patients with metastatic or recurrent cancer: a preliminary, cross-sectional study
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-10-22
    Ju Won Kim; Jung Yoon Choi; Won Jin Jang; Yoon Ji Choi; Youn Seon Choi; Sang Won Shin; Yeul Hong Kim; Kyong Hwa Park

    “End of life” is a difficult topic of conversation in East Asian cultures, even among patients and doctors who share a good rapport. In 2016, the Hospice, Palliative Care, and Life-Sustaining Treatment Decision-Making Act, which took the form of “Physician Orders for Life-Sustaining Treatment,” was introduced in South Korea. This study was conducted to investigate the completion rate of Physician Orders for Life-Sustaining Treatment in patients with advanced cancer on the active recommendation of physicians, as well as patients’ general attitudes toward end-of-life care. We conducted a preliminary, cross-sectional descriptive survey on patients with advanced cancer. A total of 101 patients with advanced solid cancer agreed to participate in the study. The primary endpoint was the rate of completion of Physician Orders for Life-Sustaining Treatment based on a doctor’s suggestion. Written interviews were conducted to understand the perceptions and factors influencing patients’ decisions. Of the 101 patients, 72 (71.3%) agreed to prepare Physician Orders for Life-Sustaining Treatment. Patients who had an educational level of high school or higher were more likely to agree to complete Physician Orders for Life-Sustaining Treatment documentation as compared to the lower educational status group. More than half of the respondents who completed Physician Orders for Life-Sustaining Treatment documentation reported that they had more than a fair understanding of “life-sustaining care” or “Physician Orders for Life-Sustaining Treatment.” Participants’ reasons for Physician Orders for Life-Sustaining Treatment completion were diverse. We found that highly educated patients, who understood the concept behind the policy well, tended to accept Physician Orders for Life-Sustaining Treatment without hesitation. Better education, information shared through the media, and conversations with health care providers might improve understanding of Physician Orders for Life-Sustaining Treatment in patients with cancer.

    更新日期:2019-11-28
  • Efficacy and cost-utility of the eHealth application ‘Oncokompas’, supporting patients with incurable cancer in finding optimal palliative care, tailored to their quality of life and personal preferences: a study protocol of a randomized controlled trial
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-10-23
    Anouk S. Schuit; Karen Holtmaat; Nienke Hooghiemstra; Femke Jansen; Birgit I. Lissenberg-Witte; Veerle M. H. Coupé; Myra E. van Linde; Annemarie Becker-Commissaris; Jaap C. Reijneveld; Josée M. Zijlstra; Dirkje W. Sommeijer; Simone E. J. Eerenstein; Irma M. Verdonck-de Leeuw

    Patients with incurable cancer have to deal with a wide range of symptoms due to their disease and treatment, influencing their quality of life. Nowadays, patients are expected to adopt an active role in managing their own health and healthcare. Oncokompas is an eHealth self-management application developed to support patients in finding optimal palliative care, tailored to their quality of life and personal preferences. A randomized controlled trial will be carried out to determine the efficacy and cost-utility of Oncokompas compared to care as usual. 136 adult patients with incurable lung, breast, colorectal and head and neck cancer, lymphoma and glioma, will be included. Eligible patients have no curative treatment options and a prognosis of at least three months. Patients will be randomly assigned to the intervention group or the control group. The intervention group directly has access to Oncokompas alongside care as usual, while the waiting list control group receives care as usual and will have access to Oncokompas after three months. The primary outcome measure is patient activation, which can be described as a patient’s knowledge, skills and confidence to manage his or her own health and healthcare. Secondary outcome measures comprise self-efficacy, health-related quality of life, and costs. Measures will be assessed at baseline, two weeks after randomization, and three months after the baseline measurement. This study will result in knowledge on the efficacy and cost-utility of Oncokompas among patients with incurable cancer. Also, more knowledge will be generated into the need for and costs of palliative care from a societal and healthcare perspective. Netherlands Trial Register identifier: NTR 7494 . Registered on 24 September 2018.

    更新日期:2019-11-28
  • A screen-based simulation training program to improve palliative care of people with advanced dementia living in residential aged care facilities and reduce hospital transfers: study protocol for the IMproving Palliative care Education and Training Using Simulation in Dementia (IMPETUS-D) cluster randomised controlled trial
    BMC Palliat. Care (IF 2.922) Pub Date : 2019-10-23
    Joanne Tropea; Christina E. Johnson; Debra Nestel; Sanjoy K. Paul; Caroline A. Brand; Anastasia F. Hutchinson; Ross Bicknell; Wen Kwang Lim

    Many people with advanced dementia live in residential aged care homes. Care home staff need the knowledge and skills to provide high-quality end-of-life (EOL) dementia care. However, several studies have found EOL dementia care to be suboptimal, and care staff have reported they would benefit from training in palliative care and dementia. Simulation offers an immersive learning environment and has been shown to improve learners’ knowledge and skills. However, there is little research on simulation training for residential care staff. This article presents the development and evaluation protocol of IMproving Palliative care Education and Training Using Simulation in Dementia (IMPETUS-D) - a screen-based simulation training program on palliative dementia care, targeted at residential care staff. IMPETUS-D aims to improve the quality of palliative care provided to people living with dementia in residential care homes, including avoiding unnecessary transfers to hospital. A cluster RCT will assess the effect of IMPETUS-D. Twenty-four care homes (clusters) in three Australian cities will be randomised to receive either the IMPETUS-D intervention or usual training opportunities (control). The primary outcome is to reduce transfers to hospital and deaths in hospital by 20% over 6-months in the intervention compared to the control group. Secondary outcomes include uptake of goals of care plans over 6 and 12 months, change in staff knowledge and attitudes towards palliative dementia care over 6 months, change in transfers to hospital and deaths in hospital over 12 months. For the primary analysis logistic regression models will be used with standard errors weighted by the cluster effects. A mixed methods process evaluation will be conducted alongside the cluster RCT to assess the mechanisms of impact, the implementation processes and contextual factors that may influence the delivery and effects of the intervention. In Australia, the need for high-quality advanced dementia care delivered in residential aged care is growing. This study will assess the effect of IMPETUS-D a new simulation-based training program on dementia palliative and EOL care. This large multisite trial will provide robust evidence about the impact of the intervention. If successful, it will be distributed to the broader residential care sector. ANZCTR, ACTRN12618002012257 . Registered 14 December 2018.

    更新日期:2019-11-28
Contents have been reproduced by permission of the publishers.
导出
全部期刊列表>>
2020新春特辑
限时免费阅读临床医学内容
ACS材料视界
科学报告最新纳米科学与技术研究
清华大学化学系段昊泓
自然科研论文编辑服务
加州大学洛杉矶分校
上海纽约大学William Glover
南开大学化学院周其林
课题组网站
X-MOL
北京大学分子工程苏南研究院
华东师范大学分子机器及功能材料
中山大学化学工程与技术学院
试剂库存
天合科研
down
wechat
bug