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1.
  • Baxter, Rebecca, 1989-, et al. (författare)
  • Core elements of serious illness conversations : an integrative systematic review
  • 2023
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368.
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Ariadne Labs' Serious Illness Care Program (SICP), inclusive of the Serious Illness Conversation Guide (SICG), has been adapted for use in a variety of settings and among diverse population groups. Explicating the core elements of serious illness conversations could support the inclusion or exclusion of certain components in future iterations of the programme and the guide.Aim: This integrative systematic review aimed to identify and describe core elements of serious illness conversations in relation to the SICP and/or SICG.Design: Literature published between 1 January 2014 and 20 March 2023 was searched in MEDLINE, PsycINFO, CINAHL and PubMed. All articles were evaluated using the Joanna Briggs Institute Critical Appraisal Guidelines. Data were analysed with thematic synthesis.Results: A total of 64 articles met the inclusion criteria. Three themes were revealed: (1) serious illness conversations serve different functions that are reflected in how they are conveyed; (2) serious illness conversations endeavour to discover what matters to patients and (3) serious illness conversations seek to align what patients want in their life and care.Conclusions: Core elements of serious illness conversations included explicating the intention, framing, expectations and directions for the conversation. This encompassed discussing current and possible trajectories with a view towards uncovering matters of importance to the patient as a person. Preferences and priorities could be used to inform future preparation and recommendations. Serious illness conversation elements could be adapted and altered depending on the intended purpose of the conversation.
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2.
  • Beaussant, Y, et al. (författare)
  • Hospital end-of-life care in haematological malignancies
  • 2018
  • Ingår i: BMJ supportive & palliative care. - : BMJ. - 2045-4368 .- 2045-435X. ; 8:3, s. 314-324
  • Tidskriftsartikel (refereegranskat)abstract
    • To investigate patterns of care during the last months of life of hospitalised patients who died from different haematological malignancies.MethodsNationwide register-based study, including all hospitalised adults ≥20 years who died from haematological malignancies in France in 2010–2013. Outcomes included use of invasive cancer treatments and referral to palliative care. Percentages are adjusted for sex and age using direct standardisation.ResultsOf 46 629 inpatients who died with haematological malignancies, 24.5% received chemotherapy during the last month before death, 48.5% received blood transfusion, 12.3% were under invasive ventilation and 18.1% died in intensive care units. We found important variations between haematological malignancies. The use of chemotherapy during the last month of life varied from 8.6% among patients with chronic myeloid leukaemia up to 30.1% among those with non-Hodgkin’s lymphoma (P<0.001). Invasive ventilation was used in 10.2% of patients with acute leukaemia but in 19.0% of patients with Hodgkin’s lymphoma (P<0.001). Palliative status was reported 30 days before death in only 14.8% of patients, and at time of death in 46.9% of cases. Overall, 5.5% of haematology patients died in palliative care units.ConclusionA high proportion of patients who died from haematological malignancies receive specific treatments near the end of life. There is a need for a better and earlier integration of the palliative care approach in the standard practice of haematology. However, substantial variation according to the type of haematological malignancy suggests that the patients should not be considered as one homogeneous group. Implementation of palliative care should account for differences across haematological malignancies.
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3.
  • Bjorkhem-Bergman, L, et al. (författare)
  • Vitamin D and patients with palliative cancer
  • 2016
  • Ingår i: BMJ supportive & palliative care. - : BMJ. - 2045-4368 .- 2045-435X. ; 6:3, s. 287-291
  • Tidskriftsartikel (refereegranskat)
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5.
  • Fritzson, Anna, et al. (författare)
  • Association between parenteral fluids and symptoms in hospital end-of-life care : an observational study of 280 patients
  • 2015
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 5:2, s. 160-168
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVES: To investigate whether dying patients receiving parenteral fluids (PF) suffer from more or less symptoms than patients who do not receive PF. Today's evidence on how PF affects palliative patients' symptoms is very scarce. Nevertheless, 40% of the patients who die expectedly in Swedish hospitals receive PF during their last 24 h of life.METHODS: A historical cohort study of medical records was performed. Of the 530 patients who were reported to have died expectedly at hospital in Västerbotten county (Sweden) between 1 January 2011 and 30 June 2012, 140 cases who had received PF and 140 controls who had not received PF were identified by stratified randomisation and matched by age, sex and main disease. The groups were compared regarding documented presence of dyspnoea, respiratory secretions, anxiety, nausea and confusion during the last 24 h and the last week of life.RESULTS: The prevalence of documented dyspnoea in the PF groups was higher than in the non-PF groups (51% vs 22% last 24 h, p<0.0001; 70% vs 45% last 7 days, p<0.001). The proportions of patients suffering from dyspnoea increased with larger administered volume. Although our main hypothesis--that the prevalence of respiratory secretions would be higher in the PF group--was not confirmed, we found a tendency in that direction (63% vs 50% last week, p=0.072). No clinically significant differences in anxiety, nausea or confusion were found.CONCLUSIONS: There is an association between PF administration and increased frequency of documented dyspnoea for terminally ill patients in their last week of life.
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6.
  • Goodrose-Flores, C, et al. (författare)
  • High-protein compared with standard parenteral nutrition in palliative cancer care
  • 2022
  • Ingår i: BMJ supportive & palliative care. - : BMJ. - 2045-4368 .- 2045-435X. ; 12:3, s. 332-338
  • Tidskriftsartikel (refereegranskat)abstract
    • High-protein parenteral nutrition (PN) has been developed to counteract muscle loss in patients with cancer treated with PN. Nevertheless, it is not clear if high-protein PN is as safe as standard PN in patients with palliative cancer. Our primary aim was to compare the proportion of patients with elevated liver enzymes between high-protein and standard PN in patients with palliative cancer enrolled to Medical Home Care. Our secondary aim was to compare the two treatments with regard to weight and albumin levels during treatment.MethodsMedical records from 2016 to 2018 were retrospectively reviewed to identify palliative cancer patients that had received PN for more than 3 weeks. Data on weight, height, albumin, liver enzymes, socioeconomic factors and dietitian consultations were collected at baseline and after 3–8 weeks of PN treatment. The odds of having elevated liver enzymes or having a maintained weight and/or stable albumin levels were calculated using logistic regression.Results20 patients treated with high-protein PN were compared with 104 patients treated with standard PN. Patients treated with high-protein PN had a significantly higher weight at follow-up compared with patients treated with standard PN (p<0.05). There was no significant difference in the proportion of patients with elevated liver enzymes (OR 0.20; 95% CI 0.02 to 1.86), or maintained weight and/or albumin levels (OR 1.62; 95% CI 0.46 to 5.76) between high-protein and standard PN.ConclusionHigh-protein PN was as safe, and at least as effective, as standard PN to patients with palliative cancer.
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7.
  • Hanchanale, Sarika, et al. (författare)
  • Conference presentation in palliative medicine : Predictors of subsequent publication
  • 2018
  • Ingår i: BMJ Supportive and Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 8:1, s. 73-77
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives Concerns have been raised about poor-quality palliative care research and low publication rate from conference abstracts. The study objectives: to estimate the publication rate for European Association for Palliative Care research conference abstracts (2008) and explore associated characteristics and to understand reasons for non-publication. Methods Full published papers were searched to March 2015 (Medline; Pubmed; Google Scholar) and data extracted: country of origin, study design/population/topic. Multivariate logistic regression was used to identify predictors of publication. Members of two different palliative care associations were surveyed to understand reasons for non-publication. Ï ‡ 2 statistic was used to explore associations with publication. Results Overall publication rate of the 445 proffered abstracts was 57%. In the final model, publication was more likely for oral presentations (OR 2.13; 95% CI 1.28 to 3.55; P=0.003), those from Europe (3.24; 1.09 to 9.56; P=0.033) and much less likely for non-cancer topics (0.21; 0.07 to 0.64; P=0.006). Funding status, academic unit or study design were not associated with publication. Survey 407/1546 (26.3%) physicians responded of whom 254 (62%) had submitted a conference abstract. Full publication was associated with: oral presentation (P<0.001), international conference abstracts (P=0.01) and academic clinicians versus clinicians (P<0.001). Reasons for non-publication included: low priority for workload (53%) and time constraints (43%). Conclusions The publication rate was similar to 2005 clinical conference. Probable quality markers were associated with publication: oral presentations selected by conference committee, international conference abstracts and abstracts from those with an academic appointment. Publication was given a low priority among clinical time pressures.
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  • Henoch, Ingela, 1956, et al. (författare)
  • Patients’, family members’ and healthcare staffs’ opinions about existential issues as a base for an educational intervention
  • 2011
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-4368 .- 2045-435X. ; 1:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective To explore patients', family members' and healthcare staff's opinions about existential issues important to patients with cancer and their relatives. Methods Two integrative literature reviews were conducted about existential issues among cancer patients and relatives, and interventions to meet these issues. Four focus groups were conducted with healthcare staff working with cancer patients at different stages about patients' existential issues, and staff's responsibility when existential issues are raised. Results In the patient review, existential issues were divided into two themes: struggle to maintain self-identity and threats to self-identity. Relatives' existential issues concerned living both in and beyond the presence of death, with reminders of death, compelling them to respond to life close to death and seek support. Few interventions directed to patients or relatives applicable to everyday healthcare practice were found. Focus groups with staff revealed four categories of patients' existential issues, life and death, meaning, freedom of choice, relationships and solitude. According to staff, their responsibility concerned achieving an encounter with the patient. Conclusion Results from three studies are congruent in that, patients, relatives and staff agree, although in different ways, about the importance of existential issues to patients and relatives. Healthcare staff was aware of the importance of existential issues and are to some extent confident about how to act when these issues are raised by the patients. Ongoing studies The project group now continues implementing findings from these studies in an educational intervention to healthcare staff in different settings, and planning interventions to patients and relatives.
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10.
  • Johnson, Miriam J., et al. (författare)
  • No excess harms from sustained-release morphine : A randomised placebo-controlled trial in chronic breathlessness
  • 2020
  • Ingår i: BMJ Supportive and Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 10:4, s. 421-428
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives: We aimed to identify and evaluate: (1) treatment-emergent adverse events (TEAE (worse or new since baseline)) and the subgroup of severe TEAEs in a placebo-controlled 7-day randomised trial of regular, low-dose, sustained-release oral morphine for chronic breathlessness and (2) clinical characteristics associated with TEAE. Methods: Safety analysis of trial data. Adults with chronic breathlessness (modified Medical Research Council breathlessness score ≥2) due to heart or lung disease, or cancer, not on regular opioids were eligible. Symptoms associated with opioids (TEAE of special interest) were systematically sought using Common Terminology Criteria for Adverse Events (CTCAE) grading. Other harms could be reported at any time. The relationship between characteristics and presence of ≥1 TEAE of special interest was explored using univariable logistic regression analyses. Results: 1449/5624 (26%) Adverse Events from 279 participants were TEAE of which 150/1449 (10%) were severe (CTCAE grades 3-5). 1086/5624 (75%) were events of special interest of which 41/1086 (4%) were severe. Compared with placebo, morphine was not associated with more TEAE or severe TEAE of special interest (TEAE: OR 0.53, 95% CI 0.21 to 1.38, p=0.20; severe TEAE: OR 0.96, 95% CI 0.27 to 3.41, p=0.95) nor with CTCAE severity grade (χ2=4.39, p=0.50). Among the 26/150 (17%) with severe TEAEs, study withdrawal was more common in the morphine arm (18/26 (69%) morphine arm; 8/26 (30%) placebo arm). None of the severe TEAEs was a respiratory harm. Conclusions: Severe morphine-associated toxicity was uncommon and not associated with study arm. Clinical consequences were minor and self-limiting.
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12.
  • Kennedy, Catriona, et al. (författare)
  • Diagnosing dying : an integrative literature review
  • 2014
  • Ingår i: BMJ Supportive & Palliative Care. - London : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368.
  • Tidskriftsartikel (refereegranskat)abstract
    • Background To ensure patients and families receive appropriate end-of-life care pathways and guidelines aim to inform clinical decision making. Ensuring appropriate outcomes through the use of these decision aids is dependent on timely use. Diagnosing dying is a complex clinical decision, and most of the available practice checklists relate to cancer. There is a need to review evidence to establish diagnostic indicators that death is imminent on the basis of need rather than a cancer diagnosis.Aim To examine the evidence as to how patients are judged by clinicians as being in the final hours or days of life.Design Integrative literature review.Data sources Five electronic databases (2001–2011): Cochrane Central Register of Controlled Trials (CENTRAL) on The Cochrane Library, MEDLINE, EMBASE, PsycINFO and CINAHL. The search yielded a total of 576 hits, 331 titles and abstracts were screened, 42 papers were retrieved and reviewed and 23 articles were included.Results Analysis reveals an overarching theme of uncertainty in diagnosing dying and two subthemes: (1) ‘characteristics of dying’ involve dying trajectories that incorporate physical, social, spiritual and psychological decline towards death; (2) ‘treatment orientation’ where decision making related to diagnosing dying may remain focused towards biomedical interventions rather than systematic planning for end-of-life care.Conclusions The findings of this review support the explicit recognition of ‘uncertainty in diagnosing dying’ and the need to work with and within this concept. Clinical decision making needs to allow for recovery where that potential exists, but equally there is the need to avoid futile interventions.
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14.
  • Kwong, Ming Hong, et al. (författare)
  • Integrative oncology in cancer care - implementation factors: mixed-methods systematic review
  • 2023
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ PUBLISHING GROUP. - 2045-435X .- 2045-4368.
  • Forskningsöversikt (refereegranskat)abstract
    • BackgroundIntegrative oncology (IO) appears to be beneficial to patients with cancer, but its implementation remains a challenge. Guided by the Theoretical Domains Framework (TDF) and the Capability-Opportunity-Motivation-Behaviour (COM-B) model, this systematic review identified the barriers to and facilitators of IO implementation in conventional cancer care settings. MethodsWe searched eight electronic databases from their inception until February 2022 for qualitative, quantitative or mixed-methods empirical studies reporting the implementation outcomes for IO services. Critical appraisal approach was tailored according to study types. The identified implementation barriers and facilitators were mapped onto TDF domains and the COM-B model, and subsequently onto the behavioural change wheel (BCW) for formulating behavioural change interventions. ResultsWe included 28 studies (11 qualitative, 6 quantitative, 9 mixed-methods and 2 Delphi studies) of satisfied methodological quality. The main implementation barriers were the lack of IO knowledge, the absence of funding and healthcare professionals low level of IO receptiveness. The key implementation facilitators were the dissemination of evidence on IO clinical benefits, the equipping of professionals with IO service delivery skills and the provision of a supportive organisational climate. ConclusionMultifaceted implementation strategies are needed to address the determinants influencing IO service delivery. Based on our BCW-based analysis of the included studies, the key behavioural change techniques are: (1) educating healthcare professionals about the value and application of traditional and complementary medicine; (2) ensuring access to actionable clinical evidence on IO effectiveness and safety and (3) designing guidelines on communicating traditional and complementary medicine interventions with patients and caregivers for biomedically trained doctors and nurses.
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15.
  • La Russa, Mariaclelia, et al. (författare)
  • Assessment of palliative care training in gynaecological oncology : a survey among European Network of Young Gynae-Oncologists (ENYGO) members
  • 2020
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368.
  • Tidskriftsartikel (refereegranskat)abstract
    • INTRODUCTION: Palliative care is an important aspect of gynaecological oncology practice. In order to successfully integrate end-of-life (EOL) care in the disease trajectory, it is crucial to incorporate systematic training in subspecialty programmes in gynaecological oncology. We aimed to evaluate the quality of training in palliative care across gynaecological oncology fellows in Europe and to provide a framework to facilitate learning opportunities.METHODS: A web-based questionnaire was sent to members of the European Network of Young Gynae-Oncologists (ENYGO). The survey consisted of 36 items covering six domains: respondents' characteristics, quality and quantity of teaching, curriculum achievements, observation and feedback, EOL clinical practice and attitudes about palliative care.RESULTS: Of the 703 clinicians enrolled in the study, 142 responded (20.2%). Although the majority worked in university hospitals, only half of them (47%) were in a formal subspecialty programme. The majority of respondents (60%) were trained without a mandatory rotation in palliative care units and considered the quality of EOL care teaching as 'very poor' or 'poor' (57.7%). The majority of respondents (71.6%) did not receive any supervision or feedback at the time of their first consultation on changing the goals of care.CONCLUSION: Our study underlines lack of structured teaching and supervision in palliative care contents among European fellows in gynaecological oncology. Broad education of healthcare providers is a key factor to achieve the integration of palliative care in gynaecological oncology practice. Stakeholders like European Society of Gynaecological Oncology/ENYGO play an important role to facilitate educational activities and training programmes targeting to EOL care.
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16.
  • Lind, Susanne, 1962-, et al. (författare)
  • Quality indicators for palliative and end of life care : a review of Swedish policy documents
  • 2013
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 3:2, s. 174-180
  • Tidskriftsartikel (refereegranskat)abstract
    • Background All patients with palliative and end of life care needs should be guaranteed equal and safe treatment and care, regardless of their disease or site of care. The inclusion of quality indicators in national guidelines and other guiding documents supports quality assurance and improvement in provision of care. The aim of this paper was to review existing quality indicators in national Swedish policy documents relevant to palliative and end of life care.Methods We reviewed existing guidelines for diseases expected to require palliative care issued by the National Board of Health and Welfare, existing regional clinical practice guidelines and the annual report of the Swedish Register of Palliative Care (SRPC) up until 2010.Results We found 11 quality indicators pertinent to palliative and end of life care in the guidelines for cancer diseases and ‘The care and nursing of the elderly’. The indicators included assessment and treatment of pain, communication with the patient and the family, documentation in the patient record and registration in the SRPC. In the national guidelines for cardiology, pulmonary diseases, stroke, diabetes and dementia, there were no indicators relevant for palliative or end of life care.Conclusions In the existing Swedish national guidelines for many different diseases, there is still a great need to define clinically relevant and feasible outcome measures of quality of palliative and end of life care.
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17.
  • Lind, Susanne, 1962-, et al. (författare)
  • Quality indicators for palliative and end of life care : a review of Swedish policy documents
  • 2013
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 3:2, s. 174-180
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: All patients with palliative and end of life care needs should be guaranteed equal and safe treatment and care, regardless of their disease or site of care. The inclusion of quality indicators in national guidelines and other guiding documents supports quality assurance and improvement in provision of care. The aim of this paper was to review existing quality indicators in national Swedish policy documents relevant to palliative and end of life care.METHODS: We reviewed existing guidelines for diseases expected to require palliative care issued by the National Board of Health and Welfare, existing regional clinical practice guidelines and the annual report of the Swedish Register of Palliative Care (SRPC) up until 2010.RESULTS: We found 11 quality indicators pertinent to palliative and end of life care in the guidelines for cancer diseases and 'The care and nursing of the elderly'. The indicators included assessment and treatment of pain, communication with the patient and the family, documentation in the patient record and registration in the SRPC. In the national guidelines for cardiology, pulmonary diseases, stroke, diabetes and dementia, there were no indicators relevant for palliative or end of life care.CONCLUSIONS: In the existing Swedish national guidelines for many different diseases, there is still a great need to define clinically relevant and feasible outcome measures of quality of palliative and end of life care.
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18.
  • Lind, Susanne, et al. (författare)
  • Quality indicators for palliative and end of life care : a review of Swedish policy documents
  • 2015
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 5:4, s. 413-419
  • Tidskriftsartikel (refereegranskat)abstract
    • Background All patients with palliative and end of life care needs should be guaranteed equal and safe treatment and care, regardless of their disease or site of care. The inclusion of quality indicators in national guidelines and other guiding documents supports quality assurance and improvement in provision of care. The aim of this paper was to review existing quality indicators in national Swedish policy documents relevant to palliative and end of life care. Methods We reviewed existing guidelines for diseases expected to require palliative care issued by the National Board of Health and Welfare, existing regional clinical practice guidelines and the annual report of the Swedish Register of Palliative Care (SRPC) up until 2010. Results We found 11 quality indicators pertinent to palliative and end of life care in the guidelines for cancer diseases and The care and nursing of the elderly'. The indicators included assessment and treatment of pain, communication with the patient and the family, documentation in the patient record and registration in the SRPC. In the national guidelines for cardiology, pulmonary diseases, stroke, diabetes and dementia, there were no indicators relevant for palliative or end of life care. Conclusions In the existing Swedish national guidelines for many different diseases, there is still a great need to define clinically relevant and feasible outcome measures of quality of palliative and end of life care.
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19.
  • Lindqvist, Olav, et al. (författare)
  • Opening the doors a crack wider : palliative care research data in the public domain
  • 2016
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 6:1, s. 113-115
  • Tidskriftsartikel (refereegranskat)abstract
    • This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research. We here describe an innovative methodological approach to generating data; put data relevant for PC research in the public domain; and raise issues about open access in PC research. We aimed to compile research questions from different disciplines, based on raw data consisting of approximately 1000 descriptions of non-pharmacological caregiving activities (NPCAs), generated through previous research. 53 researchers from different fields were sent the full list of NPCAs and asked to generate research questions from their disciplinary perspective. Responses were received from 32 researchers from 9 countries, generating approximately 170 research topics, questions, reflections and ideas, from a wide variety of perspectives, which are presented here. Through these data, issues related to death and dying are addressed in several ways, in line with a new public health approach. By engaging a broader group of disciplines and facilitating availability of data in the public domain, we hope to stimulate more open dialogue about a wider variety of issues related to death and dying. We also introduce an innovative methodological approach to data generation, which resulted in a response rate at least equivalent to that in our Delphi survey of professionals in OPCARE9.
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21.
  • Lynøe, Niels, et al. (författare)
  • Rawlsian reasoning about fairness at the end of life
  • 2023
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 13:e3, s. e1398-e1404
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVES: The aim of this study was to discuss end-of-life care in the context of Rawls' and Daniels' philosophy of justice. The study is based on an empirical survey of Swedish physicians who were asked whether they would want the option of physician-assisted suicide (PAS) for themselves (hereafter called own preferences), what are their attitudes towards PAS in general and whether they were prepared to prescribe PAS drugs to eligible patients. The question is to what extent the physicians' answers are impartial and consistent in a Rawlsian sense.METHODS: The underlying indicator was the physicians' own preferences. Kappa score inter-rater agreement was measured between that response and that same physician's general attitude towards allowing PAS and preparedness to prescribe PAS drugs. The coherence of provided comments and arguments were analysed using content analysis.RESULTS: Palliative care physicians are the least willing to offer PAS, and surgeons and psychiatrist the most willing. There is a discrepancy between physicians' general attitudes about allowing PAS, their own wishes to be offered PAS at the end of life and the concrete action of prescribing PAS drugs. Arguments given for not prescribing PAS by those in favour of PAS are seemingly but not truly inconsistent.CONCLUSIONS: Those supporting PAS provided impartial and consistent arguments for their stances in a Rawlsian sense, while those against PAS provided partial arguments. Two specialties, psychiatrists and palliative care physicians, were coherent in their reasoning about PAS for themselves and their willingness to prescribe the needed drugs.
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22.
  • Markgren, Rickard, et al. (författare)
  • Impacts of person-centred integrated chronic heart failure and palliative home care on pharmacological heart failure treatment : a substudy of a randomised trial
  • 2019
  • Ingår i: BMJ Supportive & Palliative Care. - London : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 9:1
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: Patients with chronic heart failure (CHF) may be insufficiently treated pharmacologically. Recently, we presented a person-centred integrated Palliative advanced homecaRE and heart FailurE caRe (PREFER) strategy and compared it with usual care (control). Patients managed according to PREFER had improved health-related quality of life and markedly reduced hospitalisations compared with the control group. We hypothesised that these improvements may have been partly due to better drug treatments within the PREFER strategy. Thus, our aim in this study was to explore the management of drug treatments in the PREFER group compared with the control group.METHODS: Doses and numbers of drugs and the number of patients receiving the target doses based on current guidelines were measured and compared between the groups at the start and finish of the study.RESULTS: The percentages of ACE inhibitors (ACEIs) or mineralocorticoid receptor antagonists (MRAs) increased, while loop diuretics decreased in the PREFER arm during the study, although the differences were not significant. Beta-receptor blockers (BBs) decreased somewhat in both groups. The number of patients treated with MRAs differed the most between groups, and increased from 10 (28%) to 15 (48%) in the PREFER arm compared with 13 (35%) vs 13 (39%) in the control group. The change in patients receiving full target doses (+8 vs. +1) of the ACEIs/angiotensin receptor blockers, BBs and MRAs were significantly higher (p=0009) in the PREFER arm than in the control arm.CONCLUSIONS: Person-centred integrated care of patients with severe CHF was associated with increased evidence-based drug treatments, especially MRAs.CLINICAL TRIAL NUMBER: NCT01304381.
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23.
  • Martinsson, Lisa, et al. (författare)
  • Increasing the number of patients receiving information about transition to end-of-life care : the effect of a half-day physician and nurse training
  • 2016
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 6:4, s. 452-458
  • Tidskriftsartikel (refereegranskat)abstract
    • Introduction: Honest prognostication and information for patients are important parts of end-of-life care. This study examined whether an educational intervention could increase the proportion of patients who received information about the transition to end-of-life (ITEOL care).Method: Two municipalities (in charge of nursing homes) and two hospitals were randomised to receive an interactive half-day course about ITEOL for physicians and nurses. The proportion of patients who received ITEOL was measured with data from the Swedish Register of Palliative Care (SRPC). Patients were only included if they died an expected death and maintained their ability to express their will until days or hours before their death. Four hospitals and four municipalities were assigned controls, matched by hospital size, population and proportion of patients receiving ITEOL at baseline.Results: The proportion of patients in the intervention group who received ITEOL increased from 35.1% (during a 6-month period before the intervention) to 42% (during a 6-month period after the intervention). The proportion in the control group increased from 30.4% to 33.7%. The effect of the intervention was significant (p=0.005) in a multivariable model adjusted for time, age, gender and cause of death.Conclusion: More patients at end-of-life received ITEOL after an educative half-day intervention directed to physicians and nurses.
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24.
  • Martinsson, Lisa, et al. (författare)
  • Symptom assessment in the dying : family members versus healthcare professionals
  • 2023
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368.
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives: Symptom management and support of the family members (FMs) are consideredessential aspects of palliative care. During end of life, patients are often not able to self-reportsymptoms. There is little knowledge in the literature of how healthcare professionals(HCPs) assess symptoms compared with FMs.The objective was to compare the assessment ofsymptoms and symptom relief during the final week of life between what was reported by FMsand what was reported by HCPs.Methods: Data from the Swedish Register of Palliative Care from 2021 and 2022 were usedto compare congruity of the assessments by the FMs and by HCPs regarding occurrence and reliefof three symptoms (pain, anxiety and confusion), using Cohen’s kappa.Results: A total of 1131 patients were included. The agreement between FMs and HCPs was poorfor occurrence of pain and confusion (kappa 0.25 and 0.16), but fair for occurrence of anxiety(kappa 0.30). When agreeing on a symptom being present, agreement on relief of thatsymptom was poor (kappa 0.04 for pain, 0.10 for anxiety and 0.01 for confusion). The trendwas that HCPs more often rated occurrence of pain and anxiety, less often occurrence ofconfusion and more often complete symptom relief compared with the FMs.Conclusions: The views of FMs and HCPs of the patients’ symptoms differ in the end-of-life context, but both report important information and their symptom assessments should beconsidered both together and individually. More communication between HCPs and FMs couldprobably bridge some of these differences.
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25.
  • Nilsson, Stefan, 1972, et al. (författare)
  • Paediatric palliative care: a systematic review.
  • 2020
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-4368 .- 2045-435X. ; 10:2
  • Forskningsöversikt (refereegranskat)abstract
    • To review literature relating to evidence, context and facilitation to describe knowledge translation in paediatric palliative care. Paediatric palliative care requires competences including both paediatric specialists as well as services that are developed for this purpose, and there is a need to facilitate paediatric palliative care knowledge translation. Promoting Action on Research Implementation in the Health Services (PARiHS) is a framework for knowledge translation, which highlights the relationships between evidence, context and facilitation. PARiHS framework has been revised and updated in a new version called i-PARiHS.The electronic databases AgeLine, CINAHL, The Cochrane Library, PsycINFO, PubMed and Scopus were searched. Papers included were limited to English and Swedish publications and restricted to publications dated between 1993 and August 2019. All types of observational and experimental studies using any research design were included.Thirty-eight articles were included and there was a common vision about how and when palliative care should be offered to children. The i-PARiHS was used as a lens to describe the knowledge translation in paediatric palliative care. Symptom relief was the most commonly described evidence-based strategy, and the hospital environment was the most commonly described context. Different types of education were the most commonly used strategies to facilitate knowledge translation. The results mainly focused on increasing knowledge of palliative care in paediatric care. To sum up, the results report strategies to achieve knowledge translation of paediatric palliative care, and these can be interpreted as a guideline for how this process can be facilitated.CRD42018100663.
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26.
  • O'Sullivan, Anna, et al. (författare)
  • Place of care and death preferences among recently bereaved family members : A cross-sectional survey
  • 2024
  • Ingår i: BMJ Supportive & Palliative Care. - 2045-435X .- 2045-4368.
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVES: The aim was: (1) to investigate preferred place for end-of-life care and death for bereaved family members who had recently lost a person with advanced illness and (2) to investigate associations between bereaved family members' preferences and individual characteristics, health-related quality of life, as well as associations with their perception of the quality of care that the ill person had received, the ill person's preferred place of death and involvement in decision-making about care.METHODS: A cross-sectional survey with bereaved family members, employing descriptive statistics and multinominal logistic regression analyses.RESULTS: Of the 485 participants, 70.7% were women, 36.1% were ≥70 years old, 34.5% were partners and 51.8% were children of the deceased. Of the bereaved family members, 52% preferred home for place of end-of-life care and 43% for place of death. A higher likelihood of preferring inpatient palliative care was associated with being female and having higher education, whereas a lower likelihood of preferring a nursing home for the place of care and death was associated with higher secondary or higher education. Partners were more likely to prefer hospital for place of care and nursing home for place of death.CONCLUSIONS: Home was the most preferred place for end-of-life care and death. Bereaved people's experiences of end-of-life care may impact their preferences, especially if they had a close relationship, such as a partner who had a higher preference for nursing home and hospital care. Conversations about preferences for the place of care and death considering previous experience are encouraged.
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27.
  • Pedersen, K, et al. (författare)
  • Tactile massage reduces rescue doses for pain and anxiety: an observational study
  • 2018
  • Ingår i: BMJ supportive & palliative care. - : BMJ. - 2045-4368 .- 2045-435X. ; 8:1, s. 30-33
  • Tidskriftsartikel (refereegranskat)abstract
    • The aim of this study was to evaluate the effect of tactile massage (TM) on palliative care patients.MethodAn observational study at a hospice ward in Sweden was carried out. Forty-one palliative patients were offered TM, at an average of three treatments per patient. Before and after every treatment, self-assessed pain, well-being and anxiety according to the Edmonton Symptom Assessment Scale (0–10) were recorded. In addition, the number of rescue doses for pain and anxiety was monitored 24 hours before and after the treatment and in two consecutive days before the patients were offered TM (control data).ResultsTM resulted in improvement of self-assessed pain by 1.7 points (SD 1.6), anxiety by 2.3 points (SD 2.0) and well-being by 2.6 points (SD 1.4). The number of rescue doses for pain was reduced from 1.6 to 0.84 doses/patient (P<0.001) and for anxiety from 0.52 to 0.24 doses/patient (P<0.01). The number of rescue doses was not changed in the same patients in two consecutive days before the patients were offered TM. The effect was evident already after the first treatment and did not increase further with repeated treatments. No patients reported any harmful effects of the treatment.ConclusionTM reduced the need for administration of rescue doses for pain and anxiety and improved well-being in palliative care patients. Larger randomised studies with parallel control groups are needed to confirm the findings from this observational pilot study.
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28.
  • Rasch-Westin, M, et al. (författare)
  • Death at home: predictive factors in a medical home care unit
  • 2019
  • Ingår i: BMJ supportive & palliative care. - : BMJ. - 2045-4368 .- 2045-435X.
  • Tidskriftsartikel (refereegranskat)abstract
    • The aim of this study was to investigate factors predictive for ‘death at home’ for patients admitted to an advanced medical home care unit in Stockholm, Sweden, with a focus on possible gender differences. In addition, place of death in relation to the patient’s wishes was studied.MethodA retrospective review of medical records of all 456 deceased patients, 233 men and 223 women, admitted to the unit during 2017 was performed. Data on age, diagnosis, living conditions, Swedish language skills, desired place of death (if stated) and place of death were retrieved from the patients’ charts.ResultsA total of 114 of 456 patients died at home (25%). The probability of ‘death at home’ was independent of gender, age, diagnosis, living conditions and Swedish language skills. In a binary logistic regression model, the only factor significantly associated with death at home was ‘the wish to die at home’ (p<0.001). In the study population, 154 patients (34%) had expressed a preferred place of death, 116 (75%) wanted to die at home and 38 (25%) wanted to die in hospice. Of all patients who expressed a preferred place of death, 80% (n=123) had their wishes fulfilled and there were no differences between the sexes.ConclusionThis study indicates equal opportunities regarding the possibility to die at home for patients admitted to advanced medical home care. It emphasises the importance of asking patients where they want to be at the end of life, as it was the foremost prognostic factor for place of death.
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29.
  • Rasouli, Omid, et al. (författare)
  • Bereaved parents' quality of life : resilience and professional support
  • 2023
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 13, s. e1029-e1037
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVES: The study aimed to compare the quality of life (QoL) among cancer-bereaved parents with a control group and explore how resilience and support from healthcare professionals associated with QoL of parents 2-8 years after the loss of a child to cancer.METHODS: This nationwide, cross-sectional survey was administered among parents (n=161) who lost their child to cancer between 2009 and 2014, compared with a matched control parent group (n=77). A study-specific questionnaire, Resilience Scale for Adults (six factors: 'Perception of self', 'Planned future', 'Social competence', 'Structured style', 'Family cohesion' and 'Social resources'), and a single-item measure of parents' QoL were included for the study.RESULTS: There was a lower QoL in both bereaved parents (mean=5.1) compared with the control parents (mean=5.8) (p<0.001). Two resilience factors, 'Perception of self' (OR=1.8, p=0.004) and 'Planned future' (OR=2.05, p<0.001), and given sufficient information during the child's last month (OR=2.63, p=0.003) were positively associated with long-term QoL in cancer-bereaved parents.CONCLUSION: The findings indicate lower QoL among both fathers and mothers 2-8 years after losing a child to cancer. The study also highlights the positive role of resilience and the importance of informational support on long-term QoL in cancer-bereaved parents. Bereavement support should be tailored for supporting individual needs.
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30.
  • Sandgren, Anna, 1970-, et al. (författare)
  • Hospitalised patients with palliative care needs : Spain and Sweden compared
  • 2024
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 14:e1, s. E851-E859
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives This study aimed to describe and compare symptoms, care needs and types of diagnoses in hospitalised patients with palliative care needs in Spain and Sweden.Methods A cross-sectional, population-based study was carried out at two hospitals in both Spain and Sweden. Using a questionnaire, we performed 154 one-day inventories (n=4213) in Spain and 139 in Sweden (n=3356) to register symptoms, care needs and diagnoses. Descriptive analyses were used.Results The proportion of patients with care needs in the two countries differed (Spain 7.7% vs Sweden 12.4%, p<0.001); however, the percentage of patients with cancer and non-cancer patients was similar. The most prevalent symptoms in cancer and non-cancer patients in both countries were deterioration, pain, fatigue and infection. The most common cancer diagnosis in both countries was lung cancer, although it was more common in Spain (p<0.01), whereas prostate cancer was more common among Swedish men (p<0.001). Congestive heart failure (p<0.001) was a predominant non-cancer diagnosis in Sweden, whereas in Spain, the most frequent diagnosis was dementia (p<0.001). Chronic obstructive pulmonary disease was common in both countries, although its frequency was higher in Spain (p<0.05). In total, patients with cancer had higher frequencies of pain (p<0.001) and nausea (p<0.001), whereas non-cancer patients had higher frequencies of deterioration (p<0.001) and infections (p<0.01).Conclusions The similarities in symptoms among the patients indicate that the main focus in care should be on patient care needs rather than diagnoses. Integrating palliative care in hospitals and increasing healthcare professional competency can result in providing optimal palliative care.
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31.
  • Schedin, A, et al. (författare)
  • Catheter-related bloodstream infections in palliative care patients receiving parenteral nutrition by medical home care
  • 2020
  • Ingår i: BMJ supportive & palliative care. - : BMJ. - 2045-4368 .- 2045-435X.
  • Tidskriftsartikel (refereegranskat)abstract
    • Catheter-related bloodstream infections (CRBSIs) constitute a major complication associated with the use of central venous lines (CVL). The aim of this study was to investigate the incidence proportion and risk factors of CRSBI in palliative care patients with CVL receiving home parenteral nutrition (HPN).MethodsMedical records from patients admitted to a medical home care unit in stockholm, Sweden, during 2017 were reviewed (n=1022) and 454 palliative care patients with a CVL were identified. Data on CRBSI cases, HPN exposure time, type of parenteral nutrition (PN), age, diagnosis and type of CVL were collected.ResultsTwenty-nine of 143 patients receiving HPN through a CVL were diagnosed with a CRBSI (20%). Nine of 311 patients with CVL without exposure for HPN developed CRBSI (3%). The risk of a CRBSI was significantly higher in patients receiving HPN compared with those not receiving HPN, OR 8.5 (95% CI 4.0 to 18.7). For those receiving HPN six to seven times a week the risk was even higher, OR 13 (95% CI 5.1 to 30.3). The highest incidence proportion of CRBSI (31%) was found in a home care team where patients had been trained to disconnect themselves from the PN drip. Sex, cancer versus non-cancer, type of CVL or protein content in the PN, did not differ between patients that developed CRBSI versus those that did not develop the outcome.ConclusionHPN entails a high risk of CRBSI. A high frequency of PN and incautious handling of the disconnection of the drip, seem to be the most important risk factors.
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32.
  • Steel, A, et al. (författare)
  • Complementary medicine visits by palliative care patients: a cross-sectional survey
  • 2022
  • Ingår i: BMJ supportive & palliative care. - : BMJ. - 2045-4368 .- 2045-435X. ; 12:E1e1, s. E47-E58
  • Tidskriftsartikel (refereegranskat)abstract
    • The paucity of empirical research examining complementary medicine (CM) use in palliative care in France compared with other countries results in a gap in scientific knowledge. This study aims to describe the frequency and the cause of palliative care patients consulting with a CM clinician along with the conventional physicians.MethodsThis study is an observational cross-sectional survey conducted in three palliative care centres in Lyon, France, between July 2017 and May 2018: two tertiary hospitals and one palliative care unit in a private hospital. Inpatients and outpatients visiting the palliative care clinics with a primary diagnosis of cancer were invited to participate in the study. Using a 19-item paper-based survey instrument, we collected data on the participants’ personal characteristics, health service utilisation and attitudes towards CM.ResultsFrom the 138 participants meeting the inclusion criteria, 100 (72.4%) were included in the study. On average, they were 62.9 years old (SD 12.4) and the majority were women (60%). The primary cancer site was mostly colorectal (29.0%), breast (15.0%) and gynaecological (11.0%). The most commonly visited CM clinician was the aromatherapist (72.7%), recording more than six consultations (78.1%) for symptom management (21.9%). Visits to an osteopath were reported by 28.6% of patients, and 45.8% of osteopathy users reported visiting an osteopath more than six times for symptom management (62.5%). Participants visiting a naturopath (15.3%) reported less than four visits and indicated symptom management as the most common reason (76.9%).ConclusionsOur findings show a substantial proportion of palliative care patients visit CM clinicians and primarily seek symptom management from CM clinical care.
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33.
  • Szilcz, Máté, et al. (författare)
  • Unplanned hospitalisations in older people : illness trajectories in the last year of life
  • 2021
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; , s. bmjspcare-2020-002778-
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective Unplanned hospitalisations can be burdensome for older people who approach the end of life. Hospitalisations disrupt the continuity of care and often run against patients' preference for comfort and palliative goals of care. This study aimed to describe the patterns of unplanned hospitalisations across illness trajectories in the last year of life.Methods Longitudinal, retrospective cohort study of decedents, including all older adults (>= 65 years) who died in Sweden in 2015. We used nationwide data from the National Cause of Death Register linked at the individual level with several other administrative and healthcare registers. Illness trajectories were defined based on multiple-cause-of-death data to approximate functional decline near the end of life. Incidence rate ratios (IRR) for unplanned hospitalisations were modelled with zero-inflated Poisson regressions.Results In a total of 77 315 older decedents (53% women, median age 85.2 years), the overall incidence rate of unplanned hospitalisations during the last year of life was 175 per 100 patient-years. The adjusted IRR for unplanned hospitalisation was 1.20 (95%CI 1.18 to 1.21) times higher than average among decedents who followed a trajectory of cancer. Conversely, decedents who followed the trajectory of prolonged dwindling had a lower-than-average risk of unplanned hospitalisation (IRR 0.66, 95% CI 0.65 to 0.68). However, these differences between illness trajectories only became evident during the last 3 months of life.Conclusion Our study highlights that, during the last 3 months of life, unplanned hospitalisations are increasingly frequent. Policies aiming to reduce burdensome care transitions should consider the underlying illness trajectories.
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34.
  • Talabani, N., et al. (författare)
  • Patients' experiences of person-centred integrated heart failure care and palliative care at home: an interview study
  • 2020
  • Ingår i: Bmj Supportive & Palliative Care. - : BMJ. - 2045-435X .- 2045-4368. ; 10:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives Patients with severe heart failure (HF) suffer from a high symptom burden and high mortality. European and Swedish guidelines for HF care recommend palliative care for these patients. Different models for integrated palliative care and HF care have been described in the literature. No studies were found that qualitatively evaluated these models. The purpose of this study is to describe patients' experiences of a new model of person-centred integrated HF and palliative care at home. Method Interviews were conducted with 12 patients with severe HF (New York Heart Association class III(sic)nd included in the research project of Palliative advanced home caRE and heart FailurE caRe (PREFER). Qualitative content analysis was used for data analysis. Results Two themes and a total of five categories were identified. The first theme was feeling secure and safe through receiving care at home with the categories: having access to readily available care at home, being followed up continuously and having trust in the team members' ability to help. The second theme was being acknowledged as both a person and a patient, with the following two categories: being met as a person, participating in decisions about one's care and receiving help for symptoms of both HF and comorbidities. Conclusions Person-centred integrated HF and palliative care provides a secure environment and holistic care for patients with severe HF. This approach is a way to improve the care management in this population.
  •  
35.
  • van Vliet, Liesbeth M, et al. (författare)
  • Good versus bad news consultations in advanced breast cancer: the role of empathy in information recall – an observational study
  • 2024
  • Ingår i: BMJ Supportive & Palliative Care. - : BMJ Publishing Group Ltd. - 2045-435X .- 2045-4368. ; 14, s. e528-e532
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective We explored, in advanced breast cancer, whether: (1) patients recall less information following bad versus good news consultations; (2) empathy has a greater effect on recalled information following bad versus good news consultations.Methods Observational study using audio-recorded consultations. Participants’ recall of provided information about treatment options, aims/positive effects and side-effects was assessed. Clinician-expressed empathy and consultation type were determined. Regression analyses assessed associations between consultation type and recall, exploring moderating influences of clinician-expressed empathy.ResultsFor 41 consultations (18 bad news, 23 good news), recall data were completed; total recall (47% vs 73%, p=0.03) and recall about treatment options (67% vs 85%, p=0.08, trend) were significantly worse following bad news compared with good news consultations. Recall about treatment aims/positive effects (53% vs 70%, p=0.30) and side-effects (28% vs 49%, p=0.20) was not significantly worse following bad news. Empathy moderated the relationship between consultation type and total recall (p<0.01), recall about treatment options (p=0.03) and about aims/positive effects (p<0.01) but not about side-effects (p=0.10). Only following good news consultations empathy influenced recall favourably.Conclusions This explorative study suggests that in advanced cancer, information recall is especially impaired following bad news consultations, for which empathy does not improve remembered information.
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36.
  • Wallerstedt, Birgitta, et al. (författare)
  • Family members´caregiving situation in palliative home care when sitting service is received : the understanding of multiple realities
  • 2014
  • Ingår i: BMJ Supportive & Palliative Care. - : Cambridge University Press. - 2045-435X .- 2045-4368. ; 12:6, s. 425-437
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.Methods: Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregationResults: Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.Significance of the research: Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.
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37.
  •  
38.
  • O'Sullivan, Anna, et al. (författare)
  • Place of care and death preferences among recently bereaved family members: a cross-sectional survey.
  • 2024
  • Ingår i: BMJ Supportive & Palliative Care. - 2045-4368.
  • Tidskriftsartikel (refereegranskat)abstract
    • The aim was: (1) to investigate preferred place for end-of-life care and death for bereaved family members who had recently lost a person with advanced illness and (2) to investigate associations between bereaved family members' preferences and individual characteristics, health-related quality of life, as well as associations with their perception of the quality of care that the ill person had received, the ill person's preferred place of death and involvement in decision-making about care.A cross-sectional survey with bereaved family members, employing descriptive statistics and multinominal logistic regression analyses.Of the 485 participants, 70.7% were women, 36.1% were ≥70 years old, 34.5% were partners and 51.8% were children of the deceased. Of the bereaved family members, 52% preferred home for place of end-of-life care and 43% for place of death. A higher likelihood of preferring inpatient palliative care was associated with being female and having higher education, whereas a lower likelihood of preferring a nursing home for the place of care and death was associated with higher secondary or higher education. Partners were more likely to prefer hospital for place of care and nursing home for place of death.Home was the most preferred place for end-of-life care and death. Bereaved people's experiences of end-of-life care may impact their preferences, especially if they had a close relationship, such as a partner who had a higher preference for nursing home and hospital care. Conversations about preferences for the place of care and death considering previous experience are encouraged.
  •  
39.
  • Teku, Gabriel N., et al. (författare)
  • Pan-cancer analysis of neoepitopes
  • 2018
  • Ingår i: Scientific Reports. - : Springer Science and Business Media LLC. - 2045-2322. ; 8:1
  • Tidskriftsartikel (refereegranskat)abstract
    • Somatic variations are frequent and important drivers in cancers. Amino acid substitutions can yield neoantigens that are detected by the immune system. Neoantigens can lead to immune response and tumor rejection. Although neoantigen load and occurrence have been widely studied, a detailed pan-cancer analysis of the occurrence and characterization of neoepitopes is missing. We investigated the proteome-wide amino acid substitutions in 8-, 9-, 10-, and 11-mer peptides in 30 cancer types with the NetMHC 4.0 software. 11,316,078 (0.24%) of the predicted 8-, 9-, 10-, and 11-mer peptides were highly likely neoepitope candidates and were derived from 95.44% of human proteins. Binding affinity to MHC molecules is just one of the many epitope features. The most likely epitopes are those which are detected by several MHCs and of several peptide lengths. 9-mer peptides are the most common among the high binding neoantigens. 0.17% of all variants yield more than 100 neoepitopes and are considered as the best candidates for any application. Amino acid distributions indicate that variants at all positions in neoepitopes of any length are, on average, more hydrophobic than the wild-type residues. We characterized properties of neoepitopes in 30 cancer types and estimated the likely numbers of tumor-derived epitopes that could induce an immune response. We found that amino acid distributions, at all positions in neoepitopes of all lengths, contain more hydrophobic residues than the wild-type sequences implying that the hydropathy nature of neoepitopes is an important property. The neoepitope characteristics can be employed for various applications including targeted cancer vaccine development for precision medicine.
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