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1.
J Neurooncol ; 167(3): 407-413, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38539006

RESUMO

INTRODUCTION: Palliative WBRT is the main treatment for multiple BMs. Recent studies report no benefit in survival after WBRT compared to palliative supportive care in patients (pts) with poor prognosis. A new era of systemic treatment strategies based on targeted therapies are improving the prognosis of patients with BMs. The purpose of this study is to develop a prognostic score in palliative pts with BMs who undergo WBRT in this new setting. METHODS: 239 pts with BMs who received palliative WBRT between 2013-2022 in our center were analyzed retrospectively. The score was designed according to the value of the ß coefficient of each variable with statistical significance in the multivariate model using Cox regression. Once the score was established, a comparison was performed according to Kaplan-Meier and was analyzed by log-rank test. RESULTS: 149 pts (62.3%) were male and median (m) age was 60 years. 139 (58,2%) were lung cancer and 35 (14,6%) breast cancer. All patients received 30Gys in 10 sessions. m overall survival (OS) was 3,74 months (ms). 37 pts (15,5%) had a specific target mutation. We found that 62 pts were in group < 4 points with mOS 6,89 ms (CI 95% 3,18-10,62), 84 in group 4-7 points with mOS 4,01 ms (CI 95% 3,40-4,62) and 92 pts in group > 7 points with mOS 2,72 ms (CI 95% 1,93-3,52) (p < 0,001). CONCLUSIONS: METASNCore items are associated with OS and they could be useful to select palliative pts to receive WBRT. More studies are necessary to corroborate our findings.


Assuntos
Neoplasias Encefálicas , Irradiação Craniana , Cuidados Paliativos , Humanos , Feminino , Masculino , Cuidados Paliativos/métodos , Neoplasias Encefálicas/radioterapia , Neoplasias Encefálicas/secundário , Neoplasias Encefálicas/mortalidade , Pessoa de Meia-Idade , Prognóstico , Estudos Retrospectivos , Idoso , Irradiação Craniana/métodos , Medicina de Precisão , Adulto , Idoso de 80 Anos ou mais , Taxa de Sobrevida
2.
Support Care Cancer ; 32(3): 159, 2024 Feb 15.
Artigo em Inglês | MEDLINE | ID: mdl-38361035

RESUMO

PURPOSE: Despite the multiprofessional concept surrounding palliative care patients (PCPs) and their high prevalence of oral issues, licensed dentists (LDs) are often not included in their treatment team. This study aimed to examine the current state of cooperation and to determine whether and how LDs should be included in the care for PCPs. METHODS: This single-centre cross-sectional study was conducted at the University Hospital Muenster, Germany. We surveyed three participant groups: PCPs, LDs, and healthcare professionals (HCPs). Questionnaires were tailored for each group, with some questions common for comparison. RESULTS: The study encompassed the results of 48 questionnaires from LDs, 50 from PCPs along with 50 from HCPs. Consensus was reached among all parties (LDs: 73% (n = 35/48); HCPs: 94%, n = 47/50; PCPs: 60%, n = 30/50) that involving LDs in the treatment concept is favourable. On the other hand, a significant discrepancy emerged in the perception of the dental treatment effort required by PCPs. While LDs (81%; n = 39/48) and HCPs (64%; n = 32/50) were convinced of increased effort, PCPs (34%; n = 17/50) largely did not share this perspective. To enhance patient care and formulate appropriate treatment plans, LDs consider both training (58%; n = 28/48) and guidebooks (71%; n = 34/48) to be valuable and would attend or use such resources. CONCLUSION: This study sheds light on the current gaps in including LDs in palliative care teams and emphasizes the importance of multidisciplinary collaboration to address oral health needs effectively. Development of continuing education options and collaborative models between LDs and HCPs needs to be further expanded in future.


Assuntos
Pessoal de Saúde , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Estudos Transversais , Pessoal de Saúde/educação , Inquéritos e Questionários , Odontólogos
3.
Support Care Cancer ; 32(7): 468, 2024 Jun 27.
Artigo em Inglês | MEDLINE | ID: mdl-38937310

RESUMO

PURPOSE: While numerous studies underscore the benefits of early palliative care (EPC) for patients with solid tumors, its effects on patients with multiple myeloma (MM) are not as widely known. This study aims to determine the effects of EPC integration on patients with newly diagnosed symptomatic MM and the feasibility of this approach. METHODS: This prospective cohort study enrolled patients within eight weeks of diagnosis. Participants met with a palliative care team monthly for 12 months. Functional Assessment of Cancer Therapy-General (FACT-G) plus Multiple Myeloma Subscale (FACT-MM), and Hospital Anxiety and Depression Scale (HADS) were administered upon enrollment and every three months. Proportion of completed visits and assessments determined the feasibility of EPC. RESULTS: Of the twenty participants enrolled from January 2020 to November 2022, median age was 65 (range 40, 77), 15 (75%) were female, 15 (75%) were white, 65% completed assessments at six months, and 60% at 12 months. The following measures significantly improved at 12 months versus baseline: FACT-G scores increased by 15.1 points (adjusted 95% CI: 2.2-28.1, adjusted p = 0.02); Functional Well-Being scores increased by 6.0 points (adjusted 95% CI: 1.1-10.9, adjusted p = 0.01); and Pain Subscale scores increased by 3.4 points (adjusted 95% CI: 0.5-6.4, adjusted p = 0.02). Depression and anxiety scores did not significantly change over time. CONCLUSION: Functional well-being, pain experience and overall QOL improved in a cohort of patients with newly diagnosed MM after 12 months of EPC involvement. Although monthly visits seemed feasible, the findings suggest that further research is needed to explore the optimal timing of palliative care interventions in the MM trajectory. TRIAL REGISTRATION: ClinicalTrials.gov ID NCT04248244 (Registration Date: January 30, 2020).


Assuntos
Mieloma Múltiplo , Cuidados Paliativos , Humanos , Mieloma Múltiplo/terapia , Mieloma Múltiplo/psicologia , Feminino , Masculino , Cuidados Paliativos/métodos , Pessoa de Meia-Idade , Idoso , Estudos Prospectivos , Adulto , Qualidade de Vida , Estudos de Coortes , Depressão/etiologia , Ansiedade/etiologia
4.
Palliat Med ; : 2692163241286658, 2024 Oct 06.
Artigo em Inglês | MEDLINE | ID: mdl-39369282

RESUMO

BACKGROUND: The limited palliative care evidence base is poorly amenable to existing grading schemes utilized in guidelines. Many recommendations are based on expert consensus or clinical practice standards, which are often considered 'low-quality' evidence. Reinforcing provider hesitancy in translating recommendations to practice has implications for patient care. AIM: To rationalize the selection of an appropriate grading system for rating evidence to support recommendations made in palliative care clinical practice guidelines. DESIGN: Review of the methodology sections of international palliative care guidelines published in English identified five grading systems comparison: Grading of Recommendations, Assessment, Development and Evaluations (GRADE); the Scottish Intercollegiate Guidelines Network (SIGN); Infectious Diseases Society of America-European Society for Medical Oncology (IDSA-ESMO); Confidence in the Evidence from Reviews of Qualitative research (CERQual) and the National Service Framework for Long Term Conditions (NSF-LTC). RESULTS: There is heterogeneity among grading systems used in published palliative care or terminal symptom management guidelines. GRADE has been increasingly adopted for its methodological rigour and inter-guideline consistency with other medical associations. CERQual has the potential to support recommendations informed by qualitative evidence, but its role in clinical guidelines is less defined. The IDSA-ESMO system has an intuitive typology with the ability to categorize tiers of lower-quality evidence. CONCLUSIONS: It is challenging to apply commonly used grading systems to the palliative care evidence base, which often lacks robust randomized controlled trials (RCTs). Adoption of IDSA-ESMO offers a feasible and practical alternative for lower-resourced guideline developers and palliative clinicians without a prerequisite for methodological expertise.

5.
BMC Palliat Care ; 23(1): 215, 2024 Aug 24.
Artigo em Inglês | MEDLINE | ID: mdl-39182053

RESUMO

BACKGROUND: The majority of palliative care patients express a preference for remaining at home for as long as possible. Despite progression of disease there is a strong desire to die at home. Nonetheless, there are transfers between care settings, demonstrating a discrepancy between desired and actual place of death. AIM: To map the prevalence of patients near death undergoing specialized palliative home care and being transferred to inpatient care in Sweden. METHODS: A national retrospective cross-sectional study based on data from the Swedish Register of Palliative Care. Patients ≥ 18 years of age enrolled in specialized palliative home care with dates of death between 1 November 2015 and 31 October 2022 were included (n = 39,698). Descriptive statistics were used. RESULTS: Seven thousand three hundred eighty-three patients (18.6%), approximately 1,000 per year, were transferred to inpatient care and died within seven days of arrival. A considerable proportion of these patients died within two days after admission. The majority (73.6%) were admitted to specialized palliative inpatient care units, 22.9% to non-specialized palliative inpatient care units and 3.5% to additional care units. Transferred patients had more frequent dyspnoea (30.9% vs. 23.2%, p < 0.001), anxiety (60.2% vs. 56.5%, p < 0.001) and presence of several simultaneous symptoms was significantly more common (27.0% vs. 24.8%, p 0.001). CONCLUSION: The results show that patients admitted to specialized palliative home care in Sweden are being transferred to inpatient care near death. A notable proportion of these patients dies within two days of admission. Common features, such as symptoms and symptom burden, can be observed in the patients transferred. The study highlights a phenomenon that may be experienced by patients, relatives and healthcare personnel as a significant event in a vulnerable situation. A deeper understanding of the underlying causes of these transfers is required to ascertain whether they are compatible with good palliative care and a dignified death.


Assuntos
Serviços de Assistência Domiciliar , Cuidados Paliativos , Transferência de Pacientes , Sistema de Registros , Humanos , Suécia , Masculino , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Feminino , Idoso , Serviços de Assistência Domiciliar/estatística & dados numéricos , Serviços de Assistência Domiciliar/normas , Sistema de Registros/estatística & dados numéricos , Estudos Transversais , Estudos Retrospectivos , Idoso de 80 Anos ou mais , Pessoa de Meia-Idade , Transferência de Pacientes/estatística & dados numéricos , Transferência de Pacientes/métodos , Transferência de Pacientes/normas , Adulto , Pacientes Internados/estatística & dados numéricos , Pacientes Internados/psicologia , Hospitalização/estatística & dados numéricos
6.
BMC Palliat Care ; 23(1): 172, 2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39010021

RESUMO

BACKGROUND: Patients receiving palliative care are often on complex medication regimes to manage their symptoms and comorbidities and at high risk of medication-related problems. The aim of this cross-sectional study was to evaluate the involvement of a pharmacist to an existing community specialist palliative care telehealth service on patients' medication management. METHOD: The specialist palliative care pharmacist attended two palliative care telehealth sessions per week over a six-month period (October 2020 to March 2021). Attendance was allocated based on funding received. Data collected from the medication management reviews included prevalence of polypharmacy, number of inappropriate medication according to the Screening Tool of Older Persons Prescriptions in Frail adults with limited life expectancy criteria (STOPP/FRAIL) and recommendations on deprescribing, symptom control and medication management. RESULTS: In total 95 patients participated in the pharmaceutical telehealth service with a mean age of 75.2 years (SD 10.67). Whilst 81 (85.3%) patients had a cancer diagnosis, 14 (14.7%) had a non-cancer diagnosis. At referral, 84 (88.4%, SD 4.57) patients were taking ≥ 5 medications with 51 (53.7%, SD 5.03) taking ≥ 10 medications. According to STOPP/FRAIL criteria, 142 potentially inappropriate medications were taken by 54 (56.8%) patients, with a mean of 2.6 (SD 1.16) inappropriate medications per person. Overall, 142 recommendations were accepted from the pharmaceutical medication management review including 49 (34.5%) related to deprescribing, 20 (14.0%) to medication-related problems, 35 (24.7%) to symptom management and 38 (26.8%) to medication administration. CONCLUSION: This study provided evidence regarding the value of including a pharmacist in palliative care telehealth services. Input from the pharmacist resulted in improved symptom management of community palliative care patients and their overall medication management.


Assuntos
Cuidados Paliativos , Farmacêuticos , Telemedicina , Humanos , Estudos Transversais , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Idoso , Telemedicina/normas , Feminino , Masculino , Idoso de 80 Anos ou mais , Conduta do Tratamento Medicamentoso/normas , Polimedicação , Pessoa de Meia-Idade
7.
BMC Palliat Care ; 23(1): 85, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38556894

RESUMO

BACKGROUND: There is a severe shortage of corneas for donation, globally, for transplantation and research purposes. One group of individuals who could potentially be donors are those who die within the inpatient palliative care unit. The aim of the study was to understand clinician and patient perceptions of corneal donations and discussion of donation in palliative care units. METHODS: A qualitative design was utilised with data collected through semi-structured interviews and analysed using qualitative content analysis. A total of 46 interviews were undertaken involving inpatient palliative care unit patients (19) and clinicians (27) in three major inpatient palliative care units in South Australia. RESULTS: Very few patient participants reported being asked about corneal donations during their time in palliative care. Most inpatient palliative care unit clinicians did not raise the topic as they felt other areas of care took precedence. Inpatient palliative care unit patients thought if inpatient palliative care unit clinicians did not raise the topic, then it was not important. There were some differences between patient and clinician views, such as preference about who raises the possibility of donation and when the discussion might occur. CONCLUSIONS: Findings suggest that patients are receptive to discussing corneal donations, but clinicians are not initiating these. This is a missed opportunity for donors and potential recipients. We recommend that clinicians routinely discuss eye donation as part of palliative care.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Córnea , Pacientes Internados , Austrália do Sul , Pesquisa Qualitativa
8.
BMC Palliat Care ; 23(1): 229, 2024 Sep 23.
Artigo em Inglês | MEDLINE | ID: mdl-39313780

RESUMO

BACKGROUND: The number of advanced heart failure patients with left ventricular assist devices (LVAD) is increasing. Despite guideline-recommendations, little is known about specialist palliative care involvement in LVAD-patients, especially in Europe. This study aims to investigate timing and setting of specialist palliative care in LVAD-patients. METHODS: We conducted a retrospective multicenter study in 2022. Specialist palliative care services in German LVAD-centers were identified and invited to participate. Forty adult LVAD-patients (mean age 65 years (SD 7.9), 90% male) from seven centers that received a specialist palliative care consultation during hospitalization were included. RESULTS: In 37 (67.3%) of the 55 LVAD-centers, specialist palliative care was available. The median duration between LVAD-implantation and first specialist palliative care contact was 17 months (IQR 6.3-50.3 months). Median duration between consultation and death was seven days (IQR 3-28 days). 65% of consults took place in an intensive/intermediate care unit with half of the patients having a Do-Not-Resuscitate order. Care planning significantly increased during involvement (advance directives before: n = 15, after: n = 19, p < 0.001; DNR before: n = 20, after: n = 28, p < 0.001). Symptom burden as assessed at first specialist palliative care contact was higher compared to the consultation requests (request: median 3 symptoms (IQR 3-6); first contact: median 9 (IQR 6-10); p < 0.001) with a focus on weakness, anxiety, overburdening of next-of-kin and dyspnea. More than 70% of patients died during index hospitalization, one third of these in a palliative care unit. CONCLUSIONS: This largest European multicenter investigation of LVAD-patients receiving specialist palliative care shows a late integration and high physical and psychosocial symptom burden. This study highlights the urgent need for earlier integration to identify and address poorly controlled symptoms. Further studies and educational efforts are needed to close the gap between guideline-recommendations and the current status quo.


Assuntos
Coração Auxiliar , Cuidados Paliativos , Humanos , Masculino , Estudos Retrospectivos , Feminino , Coração Auxiliar/estatística & dados numéricos , Coração Auxiliar/normas , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Idoso , Pessoa de Meia-Idade , Alemanha , Insuficiência Cardíaca/terapia , Insuficiência Cardíaca/psicologia
9.
BMC Palliat Care ; 23(1): 124, 2024 May 20.
Artigo em Inglês | MEDLINE | ID: mdl-38769564

RESUMO

BACKGROUND: Ex-ante identification of the last year in life facilitates a proactive palliative approach. Machine learning models trained on electronic health records (EHR) demonstrate promising performance in cancer prognostication. However, gaps in literature include incomplete reporting of model performance, inadequate alignment of model formulation with implementation use-case, and insufficient explainability hindering trust and adoption in clinical settings. Hence, we aim to develop an explainable machine learning EHR-based model that prompts palliative care processes by predicting for 365-day mortality risk among patients with advanced cancer within an outpatient setting. METHODS: Our cohort consisted of 5,926 adults diagnosed with Stage 3 or 4 solid organ cancer between July 1, 2017, and June 30, 2020 and receiving ambulatory cancer care within a tertiary center. The classification problem was modelled using Extreme Gradient Boosting (XGBoost) and aligned to our envisioned use-case: "Given a prediction point that corresponds to an outpatient cancer encounter, predict for mortality within 365-days from prediction point, using EHR data up to 365-days prior." The model was trained with 75% of the dataset (n = 39,416 outpatient encounters) and validated on a 25% hold-out dataset (n = 13,122 outpatient encounters). To explain model outputs, we used Shapley Additive Explanations (SHAP) values. Clinical characteristics, laboratory tests and treatment data were used to train the model. Performance was evaluated using area under the receiver operating characteristic curve (AUROC) and area under the precision-recall curve (AUPRC), while model calibration was assessed using the Brier score. RESULTS: In total, 17,149 of the 52,538 prediction points (32.6%) had a mortality event within the 365-day prediction window. The model demonstrated an AUROC of 0.861 (95% CI 0.856-0.867) and AUPRC of 0.771. The Brier score was 0.147, indicating slight overestimations of mortality risk. Explanatory diagrams utilizing SHAP values allowed visualization of feature impacts on predictions at both the global and individual levels. CONCLUSION: Our machine learning model demonstrated good discrimination and precision-recall in predicting 365-day mortality risk among individuals with advanced cancer. It has the potential to provide personalized mortality predictions and facilitate earlier integration of palliative care.


Assuntos
Registros Eletrônicos de Saúde , Aprendizado de Máquina , Cuidados Paliativos , Humanos , Aprendizado de Máquina/normas , Registros Eletrônicos de Saúde/estatística & dados numéricos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/estatística & dados numéricos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Medição de Risco/métodos , Neoplasias/mortalidade , Neoplasias/terapia , Estudos de Coortes , Adulto , Oncologia/métodos , Oncologia/normas , Idoso de 80 Anos ou mais , Mortalidade/tendências
10.
BMC Palliat Care ; 23(1): 149, 2024 Jun 13.
Artigo em Inglês | MEDLINE | ID: mdl-38872162

RESUMO

BACKGROUND: The number of people suffering from chronic diseases requiring palliative care (PC) is increasing rapidly. Therefore, PC teaching in undergraduate health science programs is necessary to improve primary PC based on international recommendations and available scientific evidence. METHODS: A descriptive cross-sectional study was conducted. Active undergraduate medical and nursing programs that were approved by the Colombian Ministry of Education and integrated PC teaching into their curricula were included in the study. The total sample consisted of 48 programs: 31 nursing and 17 medical programs. RESULTS: PC competencies are distributed throughout the curriculum in 41.67% of programs, in elective courses in 31.25%, and in mandatory courses in 27.08% of the programs. The average PC teaching hours is 81 for nursing and 57.6 for medicine. PC clinical rotations are not offered in 75% of the programs. For undergraduate nursing programs, the most frequent competencies taught are the definition and history of PC and identifying common symptoms associated with advanced disease. In undergraduate medicine, the most common competencies are pharmacological and non-pharmacological pain management and identification of PC needs. CONCLUSIONS: PC teaching in undergraduate health science programs mainly addresses the conceptual and theoretical aspects of PC, which are part of the competencies present throughout the programs' curricula. Low availability of PC clinical rotations was identified. Future studies should assess whether the low availability of clinical rotations in PC limits the ability of students to develop the practical competencies necessary to provide quality PC. TRIAL REGISTRATION: Not applicable.


Assuntos
Currículo , Educação de Graduação em Medicina , Cuidados Paliativos , Estudos Transversais , Colômbia , Humanos , Educação de Graduação em Medicina/métodos , Educação de Graduação em Medicina/normas , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Currículo/tendências , Currículo/normas , Bacharelado em Enfermagem/métodos , Bacharelado em Enfermagem/normas
11.
BMC Palliat Care ; 23(1): 185, 2024 Jul 25.
Artigo em Inglês | MEDLINE | ID: mdl-39054518

RESUMO

BACKGROUND: People with dementia are less in focus of palliative care research than other patient groups even though the awareness of their palliative and end-of-life care needs is rising. Empirical data analyses on people with dementia in palliative care services are lacking. AIM: To explore the prevalence of dementia diagnoses as per the ICD criteria among users of various palliative care settings and to compare use of palliative services, care pathways, and outcomes in people with and without a dementia diagnosis. DESIGN: We conducted retrospective analysis of dementia diagnoses as per ICD (F00-F03/G30) in the German National Hospice and Palliative Care Register between 2009 and 2021. The analysis used methods of descriptive and inferential statistics, including the Bonferroni correction for alpha error inflation. SETTING/PARTICIPANTS: We limited the analysis to the subsample of people aged over 64. RESULTS: The prevalence of dementia in the different settings of palliative care was lower than in the age-comparable population: Of the 69,116 data sets included in the analysis, a small minority (3.3%) was coded with dementia as the principal diagnosis. Among patients on inpatient palliative care wards, 0.8% (148 of 19,161) had a dementia diagnosis, as did 2.2% (52 of 2,380) of those under hospital palliative care support teams and 4.3% (2,014 of 46,803) of those receiving specialized palliative care at home. CONCLUSIONS: The records of the German National Hospice and Palliative Care Register suggest that the prevalence of dementia is lower than one might expect from general population data, though numbers are in line with international studies on proportion of dementia patients receiving palliative care. Future research could usefully examine whether this discrepancy stems either from omissions in coding dementia as patients' principal diagnosis respectively from lapses in documentation of a dementia diagnosis previously made, or from barriers to accessing palliative care services or even displays being excluded from palliative care when trying to access it. TRIAL REGISTRATION: No registration.


Assuntos
Demência , Cuidados Paliativos , Sistema de Registros , Humanos , Alemanha , Demência/terapia , Demência/epidemiologia , Idoso , Cuidados Paliativos/estatística & dados numéricos , Cuidados Paliativos/métodos , Masculino , Feminino , Idoso de 80 Anos ou mais , Estudos Retrospectivos , Sistema de Registros/estatística & dados numéricos , Pessoa de Meia-Idade , Prevalência , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Cuidados Paliativos na Terminalidade da Vida/métodos
12.
BMC Palliat Care ; 23(1): 159, 2024 Jun 25.
Artigo em Inglês | MEDLINE | ID: mdl-38918771

RESUMO

BACKGROUND: Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and organisational facilitators and barriers to conducting palliative care research. METHODS: A mixed methods study, using an open cross-sectional online survey, followed by working groups using nominal group techniques. Participants were professionals interested in palliative care research, working as generalist/specialist palliative care providers, or palliative care research staff across areas of North West England. Recruitment was via local health organisations, personal networks, and social media in 2022. Data were examined using descriptive statistics and content analysis. RESULTS: Participants (survey n = 293, working groups n = 20) were mainly from clinical settings (71%) with 45% nurses and 45% working more than 10 years in palliative care. 75% were not active in research but 73% indicated a desire to increase research involvement. Key barriers included lack of organisational research culture and capacity (including prioritisation and available time); research knowledge (including skills/expertise and funding opportunities); research infrastructure (including collaborative opportunities across multiple organisations and governance challenges); and patient and public perceptions of research (including vulnerabilities and burdens). Key facilitators included dedicated research staff, and active research groups, collaborations, and networking opportunities. CONCLUSIONS: Professionals working in palliative care are keen to be research active, but lack time, skills, and support to build research capabilities and collaborations. A shift in organisational culture is needed to enhance palliative care research capacity and collaborative opportunities across clinical and research settings.


Assuntos
Cuidados Paliativos , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Estudos Transversais , Inglaterra , Masculino , Inquéritos e Questionários , Assistência Terminal/métodos , Assistência Terminal/normas , Assistência Terminal/psicologia , Feminino , Adulto , Pessoa de Meia-Idade , Pessoal de Saúde/psicologia , Pesquisadores/psicologia , Pesquisa Qualitativa
13.
BMC Palliat Care ; 23(1): 125, 2024 May 21.
Artigo em Inglês | MEDLINE | ID: mdl-38769557

RESUMO

BACKGROUND: Few studies have evaluated the perceptions of healthcare providers in China regarding pediatric palliative care, particularly in critical care units (PICUs), where many children receive palliative care. To evaluate the knowledge, attitudes and practices of PICU personnel in China regarding pediatric palliative care. METHODS: This cross-sectional study was conducted in five cities in China (Shanghai, Suzhou, Chongqing, Chengdu and Yunnan) between November 2022 and December 2022. RESULTS: The analysis included 204 participants (122 females), with 158 nurses and 46 physicians. The average knowledge, attitude and practice scores were 9.75 ± 2.90 points (possible range, 0-13 points), 38.30 ± 3.80 points (possible range, 12-60 points) and 35.48 ± 5.72 points (possible range, 9-45 points), respectively. Knowledge score was higher for physicians than for nurses (P < 0.001) and for personnel with previous training in pediatric palliative care (P = 0.005). According to structural equation modelling knowledge had a direct positive effect on attitude (ß = 0.69 [0.28-1.10], p = 0.001), and indirect on practice (ß = 0.82 [0.36-1.28], p < 0.001); attitude had significant effect on practice as well (ß = 1.18 [0.81-1.56], p < 0.001). CONCLUSIONS: There is room for improvement in the knowledge, attitudes and practices of PICU personnel in China regarding pediatric palliative care. The findings of this study may facilitate the design and implementation of targeted education/training programs to better inform physicians and nurses in China about pediatric palliative care.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Cuidados Paliativos , Humanos , Estudos Transversais , Feminino , Masculino , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/psicologia , China , Adulto , Inquéritos e Questionários , Pessoa de Meia-Idade , Pessoal de Saúde/psicologia , Pessoal de Saúde/estatística & dados numéricos , Atitude do Pessoal de Saúde , Unidades de Terapia Intensiva Pediátrica/organização & administração , Unidades de Terapia Intensiva Pediátrica/estatística & dados numéricos , Unidades de Terapia Intensiva/organização & administração , Pediatria/métodos , Pediatria/normas
14.
Scand J Prim Health Care ; 42(2): 254-265, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38289262

RESUMO

BACKGROUND: Demographic changes, the evolvement of modern medicine and new treatments for severe diseases, increase the need for palliative care services. Palliative care includes all patients with life-limiting conditions, irrespective of diagnosis. In Norway, palliative care rests on a decentralised model where patient care can be delivered close to the patient's home, and the Norwegian guideline for palliative care describes a model of care resting on extensive collaboration. Previous research suggests that this guideline is not well implemented among general practitioners (GPs). In this study, we aim to investigate barriers to GPs' participation in palliative care and implementation of the guideline. METHODS: We interviewed 25 GPs in four focus groups guided by a semi-structured interview guide. The interviews were recorded and transcribed verbatim. Data were analysed qualitatively with reflexive thematic analysis. RESULTS: We identified four main themes as barriers to GPs' participation in palliative care and to implementation of the guideline: (1) different established local cultures and practices of palliative care, (2) discontinuity of the GP-patient relationship, (3) unclear clinical handover and information gaps and (4) a mismatch between the guideline and everyday general practice. CONCLUSION: Significant structural and individual barriers to GPs' participation in palliative care exist, which hamper the implementation of the guideline. GPs should be involved as stakeholders when guidelines involving them are created. Introduction of new professionals in primary care needs to be actively managed to avoid inappropriate collaborative practices. Continuity of the GP-patient relationship must be maintained throughout severe illness and at end-of-life.


According to the Norwegian guideline for palliative care, the GP should have a central position in providing primary palliative care.Recent research and public reports suggest that not all GPs have such a central role or adhere to the guidelines.This study highlights individual and structural barriers that could be addressed to increase GPs' participation in palliative care and aid the implementation of the guidelines for palliative care.


Assuntos
Medicina Geral , Clínicos Gerais , Humanos , Cuidados Paliativos , Pesquisa Qualitativa , Noruega , Atitude do Pessoal de Saúde
15.
BMC Med Educ ; 24(1): 411, 2024 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-38622620

RESUMO

BACKGROUND: The concept of "total pain" plays an important role in palliative care; it means that pain is not solely experienced on a physical level, but also within a psychological, social and spiritual dimension. Understanding what spirituality entails, however, is a challenge for health care professionals, as is screening for the spiritual needs of patients. OBJECTIVE: This is a novel, interprofessional approach in teaching undergraduate medical students about spiritual care in the format of a seminar. The aim of this study is to assess if an increase in knowledge about spiritual care in the clinical context is achievable with this format. METHODS: In a mandatory seminar within the palliative care curriculum at our university, both a physician and a hospital chaplain teach strategies in symptom control from different perspectives (somatic domain - spiritual domain). For evaluation purposes of the content taught on the spiritual domain, we conducted a questionnaire consisting of two parts: specific outcome evaluation making use of the comparative self-assessment (CSA) gain and overall perception of the seminar using Likert scale. RESULTS: In total, 52 students participated. Regarding specific outcome evaluation, the greatest gain was achieved in the ability to define total pain (84.8%) and in realizing its relevance in clinical settings (77.4%). The lowest, but still fairly high improvement was achieved in the ability to identify patients who might benefit from spiritual counselling (60.9%). The learning benefits were all significant as confirmed by confidence intervals. Overall, students were satisfied with the structure of the seminar. The content was delivered clearly and comprehensibly reaching a mean score of 4.3 on Likert scale (4 = agree). The content was perceived as overall relevant to the later work in medicine (mean 4.3). Most students do not opt for a seminar solely revolving around spiritual care (mean 2.6). CONCLUSIONS: We conclude that implementing spiritual care education following an interprofessional approach into existing medical curricula, e.g. palliative medicine, is feasible and well perceived among medical students. Students do not wish for a seminar which solely revolves around spiritual care but prefer a close link to clinical practice and strategies.


Assuntos
Medicina Paliativa , Terapias Espirituais , Estudantes de Medicina , Humanos , Currículo , Cuidados Paliativos/métodos , Estudantes de Medicina/psicologia , Dor , Espiritualidade
16.
BMC Med Educ ; 24(1): 1007, 2024 Sep 15.
Artigo em Inglês | MEDLINE | ID: mdl-39278932

RESUMO

BACKGROUND: Mentoring can help shape how medical students think, feel, and act as physicians. Yet, the mechanism in which it influences this process of professional identity formation (PIF) remains poorly understood. Through the lens of the ecological systems theory, this study explores the interconnected and dynamic system of mentoring relationships and resources that support professional development and growth within the Palliative Medicine Initiative (PMI), a structured research peer mentoring program. METHODS: A secondary analysis of transcripts of semi-structured interviews with peer mentors and mentees and a review of their mentoring diaries was conducted to explore the impact of participation in a longitudinal peer mentoring program on both mentees and peer mentors on their personal and professional development through the lens of the mentoring ecosystem model. The Systematic Evidence-Based Approach was adapted to analyze the data via content and thematic analysis. RESULTS: Eighteen mentees and peer mentors participated and described a supportive community of practice within the research program, with discrete micro-, meso-, and macro-environments that are dynamic, reflexive, and interconnected to form a mentoring ecosystem. Within this ecosystem, reflection is fostered, and identity work is done-ultimately shaping and refining self-concepts of personhood and identity. CONCLUSION: This study underscores the nuances and complexities of mentorship and supports the role of the mentoring ecosystem in PIF. A deeper understanding of the multiple factors that converge to facilitate the professional development of mentees can help educators develop and implement structured peer mentorship programs that better support reflective practice and identity work.


Assuntos
Tutoria , Mentores , Grupo Associado , Identificação Social , Humanos , Estudantes de Medicina/psicologia , Feminino , Masculino , Adulto
17.
Artigo em Inglês | MEDLINE | ID: mdl-39107830

RESUMO

OBJECTIVES: Clinicians in the emergency department (ED) frequently encounter seriously ill patients at a time when advance directives may be pivotal in improved clinician decision-making. The objectives of this study were to identify the prevalence of advanced directives in ED patients, as well as patterns of advance care discussions between patients and providers. This study describes patients' perceptions and expectations of such serious illness discussions in an emergency care setting with the expectation of including patients as strategic members of the care team. METHODS: Trained research assistants in two emergency departments surveyed patients over age 65, or their caregivers, from July 2016 to August 2018. Patients were verbally administered a standard survey tool related to advance directives and advance care planning. RESULTS: 497 out of 877 patients completed surveys (59.4%). 50% of patients reported having an advance care planning document. The large majority (92%) of patients with an advance directive had not been asked about it during their ED visit. When questioned about their personal preferences, 79% of patients thought emergency physicians should be aware of their wishes regarding life-sustaining treatments and end-of-life care. Paradoxically, only 38% expressed a desire to discuss advance care plans with an ED clinician. CONCLUSIONS: Older patients expect emergency clinicians to be aware of their care preferences, yet most are not asked about these care preferences in the ED. The large gap between patient preference and reality suggests the need for more targeted discussion by ED clinicians and translation of patient perspectives into system healthcare improvements. Future studies should explore barriers to advance care planning in the ED as well as patient preferences for these conversations to support a true healthcare learning system.

18.
Telemed J E Health ; 30(5): 1459-1469, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38294865

RESUMO

Background: Patients suffering from incurable diseases are more likely to die in the hospital than at home. Specialized outpatient palliative care (PC) may be able to counteract this tendency. Similarly, potential benefits of telemedicine in health care were scientifically reported. The aim of this research was to compare patients receiving specialized outpatient PC plus telemedicine with those receiving standard specialized outpatient PC only. In this study, telemedicine is assumed to decrease the number of home visits and therefore should not be considered a mere add-on. Methods: This is a randomized controlled noninferiority trial. Recruitment lasted between January 2020 and October 2021. Quality of care was evaluated using the Integrated Palliative Care Outcome Scale (IPOS) at day 0, 7, and 14 after randomization. Change from day 0 to 7 was defined as the primary outcome (noninferiority margin = 4 points). This study was conducted in an urban setting in collaboration with a university hospital and a local specialized outpatient PC service. Results: A total of 196 patients were screened with 34 patients included (18 telemedicine/16 standard care). The mean change in the total score of the IPOS from day 0 to 7 amounted to -1.8 ± 3.9 (telemedicine) versus 1.2 ± 5.7 (standard care). The telemedicine group was statistically not relevantly inferior to the standard care group (t-test for noninferiority, p = 0.005). Conclusions: Although, due to COVID-19, the sample size remained rather small, our findings indicate that telemedical approaches offer a promising and equally effective option to provide specialized outpatient PC. Clinical Trial Registration Number: NCT06054048.


Assuntos
Assistência Ambulatorial , Cuidados Paliativos , Telemedicina , Humanos , Cuidados Paliativos/organização & administração , Telemedicina/organização & administração , Feminino , Masculino , Pessoa de Meia-Idade , Assistência Ambulatorial/organização & administração , Idoso , COVID-19/terapia , Adulto
19.
Nurs Inq ; 31(3): e12622, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38178543

RESUMO

Religion and spirituality are integral to the philosophy of palliative care, shaping its approach to spiritual care. This article aims to examine the discourses within palliative care research to illuminate prevailing assumptions regarding spiritual care. Eighteen original articles were analyzed to examine how spiritual care is understood within palliative care. The analysis, informed by Foucault, aimed to identify recurring discourses. The finding reveals that, in palliative care research, spirituality is viewed as enigmatic yet inherently human and natural, assuming that every individual has a spiritual dimension. The analysis points to healthcare professionals being expected to hold certain qualities to put spiritual care into practice. The analysis also reveals that in the analyzed articles, the concept of spiritual care is rooted in a Christian context, with the belief that all individuals possess inherent spirituality or religiosity, a concept often associated with Christian theology. The included articles often utilize theological terms and emphasize a monotheistic viewpoint. Spirituality is articulated as a complex, distinct concept, challenging clear definitions and professional responsibilities. Further, a moral formation of healthcare professionals is described, interpelling and ascribing qualities that healthcare professionals need to provide spiritual care.


Assuntos
Cuidados Paliativos , Espiritualidade , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas
20.
Palliat Support Care ; 22(2): 289-295, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37525556

RESUMO

BACKGROUND: Vaccine hesitancy has become prevalent in society. Vulnerable populations, such as those with cancer, are susceptible to increased morbidity and mortality from diseases that may have been prevented through vaccination. OBJECTIVES: Our objective was to determine patient perception of vaccine efficacy and safety and sources of information that influence decisions. METHODS: This study was a prospective cross-sectional survey trial conducted from March 10, 2022, to November 1, 2022, at a Supportive Care Clinic. Patients completed the survey with a research assistant or from a survey link. Vaccine hesitancy was defined as a response of 2 or more on the Parent Attitudes About Childhood Vaccines (PACV-4). Perception on vaccine safety and efficacy along with the importance of sources of information were determined by a questionnaire. RESULTS: Of the 72 patients who completed the PACV-4, 30 were considered vaccine-hesitant (42%). Of those who completed the survey alone (35), 23 (66%) were vaccine-hesitant; and of those who completed the survey with the help of a study coordinator (37), 7 (19%) were vaccine-hesitant. The most important source for decision-making was their doctor (82%, 95% CI 73-89), followed by family (42%, 95% CI 32-52), news/media (31%, 95% CI 22-41), and social media (9%, 95% CI 4-16). Clinical and demographic factors including age, gender, race/ethnicity, education level, and location of residence were not associated with vaccine hesitancy. SIGNIFICANCE OF RESULTS: Vaccine hesitancy is present among patients with advanced cancer. The high value given to the doctor's recommendation suggests that universal precautions regarding vaccine recommendation may be an effective intervention.


Assuntos
Neoplasias , Vacinas , Humanos , Criança , Estudos Transversais , Estudos Prospectivos , Hesitação Vacinal , Neoplasias/complicações , Pais
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