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1.
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
2.
MedEdPORTAL ; 20: 11444, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39328402

RESUMO

Introduction: Providers across multiple specialties may be called upon to perform brain death assessments at hospitals that lack specialty neurology or critical care services. To address this need, we developed a brain death curriculum involving simulation and group discussion to prepare medical trainees for brain death testing and communication with surrogate decision-makers. Methods: A 1-hour session was delivered to trainees rotating through the intensive care unit at William Beaumont University Hospital. One trainee per session participated in a simulation involving a brain-dead patient (SimMan 3G Mannequin) and spouse (confederate) while the remainder of the cohort observed from a separate room. The trainee briefed the spouse about the brain death examination, performed the examination, and communicated their findings. Afterward, the cohort discussed the history, law, and common ethical and communication issues that surround brain death. Results: A total of 35 trainees participated from August 2022 to March 2023. After the session, trainees were more comfortable performing brain death testing (p < .001), responding to ethical issues (p < .001), and communicating with families (p < .001). However, the session did not change their frustration with family members who have a circulatory (p = .72) or high brain (p = .52) view of death. Discussion: The simulation had a positive impact on medical trainees' ability to perform brain death testing and their comfort level in discussing complex ethical issues that surround brain death. Our results support continued simulation training for medical trainees to better prepare them for clinical practice.


Assuntos
Morte Encefálica , Comunicação , Currículo , Humanos , Morte Encefálica/diagnóstico , Treinamento por Simulação/métodos , Feminino , Masculino , Adulto , Internato e Residência/métodos , Unidades de Terapia Intensiva
3.
Am J Hosp Palliat Care ; : 10499091241285890, 2024 Sep 23.
Artigo em Inglês | MEDLINE | ID: mdl-39313454

RESUMO

OBJECTIVES: Identify the costs of an oncology patient at the end of life. METHODS: A systematic literature review was conducted by screening Embase, PubMed and Lilacs databases, including all studies evaluating end-of-life care costs for cancer patients up to March 2024. The review writing followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The quality of the included studies was assessed using the Drummond checklist. The protocol is available at PROSPERO CRD42023403186. RESULTS: A total of 733 studies were retrieved, and 43 were considered eligible. Among the studies analyzed, 41,86% included all types of neoplasms, 18.60% of lung neoplasm, All articles performed direct cost analysis, and 9.30% also performed indirect cost analysis. No study evaluated intangible costs, and most presented the macrocosting methodology from the payer's perspective. The articles included in this review presented significant heterogeneity related to populations, diagnoses, periods considered for evaluation of end-of-life care, and cost analyses. Most of the studies were from a payer perspective (74,41%) and based on macrocosting methodologies (81,39%), which limit the use of the information to evaluate variabilities in the consumption of resources. CONCLUSIONS: Considering the complexity of end-of-life care and the need for consistent data on costs in this period, new studies, mainly in low- and middle-income countries with approaches to indirect and intangible costs, with a societal perspective, are important for public policies of health in accordance with the trend of transforming value-based care, allowing the health care system to create more value for patients and their families.

4.
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
5.
Int J Cardiol Cardiovasc Risk Prev ; 23: 200328, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-39286291

RESUMO

Background: Palliative care needs in patients with cardiovascular diseases (CVD) are expected to increase. For the planning of equitable palliative care, it is important to understand where people with CVD die. The aim was to examine trends in place of death, associated factors including utilization of specialized palliative services, and to what extent longitudinal development is influenced by national policy. Methods: A population-level registry study of place of death for adults deceased due to CVD (n = 209 671) in Sweden 2013-2019. Linear regression analysis was applied. Results: The predominant place of death was nursing home (39.1 %) and hospital (37.6 %), followed by home (22.0 %). From 2013 to 2019 home deaths increased by 2.8 % and hospital deaths decreased by 3.0 %. An overall downward trend was found for dying in hospital compared to dying at home. With variations, this trend was seen in all healthcare regions and for all CVD types, except Stockholm and cerebrovascular disease, with no significant trend. Overall, but with cross-regional variations, 2.1 % utilized specialized palliative services, while 94.2 % had potential palliative care needs. Other variables significantly influencing the trend were age and having had an unplanned healthcare visit. Conclusion: Despite a slight positive trend, only a minority of people with CVD die in their own home. Regional variations in place of death and the low and varied utilization of specialized palliative services indicate inequity in access to palliative care. Hence, the impact of current national policies is questionable and calls for strengthening through inclusion of early palliative care in specific CVD policies.

6.
Nurs Rep ; 14(3): 2415-2429, 2024 Sep 18.
Artigo em Inglês | MEDLINE | ID: mdl-39311187

RESUMO

BACKGROUND: Palliative care provides holistic support, addressing physical, psychological, social, emotional, and spiritual dimensions of suffering, known as "total pain", to improve patients' quality of life. Patients often rely on healthcare professionals, particularly nurses, for support. This study aimed to develop and validate questionnaires assessing nurses' perceptions of psychological, social, and spiritual issues in palliative care and their effectiveness in managing them. METHODS: Two self-rated questionnaires were created: the Psychological, Social, and Spiritual Problems of Palliative Patients' Questionnaire and the Effectiveness in Coping with the Psychological, Social, and Spiritual Challenges of Palliative Care Patients. The study surveyed 237 nurses caring for palliative patients in Split Dalmatian County, Croatia. RESULTS: The questionnaires demonstrated high reliability with Cronbach's α values of 0.98 and 0.99. Factor analysis revealed four factors for the first questionnaire and three for the second. Nurses primarily perceived patients as experiencing fear and emotional/spiritual suffering, with the greatest difficulty coping with the fear of the disease outcomes. Nurses acknowledged the need for improvement in addressing patient challenges, highlighting gaps in the Croatian system. CONCLUSIONS: Ongoing efforts are crucial to prioritize palliative care globally, with nursing professionals playing a vital role in symptom management.

7.
Front Vet Sci ; 11: 1440404, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39301285

RESUMO

In the wake of recent medical developments in small animal practice, curing animals of their illnesses and restoring their health can be realized better than ever before. However, the growing medical possibilities are also leading to an increase in demand for better care for patients suffering from terminal illnesses. Consequently, the field of animal hospice and palliative care has become increasingly available, enabling veterinarians to optimize the quality of life of patients, such as dogs and cats, who no longer have a prospect of full recovery. Using qualitative, semi-structured interviews with 20 small animal veterinarians involved in hospice and palliative care, we investigated the factors that motivate veterinarians to become involved in hospice and palliative care and explored the importance of relationships, communication, time and infrastructure in this area. Findings show that personal experiences with their own pets or during training or work life motivated veterinarians to provide this service. Although veterinarians highlighted the importance of empathetic-driven relationships, they were aware that keeping an emotional distance from the patient and caregiver is significant to provide successful care. Further, veterinarians emphasized their high investment of time that resulted primarily from the increased frequency and provided opportunities to communicate with caregivers. The overall conclusion is that having time for patients and the patients' caregivers is one of the most important aspects of work in this field. However, as it will be also shown, veterinarians must consider aspects of self-care management by reflecting on their own time and energy resources while caring for animals and their caregivers.

8.
Ann Palliat Med ; 2024 Sep 09.
Artigo em Inglês | MEDLINE | ID: mdl-39260438

RESUMO

As the global older adult population continues to grow, challenges related to managing multiple chronic conditions (MCCs) or multimorbidity underscore the growing need for palliative care. Palliative care preferences and needs vary significantly based on context, location, and culture. As a result, there is a need for more clarity on what constitutes palliative care in diverse settings. Our objective was to present an international perspective on palliative care in India, a culturally diverse and large ancient Eastern middle-income country. In this narrative review article, we considered three questions when re-designing palliative care for older adults aging-in-place in India: (I) what are the needs for palliative care for persons and their families? (II) Which palliative care domains are essential in assessing improvements in the quality of life (QoL)? (III) What patientreported measures are essential considerations for palliative care? To address these questions, we provide recommendations based on the following key domains: social, behavioral, psychological, cultural, spiritual, medical, bereavement, legal, and economic. Using an established and widely reported conceptual framework on aging and health disparities, we provide how these domains map across multiple levels of influence, such as individual or family members, community, institutions, and health systems for achieving the desired QoL. For greater adoption, reach, and accessibility across diverse India, we conclude palliative care must be carefully and systematically re-designed to be culturally appropriate and community-focused, incorporating traditions, individual preferences, language(s), supports and services from educational and health institutions, community organizations and the government. In addition, national government insurance schemes such as the Ayushman Bharat Yojna can include explicit provisions for palliative care so that it is affordable to all, regardless of ability to pay. In summary, our considerations for incorporating palliative care domains to care of whole person and their families, and provision of supports of services from an array of stakeholders broadly apply to culturally diverse older adults aging in place in India and around the globe who prefer to age and die in place.

9.
J Palliat Med ; 2024 Sep 12.
Artigo em Inglês | MEDLINE | ID: mdl-39263974

RESUMO

Context: The time-variable, competency-based mid-career fellowship in Hospice and Palliative Medicine (HPM) is a multicenter pilot program for physicians who want to train in HPM part-time. Objectives: This study describes the experience of the early cohort of mid-career fellows. Methods: Fellows at the seven sites were surveyed about their perceptions of the program and their confidence in subspecialty skills. Results: Surveys were sent to 13 fellows and completed by 8. All reported positive experiences with curricula, direct observation, feedback, and cross-site case reviews. Most responses were positive regarding individualized learning plans and case-stimulated reviews. Respondents reported high confidence in 9 of the 13 specialty-specific skills, including communication, caring for dying patients, and pain management. They reported less confidence with psychological and non-pain symptoms, spirituality, and prognostication. Fewer than half indicated that the process for graduation was clear. Conclusion: Physicians in the competency-based HPM fellowship report a positive experience and high confidence in subspecialty skills.

10.
Surg Clin North Am ; 104(5): 1121-1135, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-39237168

RESUMO

To provide optimal care in pancreatic ductal adenocarcinoma, involvement of palliative medicine and nutritional support is recommended. Advances in endoscopy have resulted in robust options for biliary and gastrointestinal stenting for relief of obstruction. Notwithstanding, surgical hepaticojejunostomy and gastrojejunostomy remain incontrovertible considerations for biliary obstruction and gastric outlet obstruction, respectively. For PDAC-associated pain, opioid therapy continues to be the mainstay. However, refractory pain may be treated with interventional procedures such as celiac or splanchnic nerve blocks or neurolysis. In patients with PDAC, enteral nutrition can be further complicated by exocrine pancreatic insufficiency, which should be treated with oral pancreatic enzyme supplementation.


Assuntos
Cuidados Paliativos , Neoplasias Pancreáticas , Humanos , Cuidados Paliativos/métodos , Neoplasias Pancreáticas/cirurgia , Carcinoma Ductal Pancreático/cirurgia , Stents
11.
GMS J Med Educ ; 41(3): Doc27, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39131897

RESUMO

Objective: In 2009, Palliative care was incorporated into the medical curriculum as Cross-Sectional Subject 13 (QB13) by means of the revision of the Medical Licensing Regulations for Physicians. The aim of this study was to determine the strengths and deficits of QB13 student education for palliative care in clinical practice in a multi-centre setting and to identify potential for improvement. Methods: Online questionnaires filled out by medical students during their Practical Year (PY) and resident physicians from the university hospitals in Aachen, Düsseldorf, and Cologne were descriptively analyzed using SPSS; free-text responses were categorized and quantified. Semi-structured interviews with the resident physicians (using a mixed-methods design) were analyzed through content analysis. Emerging categories were quantified. Results: Analysis of 130 fully completed questionnaires and 23 interviews revealed that participants particularly benefited from patient- and practice-oriented small-group sessions for their clinical work. Despite some university-specific differences, the PY students identified a need for training in end-of-life-care, while resident physicians saw a need for training primarily in dealing with patients and their relatives. They also reported deficits in transferability. Conclusion: QB13 should be organised in cross-university curricula and provide sufficient resources for practical-oriented small-group teaching. Based on the "unit of care", besides caring for palliative patients, dealing with patients' families should also be an education focus. To improve transferability into clinical practice, students should be actively involved in the care of palliative patients.


Assuntos
Currículo , Internato e Residência , Cuidados Paliativos , Estudantes de Medicina , Humanos , Alemanha , Inquéritos e Questionários , Estudantes de Medicina/psicologia , Estudantes de Medicina/estatística & dados numéricos , Masculino , Estudos Transversais , Feminino , Adulto , Competência Clínica
12.
Am J Hosp Palliat Care ; : 10499091241268578, 2024 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-39093015

RESUMO

BACKGROUND: Behavioral health disorders are common among patients and caregivers in the hospice setting. Yet, limited data exist regarding what hospice providers perceive as the most common and challenging behavioral health disorders they encounter and how they manage these issues in practice. OBJECTIVE: To characterize the perspectives of hospice medical directors (HMDs) on addressing the behavioral health challenges when caring for patients enrolled in home hospice care and their family caregivers. METHODS: Semistructured interviews with seventeen certified HMDs were conducted. Data were analyzed using thematic analysis. RESULTS: Many HMDs agreed that delivering high-quality behavioral health care is a tenet for good end-of-life (EoL) care. HMDs shared that depression and anxiety were the most common behavioral health challenges they encountered, while among caregivers, substance use disorder was the most challenging. Participants mentioned that nurses and social workers played a vital role in detecting and managing behavioral health problems. HMDs also stated that providing additional training for frontline staff and incorporating behavioral health experts are potential solutions to help address current challenges. CONCLUSION: HMDs emphasized the importance of addressing behavioral health challenges among patients and caregivers to provide effective end-of-life care. Future studies should examine the viewpoints of additional key stakeholder groups (e.g., hospice interdisciplinary team members, family caregivers) and confirm them in quantitative studies. Designing and implementing evidence-based assessments and interventions to improve behavioral health care by addressing anxiety, depression, and caregiver substance use disorders is essential to improving care and care outcomes in the hospice setting.

13.
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.

15.
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
16.
Pharmacy (Basel) ; 12(4)2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39051394

RESUMO

Community cooperation pharmacies are equipped to prepare narcotics and sterile injectable drugs for palliative medicine at home for cancer pain and end-of-life care; however, to the best of our knowledge, the actual status of the system to provide palliative medicine at home has not yet been examined. Therefore, in this study, given that home palliative medicine is one of the accreditation criteria for community cooperation pharmacies, a questionnaire survey was conducted among managing pharmacists engaged in community cooperation pharmacies to investigate the actual status of the system to provide appropriate services, mainly pain management, to patients who need home palliative medicine. An analysis of responses to the questionnaire showed that pharmacists working in community cooperation pharmacies had a high level of understanding of the proper use of rescue doses of medical narcotics and patient guidance. Pharmacists with experience in sterile and injection preparations also had a high level of understanding of palliative medicine. On the other hand, they had a low level of understanding of the WHO method for cancer pain treatment and appropriate suggestions for opioid switching. These results indicate that the creation of learning opportunities, such as training on injectables and prescription designs, for pharmacists in community cooperation pharmacies is one of the measures that may improve their understanding of palliative medicine.

17.
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
18.
Curr Oncol ; 31(7): 4093-4104, 2024 Jul 19.
Artigo em Inglês | MEDLINE | ID: mdl-39057177

RESUMO

Despite sparse evidence and limited guidance on indications, use, and dosing, midazolam is widely used in palliative care. We aimed to describe and compare the use of midazolam in three different countries to improve clinical practice in palliative care. We performed an online survey among palliative care physicians in Norway, Denmark, and the United Kingdom (UK). The focus was indications, dosing, administration, and concomitant drugs. A web-based questionnaire was distributed to members of the respective national palliative medicine associations. The total response rate was 9.4%. Practices in the UK, Norway, and Denmark were overall similar regarding the indications of midazolam for anxiety, dyspnoea, and pain treatment in combination with opioids. However, physicians in the UK used a higher starting dose for anxiety, dyspnoea, and pain treatment compared to Norway and Denmark, as well as a higher maximum dose. Danish physicians preferred, to a higher degree, on-demand midazolam administration. Despite practice similarities in the UK, Norway, and Denmark, differences exist for midazolam dosing and administration in palliative medicine. We demonstrated a lack of consensus on how midazolam should be used in palliative care, setting the stage for future studies on the topic.


Assuntos
Midazolam , Cuidados Paliativos , Humanos , Midazolam/uso terapêutico , Midazolam/administração & dosagem , Cuidados Paliativos/métodos , Inquéritos e Questionários , Reino Unido , Dinamarca , Noruega , Medicina Paliativa , Padrões de Prática Médica/estatística & dados numéricos
19.
Clin Pediatr (Phila) ; : 99228241264123, 2024 Jul 23.
Artigo em Inglês | MEDLINE | ID: mdl-39044418

RESUMO

This study provides prevalence and mortality data for 0- to 19-year-old children and adolescents with medically documented life-threatening and life-shortening diagnoses in Germany. A secondary data analysis of more than 12 million insured persons documented by the statutory health insurance funds in Germany from 2014 to 2019 was conducted in collaboration with the German Association of Statutory Health Insurance Funds (GKV-SV) and the Institute for Applied Health Research Berlin (InGef), whose data sets vary in collection methods. Diagnosis prevalence and mortality were calculated based on selected International Classification of Diseases, 10th Revision (ICD-10) codes reported in inpatient and outpatient care settings. In Germany, the diagnosis prevalence of life-threatening and life-shortening diseases in children and adolescents ranges between 319 948 (InGef-adapted Fraser list) and 402 058 (GKV-SV). These diagnoses can be differentiated into different disease groups (Together-for-Short-Lives [TfSL] 1-4). The TfSL-1 group in which curative treatment can be feasible represents the largest one, with 190 865 persons. In 2019, approximately 1458 children and adolescents with life-threatening and life-shortening diseases died. The current diagnostic and mortality data of affected children and adolescents in Germany serve as the essential foundation for further research into the health care of the target group.

20.
Front Oncol ; 14: 1376631, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38966062

RESUMO

Introduction: Brazil is a developing and an Upper Middle Income, categorized by the World Bank. Therefore, it is a country that needs a special vision for children with oncological diseases who require Pediatric Palliative Care. This study aimed to understand the specificities of services that provide oncology services in comparison to those that do not provide oncological care. Methods: This is a descriptive, cross-sectional, and online survey study. A questionnaire was created by a multidisciplinary group of leaders from the Brazilian Pediatric Palliative Care Network and then the survey was distributed using a snowball strategy. Results: Of the 90 services that answered the questionnaire, 40 (44.4%) attended oncologic patients. The Southeast represented most of the services (57.57%), followed by the Northeast, with 18.89% (17 services), the South with 12.22% (11 services), and the Center West with 8.89% (8 services). No differences were observed in access to opioid prescriptions between the services. It was observed that those services that attended oncologic patients had a tendency to dedicate more time to Pediatric Palliative Care. Discussion: The distribution of services that cover oncology and those that do not, are similar in the different regions of Brazil. In Brazil, there are difficulties in accessing opioids in pediatrics: access to opioid prescriptions without differences revealed that even pediatric oncologists might have difficulty with this prescription, and this should improve. It is concluded that education in Pediatric Palliative Care is the key to improvements in the area.

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