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2.
Childs Nerv Syst ; 39(8): 1995-1997, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37162522

RESUMO

OBJECTIVE: Due to evidence for proton beam therapy (PBT) in pediatric central nervous system (CNS) tumors, compact proton therapy systems became commercially available to allow better integration in a hospital setting. However, these systems have a non-zero magnetic field at the level of the patient. Often, these patients have a cerebrospinal fluid shunt, and most of them are adjustable through a magnet. Whether the induced magnetic fields could interfere with adjustable shunts is unknown. METHODS: In the first five CNS tumor patients with adjustable shunts who underwent PBT, the shunt setting was controlled before, during, and after treatment with PBT. Additionally, we used an ex vivo adjustable shunt to check if the settings could be altered by the magnetic field. RESULTS: We did not observe unintentional changes in shunt settings in vivo during treatment. In ex vivo testing, the shunt settings were altered directly cranial to the exit window of PBT due to the magnetic field. CONCLUSION: Although we did not observe any shunt setting alteration during PBT in this small cohort, caution is warranted. Given the lack of high-volume data, there should be a low threshold for checking the shunt setting at the end of PBT therapy or in a symptomatic patient.


Assuntos
Neoplasias do Sistema Nervoso Central , Terapia com Prótons , Criança , Humanos , Derivações do Líquido Cefalorraquidiano , Campos Magnéticos , Próteses e Implantes
3.
Front Oncol ; 12: 926196, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35814457

RESUMO

Purpose: The aim of this study is to investigate the spectrum of neurological triad improvement in patients with diffuse intrinsic pontine glioma (DIPG) treated by re-irradiation (re-RT) at first progression. Methods: We carried out a re-analysis of the SIOP-E retrospective DIPG cohort by investigating the clinical benefits after re-RT with a focus on the neurological triad (cranial nerve deficits, ataxia, and long tract signs). Patients were categorized as "responding" or "non-responding" to re-RT. To assess the interdependence between patients' characteristics and clinical benefits, we used a chi-square or Fisher's exact test. Survival according to clinical response to re-RT was calculated by the Kaplan-Meier method. Results: As earlier reported, 77% (n = 24/31) of patients had any clinical benefit after re-RT. Among 25/31 well-documented patients, 44% (n = 11/25) had improvement in cranial nerve palsies, 40% (n = 10/25) had improvement in long-tract signs, and 44% (11/25) had improvement in cerebellar signs. Clinical benefits were observed in at least 1, 2, or 3 out of 3 symptoms of the DIPG triad, in 64%, 40%, and 24%, respectively. Patients irradiated with a dose ≥20 Gy versus <20 Gy may improve slightly better with regard to ataxia (67% versus 23%; p-value = 0.028). The survival from the start of re-RT to death was not different between responding and non-responding DIPG patients (p-value = 0.871). Conclusion: A median re-irradiation dose of 20 Gy provides a neurological benefit in two-thirds of patients with an improvement of at least one symptom of the triad. DIPG patients receiving ≥20 Gy appear to improve slightly better with regard to ataxia; however, we need more data to determine whether dose escalation up to 30 Gy provides additional benefits.

4.
Int J Health Policy Manag ; 11(6): 786-794, 2022 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-33300764

RESUMO

BACKGROUND: Palliative care involves the care for patients with severe and advanced diseases with a focus on quality of life and symptom management. Integration of palliative care with curative and/or chronic care is expected to lead to better results in terms of quality of life and reduced costs. Although initiatives in different countries in Europe choose different structures to integrate care, they face similar challenges when it comes to creating trust and aligning visions, cultures and professional values. This paper sets out to answer the following research question: what roles and attitudes do palliative care professionals need to adopt to further integrate palliative care in Europe? METHODS: As part of the European Union (EU)-funded research project InSup-C (Integrated Supportive and Palliative Care). (2012-2016), 19 semi-structured group interviews with 136 (palliative) care professionals in 5 European countries (Germany, the United Kingdom, Belgium, the Netherlands, Hungary) were conducted. A thematic analysis was conducted. RESULTS: Integration of palliative care calls for diplomatic professionals that can bring a cultural shift: to get palliative care, with its particular focus on the four dimensions (physical, psychological, social, spiritual), integrated into historically established medical procedures and guidelines. This requires (a) to find an entrance (for telling a normative story), and (b) to maintain and deepen relationships (in order to build trust). It means using the appropriate words and sending a univocal team message to patients and being grateful, modest, and aiming for a quiet revolution with curation oriented healthcare professionals. CONCLUSION: Diplomacy appears to be essential to palliative care providers for realizing trust and what can be defined as normative integration between palliative and curative and/or chronic medicine. It requires a practical wisdom about the culture and goals of regular care, as well as keeping a middle road between assimilating with values in regular medicine and standing up for the basic values central to palliative care.


Assuntos
Diplomacia , Cuidados Paliativos , Atitude , Estudos Transversais , Europa (Continente) , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Qualidade de Vida , Virtudes
5.
Radiother Oncol ; 161: 118-125, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-34102233

RESUMO

BACKGROUND: Childhood infratentorial tumor patients frequently suffer from long-term cognitive deficits. As each constituent of their treatment can lead to neurotoxicity, cascade effects can lead to profound reorganization of the underlying brain network, the so-called 'connectome'. However, to date, few studies have assessed the relationship between brain network topology, the functional role of network hubs (i.e. highly connected regions), and neurocognitive outcomes in adult survivors of childhood infratentorial tumors. METHODS: In this cross-sectional study, childhood infratentorial tumor survivors (n = 21: pilocytic astrocytoma (n = 8), ependymoma (n = 1) and medulloblastoma (n = 12)) and healthy controls (n = 21) were recruited. Using multishell diffusion-weighted MRI, microstructural organization and topology of supratentorial white matter was investigated; using a voxel-based approach, a fixel-based analysis, and a graph theoretical approach. In addition, neurocognitive subscales of the WAIS-IV intelligence test, and their relationship with nodal strength and network efficiency metrics were assessed. RESULTS: Similar to earlier studies, we observed widespread decreases in fractional anisotropy (FA) in patients compared to controls, based on voxel-based analyses. In addition, the fixel-based analyses dissociated macro- from microstructural changes, which were encountered in in infratentorial versus supratentorial brain areas, respectively. Finally, regional reorganization (i.e. differences in local efficiency) occurred mainly in hubs, which suggests a specific vulnerability of these areas. These hubs were not only mostly affected, but also most strongly correlated with the intelligence subscales. CONCLUSION: This study suggests that network hubs are functionally important for intellectual outcomes in infratentorial tumor survivors. Furthermore, these regions could be the primary targets of treatment toxicity. Validation of this specific hypothesis in larger samples is required.


Assuntos
Neoplasias Cerebelares , Neoplasias Infratentoriais , Adulto , Encéfalo , Neoplasias Cerebelares/diagnóstico por imagem , Cognição , Estudos Transversais , Humanos , Neoplasias Infratentoriais/diagnóstico por imagem , Sobreviventes
6.
BMC Palliat Care ; 19(1): 54, 2020 Apr 22.
Artigo em Inglês | MEDLINE | ID: mdl-32321491

RESUMO

BACKGROUND: Developing recommendations for how we deliver healthcare is often left to leading experts in a field. Findings from the Integrated Palliative Care in cancer and chronic conditions (InSup-C) study, which aimed to identify best practice in integrated palliative care in cancer, chronic obstructive pulmonary disease (COPD) and heart failure, led to recommendations developed through an expert consultation process. We also wanted to develop these recommendations further with participants who were largely clinicians and members of the public. METHODS: Results from the InSup-C study were disseminated through a three-week massive open online course (MOOC) which ran in 2016, 2017 and 2019. The first course helped develop the final recommendations, which were ranked by MOOC participants in the subsequent courses. MOOC participants were predominantly clinicians, but also academics and members of the public. They rated how important each recommendation was on a 9 point scale (9 most important). Descriptive statistics were used to analyse the ratings. The results were compared to findings from the consultation. RESULTS: Five hundred fifteen completed the last part of the course where the recommendations were ranked, of which 195 (38%) completed the ratings. The top recommendations related to: need to expand palliative care to non-malignant conditions; palliative care needs to include different dimensions of care including physical, psychological and spiritual; policies and regulations assessments should be made regularly; palliative care integration should be mandatory; and there should be greater availability of medicines. These differed compared to the top ranked recommendations by the consultation panel in relation to the importance of leadership and policy making. This may indicate that clinicians are more focused on daily care rather than the (inter) national agenda. CONCLUSIONS: Whilst both sets of recommendations are important, our study shows that we need to include the views of clinicians and the public rather than rely upon leading expert opinion alone. To keep recommendations fresh we need both the input of clinicians, the public and experts. When disseminating findings, MOOCs offer a useful way to gain greater reach with clinicians and the public, and importantly could be a vehicle to validate recommendations made by leading expert panels.


Assuntos
Educação a Distância/métodos , Disseminação de Informação/métodos , Pesquisa/instrumentação , Educação a Distância/tendências , Guias como Assunto , Humanos , Internet , Pesquisa/tendências , Estudantes/psicologia , Estudantes/estatística & dados numéricos , Inquéritos e Questionários
7.
Perspect Public Health ; 139(2): 97-105, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30010486

RESUMO

BACKGROUND:: Hospitalists seem to struggle with advance care planning implementation. One strategy to help them is to understand which barriers and helpful factors they may encounter. AIMS:: This review aims to give an overview on what hospitalists experience as barriers and helpful factors for having advance care planning conversations. METHOD:: A systematic synthesis of the qualitative literature was conducted. DATA SOURCES:: A bibliographic search of English peer-reviewed publications in PubMed, Embase, CINAHL, Central, PsycINFO, and Web of Science was undertaken. RESULTS:: Hospitalists report lacking communication skills which lead to difficulties with exploring values and wishes of patients, dealing with emotions of patients and families and approaching the conversation about letting a patient die. Other barriers are related to different interpretations of the concept advance care planning, cultural factors, like being lost in translation, and medicolegal factors, like fearing prosecution. Furthermore, hospitalists report that decision-making is often based on irrational convictions, and it is highly personal. Physician and patient characteristics, like moral convictions, experience, and personality play a role in the decision-making process. Hospitalists report that experience and learning from more experienced colleagues is helpful. Furthermore, efficient multidisciplinary co-operation is helping. CONCLUSION:: This systematic review shows that barriers are often related to communication issues and the convictions of the involved hospitalist. However, they seem to be preventable by creating a culture where experienced professionals can be consulted, where convictions can be questioned, and where co-operation within and between organizations is encouraged. This knowledge can serve as a basis for implementation.


Assuntos
Planejamento Antecipado de Cuidados , Comunicação , Médicos Hospitalares , Relações Médico-Paciente , Tomada de Decisões , Humanos
8.
Radiother Oncol ; 128(2): 192-197, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29729847

RESUMO

OBJECTIVE: To develop a consensus guideline for craniospinal target volume (TV) delineation in children and young adults participating in SIOPE studies in the era of high-precision radiotherapy. METHODS AND MATERIALS: During four consensus meetings (Cambridge, Essen, Liverpool, and Marseille), conventional field-based TV has been translated into image-guided high-precision craniospinal TV by a group of expert paediatric radiation oncologists and enhanced by MRI images of liquor distribution. RESULTS: The CTVcranial should include the whole brain, cribriform plate, most inferior part of the temporal lobes, and the pituitary fossa. If the full length of both optic nerves is not included, the dose received by different volumes of optic nerve should be recorded to correlate with future patterns of relapse (no consensus). The CTVcranial should be modified to include the dural cuffs of cranial nerves as they pass through the skull base foramina. Attempts to spare the cochlea by excluding CSF within the internal auditory canal should be avoided. The CTVspinal should include the entire subarachnoid space, including nerve roots laterally. The lower limit of the spinal CTV is at the lower limit of the thecal sac, best visible on MRI scan. There is no need to include sacral root canals in the spinal CTV. CONCLUSION: This consensus guideline has the potential to improve consistency of craniospinal TV delineation in an era of high-precision radiotherapy. This proposal will be incorporated in the RTQA guidelines of future SIOPE-BTG trials using CSI.


Assuntos
Neoplasias Encefálicas/radioterapia , Planejamento da Radioterapia Assistida por Computador/métodos , Adulto , Encéfalo/diagnóstico por imagem , Encéfalo/efeitos da radiação , Neoplasias Encefálicas/diagnóstico por imagem , Criança , Consenso , Feminino , Humanos , Imageamento por Ressonância Magnética/métodos , Masculino , Adulto Jovem
9.
Radiother Oncol ; 127(2): 292-298, 2018 May.
Artigo em Inglês | MEDLINE | ID: mdl-29606522

RESUMO

BACKGROUND: The EORTC phase III 26053-22054/ RTOG 0834/NCIC CTG CEC.1/CATNON intergroup trial was designed to evaluate the impact on concurrent and adjuvant temozolomide chemotherapy in newly diagnosed non-1p/19q deleted anaplastic gliomas. The primary endpoint was overall survival. We report the results of retrospective individual case reviews (ICRs) for the first patient randomized per institution to detect the compliance with the study protocol. MATERIAL AND METHODS: Sixty-nine institutions were required to submit the radiotherapy plan of their first randomized patient. Full digital datasets uploaded to the EORTC server were assessed by three independent and blinded reviewers through the EORTC radiotherapy quality assurance platform. RESULTS: Sixty-two (90%) of sixty-nine ICRs were received and assessable. Of the 62 cases, 22 were evaluated as per protocol (35.5%), 11 as acceptable variation (17.7%) and 29 were classified as unacceptable variations (46.8%). Most common unacceptable variations were related to the PTV dose (n = 19, 31%) and delineation (n = 17, 27%) processes. CONCLUSIONS: The ICR analysis showed a significant number of unacceptable variations with potential impact on tumor control and/or toxicity profile. Prospective ICRs are encouraged for future studies to prevent and correct protocol violations before start of treatment.


Assuntos
Antineoplásicos Alquilantes/uso terapêutico , Neoplasias Encefálicas/tratamento farmacológico , Neoplasias Encefálicas/radioterapia , Dacarbazina/análogos & derivados , Glioma/tratamento farmacológico , Glioma/radioterapia , Neoplasias Encefálicas/genética , Neoplasias Encefálicas/patologia , Quimioterapia Adjuvante , Deleção Cromossômica , Cromossomos Humanos Par 1 , Cromossomos Humanos Par 19 , Dacarbazina/uso terapêutico , Glioma/genética , Glioma/patologia , Humanos , Estudos Prospectivos , Garantia da Qualidade dos Cuidados de Saúde , Planejamento da Radioterapia Assistida por Computador/métodos , Estudos Retrospectivos , Temozolomida , Tomografia Computadorizada por Raios X/métodos
10.
BMC Palliat Care ; 17(1): 39, 2018 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-29490657

RESUMO

BACKGROUND: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers' every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. METHODS: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project "Patient-centred palliative care pathways in advanced cancer and chronic disease" (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. RESULTS: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers' burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. CONCLUSIONS: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the 'unit of care' and partner in caregiving, to improve their knowledge about, and access to, and the support available.


Assuntos
Cuidadores/psicologia , Cuidados Paliativos , Doente Terminal/psicologia , Idoso , Bélgica , Efeitos Psicossociais da Doença , Feminino , Alemanha , Insuficiência Cardíaca/terapia , Humanos , Hungria , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Países Baixos , Cuidados Paliativos/métodos , Doença Pulmonar Obstrutiva Crônica/psicologia , Doença Pulmonar Obstrutiva Crônica/terapia , Pesquisa Qualitativa , Inquéritos e Questionários , Reino Unido , Recursos Humanos
13.
BMC Palliat Care ; 16(1): 62, 2017 Nov 28.
Artigo em Inglês | MEDLINE | ID: mdl-29179703

RESUMO

BACKGROUND: There is a notable inequity in access to palliative care (PC) services between cancer and Chronic Heart Failure (CHF)/Chronic Obstructive Pulmonary Disease (COPD) patients which also translates into discrepancies in the level of integration of PC. By cross-examining the levels of PC integration in published guidelines/pathways for CHF/COPD and cancer in Europe, this study examines whether these discrepancies may be attributed to the content of the guidelines. DESIGN: A quantitative evaluation was made between integrated PC in published guidelines for cancer and CHF/COPD in Europe. The content of integrated PC in guidelines/pathways was measured using an 11 point integrated PC criteria tool (IPC criteria). A statistical analysis was carried out to detect similarities and differences in the level of integrated PC between the two groups. RESULTS: The levels of integration between CHF/COPD and cancer guidelines/pathways have been shown to be statistically similar. Moreover, the quality of evidence utilized and the date of development of the guidelines/pathways appear not to impact upon the PC integration in the guidelines. CONCLUSION: In Europe, the empirically observed imbalance in integration of PC for patients with cancer and CHF/COPD may only partially be attributed to the content of the guidelines/pathways that are utilized for the PC implementation. Given the similarities detected between cancer and CHF/COPD, other barriers appear to play a more prominent role.


Assuntos
Prestação Integrada de Cuidados de Saúde/tendências , Guias como Assunto/normas , Disparidades em Assistência à Saúde/normas , Cuidados Paliativos/estatística & dados numéricos , Idoso , Europa (Continente) , Feminino , Insuficiência Cardíaca/terapia , Humanos , Masculino , Neoplasias/terapia , Doença Pulmonar Obstrutiva Crônica/terapia
14.
Palliat Med ; 31(10): 946-955, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-28659022

RESUMO

BACKGROUND: Patients with advanced diseases often experience deficient continuity of care. Although integrated palliative care promotes continuity of care, it is not clear how it can be optimized to improve continuity of care experiences. AIM: To examine how relational, informational and management continuity of care are experienced by patients with advanced diseases and their family caregivers receiving care from several integrated palliative care initiatives in five European countries. DESIGN: We adopted a longitudinal qualitative study design including two interviews (interval 3 months) with patients and family caregivers focusing on how health care professionals responded to their needs. Interviews were audio-recorded and transcribed verbatim. Analysis involved a two-step qualitative content approach. SETTING/PARTICIPANTS: A total of 22 integrated palliative care initiatives (established local palliative care collaborations) were selected in Belgium, Germany, Hungary, the Netherlands and the United Kingdom. We recruited 152 patients (63% cancer, 24% chronic obstructive pulmonary disease, 13% heart failure; life expectancy <1 year; mean age 68 years, 56% female) and 92 family caregivers (mean age 61 years, 66% female). RESULTS: Trusted relationships with a small number of key health care professionals to receive tailored care and easily access help were essential. Relational continuity was often deficient, especially with general practitioners. Although informational and management continuity was often lacking in care provision, collaborative integrated palliative care initiatives were related to consistent and coherent care. CONCLUSION: Patients and family caregivers most likely experience continuity of care by having a small number of trusted health care professionals who are available, provide multidisciplinary care and regularly transfer information to all health care professionals involved. Optimizing continuity of care requires further integration of integrated palliative care initiatives with other health care professionals involved in the patients' care networks.


Assuntos
Continuidade da Assistência ao Paciente/normas , Prestação Integrada de Cuidados de Saúde/organização & administração , Cuidados Paliativos/organização & administração , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Prestação Integrada de Cuidados de Saúde/normas , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente/organização & administração , Satisfação do Paciente , Relações Profissional-Paciente , Pesquisa Qualitativa
15.
Eur J Cancer ; 73: 38-47, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-28161497

RESUMO

BACKGROUND: Overall survival (OS) of patients with diffuse intrinsic pontine glioma (DIPG) is poor. The purpose of this study is to analyse benefit and toxicity of re-irradiation at first progression. METHODS: At first progression, 31 children with DIPG, aged 2-16 years, underwent re-irradiation (dose 19.8-30.0 Gy) alone (n = 16) or combined with systemic therapy (n = 15). At initial presentation, all patients had typical symptoms and characteristic MRI features of DIPG, or biopsy-proven high-grade glioma. An interval of ≥3 months after upfront radiotherapy was required before re-irradiation. Thirty-nine patients fulfilling the same criteria receiving radiotherapy at diagnosis, followed by best supportive care (n = 20) or systemic therapy (n = 19) at progression but no re-irradiation, were eligible for a matched-cohort analysis. RESULTS: Median OS for patients undergoing re-irradiation was 13.7 months. For a similar median progression-free survival after upfront radiotherapy (8.2 versus 7.7 months; P = .58), a significant benefit in median OS (13.7 versus 10.3 months; P = .04) was observed in favour of patients undergoing re-irradiation. Survival benefit of re-irradiation increased with a longer interval between end-of-radiotherapy and first progression (3-6 months: 4.0 versus 2.7; P < .01; 6-12 months: 6.4 versus 3.3; P = .04). Clinical improvement with re-irradiation was observed in 24/31 (77%) patients. No grade 4-5 toxicity was recorded. On multivariable analysis, interval to progression (corrected hazard ratio = .27-.54; P < .01) and re-irradiation (corrected hazard ratio = .18-.22; P < .01) remained prognostic for survival. A risk score (RS), comprising 5 categories, was developed to predict survival from first progression (ROC: .79). Median survival ranges from 1.0 month (RS-1) to 6.7 months (RS-5). CONCLUSIONS: The majority of patients with DIPG, responding to upfront radiotherapy, do benefit of re-irradiation with acceptable tolerability.


Assuntos
Neoplasias do Tronco Encefálico/radioterapia , Glioma/radioterapia , Reirradiação/estatística & dados numéricos , Adolescente , Neoplasias do Tronco Encefálico/mortalidade , Criança , Pré-Escolar , Progressão da Doença , Feminino , Glioma/mortalidade , Humanos , Imageamento por Ressonância Magnética , Masculino , Análise Multivariada , Prognóstico , Estudos Retrospectivos , Análise de Sobrevida
16.
BMC Palliat Care ; 15: 49, 2016 May 13.
Artigo em Inglês | MEDLINE | ID: mdl-27177608

RESUMO

BACKGROUND: Integrated palliative care (IPC) involves bringing together administrative, organisational, clinical and service aspects in order to achieve continuity of care between all actors involved in the care network of patients receiving palliative care (PC) services. The purpose of this study is to identify literature on IPC in the Spanish context, either in cancer or other advanced chronic diseases. METHODS: Systematic review of the literature about IPC published in Spain between 1995 and 2013. Sources searched included PubMed, Cochrane Library, Cinahl, the national palliative care Journal (Medicina Paliativa), and Google. Evidence on IPC in care models, pathways, guidelines and other relevant documents were searched. Additionally, data were included from expert sources. Elements of IPC were considered based on the definition of IPC and the Emmanuel´s IPC tool. The main inclusion criterion was a comprehensive description of PC integration. RESULTS: Out of a total of 2,416 titles screened, 49 were included. We found two models describing IPC interventions achieving continuity and appropriateness of care as a result, 12 guidelines or pathways (most of them with a general approach including cancer and non-cancer and showing a theoretical IPC inclusion as measured by Emmanuel's tool) and 35 other significant documents as for their context relevance (17 health strategy documents, 14 analytical studies and 4 descriptive documents). These last documents comprised respectively: regional and national plans with an IPC inclusion evidence, studies focused on IPC into primary care and resource utilisation; and descriptions of fruitful collaboration programmes between PC teams and oncology departments. CONCLUSIONS: The results show that explications of IPC in the Spanish literature exist, but that there is insufficient evidence of its impact in clinical practice. This review may be of interest for Spanish-speaking countries and for others seeking to know the status of IPC in the literature in their home nations.


Assuntos
Prestação Integrada de Cuidados de Saúde/organização & administração , Cuidados Paliativos/organização & administração , Doente Terminal , Humanos , Neoplasias/terapia , Guias de Prática Clínica como Assunto , Qualidade da Assistência à Saúde , Qualidade de Vida , Espanha
17.
BMC Palliat Care ; 15: 26, 2016 Mar 03.
Artigo em Inglês | MEDLINE | ID: mdl-26940753

RESUMO

BACKGROUND: Palliative Care (PC) aims to improve the quality of life for patients with cancer and their families and its benefits have been demonstrated by several studies. The objective of this systematic review is to assess the integration of PC in the content of guidelines/pathways of adult cancer patients in Europe. METHODS: We included studies of adult patients with cancer published from 01/01/1995 and 31/12/2013 in Europe in six languages. We searched nine electronic databases, hand-searched six journals and also performed citation tracking. Studies were ranked using Emanuel's Integrated Palliative Care (IPC) criteria, a tool containing 11 domains to assess PC content in guidelines. Two reviewers screened the results and narrative synthesis has been employed. RESULTS: We identified a total of 28,277 potentially relevant articles from which 637 were eligible for full-text screening. The final review included 60 guidelines and 14 pathways. Eighty percent (80%) of the guidelines/pathways emphasize a holistic approach and 66% focus on PC interventions aimed at reducing suffering. Fifty seven percent (57%) did not discuss referral criteria for PC. Of all studies, five fulfilled at least 10/11 IPC criteria. Differences existed with regard to the referral criteria for bereavement care and the continuous adjustment of goals of care. CONCLUSION: Overall, most of the identified guidelines/pathways highlighted the importance of the holistic approach of IPC. The studies that were found to fulfil at least 10/11 Emanuel's IPC criteria could serve as benchmarks of IPC.


Assuntos
Diretrizes para o Planejamento em Saúde , Neoplasias/terapia , Cuidados Paliativos/métodos , Encaminhamento e Consulta , Adulto , Europa (Continente) , Humanos , Qualidade de Vida
18.
BMC Palliat Care ; 15: 18, 2016 Feb 13.
Artigo em Inglês | MEDLINE | ID: mdl-26872741

RESUMO

BACKGROUND: Despite the positive impact of Palliative Care (PC) on the quality of life for patients and their relatives, the implementation of PC in non-cancer health-care delivery in the EU seems scarcely addressed. The aim of this study is to assess guidelines/pathways for integrated PC in patients with advanced Chronic Heart Failure (CHF) and Chronic Obstructive Pulmonary Disease (COPD) in Europe via a systematic literature review. METHODS: Search results were screened by two reviewers. Eligible studies of adult patients with CHF or COPD published between 01/01/1995 and 31/12/2013 in Europe in 6 languages were included. Nine electronic databases were searched, 6 journals were hand-searched and citation tracking was also performed. For the analysis, a narrative synthesis was employed. RESULTS: The search strategy revealed 26,256 studies without duplicates. From these, 19 studies were included in the review; 17 guidelines and 2 pathways. 18 out of 19 focused on suffering reduction interventions, 13/19 on a holistic approach and 15/19 on discussions of illness prognosis and limitations. The involvement of a PC team was mentioned in 13/19 studies, the assessment of the patients' goals of care in 12/19 and the advance care planning in 11/19. Only 4/19 studies elaborated on aspects such as grief and bereavement care, 7/19 on treatment in the last hours of life and 8/19 on the continuation of goal adjustment. CONCLUSION: The results illustrate that there is a growing awareness for the importance of integrated PC in patients with advanced CHF or COPD. At the same time, however, they signal the need for the development of standardized strategies so that existing barriers are alleviated.


Assuntos
Planejamento Antecipado de Cuidados/estatística & dados numéricos , Insuficiência Cardíaca/terapia , Cuidados Paliativos/estatística & dados numéricos , Doença Pulmonar Obstrutiva Crônica/terapia , Doença Crônica/terapia , Europa (Continente) , Humanos , Cuidados Paliativos/métodos , Qualidade de Vida
19.
Palliat Med ; 29(2): 157-63, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25634899

RESUMO

BACKGROUND: A well-organized palliative care service is a prerequisite for offering good palliative care. Reliable and feasible quality indicators are needed to monitor the quality of their organization. AIM: To test feasibility and reliability of a previously developed set of quality indicators in settings and services that provide palliative care across Europe. METHODS: A total of 38 quality indicators, applicable in all types of settings, rated in a RAND Delphi process, and operationalized into 38 yes/no questions, were used. Descriptives statistics, factor and reliability analyses, analysis of variance, and chi-square analyses were used. DESIGN: Cross-sectional online survey. SETTING/PARTICIPANTS: Questionnaires were sent to representatives of 217 palliative care settings in 25 countries. Included settings were hospices, inpatient dedicated palliative care beds, palliative care outpatient clinics, palliative care units, day care centers for palliative care, palliative care home support teams, inpatient palliative care support teams, care homes, and nursing homes. RESULTS: All invited 25 European Association of Palliative Care countries took part. In total, 107 out of 217 participants responded (57%). The quality indicators were reduced to four coherent sub-scales, being "equipment and continuity of care," "structured documentation of essential palliative care elements in the medical record," "training and appraisal of personnel," and "availability of controlled drugs." No significant differences in quality criteria between the different types of settings and services were identified. CONCLUSION: The set of quality indicators appeared to measure four reliable domains that assess the organization of different palliative care settings. It can be used as a starting point for quality improvement activities.


Assuntos
Cuidados Paliativos/organização & administração , Cuidados Paliativos/normas , Indicadores de Qualidade em Assistência à Saúde/normas , Continuidade da Assistência ao Paciente , Estudos Transversais , Técnica Delphi , Educação Médica Continuada , Europa (Continente)/epidemiologia , Estudos de Viabilidade , Humanos , Prontuários Médicos/normas , Preparações Farmacêuticas/provisão & distribuição , Projetos Piloto , Garantia da Qualidade dos Cuidados de Saúde , Qualidade da Assistência à Saúde/normas , Reprodutibilidade dos Testes
20.
Pain Pract ; 15(6): 572-9, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-24766671

RESUMO

OBJECTIVE: In Europe, volunteers have an important role in the delivery of palliative care. As part of the EU co-funded Europall project, 4 aspects of volunteering in palliative care were studied for 7 European countries (Belgium, England, France, Germany, the Netherlands, Poland, and Spain). These included (1) involvement of volunteers in palliative care, (2) organization of palliative care volunteering, (3) legal regulations concerning volunteering, and (4) education and training of palliative care volunteering. DESIGN/SETTING/METHODS: A literature search combined with an interview study. Information from the scientific literature, and country-specific policy documents were obtained and completed, along with data of consecutive semi-structured interviews with experts in the field of palliative care in the participating countries. RESULTS: In all countries, volunteers appeared to be involved in palliative care, yet their involvement across health care settings differed per country. England, for example, has the highest number of volunteers whereas Spain has the lowest number. Volunteering is embedded in law and regulations in all participating countries except for England and the Netherlands. In all participating countries, training programs are available and volunteers are organized, both on a national and a regional level. CONCLUSION: This study provides a descriptive overview of volunteer work in palliative care in 7 European countries, with a focus on the organizational aspects. Further research should concentrate on the roles and responsibilities of volunteers in the care for the terminally ill in different European health systems.


Assuntos
Cuidados Paliativos/organização & administração , Voluntários , Bélgica , Europa (Continente) , Feminino , Humanos , Países Baixos , Espanha , Recursos Humanos
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