Search

Background: Palliative care for persons with Parkinson’s disease (PD) is developing. However, little is known about the experiences of patients with PD in the palliative phase and of their family caregivers. Objective: To explore needs of patients with PD in the palliative phase and of their family caregivers. Methods: A mixed methods case study design. Health care professionals included patients for whom the answer on the question “Would you be surprised if this patient died in the next 12 months?” was negative. At baseline, and after six and twelve months, we conducted semi-structured interviews with patients and caregivers. Participants completed questionnaires on quality of life, disease burden, caregiver burden, grief, and positive aspects of caregiving. We analyzed quantitative data using descriptive statistics, while we used thematic analysis for qualitative data. Results: Ten patients and eight family caregivers participated, of whom five patients died during the study period. While the quantitative data reflected a moderate disease burden, the qualitative findings indicated a higher disease burden. Longitudinal results showed small differences and changes in time. Patients reported a diverse range of symptoms, such as fatigue, immobility, cognitive changes, and hallucinations, which had a tremendous impact on their lives. Nevertheless, they rated their overall quality of life as moderate to positive. Family caregivers gradually learned to cope with difficult situations such delirium, fluctuations in functioning and hallucinations. They had great expertise in caring for the person with PD but did not automatically share this with health care professionals. Patients sensed a lack of time to discuss their complex needs with clinicians. Furthermore, palliative care was rarely discussed, and none of these patients had been referred to specialist palliative care services. Conclusion: Patients with PD experienced many difficulties in daily living. Patients seems to adapt to living with PD as they rated their quality of life as moderate to positive. Family caregivers became experts in the care for their loved one, but often learned on their own. An early implementation of the palliative care approach can be beneficial in addressing the needs of patients with PD and their family caregivers.

Background and purpose Haptotherapy is a type of mind-body therapy that makes use of affective touch. This study aims to provide insights in reasons for haptotherapy for patients with cancer, and in experiences of haptotherapists with these patients. Materials and methods In a cross-sectional study, a survey was conducted among 536 Dutch haptotherapists. Multiple-choice and open-ended questions were analyzed both quantitatively and qualitatively. Results Of 272 (50.7%) responding haptotherapists, 167 (61.5%) had experience with treating people with cancer. Most frequently, combinations of emotional problems and a disturbed body experience were reported as reasons for haptotherapy. Haptotherapists emphasized the need for affective touch to restore patients’ body connection. Conclusion Two-thirds of the respondents treat patients with cancer, addressing the interaction of body and mind. Reasons for consultation cover a wide range of problems in multiple dimensions, in which a disturbed body experience in combination with emotional problems is mentioned most often.

BackgroundParkinson's disease (PD) is a progressive degenerative disease without curative treatment perspectives. Even when palliative care for people with PD seems to be beneficial, the need for palliative care is often not timely recognized.AimOur aim was to develop a tool that can help healthcare professionals in timely identifying palliative care needs in people with PD.DesignWe used a mixed-methods design, including individual and focus group interviews and a three-round modified Delphi study with healthcare professionals from a multidisciplinary field.ResultsData from the interviews suggested two distinct moments in the progressive PD trajectory: 1) an ultimate moment to initiate Advance Care Planning (ACP); and 2) the actual start of the palliative phase. During the Delphi process, six indicators for ACP were identified, such as presence of frequent falls and first unplanned hospital admission. The start of the palliative phase involved four indicators: 1) personal goals have started to focus on maximization of comfort; 2) care needs have changed; 3) PD drug treatment has become less effective or an increasingly complex regime of drug treatments is needed; and 4) specific PD-symptoms or complications have appeared, such as significant weight loss, recurrent infections, or progressive dysphagia. Indicators for both moments are included in the RADboud indicators for PAlliative Care Needs in Parkinson's Disease (RADPAC-PD) tool.ConclusionThe RADPAC-PD may support healthcare professionals in timely initiating palliative care for persons with PD. Identification of one or more indicators can mark the need for ACP or the palliative phase. We expect that applying the RADPAC-PD, for example on an annual basis throughout the PD trajectory, can facilitate identification of the palliative phase in PD patients in daily practice. However, further prospective research is needed on the implementation of the RADPAC-PD.

Background: Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products. Aim: To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies. Design: An online survey analysed using descriptive statistics. Setting/participants: Eighteen principal investigators in 11 countries conducting one of three European-funded studies. Results: There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues. Conclusion: Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations.

Background A previous study found that care provided by a nurse practitioner (NP) during oncological or palliative care was highly regarded. These patients, however, were considered a special population due to suffering from life-threatening illnesses. It remains unclear whether the results are transferable to patients with chronic conditions. Patient's perceptions of the quality of NP care have reflected that it equals or exceeds that of physicians, but the root causes of these remarks remain unclear. Purpose To describe the difference in perception of NP care by patients suffering from chronic heart failure (CHF) or inflammatory bowel disease (IBD) in contrast with NP oncological or palliative care. Methodological orientation A qualitative study from a phenomenological perspective was conducted. Data were analyzed using Colaizzi's seven-step method and the Metaphor Identification Procedure. Sample In 2018 and 2019, 16 outpatients receiving CHF or IBD care were interviewed. Conclusions Although chronic and life-threatening diseases may differentiate patients' perspectives, it can be generally stated that patients value NPs to be reliable, helpful, and empathic. Patients feel empowered, at peace and in control thanks to integrated care by dedicated experts. Implications for practice Outpatients highly appreciate the "communicator role" and "skilled companionship" performed by NPs, to fulfill their needs for attention to the "complete picture." Therefore, further consideration of these competencies is recommended.

Aims: We aimed to investigate (a) the association between body mass index (BMI) and self-rated health (SRH) and (b) BMI’s predicted value for SRH within a representative population in the Skaraborg Project. Methods: This was a longitudinal observational study. A random population of 2816 individuals were included in the study between 2002 and 2005, and a representative sample of these individuals were invited consecutively for a follow-up visit between 2012 and 2014. At follow-up, data from 1327 participants were collected concerning anthropometric variables, blood samples and validated questionnaires regarding lifestyle factors. Results: A significant inverse association was observed between BMI and SRH both at baseline and at follow-up, with all p-values for trend being ⩽0.001 in both men and women. This association was observed even after adjusting for confounders such as co-morbidity, age, sex, education, marital status and lifestyle factors. In addition, the longitudinal analyses showed that BMI at baseline was inversely associated with SRH at follow-up in both sexes (odds ratio (OR)=1.1, confidence interval (CI) 1.02–1.16, p=0.017 in men; and OR=1.1, CI 1.04–1.14, p=0.001 in women). These findings remained in participants whose weight increased ( p=0.022) or was stable ( p=0.004), while it was not seen in individuals who lost weight over the years ( p=0.340). Conclusions: SRH is inversely associated with BMI in Swedish men and women. High BMI predicted low SRH from a longitudinal perspective, independent of co-morbidities, except for individuals who lost weight over the years. This knowledge emphasises the importance of an understanding and empathetic attitude towards these individuals.

Aims and objectives To explore what meaning patients associate with their experiences with a nurse practitioner (NP) in oncological or palliative care. Background Care provided by NPs results in high patient satisfaction, mostly related to the assurance of continuity of care, and to receiving information and advice on coping with the disease. Research shows that health care provided by NPs equals the quality of care provided by physicians. Patients may be even more satisfied with care provided by NPs. Because patients' views have only been examined quantitatively, underlying experiences and meanings remain unclear. Design A qualitative study from a phenomenological perspective. Methods In 2017, seventeen outpatients aged 45-79 years, receiving oncological or palliative care, were interviewed in depth. Data were analysed by Colaizzi's seven-step method and by the Metaphor Identification Procedure. Results Six fundamental themes emerged: the NP as a human (1) and as a professional (2), the NP providing care (3) and cure (4), NPs organising patient care (5) and the impact on patient's well-being (6). MIP analysis revealed six metaphors: NP means trust; is a travel aid; is a combat unit; is a chain; is a signpost; and is a technician. Conclusions NPs mean a lot to patients. NPs are valued as reliable, helpful and empathic. Patients feel empowered, at peace and in control as a result of the support, guidance and attention to them as a person as well as to aspects of the disease. Providing expert, integrated care makes patients feel safe and embraced in the NP's expertise. Relevance to clinical practice This qualitative insight into patients' experiences will contribute to the body of knowledge on patients' perceptions of the treatment and support provided by NPs. It adds to the further development of the NPs' profession and education.

Item does not contain fulltext AIM: To gain insight into the quantity and quality of spiritual care provided by nurses in curative cancer care, from the perspectives of both patients and nurses. BACKGROUND: Cancer causes patients to suffer from diverse symptoms related to their illness. Nurses play an important role in the care for people with cancer. Next to paying attention to physical and psychosocial needs, caring for spiritual needs of patients also belongs to good nursing. Most of the research concerning spirituality and spiritual care in relation to cancer has focused on palliative care. DESIGN: A mixed methods design will be used in two sub-phases. First, we will conduct semi-structured interviews with 72-90 patients coming from nine hospitals. Subsequently, approximately the same number of nurses working on oncology wards of these hospitals will be interviewed. METHODS: We meticulously composed both interview guides so that only near the end of the interview explicit terms like spirituality and spiritual care are explicitly mentioned. Until that point, we will use other words to define the concepts. Next to the interviews, demographics, answers to some statements and several questionnaires will be gathered. Content analysis supported by DEDOOSE will be used to answer the research questions. DISCUSSION: The insight we will gain in this study enables us to compare experiences from the perspective of both patients and nurses. This can also provide us with suggestions for the improvement of nursing care for people with cancer who are treated with curative intent, a topic until now hardly addressed.

ObjectivesTo explore perceptions, experiences and expectations with respect to palliative care of patients with severe mental illness (SMI) and an incurable, life-limiting chronic illness.MethodsFace-to-face semistructured interviews were conducted with 12 patients (10 of them living in a mental healthcare institution) with severe mental and physical health issues in the Netherlands. A semistructured interview guide was used to elicit perceptions of, experiences with and expectations regarding palliative care. Data were analysed using inductive content analysis.ResultsAnalysis of the data revealed eight categories: perceptions on health and health issues, coping with illness and symptoms, experiences with and wishes for current healthcare, contact with relatives and coresidents, experiences with end of life of relatives and coresidents, willingness to discuss end of life and death, wishes and expectations regarding one’s own end of life and practical aspects relating to matters after death. These categories were clustered into two separate themes: current situation and anticipation of end of life. Interviewees with SMI appeared not accustomed to communicate about end-of-life issues, death and dying due to their life-threatening illness. They tended to discuss only their current situation and, after further exploration of the researcher, the terminal phase of life. They seemed not engaged in their future palliative care planning.ConclusionsFindings of this study highlight inadequacies in advance care planning for patients with SMI. Results suggest using values, current and near wishes, and needs as a starting point for establishing a gradual discussion concerning goals and preferences for future medical and mental treatment and care.

Background Parkinson’s disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. The risk of complications increases with progression of the disease. These complications have a tremendous impact on the quality of life of people with PD. The aim of this study was to examine health care professionals’ experiences of potential barriers and facilitators in providing palliative care for people with PD in the Netherlands. Methods This was a qualitative descriptive study. The data were collected from 10 individual in-depth interviews and three focus groups (n = 29) with health care professionals. Health care professionals were selected based on a positive answer to the question: “In the past 2 years, did you treat or support a person with PD who subsequently died?” The data were analyzed by thematic text analysis. Results Health care professionals supported the development of a palliative care system for PD but needed to better understand the essence of palliative care. In daily practice, they struggled to identify persons’ needs due to interfering PD-specific symptoms such as cognitive decline and communication deficits. Timely addressing the personal preferences for providing palliative care was identified as an important facilitator. Health care professionals acknowledged being aware of their lack of knowledge and of their little competence in managing complex PD. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity. Conclusions Health care professionals experienced several facilitators and barriers to the provision of palliative care to people with PD. There is a need to improve the knowledge on complex PD and the continuity of information, as well as optimize coordination and deliver care based on a persons’ preferences. Additional training can help to become more knowledgeable and confident. Electronic supplementary material The online version of this article (10.1186/s12904-019-0441-6) contains supplementary material, which is available to authorized users.

Background Systematic research into palliative care (PC) for people with substance use disorder (SUD) and multiple problems is scarce. The existing literature shows problems in the organizational structure of this care, e.g., lack of clear care pathways. Furthermore, negative attitudes of healthcare professionals (HCPs) and stigmatization surrounding SUD, and patients’ care-avoidance and non-disclosure of substance use are hindering factors in providing timely and person-centered PC. Furthermore, the experiences and needs of patients and proxies themselves are unknown. Therefore, this study aims to explore which problems and needs patients with SUD and multiple problems, and their proxies, experience in a PC phase. Methods Data-collection of this qualitative study consisted of semi-structured interviews with patients with SUD and multiple problems in a PC phase, and their proxies, about their experiences in PC and their well-being. Interviews were inductively analyzed. Results Nine patients and three proxies were included. Six patients suffered from COPD, one patient from cirrhosis of the liver and two patients from both. Seven patients stayed in a nursing home and two had a room in either a social care service (hostel) or an assisted living home where medical care was provided. Five themes were identified: 1) healthcare delivery (including HCPs behaviour and values); 2) end-of-life (EOL) preferences (mostly concerning only the individual patient and the ‘here-and-the-now’); 3) multidimensional problems; 4) coping (active and passive) and; 5) closed communication. Proxies’ experiences with healthcare differed. Emotionally, they were all burdened by their histories with the patients. Conclusions This study shows that talking about and anticipating on PC with this patient-group appears hard due to patients’ closed and avoiding communication. Furthermore, some of patients’ EOL-preferences and needs, and coping-strategies, seem to differ from the more generally-accepted ideas and practices. Therefore, educating HCPs in communicating with this patient-group, is needed. Electronic supplementary material The online version of this article (10.1186/s12904-019-0443-4) contains supplementary material, which is available to authorized users.

Contains fulltext : 203001.pdf (Publisher’s version ) (Open Access) Dementia and Parkinson's disease are incurable neurological conditions. Patients often experience specific, complex, and varying needs along their disease trajectory. Current management typically employs a multidisciplinary team approach. Recognition is growing that this team approach should also address palliative care issues to optimize quality of life for patient and family caregivers, but it remains unclear how palliative care is best delivered. To inspire future service development and research, we compare the trajectories and conceptualization of palliative care between dementia and Parkinson's disease. Both Parkinson's disease and dementia are characterized by a protracted course, with progressive but fairly insidious development of disability. However, patients with Parkinson's disease may experience relatively stable periods initially but with time, a wide range of debilitating symptoms develops, many of which do not respond well to treatment. Eventually, dementia develops in most Parkinson patients, while motor disability develops in many dementia patients. In both diseases, symptoms such as pain, apathy, sleeping problems, falls, and a high caregiver burden are prevalent. Advance care planning has benefits in terms of being prepared before the disease progresses into a stage with communication problems or severe cognitive impairment. However, for both conditions, the protracted disease trajectories complicate conceptualization of palliative care through different stages of the disease, with pertinent questions such as when to offer what interventions pro-actively. Given the similarities and differences, we should develop palliative approaches that are partially generic and partially disease-specific. These should be integrated seamlessly with disease-specific care. Substantial research is already being performed on dementia palliative care. This may also inform the further development of palliative care for Parkinson's disease, including an evaluation of palliative interventions and services.

Background Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. Methods This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. Results The core category identified was ‘Patient-related considerations when issuing DNAR orders’. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of ‘The decision-maker role’ was as important as that of ‘The decision procedure in an organisational context’. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. Conclusion The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.

BACKGROUND: Physicians are increasingly confronted with people with intellectual disabilities (ID) who are facing life-threatening diseases. We aimed to explore when and based on which information sources and signals physicians recognised that a patient with ID would die in the foreseeable future. Insights may help in identifying patients in need of palliative care. METHOD: In this study, 81 physicians for people with ID and 16 general practitioners completed a retrospective survey about their last case of a patient with ID with a non-sudden death. RESULTS: More than 20% of all physicians foresaw death not until the last week of life. In 30% of all patients, the physician did not discuss the start of the palliative care phase until the last week. The most reported information sources based on which physicians foresaw death were the physicians themselves and professional caregivers. We found 40 different signals that lead to physicians' foreseeing death. These were not only medical signals but also behavioural and physical signals. CONCLUSIONS: Results indicate that the physicians' ability to foresee death is a result of a process of growing awareness in which multiple signals from different information sources converge. This demands continuous multi-disciplinary communication because people involved have their own unique interactions with the patient and can therefore contribute to a growing and timely awareness of patients' death in the future.

Background Empirical evidence suggests that integrated palliative care (IPC) increases the quality of care for palliative patients and supports professional caregivers. Existing IPC initiatives in Europe vary in their design and are hardly comparable. InSuP-C, a European Union research project, aimed to build a taxonomy of IPC initiatives applicable across diseases, healthcare sectors and systems. Methods The taxonomy of IPC initiatives was developed in cooperation with an international and multidisciplinary focus group of 18 experts. Subsequently, a consensus meeting of 10 experts revised a preliminary taxonomy and adopted the final classification system. Results Consisting of eight categories, with two to four items each, the taxonomy covers the process and structure of IPC initiatives. If two items in at least one category apply to an initiative, a minimum level of integration is assumed to have been reached. Categories range from the type of initiative (items: pathway, model or guideline) to patients’ key contact (items: non-pc specialist, pc specialist, general practitioner). Experts recommended the inclusion of two new categories: level of care (items: primary, secondary or tertiary) indicating at which stage palliative care is integrated and primary focus of intervention describing IPC givers’ different roles (items: treating function, advising/consulting or training) in the care process. Conclusions Empirical studies are required to investigate how the taxonomy is used in practice and whether it covers the reality of patients in need of palliative care. The InSuP-C project will test this taxonomy empirically in selected initiatives using IPC. ispartof: BMJ Supportive & Palliative Care vol:6 issue:1 pages:14-20 ispartof: location:England status: published

Background The specific palliative care needs and problems of patients with a substance use disorder and multiple problems, and those of their proxies, are under recognized Besides, the organization of palliative care, including the division of health care professionals’ responsibilities, is often unclear. Perspectives of patients and proxies are hardly known. We describe the outline of a study designed to explore how palliative care for patients with a substance use disorder is organized in the Netherlands and to explore problems and needs, as well as possible improvements from the healthcare professionals’, patients’ and proxies’ perspective. The aim of this protocol paper is to provide insights in ways to conduct research with vulnerable research participants and to offer a detailed description of the study design. The broader study aims to gain insight in and formulate recommendations on how to improve palliative care for patients with a substance use disorder. Methods A qualitative study with patients, proxies and healthcare professionals. Semi-structured interviews will be held with 10–15 patients who suffer from a severe substance use disorder. They are in a palliative care trajectory and either diagnosed with a chronic or life-threatening disease or, as a result of addictive behavior, a physical deterioration without the prospect of cure. Semi-structured interviews will also be held with 5–10 proxies. Healthcare professionals, volunteers and/or ‘experts-by-experience’ (n = 24–40) will be participating in semi-structured group interviews. All (group) interviews will be thematically analyzed. Additionally, a strengths, weaknesses, opportunities and threats (SWOT) analysis will be applied to the group interview data with the aim to summarize and concretize the findings. Discussion Everyone has a right to an optimal end-of-life phase of life and a dignified dying process. This study will provide valuable knowledge about palliative care for patients with a substance use disorder and explicitly bring to light the needs and problems of the patients and their proxies and healthcare professionals in a palliative care phase. Electronic supplementary material The online version of this article (10.1186/s12904-018-0351-z) contains supplementary material, which is available to authorized users.

Background: Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare professionals’ perspectives. Aim: (1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction. Design: Cross-sectional explorative design. Setting/participants: We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands. Results: About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians ( p Conclusion: Palliative care professionals are not always present or recognised as such in patients’ care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients seem satisfied with care provision as long as continuity of care is provided.

Background Attention for spirituality should be an integral part of professionals' caregiving. Particularly, nurses caring for patients with cancer might have opportunities to give attention to this dimension. Objective The aim of this study was to gain insight in the way and extent to which nurses during daily caregiving observe and explore spiritual issues of hospitalized patients with cancer. Methods We performed an ethnographic study with participant observation. Data were collected in 2015 during 4 shifts at the medical oncology department of a university hospital. The researcher, a spiritual care provider (chaplain) wearing the same kind of uniform as the nurses, observed the nurses, participated in their actions, and interviewed them after the shift. Results Although the patients did send many implicit and explicit messages concerning spiritual issues, the nurses did not explore them. If noticed, 3 barriers for exploring spiritual issues were mentioned by the nurses: lack of time, conflict with their mindset, and being reserved to talk about such issues. Conclusions During their daily caregiving to patients with a life-threatening illness, nurses have many opportunities to explore spiritual issues, but they do not often recognize them. If they do, they tend not to explore the spiritual issues. Implications for practice Communication training for nurses is necessary to develop skills for exploring the spiritual dimension in patients with cancer. In such training, attention to the misconception that such a conversation requires a lot of time and for recognizing signals from patients inviting an exploration of their concerns is necessary.

Contains fulltext : 182151.pdf (Publisher’s version ) (Open Access) BACKGROUND: Parkinson's disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and - if needed - the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD. METHODS/DESIGN: We will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5-15 patients with PD and their family caregiver will be followed prospectively for 8-12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver. DISCUSSION: This study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.

Background: Parkinson's Disease Nurse Specialists (PDNS) play an important role in the care for patients with Parkinson's disease (PD) and their caregivers. Until now, there were no nursing guidelines in PD, and interventions were based solely on daily clinical practice because there is no evidence to support the merits of nursing interventions. Consequently, there is little uniformity in current care delivery.Objective: Developing a guideline for PDNS.Methods: We developed a guideline based on a questionnaire among PDNS and a literature review, supplemented with expert opinion plus the input of patients and caregivers. The questionnaire was filled in by 97 PDNS and 51 generic nurses with knowledge of PD to identify barriers in PD nursing care. Subsequently, we did a systematic literature search and transformed these sources of information into practice recommendations, which were developed according to international standards for guideline development.Results: Based on the results of the questionnaire we identified seven specific core areas: defining the role of PDNS in terms of caseload, education, competences and care coordination; medication adherence; provision of information and education; coping; caregiver support; urogenital function and orthostatic hypotension. The systematic literature search identified 186 studies, of which 33 studies were finally analyzed. Furthermore, we developed practice recommendations based on good clinical practice for the following areas: self-care, mental functioning, mobility, nutrition, sexuality, work, sleep, palliative care and complementary (integrative) care.Conclusion: This guideline provide ground to harmonize care delivery by PDNS in clinical practice, and offer a foundation for future research.

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 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.

Background Early identification of pain and other problems is an important aspect of palliative care. Although nurses have an important role in palliative care, little is known about nurses’ perceptions of proactive palliative care. Objectives This study aimed to explore nurses’ perceptions and experiences of proactive identification of problems and requirements among patients with palliative care needs. Methods This was a qualitative study in which 16 nurses working in palliative care took part in two focus groups. Results All of the nurses underlined the importance of their early involvement in palliative care. Anticipation of possible future problems, advice and information about end-of-life care and palliative care facilities, and assessment of patients’ wishes regarding care and preferred place of death were mentioned as important aspects of the early identification of problems and needs. Four themes were identified: the start of proactive palliative care; communication, support, and guidance; advocating for patients; and cooperation with health professionals. Conclusions Nurses’ involvement in proactive palliative care is important in supporting patients’ palliative care management. Ongoing education, focused on multidisciplinary communication and cooperation, professional development, and empowerment of nurses, remains of utmost importance.

Item does not contain fulltext Palliative medicine is a young specialty that is officially recognized in relatively few countries. The World Health Organization published an adapted definition in 2002, describing palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness. When the accent is shifting from curative to palliative, the goal of management is the maintenance or improvement of the patient's quality of life. The different dimensions of palliative care and the multitude of types of care to be provided require a multidisciplinary, well-functioning team, effective communication and a clear task division between primary and hospital care. Considering the complexity of care for incurable patients, a multidisciplinary approach is a prerequisite to balance curative and palliative intervention options. Optimal functioning of a team requires excellent training, communication and a description of the tasks and responsibilities of each team member. More and more advanced care planning is introduced in palliative care, focusing on an early identification of patients in a palliative trajectory and on the prevention of annoying symptoms, hoping that this approach results in an improved quality of life for the individual patient, less useless technical investigations and a better end-of-life care on the place the patient and his family desires.

Item does not contain fulltext BACKGROUND: Insights into symptoms and interventions at the end of life are needed for providing adequate palliative care, but are largely lacking for people with intellectual disabilities (IDs). OBJECTIVES: We aimed at determining the prevalence rates of physician-reported symptoms from the Edmonton Symptom Assessment System (ESAS) at the moment that physicians recognized patient's death in the foreseeable future. In addition, we aimed at exploring provided interventions as reported by physicians in the period between physicians' recognition of death in the foreseeable future and patients' death. MEASUREMENTS: In this study, 81 physicians for people with IDs (ID-physicians) completed a retrospective survey about their last patient with IDs with a nonsudden death. RESULTS: On average, patients suffered from three of the eight ESAS symptoms. Fatigue (83%), drowsiness (65%), and decreasing intake (57%) were most reported. ID-physicians reported a median number of four interventions. Interventions were mostly aimed at somatic problems, such as pain and shortness of breath. Burdensome interventions such as surgery or artificial respiration were least or not reported. Palliative sedation was provided in a third of all cases. CONCLUSION: Although ID-physicians reported a variety of their patients' symptoms and of provided interventions at the end of life, using adequate symptom assessment tools suitable for people with IDs and continuous multidisciplinary collaboration in palliative care are essential to capture symptoms as fully as possible.

Background: Integrated Palliative Care (PC) strategies are often implemented following models, namely standardized designs that provide frameworks for the organization of care for people with a progressive life-threatening illness and/or for their (in)formal caregivers. The aim of this qualitative systematic review is to identify empirically-evaluated models of PC in cancer and chronic disease in Europe. Further, develop a generic framework that will consist of the basis for the design of future models for integrated PC in Europe.Methods: Cochrane, PubMed, EMBASE, CINAHL, AMED, BNI, Web of Science, NHS Evidence. Five journals and references from included studies were hand-searched. Two reviewers screened the search results. Studies with adult patients with advanced cancer/chronic disease from 1995 to 2013 in Europe, in English, French, German, Dutch, Hungarian or Spanish were included. A narrative synthesis was used.Results: 14 studies were included, 7 models for chronic disease, 4 for integrated care in oncology, 2 for both cancer and chronic disease and 2 for end-of-life pathways. The results show a strong agreement on the benefits of the involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place.Conclusion: Based on our findings, a generic framework for integrated PC in cancer and chronic disease is proposed. This framework fosters integration of PC in the disease trajectory concurrently with treatment and identifies the importance of employing a PC-trained multidisciplinary team with a threefold focus: treatment, consulting and training.

Background According to the World Health Organization (WHO) definition, palliative care should be initiated in an early phase and not be restricted to terminal care. In the literature, no validated tools predicting the optimal timing for initiating palliative care have been determined. Aim The aim of this study was to systematically develop a tool for GPs with which they can identify patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), and cancer respectively, who could benefit from proactive palliative care. Design A three-step procedure, including a literature review, focus group interviews with input from the multidisciplinary field of palliative healthcare professionals, and a modified Rand Delphi process with GPs. Method The three-step procedure was used to develop sets of indicators for the early identification of CHF, COPD, and cancer patients who could benefit from palliative care. Results Three comprehensive sets of indicators were developed to support GPs in identifying patients with CHF, COPD, and cancer in need of palliative care. For CHF, seven indicators were found: for example, frequent hospital admissions. For COPD, six indicators were found: such as, Karnofsky score ≤50%. For cancer, eight indicators were found: for example, worse prognosis of the primary tumour. Conclusion The RADboud indicators for PAlliative Care Needs (RADPAC) is the first tool developed from a combination of scientific evidence and practice experience that can help GPs in the identification of patients with CHF, COPD, or cancer, in need of palliative care. Applying the RADPAC facilitates the start of proactive palliative care and aims to improve the quality of palliative care in general practice.

Contains fulltext : 52154.pdf (Publisher’s version ) (Closed access) INTRODUCTION: In order to facilitate GPs in their work and increase the possibilities for patients to remain at home, it is important to identify the obstacles which hinder the delivery of primary palliative care. From previous research we learned about some of the problems experienced by GPs. In this survey we aimed to identify the prevalence of such problems in providing palliative care and its determinants. METHODS: The prevalence of obstacles and its determinants were identified by a questionnaire to 320 GPs in three regions of the Netherlands. Obstacles were grouped as follows: communication, organisation & co-ordination of care, knowledge & expertise, integrated care, time for relatives. The potential determinants were GP characteristics and expertise development activities. RESULTS: The response rate was 62.3%. GPs experienced considerable obstacles in all aspects of palliative care. The most prevalent were: problems with bureaucratic procedures (83.9%), the time necessary to arrange home care technology (61.1%) and the difficulties accompanied with the wish or necessity to obtain extra care (56.3%). In general, more years of GP experience and the participation in (multidisciplinary) case discussions were associated with less perceived obstacles. DISCUSSION: Based on the results of our survey policymakers and practitioners can plan and set priorities in handling the obstacles. There is a high necessity of firstly overcoming the barriers within organisation and coordination of care. Furthermore, our study can help in choosing the (additional) expertise needed in the future and in the realisation of the preferred expertise advancement activities. Palliative Medicine 2007; 21: 697-703.

Contains fulltext : 53609.pdf (Publisher’s version ) (Closed access) OBJECTIVE: To gain insight into the experiences of a palliative care patient and her husband who were living on borrowed time. METHODS: A qualitative single case design was used. Systematic content analysis of the interview data, obtained in an in-depth semi-structured interview, from the husband and wife was conducted to extract themes relating to living on borrowed time. RESULTS: Three themes were identified: shifts in the interpretation of physical signs and symptoms, altered view of the future and altered choices and priorities. CONCLUSION: The identified themes lead to a better understanding of the phenomenon of living on borrowed time. Yet, refinement of, and variation within the themes still need to be studied in order to get more grips on the themes and to be better able to help patients to integrate the 'new reality'. PRACTICE IMPLICATIONS: Our findings can be used to support professionals in the practical application of care when their patients need to integrate the 'new reality' and seek new equilibrium, e.g. converted into a conversational guide, or used for educational purposes.

Contains fulltext : 154329.pdf (Publisher’s version ) (Open Access) BACKGROUND: Most patients with advanced cancer, debilitating COPD or chronic heart failure (CHF) live at home. General practitioners (GPs) asked for guidance in how to recognize patients in need of palliative care in a timely way and to structure anticipatory care. For that reason, we developed a training for GPs in identifying patients in need of palliative care and in structuring anticipatory palliative care planning and studied its effect on out-of-hours contacts, contacts with their own GP, hospitalizations and place of death. METHODS: We performed a cluster randomised controlled trial. GPs in the intervention group were trained in identifying patients in need of palliative care and anticipatory care planning. Next, for each identified patient, they were offered a coaching session with a specialist in palliative care to fine-tune a structured care plan. The GPs in the control group did not receive training or coaching, and were asked to provide care as usual. After one year, characteristics of patients deceased of cancer, COPD or CHF in both study groups were compared with mixed effects models for out-of-hours contacts (primary outcome), contacts with their own GP, place of death and hospitalizations in the last months of their life (secondary outcomes). As a post-hoc analysis, of identified patients (of the intervention GPs) these figures were compared to all other deceased patients, who had not been identified as in need of palliative care. RESULTS: We did not find any differences between the intervention and control group. Yet, only half of the trained GPs (28) identified patients (52), which was only 24 % of the deceased patients. Those identified patients had significantly more contacts with their own GP (B 4.5218; p

Contains fulltext : 47782.pdf (Publisher’s version ) (Closed access) BACKGROUND: General practitioners (GPs) play a crucial part in palliative care. The quality of care can be improved by investigating and addressing barriers perceived by GPs in daily practice. The aim of this study was to investigate GPs' task perception and barriers involved in palliative care. METHODS: Qualitative focus group study. We gathered together a group of GPs representing a broad range of experience in palliative care. Content analysis was performed to derive a comprehensive view of tasks and barriers in daily palliative care. RESULTS: GPs described their palliative care tasks as satisfactory and varied, but burdensome. Palliative care tasks included somatic and psychosocial care. Opinions differed with respect to whether the coordination of care belonged to the primary GP tasks. Barriers were classified according to three levels: (1) personal: barriers related to knowledge, skills, emotions; (2) relational: barriers concerning communication and collaboration; (3) organizational: barriers related to the organization of care and compartmentalization in healthcare. CONCLUSIONS: This study revealed a complex web of tasks and barriers. It may be possible to trace back a problem (lack of knowledge, for example) on the personal level to an isolated knowledge gap, but the problem may well have originated from communication or compartmentalization problems. To maintain GPs' feeling of being at ease with palliative care requires helping them acquire the appropriate balance between technical and organizational interventions and a compassionate orientation to their terminally ill patients.

Introduction: Integration of palliative care in treatment pathways, palliative care networks and institutional collaborations in health services delivery seems to be a promising approach to reduce fragmentation and discontinuity. Integrated Palliative Care (IPC) approaches in Europe are largely unknown and under-investigated. Evidence is largely based on evaluation of individual services and proxy views. More research is needed to explore experiences of patients, however national ethical requirements complicate doing prospective patient studies in palliative care. Patient studies at international scale that must fulfil ethical requirements of several countries are even more complicated. Therefore it is necessary to develop a patient study protocol which can be implemented in five European countries. Aim: To develop a patient study protocol that can be implemented in five European countries in order to explore experiences of patients with cancer, COPD and CHF, family and professional caregivers with IPC. 14th International Conference on Integrated Care, Brussels, April 2-4 2014 International Journal of Integrated Care – Volume 14, 01 October – URN:NBN:NL:UI:10-1-116107– http://www.ijic.org/ Methods: Ethical procedures in each partner nation were investigated in order to know which requirements needed to be met. A template protocol was developed by InSup-C (EC FP7 funded) research teams and discussed in InSup-C meetings. This template was adjusted to the most strict requirements. Results: A study protocol for a longitudinal patient study in five European countries has been developed. This includes perceived quality of life, quality of care, burden/rewards of care giving, symptoms and collaboration between caregivers in the patient’s care network. Some regulations (e.g. safety reporting) have been adjusted to country specific regulations provided that these would not alter the study procedures. Conclusion: It is feasible to develop a palliative care patient study protocol that can be executed in five European countries. The patient study protocol will be implemented in Spring 2014.

Background The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration. Methods/Design Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis. Discussion This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe. Electronic supplementary material The online version of this article (doi:10.1186/1472-684X-13-52) contains supplementary material, which is available to authorized users.

Introduction: Integrated palliative care (IPC) should be responsive to patients’ palliative care needs. However, knowledge about the best way to provide IPC is scarce. Evidence is mainly based on perspectives of professionals and carers. Therefore, the InSup-C project conducted a qualitative study on the experiences of patients’ and their carers’ with care provision in several IPC initiatives in five European countries. The aim of this study was to examine how IPC initiatives respond to patients’ problems and needs. Methods: IPC initiatives, i.e. cross-sector collaborations between professionals to provide palliative care, were recruited in five European countries (Belgium, Germany, Hungary, The Netherlands and the UK) between June 2014 and August 2015. From these initiatives patients with cancer, COPD and Chronic Heart failure (CHF) with a prognosis less than 12 months and their carers were recruited. Semi-structured interviews were conducted at baseline and after 3 months using uniform interview protocols. Interview protocols focused on patients’ problems and needs, identification of professionals in patients' care networks, quality of relationships with professionals and inter-professional collaboration. Interviews were transcribed verbatim. Transcriptions were coded using an internationally agreed codebook based on a qualitative thematic approach. Results: Hundred and seventy-five patients and 90 family carers were interviewed. Of 157 patients, 10% were from Belgium, 22% were from Germany, 22% were from the United Kingdom, 27% were from Hungary and 20% were from the Netherlands. Regarding diagnostic group, 62% had cancer, 13% had CHF and 25% had COPD. Mean age was 67 years and 55% were female. Of 90 family caregivers, 17% were from Belgium, 11% were from Germany, 14% were from the United Kingdom, 33% were from Hungary and 24% were from the Netherlands. Mean age was 59 years and 68% were female. The following four themes emerged from the data and related to person-centred care: - Compassionate care: Patients and carers valued professionals who saw the person beyond the illness and who were involved with them. This enabled a personal relationship and care that was being tailored to patient’s holistic problems and needs. - Patient-centred information: Patients and carers found it important that professionals were honest in giving information about prognosis and treatment possibilities and were patient in their explanation. This allowed patients and carers to ask questions and give their opinions. Patient-centred information provided trust and support in times of uncertainty. - Availability of caregivers: Patients and carers appreciated professionals who ‘were there’ for them, that they knew who to contact in case of needs and that professionals responded adequately when it was necessary. - Inter-professional collaboration: Patients and carers found it important that professionals transferred information and consulted each other when necessary. This resulted in professionals who were up-to-date about the patient and prevented them from telling their story over and over again. It also gave them a sense of trust when they experienced that professionals in their network looked after them together. When the four themes were available in care provision patients and carers were satisfied about care received. Many examples of person-centred care were reported, resulting in patients and carers who experienced care provision as a safety net of professionals who feel responsible and work together in order to adequately respond to their palliative care needs. In cases where these components were absent or insufficiently present, it sometimes resulted in unmet needs, uncertainty or dissatisfaction. Indeed, examples of professionals who only focused on the illness instead of seeing patients as a person or who did not collaborate properly were also reported. Frequent complaints were based on a lack information transfer in the professional-patient and/or professional-professional relationship. Although not always desirable, instances of patients or family caregivers who actively transferred information between professionals themselves were reported. In some cases, assertiveness of patients or carers concerning their dissatisfaction lead to improved care experiences. Country specific differences were found regarding availability of medicines, the role of hospices and main professionals. Discussion and conclusion: These results provide valuable insight in the aspects that are deemed important by patients and their carers from five European countries in order to realise person-centred integrated palliative care. These will contribute to the improvement of integrated palliative care in Europe and will therefore be interesting for both clinicians and policy makers who are involved in this field. On behalf of InSup-C: EU FP7 funded project on integrated palliative care in Europe

IntroductionTo support general practitioners (GPs) in providing early palliative care to patients with cancer, chronic obstructive pulmonary disease or heart failure, the RADboud university medical centre indicators for PAlliative Care needs tool (RADPAC) and a training programme were developed to identify such patients and to facilitate anticipatory palliative care planning. We studied whether GPs, after 1 year of training, identified more palliative patients, and provided multidimensional and multidisciplinary care more often than untrained GPs.MethodsWe performed a survey 1 year after GPs in the intervention group of an RCT were trained. With the help of a questionnaire, all 134 GPs were asked how many palliative patients they had identified, and whether anticipatory care was provided. We studied number of identified palliative patients, expected lifetime, contact frequency, whether multidimensional care was provided and which other disciplines were involved.ResultsTrained GPs identified more palliative patients than did untrained GPs (median 3 vs 2; p 0.046) and more often provided multidimensional palliative care (p 0.024). In both groups, most identified patients had cancer.ConclusionsRADPAC sensitises GPs in the identification of palliative patients. Trained GPs more often provided multidimensional palliative care. Further adaptation and evaluation of the tools and training are necessary to improve early palliative care for patients with organ failure.Trial registration numberNTR2815; post results.

Contains fulltext : 53704.pdf (Publisher’s version ) (Closed access) This study aims to determine the extent and nature of problems in palliative care that are newly identified in the consultation process and the factors influencing their identification. The consultation process includes clarification of problems mentioned by professionals requesting advice. Data are derived from the standard registration forms of Palliative Care Consultation teams. Multilevel logistic regression analysis was carried out with newly identified problem as dependent variable. Fifty seven percent of problems (n=7854) were newly identified. Most newly identified problems were related to physical and pharmacological problems. If psychosocial/spiritual problems were identified, this occurred in most cases through clarification (70%). Newly identified problems were more likely to be identified in the domain of spiritual and psychosocial problems, in bedside consultations, in requests from clinical physicians, and for patients accommodated in a hospice or hospital. Explicit clarification of problems facilitates the identification and addressing of a more comprehensive and specific scope of problems.

Contains fulltext : 47673.pdf (Publisher’s version ) (Closed access) GOALS OF WORK: Professional care providers need a substantial basis of competence and expertise to provide appropriate palliative care. Little is known about the problems professionals experience in their palliative care provision in daily practice or about the nature of the advice and support they request from experts. Our aim was to investigate the extent to which professionals requested assistance from palliative care consultation teams and the reasons behind these requests to trace any gaps they experience in the provision of palliative care. METHODS: As part of a large national palliative care development programme, we studied requests for consultation made by professional care providers over a 2-year period. The requests for consultation were recorded on a specially developed standard registration form and classified according to 11 domains relevant to palliative care. MAIN RESULTS: Professional care providers requested 4351 consultations on account of 8413 specific problems in 11 quality-of-life and quality-of-care domains. The distribution of problems over these domains was unbalanced: 42.2% of the specific problems were physical, while the percentages of psychological, pharmacological and organizational problems were 7.7, 12.5 and 12.8%, respectively. In contrast, issues of a spiritual nature or concerned with daily functioning were raised infrequently (1.1 and 0.9%). Details of the specific problems in all the domains are described in the text and tables. CONCLUSIONS: The results of our study form a valid basis on which to develop and implement improvements in palliative care. We recommend that future well-founded policies for palliative care should incorporate palliative care consultation as well as educational and organizational interventions.

PURPOSE: Advanced radiotherapy treatments require appropriate quality assurance (QA) to verify 3D dose distributions. Moreover, increase in patient numbers demand efficient QA-methods. In this study, a time efficient method that combines model-based QA and measurement-based QA was developed; i.e., the hybrid-QA. The purpose of this study was to determine the reliability of the model-based QA and to evaluate time efficiency of the hybrid-QA method. METHODS: Accuracy of the model-based QA was determined by comparison of COMPASS calculated dose with Monte Carlo calculations for heterogeneous media. In total, 330 intensity modulated radiation therapy (IMRT) treatment plans were evaluated based on the mean gamma index (GI) with criteria of 3%∕3mm and classification of PASS (GI ≤ 0.4), EVAL (0.4 0.6), and FAIL (GI ≥ 0.6). Agreement between model-based QA and measurement-based QA was determined for 48 treatment plans, and linac stability was verified for 15 months. Finally, time efficiency improvement of the hybrid-QA was quantified for four representative treatment plans. RESULTS: COMPASS calculated dose was in agreement with Monte Carlo dose, with a maximum error of 3.2% in heterogeneous media with high density (2.4 g∕cm(3)). Hybrid-QA results for IMRT treatment plans showed an excellent PASS rate of 98% for all cases. Model-based QA was in agreement with measurement-based QA, as shown by a minimal difference in GI of 0.03 ± 0.08. Linac stability was high with an average GI of 0.28 ± 0.04. The hybrid-QA method resulted in a time efficiency improvement of 15 min per treatment plan QA compared to measurement-based QA. CONCLUSIONS: The hybrid-QA method is adequate for efficient and accurate 3D dose verification. It combines time efficiency of model-based QA with reliability of measurement-based QA and is suitable for implementation within any radiotherapy department.

Background According to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs) in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patient's tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer. Methods/Design A two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts. Discussion We expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined. Trial Registration The Netherlands National Trial Register: NTR2815

Purpose: To test the hypothesis that daily intravenous pre-hydration decreases renal toxicity and improves chemotherapy adherence in patients receiving daily cisplatin to concurrent radiotherapy for locally advanced non-small cell lung cancer (NSCLC). Patients and methods: Patients with locally advanced NSCLC were treated between 2008 and August 2012 with daily 6 mg/m 2 cisplatin as a bolus injection in 10 ml; of saline and 66 Gy/24 fr radiotherapy in 32 days. Since January 2011, the administration of cisplatin was routinely preceded by intravenous pre-hydration with 1 L of natriumchloride 0.9%. Patients were divided in a pre-hydrated (PH) and nonpre-hydrated (NPH) cohort. Serum-creatinine and glomerular filtration rate (GFR) were assessed twice weekly during treatment. Retrospectively, baseline data, toxicity, treatment adherence and efficacy data were compared. Results: Of the 356 patients 232 NPH patients and 100 PH patients were eligible. Patient-and treatment characteristics compared equally. The median of the maximum decrease in GFR was 24% and 8% for NPH and PH (p < 0.01), respectively. Sixty-nine percent of the patients in the NPH group completed the 24 administrations of cisplatin, as compared to 83% of the PH group (p < 0.01). Nineteen percent vs. 2% of the patients in the NPH and PH group discontinued cisplatin treatment because of renal toxicity. Surprisingly, the incidence of acute esophageal toxicity grade P2 decreased following prehydration: 62% vs. 34% (p < 0.001) for the NPH and PH groups, respectively. The one-year survival was comparable between groups (75% for NPH and 71% for PH). Conclusion: Daily pre-hydration was associated with a reduced rate of both renal and acute esophageal toxicity and an increased chemotherapy adherence in patients receiving daily dose of cisplatin and concurrent radiotherapy for locally advanced NSCLC.

Contains fulltext : 171828.pdf (Publisher’s version ) (Open Access) 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.