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Background: There is a gap between readily available evidence of best practice and its use in everyday palliative care. The IMPACT study evaluated the potential of facilitated use of Quality Indicators as tools to improve palliative care in different settings in England. Methods: 1) Modelling palliative care services and selecting a set of Quality Indicators to form the core of an intervention, 2) Case studies of intervention using the Quality Indicator set supported by an expert in service change in selected settings (general practice, community palliative care teams, care homes, hospital wards, in-patient hospices) with a before-and-after evaluation, and 3) realist evaluation of processes and outcomes across settings. Participants in each setting were supported to identify no more than three Quality Indicators to work on over an eight-month period in 2013/2014. Results: General practices could not be recruited to the study. Care homes were recruited but not retained. Hospital wards were recruited and retained, and using the Quality Indicator (QI) set achieved some of their desired changes. Hospices and community palliative care teams were able to use the QI set to achieve almost all their desired changes, and develop plans for quality improvements. Improvements included: increasing the utility of electronic medical records, writing a manual for end of life care, establishing working relationships with a hospice; standardising information transfer between settings, holding regular multi-disciplinary team meetings, exploration of family carers' views and experiences; developing referral criteria, and improvement of information transfer at patient discharge to home or to hospital. Realist evaluation suggested that: 1) uptake and use of QIs are determined by organisational orientation towards continuous improvement; 2) the perceived value of a QI package was not powerful enough for GPs and care homes to commit to or sustain involvement; 3) the QI set may have been to narrow in focus, or more specialist than generalist; and 4) the greater the settings''top-down' engagement with this change project, the more problematic was its implementation. Conclusions: Whilst use of QIs may facilitate improvements in specialist palliative care services, different QI sets may be needed for generalist care settings. [ABSTRACT FROM AUTHOR]

Background: Palliative care is mainly restricted to terminal care. General practitioners (GPs) are not trained to early identify palliative patients with cancer, COPD or heart failure. With the help of the RADboud indicators for PAlliative Care needs (RADPAC), we trained GPs to identify patients' needs and to make a proactive care plan. They were also able to join two role-plays where they discussed the patient's future, and consulted a palliative care consultant to fine-tune the care plan. We evaluated the programme with the GPs and consultants and noted its impact on their daily practice. Methods: Two years after they had participated in the programme, we held semi-structured interviews with the GPs and a focus group interview with the consultants and performed a thematic content analysis. Results: Six consultants and nine GPs participated in the programme. Most GPs and consultants mentioned positive changes in the thinking or acting of GPs regarding early palliative care. A number continued to use the tool to identify patients; most of the others noted they had internalised the indicators. Although half of them still considered discussing end-of-life aspects difficult, particularly in patients with organ failure, the others were more easily able to discuss the future with their palliative patients. Conclusion: Although most GPs and consultants were positive about the training programme and applying it in daily practice, we conclude that in future programmes, more attention needs to paid to timely identification of palliative patients with COPD or CHF and how to discuss the future with them. [ABSTRACT FROM AUTHOR]

Background Pain and neuropathic symptoms impact quality of life of patients with cancer. To obtain more insight in the prevalence, severity, and treatment of neuropathic symptoms in patients with cancer and their interference with daily activities, we conducted a cross-sectional study at the outpatient clinic of a Dutch university hospital. Methods A cross-sectional study among outpatients with cancer. To identify pain, its intensity, quality, and interference with daily activities, the Brief Pain Inventory ( BPI) was used. Neuropathic symptoms were identified with the Douleur Neuropathique ( DN4) interview and pain characteristics with the McGill Pain Questionnaire ( MPQ). Pain medication and adjuvant analgesics were also collected with a prestructured questionnaire. Descriptives, chi-squared tests, t-tests, and a logistic regression analysis were conducted. Results 892 patients completed the questionnaires. Twenty-three percent ( n = 204) reported moderate to severe pain, and 19% ( n = 170) scored positive on neuropathic symptoms ( DN4 ≥ 3). Particularly in patients with a rating on a numeric rating scale ( NRS) < 5, existence of neuropathic symptoms significantly increased interference with daily activities. Of patients with neuropathic symptoms, 8% received adjuvant pain treatment. Receiving curative treatment, using a systemic drug with neurotoxicity, having had an operation, and having had a lymph node dissection independently contributed to having neuropathic symptoms. Conclusions This study shows that over 40% of the patients with moderate to severe pain also have neuropathic symptoms, causing increased interference with daily activities. Most of these patients do not receive adjuvant analgesics. There is a need to improve management of neuropathic symptoms in patients with cancer. [ABSTRACT FROM AUTHOR]

Background Pain assessment and monitoring is a prerequisite for its adequate treatment in patients with cancer. We performed a feasibility study on the use of short message service ( SMS) and interactive voice response ( IVR) to improve pain management in patients with cancer, including terminally ill patients. Methods During 4 weeks, palliative patients received a daily IVR asking to provide their pain score on a numeric rating scale ( NRS) with their mobile phone. If pain was moderate or high, the nurse contacted the patient the same day and, if required, adapted the treatment. Results Thirteen of the 17 invited patients agreed to participate (79%), four died during the study period. IVR/ SMS provides a reliable assessment of the pain intensity, and if required, treatment can be rapidly adapted. All patients were satisfied with the intervention. There were no difficulties for the, mainly older, patients in handling this communication way on pain intensity. The mean pain score decreased from 4.78 to 3.33 ( P = 0.07). The pain scale of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire ( EORTC QLQ-C30) decreased significantly from 56 to 35 ( P = 0.047). Discussion Monitoring and managing pain with IVR/ SMS in patients with cancer at home appeared acceptable and feasible, even in terminally ill patients. The reluctance for actively contacting the professional in case of increased pain intensity is circumvented in this setting. Further research, preferably in a controlled study, is needed to establish the use of this intervention in a larger patient population. [ABSTRACT FROM AUTHOR]

The Dutch clinical practice guideline on the diagnosis and management of pain in patients with cancer was published in 2008 and intensively promoted to healthcare professionals who see patients with cancer. One of the most important recommendations is the systematic registering of the pain and its intensity. To evaluate in which degree this part of the practice guideline is implemented, we analyzed the medical records of patients attending the outpatient oncological clinic in an academic hospital, a large teaching hospital, and 4 smaller peripheral hospitals. None of the participating hospitals assessed pain by a standardized scale. Reference to pain in the medical record happened more frequently in the academic hospital than in the other hospitals. The frequency of recording pain in the medical record in the academic hospital was much higher in this study than the one previously reported, whereas the findings in the other hospitals were comparable. There may be several reasons for the difference in reporting rate of pain in patients with cancer. Our findings indicate that the clinical practice guideline with regard to pain registration is poorly implemented in oncology outpatient clinics. More efforts should be made to generate the awareness for the need of pain registration. [ABSTRACT FROM AUTHOR]

Background: People with dementia can benefit from a palliative care approach. Recommendations, such as those of the EAPC have been proposed to strengthen the provision of palliative care for this group of patients. Yet, it remains challenging for professionals to identify when a person with dementia is in need of palliative care. The objective of this study therefore was to explore when professionals in long-term care settings consider a person with dementia in need of palliative care. Methods: Teams with in total 84 professionals working in 13 long-term care settings from 6 countries (France, Germany, Italy, Norway, Poland and the Netherlands) received a case-vignette concerning a person with dementia recently admitted to a nursing home. Teams were asked to discuss when they considered people with dementia eligible for palliative care. The constant comparative method was used to analyse their answers. Results: Three different time points in the disease trajectory when people with dementia were considered to be eligible for palliative care were extracted: (1) early in the disease trajectory; (2) when signs and symptoms of advanced dementia are present; and (3) from the time point that curative treatment of co-morbidities is futile. Yet, none of these time points was uniformly considered by the professional teams across Europe. In some cases, professionals working in the same nursing home didn't even reach consensus when considering persons with dementia eligible for palliative care. Conclusion: The results of the study identified that professionals across Europe have different opinions regarding the time point when to consider a person with dementia in need of palliative care. [ABSTRACT FROM AUTHOR]

Background: In the past decades, many new insights and best practices in palliative care, a relatively new field in health care, have been published. However, this knowledge is often not implemented. The aim of this study therefore was to identify strategies to implement improvement activities identified in a research project within daily palliative care practice. Methods: A nominal group technique was used with members of the IMPACT consortium, being international researchers and clinicians in cancer care, dementia care and palliative care. Participants identified and prioritized implementation strategies. Data was analyzed qualitatively using inductive coding. Results: Twenty international clinicians and researchers participated in one of two parallel nominal group sessions. The recommended strategies to implement results from a research project were grouped in five common themes: 1. Dissemination of results e.g. by publishing results tailored to relevant audiences, 2. Identification and dissemination of unique selling points, 3. education e.g. by developing e-learning tools and integrating scientific evidence into core curricula, 4. Stimulation of participation of stakeholders, and 5. consideration of consequences e.g. rewarding services for their implementation successes but not services that fail to implement quality improvement activities. Discussion: The added value of this nominal group study lies in the prioritisation by the experts of strategies to influence the implementation of quality improvement activities in palliative care. Efforts to ensure future use of scientific findings should be built into research projects in order to prevent waste of resources. [ABSTRACT FROM AUTHOR]

Main Objective: Since palliative sedation is considered a complex intervention, consultation teams are increasingly established to support general practice. This study aims to offer insight into the frequency and characteristics of expert consultations regarding palliative sedation. Methods: We performed a retrospective analysis of a longitudinal database. This database contained all patient-related consultations by Dutch Palliative Care Consultation teams, that were requested between 2004 and 2011. We described the frequency and characteristics of these consultations, in particular of the subgroup of consultations in which palliative sedation was addressed (i.e. PSa consultations). We used multivariate regression analysis to explore consultation characteristics associated with a higher likelihood of PSa consultations. Main Results and Their Significance: Of the 44,443 initial consultations, most were requested by general practitioners (73%) and most concerned patients with cancer (86%). Palliative sedation was addressed in 18.1% of all consultations. Palliative sedation was relatively more often discussed during consultations for patients with a neurologic disease (OR 1.79; 95% CI: 1.51–2.12) or COPD (OR 1.39; 95% CI: 1.15–1.69) than for patients with cancer. We observed a higher likelihood of PSa consultations if the following topics were also addressed during consultation: dyspnoea (OR 1.30; 95% CI: 1.22–1.40), agitation/delirium (OR 1.57; 95% CI: 1.47–1.68), exhaustion (OR 2.89; 95% CI: 2.61–3.20), euthanasia-related questions (OR 2.65; 95% CI: 2.37–2.96) or existential issues (OR 1.55; 95% CI: 1.31–1.83). Conclusion: In conclusion, PSa consultations accounted for almost one-fifth of all expert consultations and were associated with several case-related characteristics. These characteristics may help clinicians in identifying patients at risk for a more complex disease trajectory at the end of life. [ABSTRACT FROM AUTHOR]

Background: The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a growing number of new insights and best practices in palliative care have been published, they are often not implemented in daily practice. The aim of this integrative review is to provide an overview of implementation strategies that have been used to improve the organisation of palliative care.Methods: Using an integrative literature review, we evaluated publications with strategies to improve the organisation of palliative care. Qualitative analysis of the included studies involved categorisation of the implementation strategies into subgroups, according to the type of implementation strategy.Results: From the 2379 publications identified, 68 studies with an experimental or quasi-experimental design were included. These studies described improvements using educational strategies (n = 14), process mapping (n = 1), feedback (n = 1), multidisciplinary meetings (n = 1) and multi-faceted implementation strategies (n = 51). Fifty-three studies reported positive outcomes, 11 studies reported mixed effects and four studies showed a limited effect (two educational and two multi-faceted strategies).Conclusions: This review is one of the first to provide an overview of the available literature in relation to strategies used to improve the organisation of palliative care. Since most studies reported positive results, further research is needed to identify and improve the effects of strategies aiming to improve the organisation of palliative care. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective Patients with cancer often face physical, psychological, social, spiritual, and emotional symptoms. Our aim was to study symptoms and issues of hospitalized patients with cancer in Indonesia, a country with strong family ties, and how family members, nurses, and physicians deal with them. Methods In 2011, 150 hospitalized cancer patients in 3 general hospitals in Indonesia were invited to fill in a questionnaire, which was based on the validated Problems and Needs of Palliative Care (short version) questionnaire. Descriptive statistics were performed. Results Of 119 patients (79%) who completed the questionnaire, 85% stated that their symptoms and issues were addressed. According to these patients, financial (56%), autonomy (36%), and psychosocial (34%) issues were most often addressed by the family alone. Physical symptoms (52%) and spiritual issues (33%) were addressed mainly by a combination of family, nurses, and physicians. Conclusions Hospitalized patients with cancer in Indonesia felt that most of their symptoms and issues had been addressed, and the family was highly involved. The strong family ties in Indonesian culture may have contributed to this family role. More research is needed to clarify how this influences patient outcome, quality of care, and quality of life of both the patients and their families, along with the degree of partnership between families and professionals. This information might help answer the question what advantages and disadvantages the family role in caring for a hospitalized patient with cancer generates for the patient, the family, and professional caregivers. [ABSTRACT FROM AUTHOR]

Background Patients with advanced cancer experience problems and unmet needs. However, we assume that patients with advanced cancer will have more problems and unmet needs in a country with a lower economic status than in an economically stronger country. We studied whether patients with advanced cancer in Indonesia have more problems and unmet needs than a similar group of patients in the Netherlands. Methods We performed a cross-sectional survey. We compared the data for 180 Indonesian and 94 Dutch patients relating to 24 items of the Problems and Needs in Palliative Care-short version questionnaire. We performed descriptive and χ2 analysis with Bonferroni correction. Results The prevalence of most physical problems, including pain, was similar in the 2 groups. In Indonesia, financial problems were the most common: 70 to 80% vs. 30 to 42% in the Netherlands. In Indonesia, 25 to 50% of the patients reported psychological and autonomy problems versus 55 to 86% in the Netherlands. The Indonesian group had many more unmet needs for each problem (> 54%) than the Dutch group (< 35%). Conclusion Apparently, economic and cultural differences hardly influence physical problems. Nonetheless, fewer Indonesian patients reported psychological and autonomy problems than Dutch patients. This difference contradicts our hypothesis. However, we found more unmet needs for professional attention in Indonesia than in the Netherlands, which is compatible with our hypothesis. These simple comparative data provide interesting insights into problems and unmet needs and give rise to our new hypothesis about cultural influences. This hypothesis should be studied in more depth. [ABSTRACT FROM AUTHOR]

Purpose: Pain is a major problem in all cancer stages. Cancer pain guidelines are developed to improve management of pain. It is unclear whether these recommendations are applied in daily practice. Therefore, the objective of this study was to assess medical oncologists' adherence to an evidence-based clinical practice guideline in cancer pain management and their confidence in treatment choices.Methods: A cross-sectional case vignette survey describing a patient with intractable pancreatic cancer and pain was sent to all 268 medical oncologists registered at the Netherlands Association of Internal Medicine. Descriptive statistics were conducted.Results: Sixty-three of 268 medical oncologists (24 %) completed the survey. Adherence to the different recommendations of the guideline ranged from 18 to 100 %. Confidence for treatment choice ranged from 5.6 to 9.5 on a Numeric Rating Scale (0-10). Most of the responding oncologists (94 %) adhered to prescribing paracetamol as first-line pain treatment, and all prescribed a laxative in combination with opioids to prevent constipation. However, only 24 % of the respondents adhered to the guideline when first-line treatment had insufficient effect. Additionally, only 35 % adhered to the recommendation for insomnia treatment providing psychosocial support or using a multidimensional pain questionnaire besides pharmacological treatment. Finally, only 18 % adhered to the recommendation to perform a multidimensional pain assessment when disease worsens and pain increases.Conclusions: The recommendations of the guideline have been partly adopted in cancer pain practice by medical oncologists. Particularly, pain assessment is not applied in the recommended manner. Therefore, implementation strategies should focus on adequate pain assessment in patients with cancer. [ABSTRACT FROM AUTHOR]

Purpose: Pain is a major problem in all cancer stages. Cancer pain guidelines are developed to improve management of pain. It is unclear whether these recommendations are applied in daily practice. Therefore, the objective of this study was to assess medical oncologists' adherence to an evidence-based clinical practice guideline in cancer pain management and their confidence in treatment choices. Methods: A cross-sectional case vignette survey describing a patient with intractable pancreatic cancer and pain was sent to all 268 medical oncologists registered at the Netherlands Association of Internal Medicine. Descriptive statistics were conducted. Results: Sixty-three of 268 medical oncologists (24 %) completed the survey. Adherence to the different recommendations of the guideline ranged from 18 to 100 %. Confidence for treatment choice ranged from 5.6 to 9.5 on a Numeric Rating Scale (0-10). Most of the responding oncologists (94 %) adhered to prescribing paracetamol as first-line pain treatment, and all prescribed a laxative in combination with opioids to prevent constipation. However, only 24 % of the respondents adhered to the guideline when first-line treatment had insufficient effect. Additionally, only 35 % adhered to the recommendation for insomnia treatment providing psychosocial support or using a multidimensional pain questionnaire besides pharmacological treatment. Finally, only 18 % adhered to the recommendation to perform a multidimensional pain assessment when disease worsens and pain increases. Conclusions: The recommendations of the guideline have been partly adopted in cancer pain practice by medical oncologists. Particularly, pain assessment is not applied in the recommended manner. Therefore, implementation strategies should focus on adequate pain assessment in patients with cancer. [ABSTRACT FROM AUTHOR]

Background Being involved in caring for family members during illness is part of the Indonesian culture, even during hospitalization. It is unknown which factors influence the quality of life (QoL) of family members taking care of their loved ones. The present study aims to identify factors influencing the QoL of family caregivers of hospitalized patients with cancer in Indonesia. Methods A cross-sectional survey was performed. Data were collected in a general hospital in Yogyakarta from September to December 2011. Family caregivers of patients with cancer were invited to participate. Regression analysis was used to determine which aspects of caring and which demographic characteristics influenced their QoL. The Caregiver QoL Index-Cancer questionnaire was used to measure the QoL. Results One hundred of 120 invited caregivers (83%) completed the questionnaire. Being involved in psychological issues in caring ( β = 0.374; p = 0.000), younger age ( β = −0.282; p = 0.003), no previous caring experience ( β = −0.301; p = 0.001), and not being the spouse ( β = −0.228; p = 0.015) negatively influenced the QoL and explained 31% of the variation (adjusted R2 = 0.312; F = 12.24; p = 0.000). Gender, education level, and time spent on caring did not influence the QoL of family caregivers. Conclusions Our findings identified modifiable factors such as dealing with psychological issues and lack of experience in caring that negatively influenced the QoL of family caregivers. These factors are potential targets for intervention strategies. Education and intervention programs focusing on dealing with psychological problems in cancer care might improve the QoL of both patients and their families. Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background Systematic pain registration and assessment with a visual analog scale ( VAS) or numeric rating scale ( NRS) at each visit are key recommendations in one of the most recent guidelines on cancer pain management. It is unclear whether this recommendation is applied. Objectives The aim was to explore registration of pain in medical records of patients visiting the medical oncology outpatient clinic. Methods In a multicenter study in six Dutch hospitals, data were extracted from medical records of 380 outpatients with cancer. Data of the first three visits at the outpatient clinic were studied. Descriptive statistics were conducted. Results In 23% of all 987 visits at the outpatient clinic, pain or absence of pain was registered, and in an additional 15%, a nonspecific symptom description was given. Regarding all other visits, (62%) pain or absence of pain was not documented at all. Pain measurement using a VAS or NRS was documented in only one visit. Pain was more often registered in medical records of patients with metastasis, as well as in those of patients with urogenital tumors. Conclusion Pain in medical oncology outpatients is not systematically registered in their medical records. With one exception, pain was not registered with a VAS or NRS. Yet, registration and assessment of pain to monitor pain are essential to evaluate and adapt pain treatment over time. Pain registration has not improved since 2001 and therefore implementing the recommendations regarding systematic monitoring of pain is needed. [ABSTRACT FROM AUTHOR]

Background: Pain is a common symptom in patients with multiple myeloma (MM). Many patients are dependent on analgesics and in particular opioids, but there is limited information on the impact of these drugs and their side effects on health-related quality of life (HRQoL). Method: In a cross-sectional study, semi-structured interviews were performed in 21 patients attending the hospital with symptomatic MM on pain medications. HRQoL was measured using items 29 and 30 of the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30. Results: Patients were able to recall a median of two (range 0-4) analgesics. They spontaneously identified a median of two (range 1-5) side effects attributable to their analgesic medications. Patients' assessment of HRQoL based on the EORTC QLQ-C30 questions 29/30 was mean 48.3 (95 % CI; 38.7-57.9) out of 100. Patients' assessment of their HRQoL in the hypothetical situation, in which they would not experience any side effects from analgesics, was significantly higher: 62.6 (53.5-71.7) ( t test, p = 0.001). Conclusion: This study provides, for the first time, evidence that side effects of analgesics are common in symptomatic MM and may result in a statistically and clinically significant reduction of self-reported HRQoL. [ABSTRACT FROM AUTHOR]

The article presents a study which evaluates the reliability and feasibility of a set of quality indicators (QIs) in palliative care settings and services across Europe. Among the methods used are descriptive statistics, chi-square analysis, and analysis of variance. It shows that the set of QIs seemed to measure four reliable domains including equipment and continuity of care, personnel training and appraisal, and availability of controlled drugs.

Purpose: Quality indicators (QIs) for the organization of palliative care (PC) can contribute to quality improvement as they assess the key elements for adequate organization of care. They might differ between health care organization, cultures and economic resources. The aim of this study was face-validate an Indonesian set of QIs based on a European set, to compare the two sets of QIs and to test the applicability of Indonesian set. Methods: A modified two-round RAND Delphi process was conducted in Indonesia. Twenty-four health care professionals from different disciplines were invited as panellists to rate clarity and usefulness of 98 QIs. Next, a applicability pilot test took place in five hospitals. Results: A total of 21 panellists considered 76 QIs (78 %) face-valid and added two new ones. Of the QIs with the highest ratings, eight were evaluated by head nurses and two by reviewing 50 patient records. Each QI was met by at least two hospitals, and only one by all five. Regarding the two QIs on structured clinical record keeping, most medical records contained multidimensional aspects of care. Conclusions: We found that most QIs for the organization of PC developed for European countries were also considered face-valid for Indonesian hospitals. The top 10 QIs were applicable in Indonesia. This suggests that most of the organizational QIs are universal rather than country specific. The Indonesian set of QIs should be considered as a first step in developing, testing, and implementing a set of QIs for PC in Indonesia. We recommend validation in other Asian regions. [ABSTRACT FROM AUTHOR]

Objective More than 50% of patients with cancer experience pain. Patient empowerment has been highlighted as central to success in pain management. Up to now, no clear model for this patient group exists, yet several strategies to empower patients have been used in clinical practice. This review examines how empowerment or related concepts have been described in relation to pain management in patients with cancer. With the help of a conceptual model, recommendations for clinical practice are provided. Methods An integrative review was conducted, using the databases PubMed, CINAHL and PsycINFO. We evaluated papers discussing empowerment or related concepts in relation to pain management in patients with cancer. We analyzed the term 'empowerment' semantically. Results From a total of 5984 identified papers, 34 were included for analysis. Empowerment has been described with the concepts self-efficacy, active patient participation, increasing abilities, and control of life. Most papers focus on pain treatment induced by the professional caregiver or on the active involvement of the patient, and not on the combination of both. The following elements of empowerment could be discriminated: role of the patient, role of the professional, resources, self-efficacy, active coping, and shared decision making. Conclusions On the basis of these findings, we propose a conceptual model to empower patients in controlling cancer pain. We recommend focusing on pain treatment given by the professional, on the active involvement of the patient, and on the interaction of both. Our model might also be useful for other patient groups or specific contexts, especially in symptom management. Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: Our aim was to investigate the feasibility of completing an exercise program in patients with advanced cancer and to obtain preliminary data of its impact on physical and quality of life (QoL) outcomes. Methods: We conducted a nonrandomized pilot study. Participants were 26 palliative care patients with advanced cancer (mean age=54.5 years; standard deviation [SD] 8.9 years) of the outpatient clinic of the medical oncology and the urology departments of a medical center in The Netherlands. Participants followed an individually graded group exercise program, consisting of resistance training and aerobic exercise, twice a week during 6 weeks. Feasibility of the training program, muscle strength, aerobic fitness, body composition, QoL, fatigue, and physical role, social, and activities of daily living (ADL) functioning were assessed at baseline and immediately after the intervention. Results: Dropout rate during the training period was 35% due to disease progression. After the training period, based on intention to treat analysis, muscle strength and aerobic functional fitness had increased significantly ( p≤0.01). A significant decrease in fat percentage ( p≤0.02) was observed. QoL had increased significantly ( p≤0.02), as well as social ( p≤0.04), physical role ( p≤0.01), and ADL functioning ( p≤0.05). Fatigue decreased significantly on the Checklist Individual Strength (CIS) and RAND-36 questionnaires ( p≤0.02), however not on the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 ( p=0.48). No change in physical functioning was observed with the EORTC QLQ-C30 and RAND-36 (respectively, p=0.33 and p=0.09). Conclusions: These preliminary results show that physical exercise in patients with advanced cancer is feasible. A significant impact was observed on physical and QoL outcomes. These findings need to be confirmed with a larger-scale, randomized controlled trial. [ABSTRACT FROM AUTHOR]

Background: Large numbers of vulnerable patients are in need of palliative cancer and dementia care. However, a wide gap exists between the knowledge of best practices in palliative care and their use in everyday clinical practice. As part of a European policy improvement program, quality indicators(QIs) have been developed to monitor and improve the organisation of palliative care for patients with cancer and those with dementia in various settings in different European countries. Method: A multidisciplinary, international panel of professionals participated in a modified RAND Delphi procedure to compose a set of palliative care QIs based on existing sets of QIs on the organisation of palliative care. Panellists participated in three written rounds, one feedback round and one meeting. The panel's median votes were used to identify the final set of QIs. Results: The Delphi procedure resulted in 23 useful QIs. These QIs represent key elements of the organisation of good clinical practice, such as the availability of palliative care teams, the availability of special facilities to provide palliative care for patients and their relatives, and the presence of educational interventions for professionals. The final set also includes QIs that are related to the process of palliative care, such as documentation of pain and other symptoms, communication with patients in need of palliative care and their relatives, and end-of-life decisions. Conclusion: International experts selected a set of 23 QIs for the organisation of palliative care. Although we particularly focused on the organisation of cancer and dementia palliative care, most QIs are generic and are applicable for other types of diseases as well. [ABSTRACT FROM AUTHOR]

A correction is presented to the article "Oncologist responses to advanced cancer patients' lived illness experiences and efects: an applied conversation analysis study."

Background: Validated quality indicators can help health-care professionals to evaluate their medical practices in a comparativemanner to deliver optimal clinical care. No international set of quality indicators to measure the organizational aspects of palliativecare settings exists.Aim: To develop and validate a set of structure and process indicators for palliative care settings in Europe.Design: A two-round modified RAND Delphi process was conducted to rate clarity and usefulness of a previously developed set of110 quality indicators.Setting/participants: In total, 20 multi-professional palliative care teams of centers of excellence from seven European countries.Results: In total, 56 quality indicators were rated as useful. These valid quality indicators concerned the following domains: thedefinition of a palliative care service (2 quality indicators), accessibility to palliative care (16 quality indicators), specific infrastructureto deliver palliative care (8 quality indicators), symptom assessment tools (1 quality indicator), specific personnel in palliative careservices (9 quality indicators), documentation methodology of clinical data (14 quality indicators), evaluation of quality and safetyprocedures (1 quality indicator), reporting of clinical activities (1 quality indicator), and education in palliative care (4 quality indicator).Conclusion: The modified RAND Delphi process resulted in 56 international face-validated quality indicators to measure andcompare organizational aspects of palliative care. These quality indicators, aimed to assess and improve the organization of palliativecare, will be pilot tested in palliative care settings all over Europe and be used in the EU FP7 funded IMPACT project. [ABSTRACT FROM AUTHOR]

Introduction Neuropathic pain is a common symptom, present in 39% of the patients with cancer pain. Treating this type of pain is challenging, as this patient group is often frail and has comorbidities which increase the risk of side events and hence influences their quality of life. Clinical practice guidelines ( CPGs) can be helpful for clinicians, especially when scientific evidence is uncertain or weak. In this study, we focused on the quality of the review of the literature used in treatment recommendations in the selected European CPGs. Methods In a previous study, 9 CPGs from European countries that contained at least one paragraph on treatment for neuropathic pain in cancer were included. Recommendations with their grade (according SIGN 55 classification) and supporting literature (first author, patients' population, year and type of publication) were compared between CPGs. Results In all CPGs, amitriptylin was mentioned as the drug of first choice. Six guidelines proposed also gabapentinoids. Only 30 of the 163 citations (18%) were based on studies in patients with cancer. Seven CPGs did not argue the indirect evidence due to extrapolation of study results from non-cancer to patients with cancer. Conclusion The majority of guideline development groups extrapolated their results from non-cancer publications to formulate recommendations. Consequently, these guidelines fail to address important issues such as altered kinetics and side effect profiles in these patients. We recommend creating specific recommendations by an international expert group for the treatment for neuropathic pain in patients with cancer supported by targeted research in patients with cancer. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background Neuropathic pain is a prevalent symptom in patients with cancer, which needs a more specific algorithm than nociceptive pain or neuropathic pain from other origin. Clinical practice guidelines ( CPGs) can be helpful in optimizing the diagnosis of neuropathic pain in patients with cancer. Methods In this study, 9 national CPGs in Europe on the diagnosis of neuropathic pain in patients with cancer were included. Recommendations with their grade (according SIGN 55 classification) and supporting literature (first author, patients' population, year, and type of publication) were compared between CPGs. Results Nine CPGs including recommendations on neuropathic pain could be selected and were assessed. In total, they used 149 references of which 72 (48%) were about cancer conditions, 39 (26%) about neuropathic pain, and only 3 about neuropathic pain in patients with cancer (2%). Only 28 (19%) references were shared between 2 or more guidelines. There was only one shared reference specifically related to cancer neuropathic pain. Recommendations and their evidence grading strongly differ between CPGs. Conclusion This work demonstrates an important heterogeneity between European recommendations on diagnosis and assessment of neuropathic pain in patients with cancer. The main weaknesses are the low level of evidence and the absence of specific data focusing on neuropathic pain in patients with cancer. We recommend that physicians dealing with neuropathic pain in patients with cancer should be specially trained, that a specific methodology to develop CPGs should followed, and that specific research should be developed on the diagnosis of neuropathic pain in patients with cancer. [ABSTRACT FROM AUTHOR]

Background: According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries. Methods: In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards. Results: In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers. Conclusions: Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe. [ABSTRACT FROM AUTHOR]

Between 19% and 39% of patients with cancer pain suffer from neuropathic pain. Its diagnosis and treatment is still challenging. Yet, national clinical practice guidelines ( CPGs) have been developed in several European countries to assist practitioners in managing these patients safely and legally. The aim of this study was to assess the quality of the development and reporting of these CPGs. Methods In collaboration with the European Federation of IASP Chapters, a European inventory of CPGs was conducted. Inclusion criteria were at least one paragraph dedicated to the treatment of neuropathic pain in cancer. Using the Appraisal of Guidelines, Research and Evaluation II instrument, 2 appraisers independently assessed the quality of the development process of the included CPGs in 6 quality domains. Besides, CPGs developed by governmental organization were compared with those developed by professional societies using t-tests. Results Mean scores of the domains 'scope and purpose' (80%) and 'clarity of presentation' (61%) were satisfactory, 'stakeholder involvement' (58%), 'rigor of development' (57%), and 'editorial independence' (53%) were acceptable, and 'applicability' was insufficient (39%). Governmental guidelines had higher quality scores than professional society guidelines for domain 'stakeholder involvement' and 'editorial independence' ( P < 0.01). Conclusions The quality of the development process of the 9 included CPGs varied widely. CPGs should be developed within a structured guideline program, including methodological support. As developing a CPG is expensive and time-consuming, we recommend more international cooperation to increase quality and lower the development costs. [ABSTRACT FROM AUTHOR]

Background: Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made. To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care. Discussion: A generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement. Summary: The co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project. [ABSTRACT FROM AUTHOR]

Background: By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries. Methods: As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe. Results: The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework. Conclusions: We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs. [ABSTRACT FROM AUTHOR]

The article presents a follow-up study which investigates whether the practice of continuous palliative sedation has changed after the introduction of a national guideline in Netherlands. It discusses the results of the study including the reported last case of continuous sedation in both the baseline and follow-up studies and the significant increase in patient involvement. It concludes that physicians reported changes in palliative sedation practice comply with the recommendations of the released guidance, in which the use of benzodiazepines for sedation increased.

Quality improvement of organizational aspects in general practice is receiving increasing attention. In particular, the impact of effective organization on preventative care has been recognized. Organizational assessments are typically used as part of professionally led accreditation schemes where there is a tension between externally led quality assurance and internally led quality improvement. The aim of this article is to inform the debate by reviewing the international-peer-reviewed literature on organizational assessments used in general practice settings. Systematic literature review. The literature was searched for articles relating to organizational assessment. Titles and abstracts were examined by two independent reviewers and relevant articles obtained. Bibliographies were examined for follow-up references. Data were extracted on the development and use of assessment methods. Thirteen papers describing five organizational assessment instruments were included for detailed appraisal. This review discovered a developing field containing different approaches to the measurement of organizational aspects of general practice. Whilst professionally led accreditation is well-developed and dependent on externally led quality assurance, approaches to internally led quality improvement are less well-developed. There is a need for organizational assessment tools designed for the purpose of stimulating internal development. [ABSTRACT FROM AUTHOR]

Background: Despite the urgent need for palliative care for patients with advanced chronic obstructive pulmonary disease (COPD), it is not yet daily practice. Important factors influencing the provision of palliative care are adequate communication skills, knowing when to start palliative care and continuity of care. In the COMPASSION study, we address these factors by implementing an integrated palliative care approach for patients with COPD and their informal caregivers. Methods: An integrated palliative care intervention was developed based on existing guidelines, a literature review, and input from patient and professional organizations. To facilitate uptake of the intervention, a multifaceted implementation strategy was developed, comprising a toolbox, (communication) training, collaboration support, action planning and monitoring. Using a hybrid effectiveness-implementation type 2 design, this study aims to simultaneously evaluate the implementation process and effects on patient, informal caregiver and professional outcomes. In a cluster randomized controlled trial, eight hospital regions will be randomized to receive the integrated palliative care approach or to provide care as usual. Eligible patients are identified during hospitalization for an exacerbation using the Propal-COPD tool. The primary outcome is quality of life (FACIT-Pal) at 6 months. Secondary outcome measures include spiritual well-being, anxiety and depression, unplanned healthcare use, informal caregiver burden and healthcare professional's self-efficacy to provide palliative care. The implementation process will be investigated by a comprehensive mixed-methods evaluation assessing the following implementation constructs: context, reach, dose delivered, dose received, fidelity, implementation level, recruitment, maintenance and acceptability. Furthermore, determinants to implementation will be investigated using the Consolidated Framework for Implementation Research. Discussion: The COMPASSION study will broaden knowledge on the effectiveness and process of palliative care integration into COPD-care. Furthermore, it will improve our understanding of which strategies may optimize the implementation of integrated palliative care. Trial registration: Netherlands Trial Register (NTR): NL7644. Registration date: April 7, 2019. [ABSTRACT FROM AUTHOR]

Background: General practitioners (GPs) are advised to offer advance care planning (ACP) to people with dementia (PWD). In a randomized controlled trial, an educational intervention for GPs aimed at initiating and optimizing ACP proved to be effective. During the intervention most GPs were accompanied by their practice nurse (PN). To provide insights into the intervention's successful components and what could be improved, we conducted a process evaluation and explored implementation, mechanisms of impact and contextual factors. Methods: We used the Medical Research Council guidance for process evaluations. Implementation was explored identifying reach and acceptability. We performed descriptive analyses of participants' characteristics; selection, inclusion and intervention attendance; a GP post-intervention survey on initiating ACP; a post intervention focus group with trainers of the intervention. Mechanisms of impact were explored identifying adoption and appropriateness. We used: participants' intervention ratings; a GP post-intervention survey on conducting ACP; ACP documentation in PWD's medical files; post-intervention interviews with PWD/FC dyads. All data was used to identify contextual factors. Results: The intervention was implemented by a small percentage of the total Dutch GP population invited, who mostly included motivated PWD/FC dyads with relatively little burden, and PWD with limited cognitive decline. The mechanisms of impact for GPs were: interactively learning to initiate ACP with training actors with a heterogeneous group of GPs and PNs. For PWD/FCs dyads, discussing non-medical preferences was most essential regarding their SDM experience and QoL. Some dyads however found ACP stressful and not feasible. Younger female GPs more often initiated ACP. Male PWD and those with mild dementia more often had had ACP. These characteristics and the safe and intimate training setting, were important contextual facilitators. Conclusion: We recommend Interventions aimed at improving ACP initiation with PWD by GPs to include interactive components and discussion of non-medical preferences. A safe environment and a heterogeneous group of participants facilitates such interventions. However, in practice not all FC/PWD dyads will be ready to start. Therefore, it is necessary to check their willingness when ACP is offered. [ABSTRACT FROM AUTHOR]

Background: The number of residents in long-term care facilities (LTCFs) in need of palliative care is growing in the Western world. Therefore, it is foreseen that significantly higher percentages of budgets will be spent on palliative care. However, cost-effectiveness analyses of palliative care interventions in these settings are lacking. Therefore, the objective of this paper was to assess the cost-effectiveness of the 'PACE Steps to Success' intervention. PACE (Palliative Care for Older People) is a 1-year palliative care programme aiming at integrating general palliative care into day-to-day routines in LTCFs, throughout seven EU countries.Methods: A cluster RCT was conducted. LTCFs were randomly assigned to intervention or usual care. LTCFs reported deaths of residents, about whom questionnaires were filled in retrospectively about resource use and quality of the last month of life. A health care perspective was adopted. Direct medical costs, QALYs based on the EQ-5D-5L and costs per quality increase measured with the QOD-LTC were outcome measures.Results: Although outcomes on the EQ-5D-5L remained the same, a significant increase on the QOD-LTC (3.19 points, p value 0.00) and significant cost-savings were achieved in the intervention group (€983.28, p value 0.020). The cost reduction mainly resulted from decreased hospitalization-related costs (€919.51, p value 0.018).Conclusions: Costs decreased and QoL was retained due to the PACE Steps to Success intervention. Significant cost savings and improvement in quality of end of life (care) as measured with the QOD-LTC were achieved. A clinically relevant difference of almost 3 nights shorter hospitalizations in favour of the intervention group was found. This indicates that timely palliative care in the LTCF setting can prevent lengthy hospitalizations while retaining QoL. In line with earlier findings, we conclude that integrating general palliative care into daily routine in LTCFs can be cost-effective.Trial Registration: ISRCTN14741671 . [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) is seldom initiated with people with dementia (PWD) and mainly focuses on medical end-of-life decisions. We studied the effects of an educational intervention for general practitioners (GPs) aimed at initiating and optimizing ACP, with a focus on discussing medical and nonmedical preferences of future care. A single-blinded cluster randomized controlled trial. In 2016, 38 Dutch GPs (all from different practices) completed the study. They recruited 140 PWD, aged ≥65 years at any stage and with any type of dementia, from their practice. Intervention group GPs were trained in ACP, including shared decision-making and role-playing exercises. Control group GPs provided usual care. The primary outcome was ACP initiation: the proportion of PWD that had at least 1 ACP conversation documented in their medical file. Key secondary outcomes were the number of medical (ie, resuscitation, hospital admission) and nonmedical (ie, activities, social contacts) preferences discussed. At the 6-month follow-up, subjects' medical records were analyzed using random effect logistics and linear models with correction for GP clustering. 38 GP clusters (19 intervention; 19 control) included 140 PWD (intervention 73; control 67). Four PWD (2.9%) dropped out on the primary and key secondary outcomes. After 6 months, intervention group GPs initiated ACP with 35 PWD (49.3%), and control group GPs initiated ACP with 9 PWD (13.9%) [odds ratio (OR) 1.99; P =.002]. Intervention group GPs discussed 0.8 more medical [95% confidence interval (CI) 0.3, 1.3; P =.003] and 1.5 more nonmedical (95% CI 0.8, 2.3; P <.001) preferences per person with dementia than control group GPs. Our educational intervention increased ACP initiation, and the number of nonmedical and medical preferences discussed. This intervention has the potential to better align future care of PWD with their preferences but because of the short follow-up, the GPs' long-term adoption remains unknown. [ABSTRACT FROM AUTHOR]

Following publication of the original article [1], an error in reference 18 was reported. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to gain insight into the experience of time of terminal patients with cancer. Experience of time is relevant in palliative care in both policy and practice. On a policy level, the Quality Adjusted Life Year (QALY), the most used outcome measure for cost-effectiveness analysis in healthcare, assumes time to be a linear and additive variable, which is one of the reasons that its applicability in palliative care is questioned. On a practice level, a better understanding of the experience of time of patients with limited time left, could help to recognize if and how these patients can have a more meaningful use of time. The main focus of this study was to discover whether time perception of these patients in their last months of life had changed as compared to earlier periods of time in their lives in good physical health. The pace of time and time dominance (comparison of past, present and future) were investigated. Methods: In several hospices and palliative care units in the Netherlands, twelve semi-structured interviews were conducted with terminal patients with cancer. Results: Time perception at the end of life had changed for most participants. They all lived on a day-to-day basis in the terminal phase, independent of their way of life in the healthy phase. Furthermore, the experienced duration of a day turned out to be very different between patients, but also between days, depending on daily activities. Besides, for most patients for whom the future was the dominant period of time in the healthy phase, the dominant period of time in the terminal phase had become the past. Conclusions: Time perception of terminal patients with cancer differed from the time perception in their relatively healthy phase of life. This suggests that the LY part of the QALY is not comparable for all phases of life. [ABSTRACT FROM AUTHOR]

Background: The Surprise Question (SQ) "would I be surprised if this patient were to die in the next 12 months?" has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question ("Would I be surprised if the patient were still alive after 12 months?") alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions. Methods: An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance – 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A "surprise threshold" for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance. Discussion: This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice. Trial registration: Clinicaltrials.gov NCT03697213 (05/10/2018). Prospectively registered. [ABSTRACT FROM AUTHOR]

Background: Although it is often recommended that general practitioners (GPs) initiate advance care planning (ACP), little is known about their experiences with ACP. This study aimed to identify GP experiences when conducting ACP conversations with palliative patients, and what factors influence these experiences. Methods: Dutch GPs (N = 17) who had participated in a training on timely ACP were interviewed. Data from these interviews were analysed using direct content analysis. Results: Four themes were identified: ACP and society, the GP's perceived role in ACP, initiating ACP and tailor-made ACP. ACP was regarded as a 'hot topic'. At the same time, a tendency towards a society in which death is not a natural part of life was recognized, making it difficult to start ACP discussions. Interviewees perceived having ACP discussions as a typical GP task. They found initiating and timing ACP easier with proactive patients, e.g. who are anxious of losing capacity, and much more challenging when it concerned patients with COPD or heart failure. Patients still being treated in hospital posed another difficulty, because they often times are not open to discussion. Furthermore, interviewees emphasized that taking into account changing wishes and the fact that not everything can be anticipated, is of the utmost importance. Moreover, when patients are not open to ACP, at a certain point it should be granted that choosing not to know, for example about where things are going or what possible ways of care planning might be, is also a form of autonomy. Conclusions: ACP currently is a hot topic, which has favourable as well as unfavourable effects. As GPs experience difficulties in initiating ACP if patients are being treated in the hospital, future research could focus on a multidisciplinary ACP approach and the role of medical specialists in ACP. Furthermore, when starting ACP with palliative patients, we recommend starting with current issues. In doing so, a start can be made with future issues kept in view. Although the tension between ACP's focus on the patient's direction and the right not to know can be difficult, ACP has to be tailored to each individual patient. [ABSTRACT FROM AUTHOR]

Background: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the ‘PACE Steps to Success’ palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries. Methods: We will conduct a multi-facility cluster randomised controlled trial in Belgium, Finland, Italy, the Netherlands, Poland, Switzerland and England. In total, 72 facilities will be randomized to receive the ‘Pace Steps to Success intervention’ or to ‘care as usual’. Primary outcome at resident level: quality of dying (CAD-EOLD); and at staff level: staff knowledge of palliative care (Palliative Care Survey). Secondary outcomes: resident’s quality of end-of-life care, staff self-efficacy, self-perceived educational needs, and opinions on palliative care. Economic outcomes: direct costs and quality-adjusted life years (QALYs). Measurements are performed at baseline and after the intervention. For the resident-level outcomes, facilities report all deaths of residents in and outside the facilities over a previous four-month period and structured questionnaires are sent to (1) the administrator, (2) staff member most involved in care (3) treating general practitioner, and (4) a relative. For the staff-level outcomes, all staff who are working in the facilities are asked to complete a structured questionnaire. A process evaluation will run alongside the effectiveness evaluation in the intervention group using the RE-AIM framework. Discussion: The lack of high quality trials in palliative care has been recognized throughout the field of palliative care research. This cross-national cluster RCT designed to evaluate the impact of the palliative care intervention for long-term care facilities ‘PACE Steps to Success’ in seven countries, will provide important evidence concerning the effectiveness as well as the preconditions for optimal implementation of palliative care in nursing homes, and this within different health care systems. Trial registration: The study is registered at www.isrctn.com – ISRCTN14741671 (FP7-HEALTH-2013-INNOVATION-1 603111) Registration date: July 30, 2015. [ABSTRACT FROM AUTHOR]

Objectives Although a growing number of older people are dying in care homes, palliative care has developed in these settings only recently. Cross-country representative comparative research hardly exists in this area. As part of a large EU-funded project, we aim to undertake representative comparative research in care homes in Europe, to describe and compare 6 countries in terms of (1) resident outcomes, quality and costs of palliative and end-of-life care; and (2) palliative care structures and staff knowledge and attitudes toward palliative care. We also aim to explore country, facility, staff, patient, and care characteristics related to better outcomes at resident level. Design and Methods To obtain a representative nationwide sample, we will conduct a large-scale cross-sectional study of deceased residents in care homes in Belgium, Finland, Italy, the Netherlands, Poland, and the United Kingdom, using proportional stratified random sampling (taking into account region, facility type and bed capacity). In each country, all participating care homes retrospectively report all deaths of residents in and outside the facilities over the previous 3-month period. For each case, structured questionnaires, including validated instruments, are sent to (1) the administrator/manager, (2) staff member most involved in care, (3) treating physician (general practitioner or elderly care physician), and (4) a closely involved relative. It is estimated that, per country, 50 care homes are needed on average to obtain a minimum of 200 deceased residents. Collected data include clinical and sociodemographic characteristics, quality of dying, quality and costs of palliative care and end-of-life care, and palliative care structures at the facility level and country level. To obtain a representative view of staff knowledge and attitudes regarding palliative care, PACE will conduct a cross-sectional study of staff working in the participating care homes. Conclusion Considering the growing challenges associated with aging in all European countries, there is an urgent need to build a robust international comparative evidence base that can inform the development of policies to target improved palliative care in care homes. By describing this research protocol, we hope to inform international research in care homes on how to perform representative end-of-life care research in these settings and better understand which systems are associated with better outcomes. [ABSTRACT FROM AUTHOR]

Background: The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a growing number of new insights and best practices in palliative care have been published, they are often not implemented in daily practice. The aim of this integrative review is to provide an overview of implementation strategies that have been used to improve the organisation of palliative care. Methods: Using an integrative literature review, we evaluated publications with strategies to improve the organisation of palliative care. Qualitative analysis of the included studies involved categorisation of the implementation strategies into subgroups, according to the type of implementation strategy. Results: From the 2379 publications identified, 68 studies with an experimental or quasi-experimental design were included. These studies described improvements using educational strategies (n = 14), process mapping (n = 1), feedback (n = 1), multidisciplinary meetings (n = 1) and multi-faceted implementation strategies (n = 51). Fifty-three studies reported positive outcomes, 11 studies reported mixed effects and four studies showed a limited effect (two educational and two multi-faceted strategies). Conclusions: This review is one of the first to provide an overview of the available literature in relation to strategies used to improve the organisation of palliative care. Since most studies reported positive results, further research is needed to identify and improve the effects of strategies aiming to improve the organisation of palliative care. [ABSTRACT FROM AUTHOR]

Background: Large numbers of vulnerable patients are in need of palliative cancer and dementia care. However, a wide gap exists between the knowledge of best practices in palliative care and their use in everyday clinical practice. As part of a European policy improvement program, quality indicators (QIs) have been developed to monitor and improve the organisation of palliative care for patients with cancer and those with dementia in various settings in different European countries.Method: A multidisciplinary, international panel of professionals participated in a modified RAND Delphi procedure to compose a set of palliative care QIs based on existing sets of QIs on the organisation of palliative care. Panellists participated in three written rounds, one feedback round and one meeting. The panel's median votes were used to identify the final set of QIs.Results: The Delphi procedure resulted in 23 useful QIs. These QIs represent key elements of the organisation of good clinical practice, such as the availability of palliative care teams, the availability of special facilities to provide palliative care for patients and their relatives, and the presence of educational interventions for professionals. The final set also includes QIs that are related to the process of palliative care, such as documentation of pain and other symptoms, communication with patients in need of palliative care and their relatives, and end-of-life decisions.Conclusion: International experts selected a set of 23 QIs for the organisation of palliative care. Although we particularly focused on the organisation of cancer and dementia palliative care, most QIs are generic and are applicable for other types of diseases as well. [ABSTRACT FROM AUTHOR]

Background: According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries.Methods: In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards.Results: In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers.Conclusions: Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe. [ABSTRACT FROM AUTHOR]