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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 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]

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: 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]