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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 professionalpatient 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. [ABSTRACT FROM AUTHOR]

Introduction: People with life threatening disease across Europe face challenges in engaging with a wide range of agencies and multiple professionals during the course of their illness, even up to the point of death. It is known that many services attempt - formally or otherwise - to dovetail their efforts with others in the local health economy, but little is known about these initiatives, nor about what works best in terms of service organisation. This is especially the case when considered from the patient and carer standpoint. Against a backdrop of shrinking resources for health and social care in an age of austerity and in the light of an ageing population with increasing need, more needs to be known about how integrating aspects of service delivery will best help people in the last phase of their lives. Study design: The study will use a mix of quantitative and qualitative approaches to investigate integrated palliative care pathways in advanced cancer and chronic disease. Methods: The study will be conducted by an international team in five distinct phases: 1. Systematic review of the literature considering existing evidence for integrated palliative care initiatives in Europe 2. Development of a taxonomy of integrated palliative care initiatives in Europe 3. Data collection exploring the experiences of patients, carers and professional care givers of integrated palliative care initiatives in five European nations using shadowing techniques, qualitative interviewing and quantitative quality of life and symptom burden measures 4. Development of (requirements for) best practices in integrated palliative care in Europe based on the analysis of gathered data 5. Development of an elearning platform around best practice in integrated palliative care aimed at equipping professionals with knowledge to enhance and influence local care provision Dissemination: Study outputs will be disseminated throughout the project using a variety of methods including: scientific publications and presentations; the provision of an interactive website; the development of an elearning platform; engagement with social media and ending with an invitational conference aimed at influencing policy development at senior European political and policy decision making level. Conclusion: Our knowledge about integrated palliative care pathways in advanced disease remains patchy and incomplete. It is clear that many initiatives are underway across Europe. Our study will pull together that knowledge, enhancing it significantly with the views of patients and those at the coalface of service delivery, putting us in a position to make evidence based recommendations for best practice in this field. Lessons Learned:Our knowledge about which models of integrated palliative care work best is incomplete. Understanding the patient and carer experience of integrated care models from their standpoint is critical. Investigating integrated palliative care models across national boundaries will allow for different and novel approaches to be compared. [ABSTRACT FROM AUTHOR]

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. 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. [ABSTRACT FROM AUTHOR]