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INSUP-C Résumé de rapport

Project ID: 305555
Financé au titre de: FP7-HEALTH
Pays: Netherlands

Periodic Report Summary 2 - INSUP-C (Patient-centered palliative care pathways in advanced cancer and chronic disease)

Project Context and Objectives:
Integrated palliative care is a topic of increasing interest as a growing number of European citizens suffers from advanced cancer and chronic disease to the end of their lives, often with multimorbidity. This project aims to contribute to the care for patients with advanced cancer and chronic disease and their relatives by investigating and comparing initiatives in integrated palliative care across Europe, including variations in structure-, process of care-and patient outcome variables in order to identify (requirements for) best/good, and promising practices. This research will focus on patients with cancer and major chronic diseases, in particular advanced stages of COPD and CHF.

Key objectives of the project are:
1. Literature review to collect descriptions of integrated care models in cancer and advanced diseases.
2.Identifying existing palliative care initiatives for integrated palliative care in Europe using a)
Publicly available data and reports from (inter)national European offices on health care, and b) additional qualitative interviews with experts in the field of primary and secondary care. This resulted in a taxonomy (or classification scheme) for integrated palliative care.
3.To study a representative selection of integrated palliative care initiatives in the field, across Europe, involving the experiences and perceptions of patients with cancer and chronic diseases, their informal caregivers, and their caregivers.
4. To identify (requirements for) best and/or promising practices in integrated palliative care in Europe in terms of patient/family and caregivers experiences, including key prerequisites of a regulatory, cultural, organisational, financial and managerial background.
5.To disseminate the (requirements for) ‘best/good practices’ via an interactive website including an
e-learning module based on the data of the research project.

Project Results:
During the course of the project, there have been General Assembly and related Executive Board meetings in Pecs (November 2014) and Amsterdam (April 2015). At these meetings it has been discussed that Sheffield as a partner would leave the project at their request, related to the depart of the main researcher. The amendment request has been prepared in consultation with the EU project officer. In addition, due to some delay in the course of the project, extending delivery dates for WP4 and WP5 deliverables (D4.2; D5.2) have been agreed upon with the EU project officer. In consultation with WP6, the organization of the final conference in Brussels has been started. (see below a recent picture of -part of- the InsupC team)
Figure WP1 from the report
Three literature reviews were performed, which are briefly described below.
Report 1: This systematic review was conducted in order to identify existing models of integrated palliative care in patients with cancer or chronic disease in Europe. The included studies show a strong agreement on the benefits of the involvement of a PC multidisciplinary team: better symptom control, less caregiver burden, improvement in continuity and coordination of care, fewer admissions, cost effectiveness and patients dying in their preferred place of care. Current empirical literature shows that multidisciplinary PC teams foster the (early) integration of PC in cancer and non-cancer. Based on this conclusion, a generic framework for integrated PC in cancer and chronic disease is proposed.

Report 2: This systematic review was conducted in order to identify existing guidelines and pathways of integrated palliative care in patients with cancer. We identified a total of 28,277 potentially relevant articles; 637 were eligible for full-text screening. The final review included 60 guidelines and 14 pathways (see figure 1). 80% of the guidelines/ pathways emphasize a holistic approach and 66% focused on PC interventions aimed at reducing suffering. 57% did not discuss referral criteria for PC. Of all studies, five fulfilled at least 10/11 IPC criteria. Differences existed with regard to the referral criteria for bereavement care and the continuous adjustment of goals of care. Overall, most of the identified guidelines/pathways highlighted the importance of the holistic approach of IPC.

Report 3: This systematic review aimed in identifying existing guidelines and pathways of integrated palliative care in patients with COPD and Chronic Heart Failure (CHF). Nineteen studies were included; 17 guidelines and 2 pathways. 18 out of 19 focused on suffering reduction interventions, 13/19 on a holistic approach and 15/19 on discussions of illness prognosis and limitations. The results illustrate that there is a growing awareness for the importance of PC in patients with CHF and COPD. At the same time, however, they signal the need for the development of standardized strategies so that existing barriers are alleviated.

Within the reporting period (May 2014-October 2015) the work on WP3 has been completed (project month 21, July 2014). As a main result a final taxonomy (see figure 1 below) of integrated palliative initiatives in Europe was consented by an expert focus group. The building of the taxonomy was described in an article accepted in BMJ Supportive and Palliative Care. Moreover, the taxonomy was presented in a “Meet the experts” session at the EAPC world congress in Copenhagen (May 2015). Other outputs of WP3 were the conduction of 34 expert interviews on integrated palliative care (IPC) and an online survey with regard to the same issue among members of the EAPC mailing list. Publications presenting results of the interviews and the survey are currently prepared.

The period of the reporting was directed towards carrying out the patient- and informal care provider-study. We managed to include over 150 patients, most of them with their informal care providers, in 5 countries. All questionnaires and demographic data are entered in a protected database CASTOR. The qualitative data are entered in NVIVO, a program for qualitative data analysis. In this scientific report an update on the way we handled the tasks can be found. Next to this we are working on deliverable D4.3 in which we report more in detail on the methods and the content of the data we found in the five participating countries. In close collaboration with WP5 the focus group interviews were performed. Our data on the patient and informal caregiver experiences will also be used as a part of the network analysis and the embedded case study. This will be reported in the deliverable of WP5.

The aim of Workpackage 5 (WP5) is to identify (requirements for) best and/or promising practices in integrated palliative care in Europe. The first deliverable of this project has been finished consisting of an overview of opportunities and barriers of integrated palliative care in Europe. The related publication has been recently launched. In addition, a patient study of 156 patients caregivers has been performed in a joint protocol with WP4, containing data on the care network and continuity of care in the participating European initiatives. Preliminary analysis of the group interviews among professional caregivers shows that across Europe, the integration of palliative care is implemented in various ways. Joint MDTs, informal relations, and ‘key figures’ seem to be the most important beneficial factors. The project results so far have been presented at various congresses in Europe. Reporting on (requirements for) best practices in integrated palliative care, a book and a conference are scheduled for next year.

Steady progress on the tasks of WP6 has been made over the past eighteen months of the project. WP6 has led on the development of the e-learning platform (MOOC) and has sourced the necessary software to support the platform, as well as leading on decisions for the format, content, language and style of the resource. This preparative work has been necessary in order that the tight timescale for populating the site with relevant materials, once the study results are available, will be met in the Spring of 2016. Currently, filming of vignettes has begun and a schedule for inputs from partner nations has been established. WP5 are currently analysing results from the professional group interview which have taken place at the study sites. These results will inform the development of further material for the elearning platform.
In addition to revising the publication strategy for the project, WP6 has maintained a Facebook presence and has engaged in other appropriate social media activity through a twitter feed and contributions to the EAPC blog.
Progress is being made towards planning the final invitational conference due to take place towards the end of the study and at which final study results will be disseminated (September 30 2016, Brussels).

Potential Impact:
The project will yield the following results:
1) State of the art literature overview on palliative care and integrated care pathways in current
national treatment guidelines ;
2) a taxonomy of existing integrated palliative care initiatives across Europe on
organisational, management and regulatory aspects;
3) A study of experiences of patients and professional networks within representative
integrated care initiatives;
4) An identification model of best/good, and promising practices in a benchmark of current initiatives;
5) Dissemination via publications, congresses, and online e-learning to optimise performance
levels in integrated palliative care in Europe.
Expected impact
The taxonomy and benchmark results will deliver important background information to
base further tailor made patient care. The ultimate goal is to strengthen palliative care across Europe by facilitating learning on the job with the help of respected experts in Europe.

Improved collaboration and further integration of palliative care services will presumably decrease
practice variation and increase the capabilities of informal caregivers. In addition, best practices are
expected to contribute to more people with advanced disease residing at the preferred place, with optimal support. The spread of optimal integrated palliative care strategies as identified in this project will therefore be of utmost importance to guide health policy decision‐making. Finally, this research will contribute to increased scientific evidence on the optimal organisation of integrated palliative care in Europe

List of Websites:


Maarten van Langen, (legal advisor)
Tél.: +31243619791
Numéro d'enregistrement: 184130 / Dernière mise à jour le: 2016-06-08
Source d'information: SESAM