Aging populations, rising costs and sustainable delivery of high-quality care are increasingly common concerns in all EU countries. PACE aims to perform comparative effectiveness research concerning palliative care in long term care facilities (LTCFs) in Europe. While a growing number of older people will require palliative care in institutionalized settings, palliative care has only recently begun to be developed in LTCFs and effectiveness research hardly exists.

PACE aims to compare, in six EU countries (BE, UK, IT, FI, PL, NL) (1) the effectiveness of health care systems with and without formal palliative care structures in LTCFs on patient and family outcomes –quality of dying, quality of life– quality of palliative care and cost-effectiveness, by performing a representative cross-sectional study in 48 LTCFs per country to include at least 1,152 deceased residents (2) the impact of the UK palliative care health service intervention Route to Success on patient outcomes, family and staff in LTCFs, by performing a controlled cluster trial across the six countries, randomly allocating 24 LTCFs to intervention and 24 to control.

The PACE consortium brings together leading academic partners from multiple disciplines with EU organizations/networks actively tapping into the most important professional groups and policy-makers in the field, making it possible to influence research, practice, policy and public at national and international level in and beyond participating PACE countries.

 PACE will help to achieve the objectives of the European 2020 Strategy, specifically the European Innovation Partnership on Healthy and Active Aging. Based on its study results, PACE will develop tools to assist practitioners and policy and decision-makers to make evidence-based decisions regarding best palliative care practices in LTCFs. This will ultimately lead to optimizing the delivery of palliative care to the large proportion of EU citizens living and dying in old age.

PACE will:

1. map and classify existing palliative care systems in long term care facilities in Europe

2. compare the effectiveness of health care systems with and without formal palliative care structures in long term care facilities in six EU countries (BE, UK, IT, FI, PL, NL) in terms of patient and family outcomes (quality of dying, quality of life), quality of palliative care, and cost-effectiveness, and in terms of staff knowledge, practices and attitudes

3. compare the impact of a health service intervention ‘Route to Success’ – aimed to improve the quality of palliative care in long term care facilities – with traditional care (as control) in long term care facilities in Europe, on patient, family and staff outcomes and on cost-effectiveness

4. develop products/tools to assist policy and decision-makers at national and international level in making informed and evidence-based decisions regarding best palliative care practices in long term care facilities

PACE will perform two large scale and innovative research studies (see further). Based on the results of these studies, PACE will advance science in this field considerably providing solid evidence concerning the effectiveness of palliative care, considering not only quality of dying and quality of end of life care but also cost-effectiveness. PACE will provide important baseline cross-country evidence to inform innovative research in this domain in Europe and beyond.

PACE will mainly inform and assist policy and decision-makers at different national and European levels and will develop specific tools and products to assist them in making evidence-based decisions on optimal palliative care delivery in long term care facilities. The project results will be translated into general dissemination tools (website, newsletters, publications, conferences, training etc) and policy recommendations, aimed at targeting different groups – policy, practice, the academic community, and the general public – at different levels – internationally, nationally, regionally and locally. Also, PACE will develop a standardized train-the-trainer package of the intervention ‘Route to Success’ to improve quality of palliative care in long term care facilities. The training materials will be translated, disseminated and made freely available (in English, Dutch, Finish, Italian and Polish) for other EU countries after the study period, creating opportunities for standardization of a palliative care approach in long term care facilities in Europe. It will include particular preconditions, barriers and facilitators for implementation of the intervention in different countries and will be released under creative commons licenses.

PACE will perform two large scale and innovative research studies:

1)            STUDY I

PACE will compare effectiveness of end-of-life care in long term care facilities without formal palliative care structures (IT, PL, FI) and with formal palliative care structures (BE, UK, NL) by performing large scale cross-sectional studies of deaths of residents in long term care facilities in these six countries, obtaining representative nationwide data on dying in these facilities.

In each country, all participating facilities retrospectively report all deaths of residents in and outside the facilities over a three month period. For each case, structured after-death questionnaires including validated instruments are sent to a staff member most involved in care, treating general practitioner and a relative or family member. PACE aims to include 48 facilities in each country providing a database of at least 1,152 deceased residents.

2)            STUDY II

PACE will implement the successfully tested complex health service intervention ‘The Route to Success in long term care facilities’ originally developed in the UK. The programme aims to enhance palliative care through facilitating organisational change and supporting staff to develop their roles around palliative care, aiming to ensure all residents receive high-quality palliative care.

PACE will perform a randomized controlled cluster trial comparing the intervention ‘Route to Success’ with care as usual, studying its impact on patient and family outcomes, quality of dying, quality of palliative care, and cost-effectiveness, and on staff knowledge, practices, and attitudes. The intervention runs for 15 months in 4 facilities in each country (BE, UK, IT, FI, PL, NL) after which a second cross-sectional study of deaths is performed using the same measurements as in study I. PACE aims to include 12 facilities (6 control and 6 intervention) in each country.

PACE will deliver 23 deliverables over a five-year period, including (and not limited to): an EAPC white paper on palliative care in long term care facilities in Europe, a report on palliative care systems and current practices in long term care facilities in Europe, a standardized training package on the intervention 'route to success', cost-effectiveness analysis, a quality assurance manual, policy recommendations based on research outcomes for EU and national/regional policy makers, a website and an interim and final conference.

21 milestones will be reached over the lifespan of the PACE project, including: methodology of different studies, sampling, cross-cultural adaptation and translation of the intervention, translation and finalization of instruments and procedures, qualitative data collection, quantitative data collection, national and international databases, impact and dissemination plan, and publications.

Study I of PACE will be performed in the first two years. The intervention will also be prepared in the first two years, and study II will be performed and analysed during the second half of the project.

WP1: P2 Lancaster University (ULANC), UK

WP2: P1 coordinator Vrije Universiteit Brussel (VUB), Belgium

WP3: P2 Lancaster University (ULANC), UK

WP4: P6 Stichting VU-VUMC (SVU), The Netherlands

WP5: P7 Stichting Katholieke Universiteit (RUNMC), The Netherlands

WP6: P1 coordinator Vrije Universiteit Brussel (VUB), Belgium

WP7: P1 coordinator Vrije Universiteit Brussel (VUB), Belgium

WP8: P9 European Association for Palliative Care, Onlus (EAPC)

P3: Università Cattolica del Sacro Cuore (UCSC), Italy

P4: National Institute for Health and Welfare (THL), Finland

P5: Uniwersytet Jagiellonski (UJ), Poland

P8: Universiteit Gent (UGent), Belgium

P9: European Association for Palliative Care, Onlus (EAPC), EU (Italy)

P10: European Forum for Primary Care (EFPC), EU (the Netherlands)

P11: AGE – Platform Europe (AGE), EU (Belgium)

P12: Alzheimer Europe (AE),EU (Luxembourg)

WP1: Mapping palliative care systems in long term care facilities in Europe

WP2: Comparative Effectiveness Research in long term care facilities in Europe: Cross-sectional study of deaths (study I)

WP3: Standardisation and translation of the health service intervention ‘Route to Success’ in long term care facilities

WP4: Comparative Effectiveness Research in LTCFs in Europe: controlled cluster trial on ‘Route to Success’ (study II)

WP5: Cost-effectiveness analyses

WP6: Construction of databases and main and sub-group analyses

WP7: Project management, coordination and progress monitoring

WP8: Creating impact: use, dissemination, training and further research

Lieve Van den Block, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB), Belgium, lvdblock@vub.ac.be

Report on palliative care systems and current practices in long term care facilities in Europe, Katherine Froggat, Borja Arrue, Michaela Edwards, Harriet Finne-Soveri, Hazel Morbey, Sheila Payne, Katarzyna Szczerbinska, Nele Van Den Noortgate, Lieve Van Den Block, on behalf of PACE - Deliverable 1.2, January 11th 2017