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PACE Report Summary

Project ID: 603111
Funded under: FP7-HEALTH
Country: Belgium

Periodic Report Summary 2 - PACE (Comparing the effectiveness of palliative care for elderly people in long term care facilities in Europe)

Project Context and Objectives:
As the population in the EU is aging, there is a need not only to improve people’s health through prevention but also to improve their quality of life and enable them to live and die well. The proportion of the world’s population aged 60 or over is expected to continue to rise considerably in the next years and more people will die in very old age following a slow deterioration of health until death characterized by multiple chronic diseases and years of disability and complex palliative care needs. These developments have enormous clinical, societal and socio-economic implications for all EU countries, and this has been recognized in the European Innovation Partnership on Active and Healthy Aging.
Whilst many countries aim to enable older people to live in their own homes, many older people require long-term institutional care at the end of life. A significant proportion dies in nursing homes or other long-term care facilities. Although the challenges of rising institutional care are not new, palliative care has only recently started to be implemented in long term care facilities, and there is hardly any research on its effectiveness. Existing research is typically descriptive and conducted in small groups of participants, and therefore lacks the necessary quality to contribute to evidence-based medicine and to inform practice and policy-making.
Palliative care is defined by the WHO as a multidisciplinary approach that improves the quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual/existential. While palliative care was offered mainly to cancer patients in the past, today there is growing recognition among clinicians and policy-makers that older people with age-related, chronic and mental health problems can also benefit from a palliative care approach that is integrated early in the course of disease.
PACE will:
1. map and classify existing palliative care systems in long-term care facilities in Europe
2. compare resident outcomes (quality of dying), quality of end-of-life care, and cost-effectiveness, and in terms of staff knowledge and attitudes in health care systems with and without formal palliative care structures in long-term care facilities in six EU countries (Belgium, United Kingdom, Italy, Finland, Poland and the Netherlands)
3. compare the impact of a health service intervention ‘PACE Steps to Success’ – which aims to integrate high-quality palliative care in long-term care facilities – with that of traditional care on resident and staff outcomes and on cost-effectiveness in long-term care facilities in Europe
4. develop products/tools to assist policy and decision-makers at national and international levels in making informed and evidence-based decisions regarding good palliative care practices in long term care facilities

Project Results:
For work package 1 (WP1), PACE in collaboration with the European Association of Palliative Care (Taskforce on long term care facilities) published the report ‘Mapping palliative care systems in long term care facilities (LTCFs) in Europe’ in 2017 describing all types of LTCFs and the development of palliative care in LTCFs in 29 different countries.
The resulting publication “Palliative Care Development in European Care Homes and Nursing Homes: Application of a Typology of Implementation” (Froggatt et al, JAMDA, in press) shows that there are important challenges in ensuring that national policies, funding, regulatory and quality assurance frameworks specifically address palliative care for older people in LTCFs, accompanied by appropriate implementation measures to make sure staff are sufficiently equipped to tackle those challenges.

For WP 2, we performed a cross-sectional study in 2015 of deceased residents and of staff (care assistants, nurses) working in LTCFs in 6 EU countries.
• To obtain representative nationwide samples we performed a cross-sectional study of deaths of residents in long-term care facilities in BE, UK, IT, FI, PL and NL using proportional stratified random sampling.
• Across the six countries, 322 participating facilities retrospectively reported all deaths of residents in and outside the facilities over a three-month period in 2015. For each case, structured after-death questionnaires were sent to the administrator/director, staff member most involved in care, treating physician (GP or nursing home physician) and a relative. All questionnaires were developed in English and translated to Dutch, Finnish, Polish, and Italian.
• A total number of 1707 deceased residents were identified across the 322 facilities. Response rates to the questionnaires across countries were: for facility manager/administrators 95.7%, for nursing staff 81.6% and for treating physicians 68.3%.
• To obtain a representative result of staff knowledge and attitudes regarding palliative care, a cross-sectional study of staff was conducted in the same facilities. In total, 2275 staff members participated.
• The results will be published in peer reviewed international journals focusing on country differences in quality of dying of residents, quality of end-of-life care, staff knowledge and attitudes regarding palliative care and well as the technical efficiency in palliative care delivery.

For WP 3 (standardisation and translation of the health service intervention ‘PACE Steps Success’ in LTCFs) we prepared the ‘PACE Steps to Success’ intervention and accompanying materials for use in six EU countries and Switzerland (which takes part in the PACE trial with own funding). This intervention aims to integrate palliative care in day-to-day routines to ensure behavioural sustainability. The lead international trainer (UK) trained 16 trainers from 7 countries (BE, UK, IT, FI, PL, NL, CH) in 2015 (own funding for CH). Country trainers are responsible for the implementation of the PACE intervention in participating facilities in each country. A controlled cluster trial to evaluate “PACE Steps to Success” (WP4 – study II) is running (2015 to 2017) in these 7 countries. Across countries, 76 facilities were randomised to either intervention or control. At baseline, all deaths over the previous four months were registered and questionnaires were sent to the administrator/ director, staff member most involved in care, treating GP and a relative. The intervention was implemented during the following 12 months after which the same quantitative measurements will be performed for outcome and cost evaluation at month 13 and month 17 in each facility. Process evaluation will include quantitative and qualitative measurements throughout and after implementation of the intervention following the RE-AIM framework for the evaluation of implementation of complex interventions.

In study I and study II, costs and cost-effectiveness measurements are included (WP5). The analyses for study I is being performed following data analysis plans and the first results will be published in the following year (WP6 and WP7). With regard to WP 8 (creating impact), we finalized our impact and dissemination plan and organized an interim policy conference to raise awareness and address key drivers for change on all different levels aimed to construct meaningful policy recommendations. Results from the mapping study and from the trial, such as benchmarking tools and training packages, will be used for awareness raising campaigns and dissemination in the next project period and will be available on the PACE website (

Potential Impact:
Expected results
PACE will considerably advance research in this field by providing high-quality evidence concerning the effectiveness of palliative care. The obtained evidence will concern not only quality of dying and quality of end-of-life care but also cost-effectiveness. PACE will provide important cross-country evidence to inform innovative research in this domain in Europe and beyond.

PACE will also advance the field of long-term care practice: large scale population-based databases constructed in the PACE countries will provide important opportunities for national and international health care agencies to benchmark their own performance. PACE will help to introduce a palliative care approach into long-term care facilities, which is a very new and challenging endeavor. Palliative care is still generally being perceived as ‘terminal care’ or care for people in the final days/weeks of life. However, as the WHO definition indicates, palliative care is applicable early in the course of disease when potentially life-prolonging treatments are still available. Even though not all residents of long-term care facilities are terminally ill, such facilities and its patients can benefit from a palliative care approach or “culture” and from screening residents for palliative care needs in a systematic manner.

PACE also aims to assist policy and decision-makers in long term care. The comparisons of the performance – in terms of quality as well as costs – of long-term care settings in the EU will assist them in making evidence-informed decisions about palliative care implementation in the facilities in their countries. The unique consortium of PACE which brings together partners with expertise in research, practice and policy at national and EU levels will make it possible to inform policy and decision-makers in adequate and effective ways.

Potential applications
PACE aims to 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-informed decisions on optimal palliative care delivery in LTCFs. The project results will be translated into general dissemination tools (website, newsletters, publications, conferences, training etc.) and policy recommendations that will target different groups – policy, practice, the academic community, and the general public – at different levels – internationally, nationally, regionally and locally. PACE will also develop a standardized train-the-trainer package of the ‘Route to Success’ intervention to improve the quality of palliative care in LTCFs. The training materials will be translated, disseminated and made freely available for other EU countries after the study period, which will create opportunities for establishing a standardized palliative care approach in European LTCFs.

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