Final Report Summary - PRISMA (Reflecting the positive diversities of European priorities for research and measurement in end of life care)
Executive summary:
The World Health Organisation (WHO) recent guidance palliative care - the solid facts showed that in many countries less than 0.5 % of research spending in cancer is allocated to end-of-life and palliative care. Recommendations from WHO reports are to encourage collaboration in end-of-life research to overcome barriers. With an annual 1.7 million deaths from cancer in the whole of Europe and notable disparities in clinical delivery, research and innovation amongst European Member States, there is an urgent need to improve care at the end of life for patients and families. In order for the ageing European population to benefit from effective care (in terms of costs and outcomes), robust measurement should be harmonised across Europe and conducted according to highest scientific principles in line with the philosophy, principles and goals of end-of-life care.
The aim of PRISMA, a collaborating action project funded by the European Commission, was to inform best practice and harmonise research in end-of-life care for cancer patients across Europe through comparison and exchange of approaches and experiences in measurement and research priorities. Accordingly, PRISMA conducted a three-year multidisciplinary programme to advance science and policy and to enhance coordination of cross-national activity within the region of Europe. This was achieved through eight Work package (WP)s delivered between 2008-2011 involving 11 partner organisations across nine countries, focussed on end-of-life across Europe and in particular focused upon: culture, public preferences and priorities of citizens, clinical research methods and priorities, best practice in tool use, routine outcome measurement in practice, long-term care settings, management and coordination, as well as policy development.
In summary, a number of recommendations were generated from PRISMA:
1. better end-of-life care in Europe should follow PRISMA expert guidance in the selection and use of outcome measures;
2. the body of potential measures should not proliferate but should be rationalised to include a set of core measures to be used across settings, such as the palliative care outcome scale http://pos-pal.org ;
3. existing tools, such as Palliative care outcome scale (POS), should be refined and adapted to meet needs of specific populations including older people;
4. advancement of end-of-life clinical practice and science require articulation of concepts of culture within and across countries;
5. European outcomes are currently suboptimal due to under-investment in research, and a lack of harmonised methods, requiring a policy response;
6. policy initiatives should facilitate routine measurement (using measures such as POS and the POS symptom sub-scale (POS-S)) with pooled datasets and institutional support to analyse data and implement improvements in patient-reported outcomes;
7. research funding designated to end-of-life and or palliative care is required to advance research, science and innovation within Europe.
Project context and objectives:
PRISMA involved work on a set of objectives to develop new evidence, harmonise practice, develop and disseminate new outputs for the wider European community of scientists, clinicians and policy makers to enhance end-of-life cancer care for European citizens. PRISMA also aimed to harmonise and co-ordinate use of POS and the Support team assessment schedule (STAS) as the two primary measures, while identifying other measures in common use and appraising their use in light of clinical and public priorities as well as cultural dimensions of end of life care.
Defining end-of-life care is complex. End-of-life care is a diffuse term which tends to be used more in academic contexts than amongst practitioners or patients and families. PRISMA took a conservative approach to defining end-of-life care and adopted a working definition arising from the National Institutes of Health state-of-the-science conference on improving end-of-life care, namely that while there is no exact definition of end-of-life the following components are present in end of life (a) the presence of a chronic disease(s) or symptoms or functional impairments that persist that may also fluctuate and (b) the symptoms or impairments resulting from the underlying irreversible disease require formal (paid, professional) or informal (unpaid) care and can lead to death.
PRISMA's work was undertaken in the context of an ageing and culturally diversifying European population, an increasing incidence of cancer mortality, a complex scientific endeavour in measuring outcomes for patients at the end of life, a renewed focus on the importance of Patient-reported outcome measures (PROMs), and a fragmented and uncoordinated approach across Europe to end-of-life care, research and outcomes. Across PRISMA's eight WPs the following five objectives were achieved:
1. collaboration on culture and end-of-life care across different countries in Europe, differences in priorities and evidence were explored and mapped;
2. the nature and conduct of research into end-of-life care in cancer across Europe was studied and compared, and also compared with clinical and public priorities;
3. approaches and experiences in end-of-life cancer care measurement and quality indicators were mapped and harmonised;
4. online resources were developed to support and enhance pan-European measurement and research in end-of-life care for cancer patients;
5. a long-lasting European collaborative in end-of-life cancer care research was fostered and facilitated.
By coordinating tool use, PRISMA also offered a model to optimise end-of-life care research and measurement and identify both commonalities and differences in the evaluation of quality indicators for cancer patients and their families across Europe. Incorporating wide public and clinical consultation with the coordination of POS central to the programme, PRISMA advanced scientifically sound practice while taking account of cultural difference and public expectations within Europe.
Project results:
Since its inception in 2008, PRISMA drew together participants from more than 36 countries across Europe, and included an African partner. PRISMA's lead partner (King's College London, a WHO collaborating centre for palliative care and older people) was also involved in palliative care capacity building events hosted by the WHO European regional office, involving discussions with representatives from Albania, Slovakia, Slovenia, Latvia, Montenegro and Turkey throughout the period of PRISMA. Service-user consultation formed part of PRISMA and links were established with the European Cancer Patient Coalition.
PRISMA's African partner allowed for comparisons outside of Europe, and work with national initiatives from Australia aided PRISMA's innovations in outcome measurement. PRISMA's European Union-level events have helped bridge the gap between practice, policy and research, culminating in the launching of our findings and resources at the PRISMA symposium 2011. As illustrated in figure one, PRISMA comprised eight WPs or streams of work.
Experts in end-of-life care and research led PRISMA's WPs and the project, namely: Scientific director: Professor Irene J Higginson; Project coordinator: Dr Richard Harding; Project manager / Research fellow: Dr Barbara Daveson; WP1 - culture: Dr Marjolein Gysels; WP2 - public priorities and preferences: Barbara Gomes; WP3 clinical research priorities: Professor Stein Kaasa; WP4 - Outcome measurement specifically POS and STAS: Dr Claudia Bausewein; WP5 symptom measurement and POS-S: Professor Pedro Lopes-Ferreira; WP6 long term care facilities: Professor Luc Deliens; WP7 - Management and integration: Dr Richard Harding; and WP8 - policy: Dr Barbara Daveson and Noël Derycke. Integration was aided by involvement of partner organisations across Europe and Africa, as detailed in table one.
PRISMA's integrated WPs enabled the achievement of all PRISMA's intended activities, deliverables and milestones throughout the 36-month project period. Accordingly, PRISMA delivered:
1. new evidence to advance better end-of-life care;
2. expert collaborative networks incorporating new and existing PRISMA members to enable pan-European collaborations beyond the grant period; and
3. the production and dissemination of a range of outputs aimed at differing audiences, including scientific peer-review journal publications, summary reports, conference proceedings, and freely available resources to enable clinicians, researchers and policy makers to access best practice and robust guidance to harmonise approaches using best scientific principles with clear clinical utility.
Wide demand and uptake of PRISMA outputs has been achieved through a broad dissemination strategy and access occurred through new and existing mechanisms, including dissemination at an invite-only symposium held in Brussels 2011, and a pan-European congress (WP8). In summary, the following main results have been discovered and delivered through our complementary and integrated WPs.
WP1: Cultural difference in end-of-life care
In order to develop collaboration on culture and end-of-life care across different countries in Europe, WP1 explored and mapped cultural differences in definitions and priorities for end-of-life care in and across eight European countries (United Kingdom, Germany, Norway, Belgium, the Netherlands, Spain, Italy and Portugal). The evidence on culture and end-of-life care was also examined through a literature review regarding culture and end-of-life care for eight European countries. Efforts for future directions in achieving culturally appropriate quality standards for end-of-life care were coordinated, and an expert network of the most prominent experts on culture and end-of-life care was constructed to progress work in this field in the future. This network was realised through international expert workshops and meetings. In addition, an accompanying survey was conducted to clarify definitions of end-of-life care; end-of-life care in policy and practice; country-specific priorities; and culture-specific approaches to end-of-life.
Cross-cultural research priorities were identified through the expert network activity, including an expert workshop that involved 30 experts from 14 European. The following priorities were identified:
1. clarifying the concepts of culture and cultural competence;
2. defining end of life in a context of social and cultural diversity, with a focus on concepts of end-of-life care and bioethics, end-of-life care experiences, and care practices in different settings; and
3. developing appropriate methodologies and outcome measurement that address diversity.
An online blog for patients and interested professionals was developed and maintained throughout the project period and subsequent to this http://cultureeol.wordpress.com/ The publication of a systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom and an appraisal of the literature on end-of-life care for minority ethnic groups in the United Kingdom with policy recommendations regarding the end-of-life care strategy. Multi-factorial indicators that contribute to low service use and service quality as received by minority ethnic groups were identified. The need for clarification of what is meant by 'culturally competent' care within diverse Europe was also identified. Qualitative data was collected in Kenya from professionals, patients and families to inform local policy. The findings from this analysis are currently being prepared for peer-reviewed publication.
WP2: Public priorities and preferences for end-of-life care
WP2 examined existing evidence on public preferences and priorities for end of life cancer care; designed, commissioned and disseminated a cross-national opinion poll of public preferences and priorities for end of life care in seven European countries; and promoted cross-national reflection amongst palliative and end-of-life care researchers to ensure end-of-life cancer care research and measurement addressed diversities as well as commonalities in public views across Europe. New knowledge regarding priorities and preferences of European citizens for end-of-life cancer care resulted.
WP2's large-scale survey of a random selection of households was conducted to determine public priorities and preferences for end-of-life care. This involved interviewing 9 344 individuals aged 16 years or older in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. This was achieved through expert meetings and workshops, survey construction and piloting, a linguistic validation process involving PRISMA members and external experts, and the training of 149 interviewers. Manuscripts detailing these findings are currently under review and further are in preparation. An interactive toolkit for health care managers to inform commissioning in light of local public preferences and priorities has been constructed.
Fieldwork in Kenya was conducted in January 2010 by PRISMA's African partner who surveyed 201 national Kenyan citizens in 17 streets in the capital (Nairobi). Manuscripts for publication in relation to this work are being prepared.
WP3: Clinical research priorities in end-of-life care
WP3 studied and compared how research involving end-of-life cancer care has been conducted across Europe, identifying and developing a research agenda based upon clinical priorities for end-of-life care. This was achieved through a survey and an international workshop. The survey findings allowed for mapping and a description of how research in end-of-life care in Europe has been conducted, and the identification of priorities and barriers in this area of research. During the international workshop an exploration of the results and issues revealed by the survey was completed, in order to identify clinical priorities for end-of-life cancer care research within Europe, and to propose a future research agenda, as well as identify barriers to end-of-life care research, along with possibilities and solutions to overcome barriers and improve the research.
Symptomatology, issues related to care of the dying, and policy and organisation of services were identified as priority areas for future research. Research methodology was regarded as important in relation to all areas, and a need to move from descriptive to interventional studies was identified. A lack of consensus on definitions and outcomes, capacity and funding, environment and culture, and knowledge transfer and dissemination were identified as barriers to end-of-life care research barriers. These findings have been published in the European Journal of Cancer, and Supportive Care in Cancer.
WP4: Best practice and resources for the use of end of life care quality indicators
The objectives of WP4 were to:
identify and describe the ways in which measurement tools have been used in end-of-life care in European countries;
- coordinate exchange of experiences in those who have used the identified tools in end-of-life care; and
- develop resources and support for those who use POS and STAS in end-of-life cancer care.
This was achieved through a web-based survey sent to approximately 2 000 European citizens after being reviewed by experts and piloted in seven European countries. An international workshop to build consensus regarding the future use and development of outcome measurement in Europe and Africa was also conducted.
The international two-day workshop was designed to coordinate the exchange of experiences of those using outcome measures in palliative care. The workshop was conducted with 32 experts in outcome measurement in palliative care from Europe, North America and Africa participants. A pan-European outcome measurement expert group and a taskforce on outcome measurement with the European Association for Palliative Care taskforce were established. Partnerships outside of Europe were consolidated to ensure that examples of successful national outcome measurement programmes were consulted to aid the construction of an outcome measurement programme in the region of Europe.
An outcome measurement guidance booklet was published and a POS website constructed to aid training, tool selection, dissemination, resource development and education for one of the primary measurement tools examined in PRISMA http://pos-pal.org
The pan-European web-based survey was conducted in Europe and Africa with approximately 2 000 survey invites distributed to professionals working in clinical care, audit and research in palliative care. Results indicated that professionals are generally willing to use outcome measures but that they need more support in the use and implementation of outcome measures in clinical practice and research through training and guidance. It was found that no new tools are required but rather judicious selection and refinement of existing tools with appropriate scientific properties is needed. Outcome measures, such as POS, used often in clinical practice are also those often used in research. The findings regarding professionals' views and experiences have been published in Health and Quality of Life Outcomes, a subgroup analysis of doctors' and nurses' data has been published in Palliative Medicine, and editorial agreement to publish additional findings in a special issue of Journal of Pain and Symptom Management, which is the highest-ranking journal in this topic, has been secured.
WP5: Best practice in symptom measurement
An original version of the POS-S booklet and symptom card was constructed, translated and culturally adapted into Portuguese and English by WP5. This process was followed by cognitive interviewing with 10 patients, a feasibility study with an additional 30 patients receiving palliative care and a validation study with a larger sample. The content of the booklet explained POS-S use and its properties. An easy-to-use card for health professionals with the POS one side and the POS-S on the other was developed and included.
A national Portuguese network of POS users was established with extensive contacts established with the main palliative care (public and private) Portuguese institutions. An international meeting was convened to advance the use and applicability of POS-S and to establish a collaborative for POS-S. The POS-S booklet and symptom card was translated into Spanish, Dutch, German and Italian, plus Greek and French versions are near completion. Digital and hard-copy POS-S resources have been widely distributed to policy makers, clinicians, researchers, and academics http://pos-pal.org
WP6: Best practice in long-term care facilities
An expert research network regarding end-of-life care in long-term care facilities within Europe was established through literature searching and a web-based survey conducted by WP6. Two different but overlapping researcher groups were identified for two different purposes: one researcher group had data available on patient outcome measures relevant for palliative care in long term-care facilities that was (possibly) eligible for secondary data analyses, and PRISMA drew together the second group of prominent researchers who were working on palliative care in long-term care facilities to develop a research agenda and build a sustainable research collaborative. An initial workshop was organised for the first group of researchers in order to share experiences in measurement and to explore possibilities for comparative secondary data analyses. A second workshop was organised for the other group of researchers to develop a long-lasting collaborative and a future research agenda.
It was found that little research on patient outcome data collected from palliative care patients residing in long-term care facilities in Europe is available. Although there are researchers from different European countries working on and interested in palliative care research in long-term care settings. These researchers have now been identified, and are working together as a consequence of PRISMA on collaborative proposals and projects. A research agenda has been developed including a number of priority topics for future research on palliative care in long-term care facilities including: adequate methods and well-developed and tested measurement instrument(s) such as POS, advance care planning, psychosocial well-being, physical comfort and dignity, how to use and implement advance directives in long-term care facilities, communication, and organisational aspects of palliative care in long-term care facilities. The European studies on palliative care outcomes collected by use of measurement instruments with residents of long-term care facilities greatly differed with regard to study design, study population and outcome variables. A systematic review regarding the methodological rigour of palliative care research in long-term care facilities in Europe has been published and presented internationally.
WP7: Management
In addition to coordinating and managing the project, WP7 conducted a service-user consultation exercise using multiple consultation methods, including for example:
- PRISMA shared its findings with the European Cancer Patient Coalition (ECPC) and established feedback via a pan-European meeting which took place prior to the PRISMA Symposium.
- The views of patients and families were collected via 'Client Boards'. Service users were well represented at these meetings, in which participants were able to rank the relative importance of PRISMA findings and recommendations, add any issues they felt were missing, and/or identify any findings or recommendations which they felt were of little or no relevance.
- The lay summary of PRISMA's findings was presented to patients, public and online communities via a blog and the 'Cancer Voices Network', which provided an opportunity for people affected by cancer to be linked into projects and information. In order to maximise the number and range of responses, the summary document was also directly posted to all 170 registered members of the blog and in total the user consultation was viewed online 334 times.
- Patients and families were directly approached and group consultation facilitated by a multidisciplinary professional and volunteer team. Information was sent a week before the consultation so that patients and families had a feasible opportunity to digest the information before responding.
When integrated, the user consultation findings indicated (a) commitment to the provision of appropriate cultural competency training, and (b) clinical concerns in relation to appropriate care at the end of life.
Service-users described how some cultural competence methods emphasised difference rather than the more meaningful aspects, and individual effects of culture. Examples of unnecessary intervention and lack of pain control were shared. Users indicated that care should be patient-centred and that measures that can reflect individual difference and needs should be prioritised.
The user consultation also provided valuable public priority data relating to place of care, clinical research, information and communication as follows:
- Place of care: Service-users agreed that home was their preferred place of care and death. Dying at home required equal access to symptom management as in hospital. Adequate support for caregivers was a very common concern. Preferences for place of death might vary by circumstance and this may include caregiver stress.
- Clinical research: Service-users agreed that pain was their main concern, followed by breathlessness, which provokes anxiety. Concern about pain was partly due to not wanting close ones to witness unrelieved pain. An interdisciplinary approach to care was underlined. 'Comfort' was often described as the primary concern of patients and families, and enhancing care in nursing homes was identified as an urgent area of enquiry.
- Information and communication: Service-users agreed that they would always want to be fully informed about their illness and prognosis. There was considerable concern about information needs, and patients stressed that doctors should refer to someone else if necessary and never go beyond their expertise. Doctors should try not to make the patient upset and stating the (accurate) expected survival time was discouraged; the physician should rather inform about the disease and treatment options. Nurturing hope in all settings and delivering even bad news in a good manner was considered important. It was agreed that communication should be the research priority.
WP8: Final conference
Preparation and delivery of an invite-only symposium for leading policy makers, politicians, clinical leads, pan-European service-user groups and academics in Brussels under the patronage of Her Royal Highness Princess Mathilde of Belgium and the auspices of the EAPC Onlus was achieved. Formation of an interest group from the symposium delegates and a special issue of the Journal of Pain and Symptom Management resulted.
Findings from the symposium were that in Europe coordination and collaboration between the EU-27 is required for end-of-life and palliative care service-delivery, policy, research and innovation to progress. International academic and clinical partnerships have been established. Examples of cross-national coordination, and national research and systems capacity building are available providing robust models for future developments within Europe. The PRISMA symposium offered important international examples from beyond the European Community that have made significant advances through concerted policy, funding and research efforts. Agreement regarding a minimum national outcome measurement data set reliant on a core set of measures is now required within the region. The poor coordination of outcome tools, the lack of support in their selection and use, and the plethora of tools that are used in small numbers of studies, offer an important message for those developing and choosing outcome measures showing that these need to be rationalised. Agreement should build upon previous pan-European outputs, and could for example include POS which is a brief, multi-dimensional, patient-centred measure used by clinicians, researchers and academics within Europe. National data collection initiatives will be aided by sustained government action that includes vertical (e.g. intra-level) and horizontal action (e.g. inter-level). Sustainable leadership, clear terminology and collaborative networks will aid progress, and the integration of service-users', carers' and clinicians' priorities remains central to end-of-life and palliative developments. Long-term research investment from funding streams designated for end-of-life or palliative care will support evidence-based developments and outputs in the European region advancing European research and innovation.
Summary statement on dissemination
Access to new resources, increased uptake of PRISMA products and therefore coordination, and dissemination on multiple levels has been core to the activity and successes of PRISMA in this second reporting period. This was achieved through:
- Ten expert meetings at venues across Europe bringing together new and existing PRISMA members on specific topics essential to enhancing outcomes for patients at the end of life.
- Papers in peer-review journals to situate PRISMA and PRISMA's findings within the realm of peer-reviewed science and to add to the evidence base, including a forthcoming special issue of the Journal Pain and Symptom Management (the highest ranking journal in this topic) on PRISMA and its symposium. To date, 15 original manuscripts have been published and many more are under review or are in preparation.
- Maintenance of a website www.prismafp7.eu (linked to all partner websites) that offered free access to experts and outputs, including freely downloadable resources and links to key sites such as the POS website which (an additional deliverable of PRISMA), and the EAPC. PRISMA outputs have featured on the websites: National End-of-Life Care Strategy, National Council of Hospice and Palliative Care, Europa and EAPC, and a new outcome measurement website http://pos-pal.org
- Production of reports and clinically relevant resources in electronic and hard-copy formats such as the outcome measurement guidance, and the POS-S booklet and symptom card (in four languages with two more languages planned). The Help the Hospices Charity has agreed to fund the publication and distribution of these resources to all UK-based hospices. A published summary of PRISMA resources and activities within the European Oncology Nursing Society newsletter that was distributed to all oncology nurses in Europe.
- Press coverage in England, Wales, Scotland, Ireland and Portugal. In the European Commission press release for PRISMA the Research, Innovation and Science Commissioner Maíre Geoghegan-Quinn was quoted as saying 'PRISMA is an example of how EU-funded research on health issues can make a real difference to patients, not only by developing new treatments but also by providing data and other tools to support clinical decision-making and management'.
- Patient and family user consultations on PRISMA findings and recommendations with clinical groups in each partners' country and with a pan-European cancer patient non-government organisation.
- A PRISMA final symposium in Brussels for invited delegates aimed at policy makers and leaders from patient groups, political, clinical and academic arenas across Europe.
Potential impact:
The principle approach to PRISMA's impact on end-of-life for European citizens has centred on the following:
1. creation of expert networks;
2. generation of new knowledge;
3. production and provision of new resources to assist scientists, clinicians and policy makers, and
4. active dissemination and engagement with key audiences across Europe.
Creation of expert networks
PRISMA has had a fundamental approach of multiprofessionalism in its WPs. This reflects both the dimensions of need among patients and families (physical, psychological, social and spiritual, in line with the WHO definition of palliative care provided in the solid facts series (1), the need for interdisciplinary research to develop and test tools that reflect patient and family needs and hold robust psychometric properties (demonstrated here by the anthropological, medical, social science, nursing, public and clinical research, and advocacy expertise in our coordinating action).
During the life of PRISMA, we convened and facilitated ten face-to-face expert meetings across Europe, bringing together not only its 45 members but many experts from fields of health care, research and policy to establish new partnerships and common objectives and understandings. This has facilitated a core objective, i.e. the harmonisation of measurement across Europe.
Importantly, the PRISMA resources, expertise and activity have been maintained to ensure an ongoing network of experts. In particular, the electronic resources are being maintained though new emerging work, and the PRISMA activities and outputs are underpinning two Task Forces within the European Association of Palliative Care: an outcome measurement taskforce and a taskforce on older people.
Importantly, two staff recruited for PRISMA WP activities have now won competitive Marie Curie initial training network PhD training fellowships to conduct Doctoral study in palliative care among partners that first worked together under the auspices of PRISMA.
Generation of new knowledge
PRISMA has focused on undertaking substantive studies in order to generate the knowledge, and appraise the evidence, necessary to promote best clinical and scientific practice, and to promote better measurement for patients and families in a routine fashion across the Europe.
From WP1 ('Culture'): the literature scoping has helped us to synthesise cultural conceptual meanings from across Europe, and to identify where clinicians and policy makers should focus their efforts in order to clarify common terms such as cultural competence in health care delivery, and to drive an agenda for a diversifying European population.
From WP2 ('Public preferences and priorities'): this large international dataset is essential for policy makers responsible for planning how and where care is delivered. It is enormous resonance for clinicians with respect to how practice for information giving is taught and delivered.
From WP3 ('Clinical preferences and priorities'): new data has been produced that explains why end-of-life research is currently suboptimal and specific resource and skills deficits that policy makers should address if the end of life is to receive the attention it deserves have been identified.
From WP4 (best practice in outcome measures): the challenges from clinical and scientific perspectives on why measurement is so poorly harmonised is now understood. There is a clear need for guidance and coordinated international support in choosing, using, analysing and supporting data use from outcome measures. Current practice in tool use is poor and uncoordinated within the region of Europe. PRISMA has provided the 'Outcomes Measurement Guidance' that is freely available http://pos-pal.org
From WP5 ('Best practice in symptom measurement'): new data on the validity of a simple outcome tool to measure common symptoms. Very importantly, a simple measurement booklet (based on POS) that has been translated in seven different languages and is downloadable is now available http://pos-pal.org. This pocket-sized booklet has been developed in consultation with clinicians, and aims to promote routine measurement.
From WP6 (long term care settings): a process of harmonisation of research for older people has now begun within Europe. As increasing numbers of European citizens spend the end of their life in residential settings, this work is essential to ensure appropriate and effective care. Having convened a number of expert groups, and systematically appraised the methodological literature, PRISMA have peer-review published a review of the state of science and recommendations for better science and better coordination.
From WP7 (management and integration): a model to enable further developments in end-of-life care within Europe has been provided demonstrating how cross-national efforts can be advanced to enable better outcomes for European citizens.
From WP8 (policy): a group of policy makers and influencers has been established and the need for research science and innovation funding designated for end-of-life and or palliative care has been identified.
Utilisation of PRISMA resources
PRISMA has developed, and provided free access to, a number of resources for Europeans researching, delivering, advocating for, or writing policy on end-of-life care. These resources are the integrated outputs from our multidisciplinary group, and include peer-review papers with new evidence for policy use, and a number of specific resources. The outcome measures guidance has been published and distributed across Europe, and is freely available on our website. It is essential reading for anyone who provides care and needs to chose and apply a measure. It offers detailed advice on what to do with data at the individual and facility level, and signposts important references. It is a core tool for bringing measurement into common practice across Europe. It is also essential for researchers to address the challenge of poor common tool use across studies and countries, and for policy makers who are attempting to routine measure and demonstrate effectiveness (and cost effectiveness) of care. The POS and POS-S booklets are practical free tools to enable clinicians to use a common tool, and are available in twelve and seven languages respectively.
Active engagement and dissemination
In order to influence clinical practice, research, and serve the needs of policy makers, engagement with potential consumers of our outputs, and a dissemination strategy, have been core to our programme of work.
The PRISMA website www.prismafp7.eu and the POS website www.pos-pal.org host or provide web links to all the project details, partner contacts, the outcome measure guidance, and the POS/POS-S booklets for clinicians. We have also hosted a blog from WP1 http://cultureeol.wordpress.com/
13 peer-reviewed publications have resulted so far and additional publications are in preparation, in Press or under review. Those published so far are itemised on our websites. Our pan-European meetings and conferences have attracted hundreds of new interested partners to our work and these meetings have influences our activity and outcomes. Importantly, we have conducted a patient / family consultation in our partner countries and along with the European Cancer patient Coalition ('nothing about us without us') we have sought user views in our activities and to assist in disseminating our work. At the 2011 European Association of Palliative Care conference PRISMA had six accepted PRISMA presentations plus several poster presentations, two invited talks, a 'meet the expert' workshop on use of outcome measures attended by 50 delegates, and a summit with a medical research council project on methodology in end-of-life research. At this meeting we hosted a PRISMA stand that freely provided our POS / POS-S booklets and the guidance report, all in seven languages, and in total 700 POS-S booklets and 200 outcome measure guidance booklets were distributed.
The final WP of PRISMA was an invited policy-level symposium in Brussels. The symposium of leading policy makers, politicians, clinical leads and academics reviewed the findings of each WP and debated the appropriate European way forward. Invited speakers from Australian and Canadian Governments offered insight from successful policy and clinical strategies that can enhance outcomes for Europe. The Symposium has formed a forthcoming Special Issue of the Journal of Pain and Symptom Management.
Recommendations from PRISMA
1. better end-of-life care in Europe should follow PRISMA expert guidance in the selection and use of outcome measures;
2. the body of potential measures should not proliferate but should be rationalised to include a set of core measures to be used across settings, such as the POS http://pos-pal.org ;
3. existing tools, such as POS, should be refined and adapted to meet needs of specific populations including older people;
4. advancement of end-of-life clinical practice and science require articulation of concepts of culture within and across countries;
5. European outcomes are currently suboptimal due to under-investment in research, and a lack of harmonised methods, requiring a policy response;
6. policy initiatives should facilitate routine measurement (using measures such as POS and the POS symptom sub-scale (POS-S) with pooled datasets and institutional support to analyse data and implement improvements in patient-reported outcomes;
7. research funding designated to end-of-life and or palliative care is required to advance research, science and innovation within Europe.
List of websites: www.prismafp7.eu
The World Health Organisation (WHO) recent guidance palliative care - the solid facts showed that in many countries less than 0.5 % of research spending in cancer is allocated to end-of-life and palliative care. Recommendations from WHO reports are to encourage collaboration in end-of-life research to overcome barriers. With an annual 1.7 million deaths from cancer in the whole of Europe and notable disparities in clinical delivery, research and innovation amongst European Member States, there is an urgent need to improve care at the end of life for patients and families. In order for the ageing European population to benefit from effective care (in terms of costs and outcomes), robust measurement should be harmonised across Europe and conducted according to highest scientific principles in line with the philosophy, principles and goals of end-of-life care.
The aim of PRISMA, a collaborating action project funded by the European Commission, was to inform best practice and harmonise research in end-of-life care for cancer patients across Europe through comparison and exchange of approaches and experiences in measurement and research priorities. Accordingly, PRISMA conducted a three-year multidisciplinary programme to advance science and policy and to enhance coordination of cross-national activity within the region of Europe. This was achieved through eight Work package (WP)s delivered between 2008-2011 involving 11 partner organisations across nine countries, focussed on end-of-life across Europe and in particular focused upon: culture, public preferences and priorities of citizens, clinical research methods and priorities, best practice in tool use, routine outcome measurement in practice, long-term care settings, management and coordination, as well as policy development.
In summary, a number of recommendations were generated from PRISMA:
1. better end-of-life care in Europe should follow PRISMA expert guidance in the selection and use of outcome measures;
2. the body of potential measures should not proliferate but should be rationalised to include a set of core measures to be used across settings, such as the palliative care outcome scale http://pos-pal.org ;
3. existing tools, such as Palliative care outcome scale (POS), should be refined and adapted to meet needs of specific populations including older people;
4. advancement of end-of-life clinical practice and science require articulation of concepts of culture within and across countries;
5. European outcomes are currently suboptimal due to under-investment in research, and a lack of harmonised methods, requiring a policy response;
6. policy initiatives should facilitate routine measurement (using measures such as POS and the POS symptom sub-scale (POS-S)) with pooled datasets and institutional support to analyse data and implement improvements in patient-reported outcomes;
7. research funding designated to end-of-life and or palliative care is required to advance research, science and innovation within Europe.
Project context and objectives:
PRISMA involved work on a set of objectives to develop new evidence, harmonise practice, develop and disseminate new outputs for the wider European community of scientists, clinicians and policy makers to enhance end-of-life cancer care for European citizens. PRISMA also aimed to harmonise and co-ordinate use of POS and the Support team assessment schedule (STAS) as the two primary measures, while identifying other measures in common use and appraising their use in light of clinical and public priorities as well as cultural dimensions of end of life care.
Defining end-of-life care is complex. End-of-life care is a diffuse term which tends to be used more in academic contexts than amongst practitioners or patients and families. PRISMA took a conservative approach to defining end-of-life care and adopted a working definition arising from the National Institutes of Health state-of-the-science conference on improving end-of-life care, namely that while there is no exact definition of end-of-life the following components are present in end of life (a) the presence of a chronic disease(s) or symptoms or functional impairments that persist that may also fluctuate and (b) the symptoms or impairments resulting from the underlying irreversible disease require formal (paid, professional) or informal (unpaid) care and can lead to death.
PRISMA's work was undertaken in the context of an ageing and culturally diversifying European population, an increasing incidence of cancer mortality, a complex scientific endeavour in measuring outcomes for patients at the end of life, a renewed focus on the importance of Patient-reported outcome measures (PROMs), and a fragmented and uncoordinated approach across Europe to end-of-life care, research and outcomes. Across PRISMA's eight WPs the following five objectives were achieved:
1. collaboration on culture and end-of-life care across different countries in Europe, differences in priorities and evidence were explored and mapped;
2. the nature and conduct of research into end-of-life care in cancer across Europe was studied and compared, and also compared with clinical and public priorities;
3. approaches and experiences in end-of-life cancer care measurement and quality indicators were mapped and harmonised;
4. online resources were developed to support and enhance pan-European measurement and research in end-of-life care for cancer patients;
5. a long-lasting European collaborative in end-of-life cancer care research was fostered and facilitated.
By coordinating tool use, PRISMA also offered a model to optimise end-of-life care research and measurement and identify both commonalities and differences in the evaluation of quality indicators for cancer patients and their families across Europe. Incorporating wide public and clinical consultation with the coordination of POS central to the programme, PRISMA advanced scientifically sound practice while taking account of cultural difference and public expectations within Europe.
Project results:
Since its inception in 2008, PRISMA drew together participants from more than 36 countries across Europe, and included an African partner. PRISMA's lead partner (King's College London, a WHO collaborating centre for palliative care and older people) was also involved in palliative care capacity building events hosted by the WHO European regional office, involving discussions with representatives from Albania, Slovakia, Slovenia, Latvia, Montenegro and Turkey throughout the period of PRISMA. Service-user consultation formed part of PRISMA and links were established with the European Cancer Patient Coalition.
PRISMA's African partner allowed for comparisons outside of Europe, and work with national initiatives from Australia aided PRISMA's innovations in outcome measurement. PRISMA's European Union-level events have helped bridge the gap between practice, policy and research, culminating in the launching of our findings and resources at the PRISMA symposium 2011. As illustrated in figure one, PRISMA comprised eight WPs or streams of work.
Experts in end-of-life care and research led PRISMA's WPs and the project, namely: Scientific director: Professor Irene J Higginson; Project coordinator: Dr Richard Harding; Project manager / Research fellow: Dr Barbara Daveson; WP1 - culture: Dr Marjolein Gysels; WP2 - public priorities and preferences: Barbara Gomes; WP3 clinical research priorities: Professor Stein Kaasa; WP4 - Outcome measurement specifically POS and STAS: Dr Claudia Bausewein; WP5 symptom measurement and POS-S: Professor Pedro Lopes-Ferreira; WP6 long term care facilities: Professor Luc Deliens; WP7 - Management and integration: Dr Richard Harding; and WP8 - policy: Dr Barbara Daveson and Noël Derycke. Integration was aided by involvement of partner organisations across Europe and Africa, as detailed in table one.
PRISMA's integrated WPs enabled the achievement of all PRISMA's intended activities, deliverables and milestones throughout the 36-month project period. Accordingly, PRISMA delivered:
1. new evidence to advance better end-of-life care;
2. expert collaborative networks incorporating new and existing PRISMA members to enable pan-European collaborations beyond the grant period; and
3. the production and dissemination of a range of outputs aimed at differing audiences, including scientific peer-review journal publications, summary reports, conference proceedings, and freely available resources to enable clinicians, researchers and policy makers to access best practice and robust guidance to harmonise approaches using best scientific principles with clear clinical utility.
Wide demand and uptake of PRISMA outputs has been achieved through a broad dissemination strategy and access occurred through new and existing mechanisms, including dissemination at an invite-only symposium held in Brussels 2011, and a pan-European congress (WP8). In summary, the following main results have been discovered and delivered through our complementary and integrated WPs.
WP1: Cultural difference in end-of-life care
In order to develop collaboration on culture and end-of-life care across different countries in Europe, WP1 explored and mapped cultural differences in definitions and priorities for end-of-life care in and across eight European countries (United Kingdom, Germany, Norway, Belgium, the Netherlands, Spain, Italy and Portugal). The evidence on culture and end-of-life care was also examined through a literature review regarding culture and end-of-life care for eight European countries. Efforts for future directions in achieving culturally appropriate quality standards for end-of-life care were coordinated, and an expert network of the most prominent experts on culture and end-of-life care was constructed to progress work in this field in the future. This network was realised through international expert workshops and meetings. In addition, an accompanying survey was conducted to clarify definitions of end-of-life care; end-of-life care in policy and practice; country-specific priorities; and culture-specific approaches to end-of-life.
Cross-cultural research priorities were identified through the expert network activity, including an expert workshop that involved 30 experts from 14 European. The following priorities were identified:
1. clarifying the concepts of culture and cultural competence;
2. defining end of life in a context of social and cultural diversity, with a focus on concepts of end-of-life care and bioethics, end-of-life care experiences, and care practices in different settings; and
3. developing appropriate methodologies and outcome measurement that address diversity.
An online blog for patients and interested professionals was developed and maintained throughout the project period and subsequent to this http://cultureeol.wordpress.com/ The publication of a systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom and an appraisal of the literature on end-of-life care for minority ethnic groups in the United Kingdom with policy recommendations regarding the end-of-life care strategy. Multi-factorial indicators that contribute to low service use and service quality as received by minority ethnic groups were identified. The need for clarification of what is meant by 'culturally competent' care within diverse Europe was also identified. Qualitative data was collected in Kenya from professionals, patients and families to inform local policy. The findings from this analysis are currently being prepared for peer-reviewed publication.
WP2: Public priorities and preferences for end-of-life care
WP2 examined existing evidence on public preferences and priorities for end of life cancer care; designed, commissioned and disseminated a cross-national opinion poll of public preferences and priorities for end of life care in seven European countries; and promoted cross-national reflection amongst palliative and end-of-life care researchers to ensure end-of-life cancer care research and measurement addressed diversities as well as commonalities in public views across Europe. New knowledge regarding priorities and preferences of European citizens for end-of-life cancer care resulted.
WP2's large-scale survey of a random selection of households was conducted to determine public priorities and preferences for end-of-life care. This involved interviewing 9 344 individuals aged 16 years or older in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. This was achieved through expert meetings and workshops, survey construction and piloting, a linguistic validation process involving PRISMA members and external experts, and the training of 149 interviewers. Manuscripts detailing these findings are currently under review and further are in preparation. An interactive toolkit for health care managers to inform commissioning in light of local public preferences and priorities has been constructed.
Fieldwork in Kenya was conducted in January 2010 by PRISMA's African partner who surveyed 201 national Kenyan citizens in 17 streets in the capital (Nairobi). Manuscripts for publication in relation to this work are being prepared.
WP3: Clinical research priorities in end-of-life care
WP3 studied and compared how research involving end-of-life cancer care has been conducted across Europe, identifying and developing a research agenda based upon clinical priorities for end-of-life care. This was achieved through a survey and an international workshop. The survey findings allowed for mapping and a description of how research in end-of-life care in Europe has been conducted, and the identification of priorities and barriers in this area of research. During the international workshop an exploration of the results and issues revealed by the survey was completed, in order to identify clinical priorities for end-of-life cancer care research within Europe, and to propose a future research agenda, as well as identify barriers to end-of-life care research, along with possibilities and solutions to overcome barriers and improve the research.
Symptomatology, issues related to care of the dying, and policy and organisation of services were identified as priority areas for future research. Research methodology was regarded as important in relation to all areas, and a need to move from descriptive to interventional studies was identified. A lack of consensus on definitions and outcomes, capacity and funding, environment and culture, and knowledge transfer and dissemination were identified as barriers to end-of-life care research barriers. These findings have been published in the European Journal of Cancer, and Supportive Care in Cancer.
WP4: Best practice and resources for the use of end of life care quality indicators
The objectives of WP4 were to:
identify and describe the ways in which measurement tools have been used in end-of-life care in European countries;
- coordinate exchange of experiences in those who have used the identified tools in end-of-life care; and
- develop resources and support for those who use POS and STAS in end-of-life cancer care.
This was achieved through a web-based survey sent to approximately 2 000 European citizens after being reviewed by experts and piloted in seven European countries. An international workshop to build consensus regarding the future use and development of outcome measurement in Europe and Africa was also conducted.
The international two-day workshop was designed to coordinate the exchange of experiences of those using outcome measures in palliative care. The workshop was conducted with 32 experts in outcome measurement in palliative care from Europe, North America and Africa participants. A pan-European outcome measurement expert group and a taskforce on outcome measurement with the European Association for Palliative Care taskforce were established. Partnerships outside of Europe were consolidated to ensure that examples of successful national outcome measurement programmes were consulted to aid the construction of an outcome measurement programme in the region of Europe.
An outcome measurement guidance booklet was published and a POS website constructed to aid training, tool selection, dissemination, resource development and education for one of the primary measurement tools examined in PRISMA http://pos-pal.org
The pan-European web-based survey was conducted in Europe and Africa with approximately 2 000 survey invites distributed to professionals working in clinical care, audit and research in palliative care. Results indicated that professionals are generally willing to use outcome measures but that they need more support in the use and implementation of outcome measures in clinical practice and research through training and guidance. It was found that no new tools are required but rather judicious selection and refinement of existing tools with appropriate scientific properties is needed. Outcome measures, such as POS, used often in clinical practice are also those often used in research. The findings regarding professionals' views and experiences have been published in Health and Quality of Life Outcomes, a subgroup analysis of doctors' and nurses' data has been published in Palliative Medicine, and editorial agreement to publish additional findings in a special issue of Journal of Pain and Symptom Management, which is the highest-ranking journal in this topic, has been secured.
WP5: Best practice in symptom measurement
An original version of the POS-S booklet and symptom card was constructed, translated and culturally adapted into Portuguese and English by WP5. This process was followed by cognitive interviewing with 10 patients, a feasibility study with an additional 30 patients receiving palliative care and a validation study with a larger sample. The content of the booklet explained POS-S use and its properties. An easy-to-use card for health professionals with the POS one side and the POS-S on the other was developed and included.
A national Portuguese network of POS users was established with extensive contacts established with the main palliative care (public and private) Portuguese institutions. An international meeting was convened to advance the use and applicability of POS-S and to establish a collaborative for POS-S. The POS-S booklet and symptom card was translated into Spanish, Dutch, German and Italian, plus Greek and French versions are near completion. Digital and hard-copy POS-S resources have been widely distributed to policy makers, clinicians, researchers, and academics http://pos-pal.org
WP6: Best practice in long-term care facilities
An expert research network regarding end-of-life care in long-term care facilities within Europe was established through literature searching and a web-based survey conducted by WP6. Two different but overlapping researcher groups were identified for two different purposes: one researcher group had data available on patient outcome measures relevant for palliative care in long term-care facilities that was (possibly) eligible for secondary data analyses, and PRISMA drew together the second group of prominent researchers who were working on palliative care in long-term care facilities to develop a research agenda and build a sustainable research collaborative. An initial workshop was organised for the first group of researchers in order to share experiences in measurement and to explore possibilities for comparative secondary data analyses. A second workshop was organised for the other group of researchers to develop a long-lasting collaborative and a future research agenda.
It was found that little research on patient outcome data collected from palliative care patients residing in long-term care facilities in Europe is available. Although there are researchers from different European countries working on and interested in palliative care research in long-term care settings. These researchers have now been identified, and are working together as a consequence of PRISMA on collaborative proposals and projects. A research agenda has been developed including a number of priority topics for future research on palliative care in long-term care facilities including: adequate methods and well-developed and tested measurement instrument(s) such as POS, advance care planning, psychosocial well-being, physical comfort and dignity, how to use and implement advance directives in long-term care facilities, communication, and organisational aspects of palliative care in long-term care facilities. The European studies on palliative care outcomes collected by use of measurement instruments with residents of long-term care facilities greatly differed with regard to study design, study population and outcome variables. A systematic review regarding the methodological rigour of palliative care research in long-term care facilities in Europe has been published and presented internationally.
WP7: Management
In addition to coordinating and managing the project, WP7 conducted a service-user consultation exercise using multiple consultation methods, including for example:
- PRISMA shared its findings with the European Cancer Patient Coalition (ECPC) and established feedback via a pan-European meeting which took place prior to the PRISMA Symposium.
- The views of patients and families were collected via 'Client Boards'. Service users were well represented at these meetings, in which participants were able to rank the relative importance of PRISMA findings and recommendations, add any issues they felt were missing, and/or identify any findings or recommendations which they felt were of little or no relevance.
- The lay summary of PRISMA's findings was presented to patients, public and online communities via a blog and the 'Cancer Voices Network', which provided an opportunity for people affected by cancer to be linked into projects and information. In order to maximise the number and range of responses, the summary document was also directly posted to all 170 registered members of the blog and in total the user consultation was viewed online 334 times.
- Patients and families were directly approached and group consultation facilitated by a multidisciplinary professional and volunteer team. Information was sent a week before the consultation so that patients and families had a feasible opportunity to digest the information before responding.
When integrated, the user consultation findings indicated (a) commitment to the provision of appropriate cultural competency training, and (b) clinical concerns in relation to appropriate care at the end of life.
Service-users described how some cultural competence methods emphasised difference rather than the more meaningful aspects, and individual effects of culture. Examples of unnecessary intervention and lack of pain control were shared. Users indicated that care should be patient-centred and that measures that can reflect individual difference and needs should be prioritised.
The user consultation also provided valuable public priority data relating to place of care, clinical research, information and communication as follows:
- Place of care: Service-users agreed that home was their preferred place of care and death. Dying at home required equal access to symptom management as in hospital. Adequate support for caregivers was a very common concern. Preferences for place of death might vary by circumstance and this may include caregiver stress.
- Clinical research: Service-users agreed that pain was their main concern, followed by breathlessness, which provokes anxiety. Concern about pain was partly due to not wanting close ones to witness unrelieved pain. An interdisciplinary approach to care was underlined. 'Comfort' was often described as the primary concern of patients and families, and enhancing care in nursing homes was identified as an urgent area of enquiry.
- Information and communication: Service-users agreed that they would always want to be fully informed about their illness and prognosis. There was considerable concern about information needs, and patients stressed that doctors should refer to someone else if necessary and never go beyond their expertise. Doctors should try not to make the patient upset and stating the (accurate) expected survival time was discouraged; the physician should rather inform about the disease and treatment options. Nurturing hope in all settings and delivering even bad news in a good manner was considered important. It was agreed that communication should be the research priority.
WP8: Final conference
Preparation and delivery of an invite-only symposium for leading policy makers, politicians, clinical leads, pan-European service-user groups and academics in Brussels under the patronage of Her Royal Highness Princess Mathilde of Belgium and the auspices of the EAPC Onlus was achieved. Formation of an interest group from the symposium delegates and a special issue of the Journal of Pain and Symptom Management resulted.
Findings from the symposium were that in Europe coordination and collaboration between the EU-27 is required for end-of-life and palliative care service-delivery, policy, research and innovation to progress. International academic and clinical partnerships have been established. Examples of cross-national coordination, and national research and systems capacity building are available providing robust models for future developments within Europe. The PRISMA symposium offered important international examples from beyond the European Community that have made significant advances through concerted policy, funding and research efforts. Agreement regarding a minimum national outcome measurement data set reliant on a core set of measures is now required within the region. The poor coordination of outcome tools, the lack of support in their selection and use, and the plethora of tools that are used in small numbers of studies, offer an important message for those developing and choosing outcome measures showing that these need to be rationalised. Agreement should build upon previous pan-European outputs, and could for example include POS which is a brief, multi-dimensional, patient-centred measure used by clinicians, researchers and academics within Europe. National data collection initiatives will be aided by sustained government action that includes vertical (e.g. intra-level) and horizontal action (e.g. inter-level). Sustainable leadership, clear terminology and collaborative networks will aid progress, and the integration of service-users', carers' and clinicians' priorities remains central to end-of-life and palliative developments. Long-term research investment from funding streams designated for end-of-life or palliative care will support evidence-based developments and outputs in the European region advancing European research and innovation.
Summary statement on dissemination
Access to new resources, increased uptake of PRISMA products and therefore coordination, and dissemination on multiple levels has been core to the activity and successes of PRISMA in this second reporting period. This was achieved through:
- Ten expert meetings at venues across Europe bringing together new and existing PRISMA members on specific topics essential to enhancing outcomes for patients at the end of life.
- Papers in peer-review journals to situate PRISMA and PRISMA's findings within the realm of peer-reviewed science and to add to the evidence base, including a forthcoming special issue of the Journal Pain and Symptom Management (the highest ranking journal in this topic) on PRISMA and its symposium. To date, 15 original manuscripts have been published and many more are under review or are in preparation.
- Maintenance of a website www.prismafp7.eu (linked to all partner websites) that offered free access to experts and outputs, including freely downloadable resources and links to key sites such as the POS website which (an additional deliverable of PRISMA), and the EAPC. PRISMA outputs have featured on the websites: National End-of-Life Care Strategy, National Council of Hospice and Palliative Care, Europa and EAPC, and a new outcome measurement website http://pos-pal.org
- Production of reports and clinically relevant resources in electronic and hard-copy formats such as the outcome measurement guidance, and the POS-S booklet and symptom card (in four languages with two more languages planned). The Help the Hospices Charity has agreed to fund the publication and distribution of these resources to all UK-based hospices. A published summary of PRISMA resources and activities within the European Oncology Nursing Society newsletter that was distributed to all oncology nurses in Europe.
- Press coverage in England, Wales, Scotland, Ireland and Portugal. In the European Commission press release for PRISMA the Research, Innovation and Science Commissioner Maíre Geoghegan-Quinn was quoted as saying 'PRISMA is an example of how EU-funded research on health issues can make a real difference to patients, not only by developing new treatments but also by providing data and other tools to support clinical decision-making and management'.
- Patient and family user consultations on PRISMA findings and recommendations with clinical groups in each partners' country and with a pan-European cancer patient non-government organisation.
- A PRISMA final symposium in Brussels for invited delegates aimed at policy makers and leaders from patient groups, political, clinical and academic arenas across Europe.
Potential impact:
The principle approach to PRISMA's impact on end-of-life for European citizens has centred on the following:
1. creation of expert networks;
2. generation of new knowledge;
3. production and provision of new resources to assist scientists, clinicians and policy makers, and
4. active dissemination and engagement with key audiences across Europe.
Creation of expert networks
PRISMA has had a fundamental approach of multiprofessionalism in its WPs. This reflects both the dimensions of need among patients and families (physical, psychological, social and spiritual, in line with the WHO definition of palliative care provided in the solid facts series (1), the need for interdisciplinary research to develop and test tools that reflect patient and family needs and hold robust psychometric properties (demonstrated here by the anthropological, medical, social science, nursing, public and clinical research, and advocacy expertise in our coordinating action).
During the life of PRISMA, we convened and facilitated ten face-to-face expert meetings across Europe, bringing together not only its 45 members but many experts from fields of health care, research and policy to establish new partnerships and common objectives and understandings. This has facilitated a core objective, i.e. the harmonisation of measurement across Europe.
Importantly, the PRISMA resources, expertise and activity have been maintained to ensure an ongoing network of experts. In particular, the electronic resources are being maintained though new emerging work, and the PRISMA activities and outputs are underpinning two Task Forces within the European Association of Palliative Care: an outcome measurement taskforce and a taskforce on older people.
Importantly, two staff recruited for PRISMA WP activities have now won competitive Marie Curie initial training network PhD training fellowships to conduct Doctoral study in palliative care among partners that first worked together under the auspices of PRISMA.
Generation of new knowledge
PRISMA has focused on undertaking substantive studies in order to generate the knowledge, and appraise the evidence, necessary to promote best clinical and scientific practice, and to promote better measurement for patients and families in a routine fashion across the Europe.
From WP1 ('Culture'): the literature scoping has helped us to synthesise cultural conceptual meanings from across Europe, and to identify where clinicians and policy makers should focus their efforts in order to clarify common terms such as cultural competence in health care delivery, and to drive an agenda for a diversifying European population.
From WP2 ('Public preferences and priorities'): this large international dataset is essential for policy makers responsible for planning how and where care is delivered. It is enormous resonance for clinicians with respect to how practice for information giving is taught and delivered.
From WP3 ('Clinical preferences and priorities'): new data has been produced that explains why end-of-life research is currently suboptimal and specific resource and skills deficits that policy makers should address if the end of life is to receive the attention it deserves have been identified.
From WP4 (best practice in outcome measures): the challenges from clinical and scientific perspectives on why measurement is so poorly harmonised is now understood. There is a clear need for guidance and coordinated international support in choosing, using, analysing and supporting data use from outcome measures. Current practice in tool use is poor and uncoordinated within the region of Europe. PRISMA has provided the 'Outcomes Measurement Guidance' that is freely available http://pos-pal.org
From WP5 ('Best practice in symptom measurement'): new data on the validity of a simple outcome tool to measure common symptoms. Very importantly, a simple measurement booklet (based on POS) that has been translated in seven different languages and is downloadable is now available http://pos-pal.org. This pocket-sized booklet has been developed in consultation with clinicians, and aims to promote routine measurement.
From WP6 (long term care settings): a process of harmonisation of research for older people has now begun within Europe. As increasing numbers of European citizens spend the end of their life in residential settings, this work is essential to ensure appropriate and effective care. Having convened a number of expert groups, and systematically appraised the methodological literature, PRISMA have peer-review published a review of the state of science and recommendations for better science and better coordination.
From WP7 (management and integration): a model to enable further developments in end-of-life care within Europe has been provided demonstrating how cross-national efforts can be advanced to enable better outcomes for European citizens.
From WP8 (policy): a group of policy makers and influencers has been established and the need for research science and innovation funding designated for end-of-life and or palliative care has been identified.
Utilisation of PRISMA resources
PRISMA has developed, and provided free access to, a number of resources for Europeans researching, delivering, advocating for, or writing policy on end-of-life care. These resources are the integrated outputs from our multidisciplinary group, and include peer-review papers with new evidence for policy use, and a number of specific resources. The outcome measures guidance has been published and distributed across Europe, and is freely available on our website. It is essential reading for anyone who provides care and needs to chose and apply a measure. It offers detailed advice on what to do with data at the individual and facility level, and signposts important references. It is a core tool for bringing measurement into common practice across Europe. It is also essential for researchers to address the challenge of poor common tool use across studies and countries, and for policy makers who are attempting to routine measure and demonstrate effectiveness (and cost effectiveness) of care. The POS and POS-S booklets are practical free tools to enable clinicians to use a common tool, and are available in twelve and seven languages respectively.
Active engagement and dissemination
In order to influence clinical practice, research, and serve the needs of policy makers, engagement with potential consumers of our outputs, and a dissemination strategy, have been core to our programme of work.
The PRISMA website www.prismafp7.eu and the POS website www.pos-pal.org host or provide web links to all the project details, partner contacts, the outcome measure guidance, and the POS/POS-S booklets for clinicians. We have also hosted a blog from WP1 http://cultureeol.wordpress.com/
13 peer-reviewed publications have resulted so far and additional publications are in preparation, in Press or under review. Those published so far are itemised on our websites. Our pan-European meetings and conferences have attracted hundreds of new interested partners to our work and these meetings have influences our activity and outcomes. Importantly, we have conducted a patient / family consultation in our partner countries and along with the European Cancer patient Coalition ('nothing about us without us') we have sought user views in our activities and to assist in disseminating our work. At the 2011 European Association of Palliative Care conference PRISMA had six accepted PRISMA presentations plus several poster presentations, two invited talks, a 'meet the expert' workshop on use of outcome measures attended by 50 delegates, and a summit with a medical research council project on methodology in end-of-life research. At this meeting we hosted a PRISMA stand that freely provided our POS / POS-S booklets and the guidance report, all in seven languages, and in total 700 POS-S booklets and 200 outcome measure guidance booklets were distributed.
The final WP of PRISMA was an invited policy-level symposium in Brussels. The symposium of leading policy makers, politicians, clinical leads and academics reviewed the findings of each WP and debated the appropriate European way forward. Invited speakers from Australian and Canadian Governments offered insight from successful policy and clinical strategies that can enhance outcomes for Europe. The Symposium has formed a forthcoming Special Issue of the Journal of Pain and Symptom Management.
Recommendations from PRISMA
1. better end-of-life care in Europe should follow PRISMA expert guidance in the selection and use of outcome measures;
2. the body of potential measures should not proliferate but should be rationalised to include a set of core measures to be used across settings, such as the POS http://pos-pal.org ;
3. existing tools, such as POS, should be refined and adapted to meet needs of specific populations including older people;
4. advancement of end-of-life clinical practice and science require articulation of concepts of culture within and across countries;
5. European outcomes are currently suboptimal due to under-investment in research, and a lack of harmonised methods, requiring a policy response;
6. policy initiatives should facilitate routine measurement (using measures such as POS and the POS symptom sub-scale (POS-S) with pooled datasets and institutional support to analyse data and implement improvements in patient-reported outcomes;
7. research funding designated to end-of-life and or palliative care is required to advance research, science and innovation within Europe.
List of websites: www.prismafp7.eu