PROJECT FINAL REPORT - kcl.ac.uk › cicelysaunders › attachments › ... · PROJECT FINAL REPORT Grant Agreement number: 201655 Project acronym : PRISMA Project title: Reflecting

PROJECT FINAL REPORT

Grant Agreement number: 201655

Project acronym: PRISMA

Project title: Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-life Care

Funding Scheme: Seventh Framework Programme

Period covered: from 01/05/08 to 30/04/11

Name of the scientific representative of the project's co-ordinator, Title and Organisation:

Dr Richard Harding

Tel: +44 (0)20 7848 5589

Fax: +44 (0)20 7848 5517

E-mail: [email protected]

Project website address: www.prismafp7.eu

http://www.prismafp7.eu/

Table of Contents

1. Final publishable summary report.............................................................................................. 3 1.1 Executive summary ................................................................................................................. 3 1.2 Summary description of project context and objectives .......................................................... 4 1.3 A description of the main science and technological results/foregrounds .............................. 5

1.3.1 Work package one (WP1): Cultural difference in end-of-life care ................................... 7 1.3.2 Work package two (WP2): Public priorities and preferences for end-of-life care ........... 7 1.3.3 Work package three (WP3): Clinical research priorities in end-of-life care .................... 8 1.3.4 Work package four (WP4): Best practice and resources for the use of end of life care quality indicators ............................................................................................................................. 8 1.3.5 Work package five (WP5): Best practice in symptom measurement .............................. 9 1.3.6 Work package six (WP6): Best practice in long-term care facilities ................................ 9 1.3.6 Work package seven (WP7): Management .................................................................. 10 1.3.7 Work package eight (WP8): Final conference .............................................................. 11 1.3.8 Summary statement on dissemination .......................................................................... 12 1.3.9 The potential impact (including the socio-economic impact and the wider societal implications of the project so far) and the main dissemination activities and exploitation of results 13

2 Use and dissemination of foreground ..................................................................................... 16 2.1 Section A ............................................................................................................................... 16 2.2 List of all dissemination activities (publications, conferences, workshops, web sites/applications, press releases, flyers, articles published in the popular press, videos, media briefings, presentations, exhibitions, thesis, interviews, films, TV clips, posters) ............................ 20 2.2 Section B ............................................................................................................................... 48

2.2.1 B1: List of applications for patents, trademarks, registered designs, etc...................... 48 2.2.2 B2: Exploitable foreground ............................................................................................ 49

3 Report on societal implications ................................................................................................ 50

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1. Final publishable summary report

1.1 Executive summary

The World Health Organization (WHO (Europe)) 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 (1). With an annual 1.7 million deaths from cancer in the whole of Europe (2) and notable disparities in clinical delivery, research and innovation amongst European member states (3), 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 harmonized 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 3-year multidisciplinary programme to advance science and policy and to enhance co-ordination of cross-national activity within the region of Europe. This was achieved through eight work packages delivered between 2008-2011 involving 11 partner organisations across nine countries, focussed on end-of-life across Europe and in particular focussed upon: (1) culture, (2) public preferences and priorities of citizens, (3) clinical research methods and priorities, (4) best practice in tool use, (5) routine outcome measurement in practice, (6) Long term care settings, (7) management and coordination, and (8) 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 rationalized to include a set of core measures to be used across settings, such as the Palliative care Outcome Scale (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 harmonized 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 analyze 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.

http://pos-pal.org/

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1.2 Summary description of 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 the Palliative care Outcome Scale (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” (4).

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 work packages 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.

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1.3 A description of the main science and technological results/foregrounds

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 work packages (WPs) or streams of work.

Figure one: PRISMA’s eight integrated work packages

Experts in end-of-life care and research led PRISMA’s work packages 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

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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.

Table one: PRISMA’s eleven consortium partners

Beneficiary or partner Number *

Partner’s full name Short name of beneficiary or

partner

Country

1 (coordinator)

King’s College London KCL UK

2 Fundacio Clinic per a la Recerca Biomedica

FCRB ES

3 Norges Teknisk-Naturvitenskapelige Universitet (NTNU)

NTNU NO

4 Deutsche Gesellschaft fur Palliativmedizin (DGP)

DGP DE

5 Centro de Estudos e Investigação em Saúde da Universidade de Coimbra (CEISUC)

CEISUC PT

6 Vrije Universiteit Medisch Centrum Amsterdam (VUMCA)

VUMCA NL

7 Universiteit Antwerpen (UA)

UA BE

8 Hospital Santa Maria (HSM)

HSM PT

9 African Palliative Care Association (APCA)

APCA UG

10 Istituto di Ricerca in Medicina Palliativa (IRMP)

ONLUS IT

11 Federatie Palliatieve Zorg Vlaanderen (FPZV)

FPZV BE

PRISMA’s integrated work packages enabled the achievement of all PRISMA’s intended activities, deliverables and milestones throughout the 36-month project period. Accordingly, PRISMA delivered: (a) new evidence to advance better end-of-life care; (b) expert collaborative networks incorporating new and existing PRISMA members to enable pan-European collaborations beyond the grant period; and (c) 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 work packages.

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1.3.1 Work package one (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 (UK, 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 countries. 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 UK (5) and an appraisal of the literature on end-of-life care for minority ethnic groups in the UK with policy recommendations regarding the end-of-life care strategy (6). 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.

1.3.2 Work package two (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 (7), a linguistic validation process involving PRISMA members and external experts, and the training of 149

http://cultureeol.wordpress.com/

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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.

1.3.3 Work package three (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 (1) identify clinical priorities for end-of-life cancer care research within Europe, and to propose a future research agenda, (2) 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 (8), and Supportive Care in Cancer (9).

1.3.4 Work package four (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 2000 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 2-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.

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An outcome measurement guidance booklet was published and a Palliative care Outcome Scale (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 (10), a subgroup analysis of doctors’ and nurses’ data has been published in Palliative Medicine (11), 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.

1.3.5 Work package five (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.

1.3.6 Work package six (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.

http://pos-pal.org/

http://pos-pal.org/

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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 (12) and presented internationally.

1.3.6 Work package seven (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 ECPC (“European Cancer Patient Coalition”) 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

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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.

1.3.7 Work package eight (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 co-ordination 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.

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1.3.8 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.


http://pos-pal.org/

http://pos-pal.org/

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1.3.9 The potential impact (including the socio-economic impact and the wider societal implications of the project so far) and the main dissemination activities and exploitation of results

The principle approach to PRISMA’s impact on end-of-life for European citizens has centred on (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 work packages. 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 harmonization 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 Work Package 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.

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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, analyzing 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 harmonization 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.

http://pos-pal.org/

http://pos-pal.org/

15

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/.

Thirteen 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 Work package 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 work package 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 rationalized to include a set of core measures to be used across settings, such as the Palliative care Outcome Scale (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 harmonized 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.


http://www.pos-pal.org/

http://cultureeol.wordpress.com/

http://pos-pal.org/

2 Use and dissemination of foreground 2.1 Section A

Table two: List of all scientific (peer-reviewed) publications relating to the foreground of the project

Num

ber

Title

Mai

n au

thor

Title

of t

he

perio

dica

l or

the

serie

s

Num

ber,

date

or

freq

uenc

y

Publ

ishe

r

Plac

e of

pu

blic

atio

n

Year

of

publ

icat

ion

Rel

evan

t pa

ges

Perm

anen

t id

entif

iers

1 (if

ava

ilabl

e)

Is/W

ill o

pen

acce

ss2

prov

ided

to

this

pu

blic

atio

n?

1

What is the methodological rigour

of palliative care research in long-term

care facilities in Europe? A systematic

review

Albers, G Palliative Medicine

Published eight times

per year

eISSN: 1477-030X

SAGE

Print & electronic

journal listed in

MEDLINE, PubMed

etc.

2011 In press Not available No

2

Applying Patient Reported Outcome

Measures (PROMs) in Palliative Care - Users'

Cry for Help.

Bausewein, C

Health and Quality of

Life Outcomes

Online immediate publication

BMC

Free access online journal

2011 In press Not available Yes

1 A permanent identifier should be a persistent link to the published version full text if open access or abstract if article is pay per view) or to the final manuscript accepted for publication (link to article in repository). 2 Open Access is defined as free of charge access for anyone via Internet. Please answer "yes" if the open access to the publication is already established and also if the embargo period for open access is not yet over but you intend to establish open access afterwards.

3

The PRISMA Symposium 2:

Lessons from beyond Europe. Reflections on

the Evolution of Palliative Care

Research and Policy in Canada.

Carstairs, S

Journal of Pain and Symptom

Management

ISSN: 0885-3924

Thomson Reuters

Print & electronic

journal listed in

MEDLINE, PubMed

etc.


4


Lessons from beyond Europe. Why invest in research and service

development in palliative care? An

Australian perspective.

Currow, DC


Management

ISSN: 0885-3924

Thomson Reuters

Print & electronic

journal listed in

MEDLINE, PubMed

etc.


5

Constructing understandings of end-of-life care in Europe:

a qualitative study involving cognitive interviewing with

implications for cross-national surveys.

Daveson, BA

Journal of Palliative Medicine

Bi-monthly publication

March 14(3)

Mary Ann Liebert,

Incorporated Publishers

Print & electronic

journal listed in

MEDLINE, PubMed

etc.

2011 pp. 343 -349

PMID:

21306232

http://www.liebertonline.com/doi/pdfplus/10.1089/jpm.2010

.0348

No

http://www.liebertonline.com/doi/pdfplus/10.1089/jpm.2010.0348







6

Are we heading in the same direction?

European and African doctors’ and nurses’ views, experiences

and recommendations for outcome

measurement in palliative care

Daveson, BA

Palliative Medicine

Published eight times

per year

eISSN: 1477-030X

SAGE

Print & electronic

journal listed in

MEDLINE, PubMed

etc.

2011 In press

DOI: 10.1177/0269216311409614

No

7

Systematic review of the primary research

on minority ethnic groups and end-of-life

care from the UK

Evans, N


Management

ISSN: 0885-3924

Thomson Reuters

Print & electronic

journal listed in

MEDLINE, PubMed

etc.


8

Appraisal of literature reviews on end-of-life

care for minority ethnic groups in the UK and a

critical comparison with policy

recommendations from the UK end-of-life care

strategy

Evans, N BMC Health

Services Research

11: 141 BMC Central Open Access

Publisher

Online open

access journal

2011

http://www.biomedcentral.com/content/pdf/1472-6963-11-141.pdf

DOI:10.1186/1472-6963-11-

141

Yes

9 PRISMA: A pan-European co-

ordinating action to

Harding, R European Journal of

Jun; 46(9) Pergamon Press

Print & electronic

journal

2010 pp. 1493-1501 PMID: Yes








advance the science in end-of-life cancer care

Cancer listed in MEDLINE, PubMed

etc.

20185295

10


Outcome Tool Use. Disharmony in

European outcomes research for palliative and advanced disease care: too many tools in

practice.

Harding, R


Management

ISSN: 0885-3924

Thomson Reuters

Print & electronic

journal listed in

MEDLINE, PubMed

etc.


11

The PRISMA Symposium 4: How

should Europe progress end-of-life

and palliative care and research?

Recommendations from the proceedings.

Daveson, BA


Management

ISSN: 0885-3924

Thomson Reuters

Print & electronic

journal listed in

MEDLINE, PubMed

etc.


12

Palliative care in cancer: How to improve clinical

research

Kaasa, S European Journal of

Cancer

18 March, 46 (2010)

Pergamon Press

Print & electronic

journal listed in

MEDLINE, PubMed

etc.

2010 1486-1487

doi:101016/j.ejca.2010.03.020

No

13

Clinical priorities, barriers and solutions in end-of-life cancer

care research across Europe. Report from a

workshop

Sigurdardottir, KR

European Journal of

Cancer July 46(10) Pergamon

Press

Print & electronic

journal listed in

MEDLINE, PubMed

etc.

2010 1815-1822

http://dx.doi.org/10.1016/j.ejca.2010.03

.012

No

14 A pan-European

survey of research in end-of-life cancer care

Sigurdardottir, KR

Supportive Care in Cancer

2010 Nov 30. [Epub ahead of

print]

Springer International

Print & electronic

journal listed in

MEDLINE, PubMed

etc.

2010 Not available

https://bora.uib.no/bitstream/1956/4555/1/A%20p

an-European%20survey%20of%20research%20in%20end-of-life%20cancer%20c

are.pdf

Yes

2.2 List of all dissemination activities (publications, conferences, workshops, web sites/applications, press releases, flyers, articles published in the popular press, videos, media briefings, presentations, exhibitions, thesis, interviews, films, TV clips, posters)

Table three: List of all dissemination activities

No. Type of Main Title Date Place Type of Size of Countries

http://dx.doi.org/10.1016/j.ejca.2010.03.012





https://bora.uib.no/bitstream/1956/4555/1/A%20pan-European%20survey%20of%20research%20in%20end-of-life%20cancer%20care.pdf















activities leader audience audience

addressed

1 Presentation Pedro Lopes-Ferreira

Best practice in symptom measurement 26 June 2008 Amsterdam PRISMA

participants 26 PRISMA countries

2 Presentation Richard Harding

“Reflecting the Positive diveRsities of European prIorities for reSearch and

Measurement in end-of-life cAre”

26 June 2008 Amsterdam PRISMA


3 Presentation Richard Harding PRISMA management 26 June

2008 Amsterdam PRISMA participants 26 PRISMA

countries

4 Presentation Noël Derycke Final conference presentation 26 June


countries

5 Workshop Barbara Gomes The first WP2 meeting 27 June


countries

6 Presentation Marjolein Gysels Cultural difference in end of life care 27 June


countries

7 Presentation Arantza Meñaca

What does culture mean? An analysis of the role of culture in Spanish end-of-life care

literature

27 June 2008 Vienna Public 40 EAPC

participants

8 Presentation Barbara Gomes

Public priorities and preferences for end-of-life care

27 June 2008 Amsterdam PRISMA


9 Presentation Stein Kaasa Clinical research priorities in end-of-life care 27 June


countries

10 Workshop Barbara Gomes 2nd PRISMA WP2 meeting

13 November

2008 Rome PRISMA


11 Presentation Julia Downing PRISMA and the African context

13 November

2008 Rome PRISMA


12 Presentation Pedro Lopes

Ferreira Translation and piloting

13 November

2008 Rome PRISMA


13 Presentation Fliss Murtagh

Public involvement in selecting the areas for each survey question?

13 November

2008 Rome PRISMA


14 Presentation Joachim Cohen Public opinion and PRISMA

13 November

2008 Rome PRISMA


15 Workshop Barbara Gomes 3rd PRISMA WP2 meeting 24 February

2009 London PRISMA participants 15 PRISMA

countries

16 Workshop Barbara Gomes PRISMA survey commissioning meeting 15 April

2009 London PRISMA participants 5 PRISMA

countries

17 Flyer Claudia Bausewein

PRISMA - Aiming at best practice and co-ordination of research priorities in end-of-life

care

26 April 2009 Internet

National palliative

care association members

Approximately 2,000

National palliative care association members

18 Presentation Natalie Evans

Making culture relevant to end-of-life practice: An overview of approaches to

cultural competency 8 May 2009 Vienna Public 40 EAPC

audience


What does culture mean? An analysis of the role of culture in Spanish end-of-life care

literature 8 May 2009 Vienna Public 40 EAPC

audience

20 Presentation Marjolein Gysels

A call for expertise for the development of a European network of experts on culture and

end of life care 8 May 2009 Vienna Public 40 EAPC

audience

21 Flyer Barbara Gomes

Flyer for National Coalition to promote public awareness around death, dying and

bereavement (1st inaugural meeting) 13 May 2009 UK

National Coalition

participants 15 UK

22 Presentation Nancy Gikaara Kenyan component of WP1 21 May 2009 Barcelona PRISMA


23 Presentation Erin VW Andrew

Literature scoping exercise preliminary results: Belgium 21 May 2009 Barcelona PRISMA


24 Presentation Natalie Evans German scoping exercise 21 May 2009 Barcelona PRISMA


25 Presentation Arantza Meñaca Spain and Italy compared 21 May 2009 Barcelona PRISMA


26 Presentation Natalie Evans UK scoping exercise 21 May 2009 Barcelona PRISMA


27 Workshop Barbara Gomes PRISMA WP2 4th meeting 21 May 2009 Sitges, Spain PRISMA



WP2: Public Priorities and Preferences for End of Life Care 21 May 2009 Sitges, Spain PRISMA


29 Presentation Stein Kaasa PRISMA WP3 state of the work 21 May 2009 Sitges, Spain PRISMA


30 Presentation Richard PRISMA 2nd All-assembly meeting 21 May 2009 Barcelona PRISMA 15 PRISMA

Harding Opening presentation participants countries

31 Presentation Richard Harding PRISMA objectives: 2008-2011 21 May 2009 Barcelona PRISMA


32 Presentation Claudia Bausewein

Best practice and resources for the use of POS & STAS and other tools in end of life

cancer care 22 May 2009 Barcelona PRISMA


33 Workshop Luc Deliens PRISMA WP6 meeting in Sitges 22 May 2009 Sitges PRISMA participants 18 PRISMA

countries

34 Workshop Marjolein Gysels PRISMA WP1 meeting in Sitges 22 May 2009 Sitges PRISMA



Ferreira Introduction to WP5 22 May 2009 Sitges PRISMA


36 Presentation Gwenda Albers

Best practice in measurement in long term care 22 May 2009 Sitges PRISMA


37 Presentation Noel Derycke WP8: PRISMA Final Conference 22 May 2009 Barcelona PRISMA


38 Media piece Claudia PRISMA – Vielfalt und Prioritäten in Europa in der klinischen Versorgung und Forschung

13 July 2009 Germany Public National

Germany

Bausewein am Lebensende circulation

39 Web Barbara Daveson

Section by section site map for www.prismafp7.eu 15 July 2009 UK-based Public 9837 All

40 Presentation Marjolein Gysels Outputs timetable 6 August

2009 Barcelona PRISMA participants 30 PRISMA

countries


Review of co-ordination and outputs and considering a common policy

6 August 2009 Barcelona PRISMA



Ferreira Introduction to WP5 7 August

2009 Barcelona PRISMA participants 30 PRISMA

countries

43 Web Marjolein Gysels

Cultural issues in end of life care - web link to blog Front page

19 August 2009 Barcelona Public 3,289 All


Cultural issues in end of life care - web link to blog 'About' section



Cultural issues in end of life care - web link to blog 'join the debate' section


46 Web Marjolein Cultural issues in end of life care - web link 19 August Barcelona Public 3,289 All

Gysels to blog 'Resources' section 2009

47 Conference Barbara Gomes

PRISMA WP2 call with country representatives

25 August 2009 UK-based PRISMA


48 Workshop Dagny

Faksvaag Haugen

Clinical Research Priorities in End-of-Life Care

14-16 September

2009

Trondheim, Norway

PC clinicians and

researchers 30 25 European

countries

49 Presentation Katrin

Sigurdardottir

Results from the PRISMA WP3 pan-European survey

14 September

2009

Trondheim, Norway

PC clinicians and


countries

50 Presentation Irene Higginson

Possibilities, needs and barriers to end-of-life care research in Europe – from a public

health care perspective

14 September

2009

Trondheim, Norway

PC clinicians and


countries


Sigurdardottir

A survey of end-of-life care research in Europe

15 October 2009

Trondheim, Norway

4th International Trondheim Conference on Palliative

Care

50 Nordic countries

52 Conference Pedro Lopes

Ferreira

PRISMA international conference on symptom measurement

20 October 2009 Porto

Palliative care

clinicians, researchers, funders and

50 Portugal, UK, Germany

policy makers

53 Presentation Claudia Bausewein The use of POS in Europe 20 October

2009 Porto

Palliative care


policy makers


54 Presentation Ana Barros Pinto Work Package 5 Presentation 20 October

2009 Porto

Palliative care


policy makers



Public understandings of end-of-life care in England & Germany: a qualitative study

with implications for cross-national surveys

18 February 2010

Vic, Catalonia

Palliative care


policy makers

80

Portugal, Germany,

Spain, Australia, The Netherlands,

Italy, UK


Systematic review on the use of POS and STAS

15 March 2010 Berlin

Palliative care

clinicians, researchers,

32 England, Germany, Portugal,

three Italy,

funders and policy

makers

Poland, Belgium, Canada, Georgia, Hungary,

Ireland, The Netherlands,

Norway, Spain,

Switzerland, Uganda

57 Workshop Claudia Bausewein

International PRISMA workshop on outcome measures in palliative care, 15 &

16 March 2010

15-16 March 2010 Berlin

Palliative care


policy makers

32

England, Germany,

Portual, three Italy, Poland,

Belgium, Canada, Georgia, Hungary,


Norway, Spain,

Switzerland, Uganda


Findings on POS - results from a systematic review and an online survey


Palliative care


policy

32

England, Germany,


Belgium, Canada,

makers Georgia, Hungary,


Norway, Spain,

Switzerland, Uganda


Online survey on use and experiences of outcome measurement in palliative care


Palliative care


policy makers

32

England, Germany,


Belgium, Canada, Georgia, Hungary,


Norway, Spain,

Switzerland, Uganda


Towards cultural competence in outcome measurement


Palliative care


policy makers

32

England, Germany, Portugal,

three Italy, Poland, Belgium, Canada, Georgia, Hungary,


Norway, Spain,

Switzerland, Uganda


PRISMA WP2 call with country representatives, 24 - 26 April 2010

24 April 2010 London PRISMA



PRISMA WP2 call with country representatives, 6 May 2010 6 May 2010 London

PRISMA participants and external

experts

45 PRISMA countries

63 Conference Barbara Daveson

International meeting on culture and end-of-life care 17 May 2010 Vic,

Catalonia

Palliative care clinicians, researchers, funders and policy makers

30 PRISMA countries


The role of culture in end-of-life care: key issues in three Mediterranean countries 17 May 2010 Vic,

Catalonia

Palliative care


policy makers

30 PRISMA countries



cancer care 17 May 2010 Vic,

Catalonia

Palliative care


policy makers

30 PRISMA countries

66 Presentation Chris

Gastmans / K.U.Leuven

Culture in different settings: Priorities from a Belgian perspective 17 May 2010 Vic,

Catalonia

Palliative care


policy makers

30 PRISMA countries

67 Presentation Natalie Evans Cultural Competency Models 17 May 2010 Vic,

Catalonia

Palliative care


policy makers

30 PRISMA countries

68 Presentation Yasmin

Gunaratnam

Culture in Different Settings: Priorities from a UK Perspective 17 May 2010 Vic,

Catalonia

Palliative care


policy

30 PRISMA countries

makers


PRISMA: “Reflecting the positive diversities of European priorities for research and

measurement in end-of-life care” 17 May 2010 Vic,

Catalonia

Palliative care


policy makers

30 PRISMA countries

70 Presentation Dr. Enric Benito L’espiritualitat en el final de la vida 18 May 2010 Vic,

Catalonia

Palliative care


policy makers

250 PRISMA countries


Public priorities and preferences for end-of-life care 18 May 2010 Vic,

Catalonia

Palliative care


policy makers


72 Presentation Xavier

Gómez-Batiste

End of life Cultural, Social, Ethical, Legal perspectives 18 May 2010 Vic,

Catalonia

Palliative care



policy makers

73 Presentation Marjolein Gysels Culture and end of life care 18 May 2010 Vic,

Catalonia

Palliative care


policy makers


74 Presentation Franco Toscani

Telling the truth or conserving hope? An Italian deep-rooted contradiction 18 May 2010 Vic,

Catalonia

Palliative care


policy makers


75 Presentation Fuusje de Graaff

Cultural competence and communication in palliative care for Turkish and Moroccan

immigrants in the Netherlands 18 May 2010 Vic,

Catalonia

Palliative care


policy makers


76 Presentation Chris Gastmans

Conscientious objections: a neglected topic in culture and end-of-life care 18 May 2010 Vic,

Catalonia

Palliative care

clinicians, researchers,


funders and policy

makers

77 Presentation Yasmin

Gunaratnam

Cultural Vulnerability, Care and Ethics 18 May 2010 Vic, Catalonia

Palliative care


policy makers


78 Presentation Tinne Smets

End-of-life decisions in Belgium: Attitudes and practices 18 May 2010 Vic,

Catalonia

Palliative care


policy makers


79 Presentation Albert Tuca Decisions al final de la vida: Actituds a Espanya 18 May 2010 Vic,

Catalonia

Palliative care


policy makers


80 Presentation Barbara Gomes and

Natalia

Telephone Survey: Interviewer briefing for England pilot 21 May 2010 Birmingham,

UK Interviewers 12 England

Calanzani

81 Presentation

Barbara Gomes and

Natalia Calanzani

Telephone Survey: Interviewer briefing for Italy and Spain pilots 3 June 2010 Birmingham,

UK Interviewers 15 Italy and Spain


Sigurdardottir

Clinical priorities, barriers and solutions in end-of-life cancer care research in Europe.

Report from a workshop.

11 June 2010

6th Research Congress of

the European

Association for Palliative

Care, Glasgow

Palliative care

researchers 250 International

83

Poster and poster

discussion session

Katrin Sigurdardot

tir

A survey of end-of-life cancer care research in Europe

12 June 2010

6th Research Congress of

the European

Association for Palliative

Care, Glasgow

Palliative care

researchers 250 International


Communication and minority ethnic groups: The British experience

11 June 2010 Glasgow Public 40 EAPC

audience

85 Presentation Barbara Gomes and Telephone survey: interviewer briefing for 17 June Birmingham, Interviewers 12 Germany and

Natalia Calanzani

Germany and Portugal pilots 2010 UK Portugal

86 Presentation

Barbara Gomes and

Natalia Calanzani

Telephone Survey: Interviewer briefing for Dutch, Flemish and German pilots

29 June 2010

Birmingham, UK Interviewers 30

Netherlands, Belgium

(Flanders only) and Germany

87 Presentation Barbara Daveson

PRISMA: Reflecting the positive diversities of European priorities for research and

measurement in end-of-life care. State of the Science Meeting. Patient Reported

Outcome Measures (PROMS) in Cancer and Palliative Care. Cancer Experiences

Collaborative (CECo).

6 July 2010 UK

Palliative care and oncology

researchers, clinicians and

academics

85 UK


WP2 Surveys: Areas of analysis and preliminary data

1 September 2010 Florence PRISMA


89 Presentation Gwenda Albers

Best practice in measurement in nursing homes in long term care





cancer care




Work Package 5 Report 3 September Florence PRISMA 30 PRISMA

Ferreira 2010 participants countries


Ferreira Symptom Measurement 4 September

2010 Florence PRISMA participants 30 PRISMA

countries


Sigurdardottir

Clinical priorities, barriers and solutions in end-of-life cancer care research in Europe 4 Sept 2011 Florence

FILE Palliative

Care Symposium

120

Italy, Germany, Belgium, Norway,

Spain, The Netherlands,

UK

94 Presentation Stein Kaasa

PRISMA WP3 Clinical research priorities in end-of-life care – progress and findings

2 September 2010 Florence

FILE Palliative

Care Symposium

30

Italy, Germany, Belgium, Norway,

Spain, The Netherlands,

UK


Sigurdardottir

Minimum dataset for describing a palliative care population

15 Sept 2010

Bergen, Norway

Norwegian National Palliative

Care Conference

80 Norway

96 Presentation Barbara Algorithm to determine the selection of a corresponding analytical method 6 October Canada Palliative

care 25 Canada

Daveson appropriate for cognitive interview data within palliative care research. 18th

International Congress on Palliative Care

2010 clinicians, researchers

97 Publication Irene Higginson POS – Dutch translation for patients 18 October

2010 The

Netherlands

Service-users,

researchers and clincians

Ongoing All

98 Publication Irene Higginson POS – Dutch translation for staff 18 October

2010 The

Netherlands

Service-users,

researchers and clincians

Ongoing All

99 Presentation Bárbara Antunes

Relevance of symptoms in end-of-life care: Validation of the Portuguese POS-S

27 October 2010 London Clinical team 30 England

100 Web Irene Higginson

online booklet and card for POS and POS-S www.wp5booklet.pt.vu

2 November 2010 Web-based Web users Ongoi

ng All

101 Conference Invitation

Barbara Daveson Invitation to the PRISMA Symposium 2011

20 December

2010 UK-based

EU- and national-level

policy makers, policy

influencers and funders

198

EU-27 member

states plus Montenegro,

Turkey, Switzerland and Norway

102 Flyer Barbara Daveson PRISMA symposium 2011 programme

20 December

2010 UK-based




198

EU-27 member



103 Publication Barbara Daveson PRISMA Symposium 2011 Dossier 11 March

2011 London, UK




98

EU-27 member



104 Press Release Irene Higginson

Press release for the PRISMA Symposium 2011

14 March 2011 UK Public Public All

105 Publication Claudia Bausewein

Outcome measurement in palliative care: The Essentials

23 March 2011 UK

Palliative care

clinicians, policy

makers, funders,

researchers and service-

users

2,200 EU-27

member states

106 Presentation Irene Higginson

What is the end-of-life care experience in Europe? Priorities, barriers and

opportunities for end-of-life care research in Europe

24 March 2011 Brussels




98

EU-27 member


Turkey, Switzerland,

Norway Canada, Australia

107 Presentation Dr Maria-

José Vidal-Ragout

Meeting the challenge of end-of-life care in Europe: Research, practice, science &

innovation





98

EU-27 member




108 Presentation Mr Tom Hudson

Europe in action: End-of-life care in the midst of an ageing population





98

EU-27 member




109 Presentation Dr Agis Tsouros

The European model: Recommendations & strategies for end-of-life care





98

EU-27 member




110 Presentation Dr Richard Harding

PRISMA: Reflecting the positive diversities of European priorities for research and

measurement in end-of-life care





98

EU-27 member




111 Presentation Dr

Marjolein Gysels

Culture & end-of-life care 24 March 2011 Brussels




98

EU-27 member




112 Presentation Barbara Gomes Public Preferences & Priorities 24 March

2011 Brussels




98

EU-27 member




113 Presentation Professor

Stein Kaasa

Clinical research priorities in end-of-life cancer care





98

EU-27 member




114 Presentation Dr Claudia Bausewein

Best practice and resources for the use of POS and STAS and other tools in end-of-

life care





98

EU-27 member





Ferreira Best practice in symptom measurement 24 March

2011 Brussels




98

EU-27 member




116 Presentation Luc Deliens Best practices in measurement in long-term care facilities in Europe





98

EU-27 member




117 Presentation

The Honourable

Senator Sharon

Carstairs P.C.

North America: Canada’s model of integrated research, legislation, clinical care

& policy





98

EU-27 member




118 Presentation Professor

David Currow

Palliative care in Australasia: Maximising learning from the Australian model





98

EU-27 member




119 Presentation Irene Higginson Maximising opportunities within Europe 24 March

2011 Brussels




98

EU-27 member




120 Symposium report

Saffina Rana (Eur

J of Cancer)

How to improve end-of-life care in Europe: EJC news Volume 47, Issue 5, May 2011

28 April 2011

All oncology nurses within

Europe

Tens of

thousands

Europe

121 Web PRISMA http://www.endoflifecareforadults.nhs.uk/research-and-evaluation/findresearch 2011 UK All Ongoi

ng All

122 Presentation Claudia Verständnis von „end of life care“ in England und Deutschland: qualitative Pilot-

10 September

Dresden Palliative care

150 Germany

Bausewein Studie 2011 clinicians and researchers

123 Poster Claudia Bausewein

Erfahrungen mit Messinstrumenten in der Palliativbetreuung – Ergebnisse einer

internationalen online Umfrage

10 September

2011 Dresden

Palliative care

clinicians and researchers

150 Germany


Public Preferences for Place of Death: Results from a European Cross-national

Survey

18-21 May 2011 Lisbon

Palliative care


service-users

30 International (EAPC 12th Congress)


Physicians Assisted Suicide, Euthanasia and Palliative Sedation: Attitudes and

Incidence in Germany


Palliative care


service-users


126 Presentation Irene J Higginson

PRISMA: Results from a Co-ordinating Action to Improve Outcomes in Palliative

and End of Life Care across Europe.


Palliative care


service-users



PRISMA, a Pan-European EC Co-ordinating Action: Reflecting the Positive

Diversitites of European Priorities for Research and Measurement in End-of-life

Care


Palliative care


service-users


128 Presentation Claudia Bausewein PRISMA 18-21 May

2011 Lisbon

Palliative care


service-users


129 Presentation Arantza Menaca

Culture, Country and End-of-Life Care. Similarities and Differences between Italy,

Spain and Portugal


Palliative care


service-users


2.2 Section B

2.2.1 B1: List of applications for patents, trademarks, registered designs, etc.

TEMPLATE B1: LIST OF APPLICATIONS FOR PATENTS, TRADEMARKS, REGISTERED DESIGNS, ETC.

Type of IP Rights3:

Confidential

Click on YES/NO

Foreseen embargo date

dd/mm/yyyy

Application reference(s)

(e.g. EP123456)

Subject or title of application

Applicant (s) (as on the application)

N/A

3 A drop down list allows choosing the type of IP rights: Patents, Trademarks, Registered designs, Utility models, Others.

2.2.2 B2: Exploitable foreground

Type of Exploitable Foreground4

Description

of exploitabl

e foregroun

d

Confidential

Click on YES/NO

Foreseen

embargo date

dd/mm/yyyy

Exploitable product(s) or measure(s)

Sector(s) of application5

Timetable, commercial or any other use

Patents or other IPR exploitation (licences) Owner & Other

Beneficiary(s) involved

N/A

19 A drop down list allows choosing the type of foreground: General advancement of knowledge, Commercial exploitation of R&D results, Exploitation of R&D results via standards, exploitation of results through EU policies, exploitation of results through (social) innovation. 5 A drop down list allows choosing the type sector (NACE nomenclature) : http://ec.europa.eu/competition/mergers/cases/index/nace_all.html

http://ec.europa.eu/competition/mergers/cases/index/nace_all.html

3 Report on societal implications

A General Information (completed automatically when Grant Agreement number is entered.

Grant Agreement Number:

Title of Project:

Name and Title of Coordinator:

B Ethics

1. Did your project undergo an Ethics Review (and/or Screening)?

• If Yes: have you described the progress of compliance with the relevant Ethics Review/Screening Requirements in the frame of the periodic/final project reports?

Special Reminder: the progress of compliance with the Ethics Review/Screening Requirements should be described in the Period/Final Project Reports under the Section 3.2.2 'Work Progress and Achievements'

Yes

2. Please indicate whether your project involved any of the following issues (tick box) :

YES/ NO

RESEARCH ON HUMANS

• Did the project involve children? No

• Did the project involve patients? No

• Did the project involve persons not able to give consent? No

• Did the project involve adult healthy volunteers? No

• Did the project involve Human genetic material? No

• Did the project involve Human biological samples? No

• Did the project involve Human data collection? No

RESEARCH ON HUMAN EMBRYO/FOETUS

• Did the project involve Human Embryos? No

• Did the project involve Human Foetal Tissue / Cells? No

• Did the project involve Human Embryonic Stem Cells (hESCs)? No

• Did the project on human Embryonic Stem Cells involve cells in culture? No

• Did the project on human Embryonic Stem Cells involve the derivation of cells from Embryos?

No

PRIVACY

• Did the project involve processing of genetic information or personal data (eg. health, sexual lifestyle, ethnicity, political opinion, religious or philosophical conviction)?

Yes

• Did the project involve tracking the location or observation of people? No

RESEARCH ON ANIMALS

• Did the project involve research on animals? No

• Were those animals transgenic small laboratory animals? No

• Were those animals transgenic farm animals? No

• Were those animals cloned farm animals? No

• Were those animals non-human primates? No

RESEARCH INVOLVING DEVELOPING COUNTRIES

• Did the project involve the use of local resources (genetic, animal, plant etc)? No

• Was the project of benefit to local community (capacity building, access to healthcare, education etc)?

Yes

DUAL USE

• Research having direct military use No

• Research having the potential for terrorist abuse No

C Workforce Statistics

3. Workforce statistics for the project: Please indicate in the table below the number of people who worked on the project (on a headcount basis).

Type of Position Number of Women Number of Men

Scientific Coordinator 1 0

Work package leaders 4 5

Experienced researchers (i.e. PhD holders) 13 8

PhD Students 5 0

Other 13 4

4. How many additional researchers (in companies and universities) were recruited specifically for this project?

8

Of which, indicate the number of men: 1

D Gender Aspects

5. Did you carry out specific Gender Equality Actions under the project?

No

6. Which of the following actions did you carry out and how effective were they?

Not at all effective

Very effective

Design and implement an equal opportunity policy

Set targets to achieve a gender balance in the workforce

Organise conferences and workshops on gender

Actions to improve work-life balance

Other:

7. Was there a gender dimension associated with the research content – i.e. wherever people were the focus of the research as, for example, consumers, users, patients or in trials, was the issue of gender considered and addressed?

We have analysed the data by gender in our pan-European survey on preferences and priorities for end-of-life care

E Synergies with Science Education

8. Did your project involve working with students and/or school pupils (e.g. open days, participation in science festivals and events, prizes/competitions or joint projects)?

No

9. Did the project generate any science education material (e.g. kits, websites, explanatory booklets, DVDs)?

Yes- please specify

F Interdisciplinarity

10. Which disciplines (see list below) are involved in your project?

Main discipline6: Medical Sciences

Associated discipline6: Social Sciences

Associated discipline6:

G Engaging with Civil society and policy makers

11a Did your project engage with societal actors beyond the research community? (if 'No', go to Question 14)

Yes

11b If yes, did you engage with citizens (citizens' panels / juries) or organised civil society (NGOs, patients' groups etc.)?

Yes, in determining what research should be performed

Yes, in communicating /disseminating / using the results of the project

11c In doing so, did your project involve actors whose role is mainly to organise the dialogue with citizens and organised civil society (e.g. professional mediator; communication company, science museums)?

No

12. Did you engage with government / public bodies or policy makers (including international organisations)

Yes, in framing the research agenda

Yes, in implementing the research agenda

Yes, in communicating /disseminating / using the results of the project

6 Insert number from list below (Frascati Manual).

An outcome measurement guidance booklet was developed and e-learning materials are now being developed in relation to this material

13a Will the project generate outputs (expertise or scientific advice) which could be used by policy makers?

Yes – as a primary objective (please indicate areas below- multiple answers possible)

Yes – as a secondary objective (please indicate areas below - multiple answer possible)

No

13b If Yes, in which fields?

Culture

Education, Training, Youth

Employment and Social Affairs

Human rights

Public Health

Regional Policy

Research and Innovation

http://europa.eu/pol/cult/index_en.htm

http://europa.eu/pol/educ/index_en.htm

http://europa.eu/pol/socio/index_en.htm

http://europa.eu/pol/rights/index_en.htm

http://europa.eu/pol/health/index_en.htm

http://europa.eu/pol/reg/index_en.htm

http://europa.eu/pol/rd/index_en.htm

13c If Yes, at which level?

Local / regional levels

National level

European level

International level

H Use and dissemination

14. How many Articles were published/accepted for publication in peer-reviewed journals?

15

To how many of these is open access7 provided? 4

How many of these are published in open access journals? 4

How many of these are published in open repositories? 0

To how many of these is open access not provided? 9

Please check all applicable reasons for not providing open access:

publisher's licensing agreement would not permit publishing in a repository

no suitable open access journal available

no funds available to publish in an open access journal

15. How many new patent applications (‘priority filings’) have been made? ("Technologically unique": multiple applications for the same invention in different jurisdictions should be counted as just one application of grant).

0

7 Open Access is defined as free of charge access for anyone via Internet.

16. Indicate how many of the following Intellectual Property Rights were applied for (give number in each box).

Trademark 0

Registered design 0

Other 0

17. How many spin-off companies were created / are planned as a direct result of the project?

0

Indicate the approximate number of additional jobs in these companies: 0

18. Please indicate whether your project has a potential impact on employment, in comparison with the situation before your project:

None of the above / not relevant to the project

19. For your project partnership please estimate the employment effect resulting directly from your participation in Full Time Equivalent (FTE = one person working fulltime for a year) jobs:

Difficult to estimate / not possible to quantify

Indicate figure:

I Media and Communication to the general public

20. As part of the project, were any of the beneficiaries professionals in communication or media relations?

Yes

21. As part of the project, have any beneficiaries received professional media / communication training / advice to improve communication with the general public?

No

22 Which of the following have been used to communicate information about your project to the general public, or have resulted from your project?

Press Release

Media briefing

Brochures /posters / flyers

Coverage in specialist press

Targeting general public (festival, conference, exhibition, science café)

Coverage in specialist press

Coverage in general (non-specialist) press

Coverage in national press

Website for the general public / internet

Website for the general public / internet

23 In which languages are the information products for the general public produced?

Language of the coordinator

Other language(s)

English German Portugese Italian Dutch Spanish

Question F-10: Classification of Scientific Disciplines according to the Frascati Manual 2002 (Proposed Standard Practice for Surveys on Research and Experimental Development, OECD 2002):

FIELDS OF SCIENCE AND TECHNOLOGY

1. NATURAL SCIENCES

1.1 Mathematics and computer sciences [mathematics and other allied fields: computer sciences and other allied subjects (software development only; hardware development should be classified in the engineering fields)]

1.2 Physical sciences (astronomy and space sciences, physics and other allied subjects)

1.3 Chemical sciences (chemistry, other allied subjects)

1.4 Earth and related environmental sciences (geology, geophysics, mineralogy, physical geography and other geosciences, meteorology and other atmospheric sciences including climatic research, oceanography, vulcanology, palaeoecology, other allied sciences)

1.5 Biological sciences (biology, botany, bacteriology, microbiology, zoology, entomology, genetics, biochemistry, biophysics, other allied sciences, excluding clinical and veterinary sciences)

2 ENGINEERING AND TECHNOLOGY

2.1 Civil engineering (architecture engineering, building science and engineering, construction engineering, municipal and structural engineering and other allied subjects)

2.2 Electrical engineering, electronics [electrical engineering, electronics, communication engineering and systems, computer engineering (hardware only) and other allied subjects]

2.3. Other engineering sciences (such as chemical, aeronautical and space, mechanical, metallurgical and materials engineering, and their specialised subdivisions; forest products; applied sciences such as geodesy, industrial chemistry, etc.; the science and technology of food production; specialised technologies of interdisciplinary fields, e.g. systems analysis, metallurgy, mining, textile technology and other applied subjects)

3. MEDICAL SCIENCES

3.1 Basic medicine (anatomy, cytology, physiology, genetics, pharmacy, pharmacology, toxicology, immunology and immunohaematology, clinical chemistry, clinical microbiology, pathology)

3.2 Clinical medicine (anaesthesiology, paediatrics, obstetrics and gynaecology, internal medicine, surgery, dentistry, neurology, psychiatry, radiology, therapeutics, otorhinolaryngology, ophthalmology)

3.3 Health sciences (public health services, social medicine, hygiene, nursing, epidemiology)

4. AGRICULTURAL SCIENCES

4.1 Agriculture, forestry, fisheries and allied sciences (agronomy, animal husbandry, fisheries, forestry, horticulture, other allied subjects)

4.2 Veterinary medicine

5. SOCIAL SCIENCES

5.1 Psychology

5.2 Economics

5.3 Educational sciences (education and training and other allied subjects)

5.4 Other social sciences [anthropology (social and cultural) and ethnology, demography, geography (human, economic and social), town and country planning, management, law, linguistics, political sciences, sociology, organisation and methods, miscellaneous social sciences and interdisciplinary , methodological and historical S1T activities relating to subjects in this group. Physical anthropology, physical geography and psychophysiology should normally be classified with the natural sciences].

6. HUMANITIES

6.1 History (history, prehistory and history, together with auxiliary historical disciplines such as archaeology, numismatics, palaeography, genealogy, etc.)

6.2 Languages and literature (ancient and modern)

6.3 Other humanities [philosophy (including the history of science and technology) arts, history of art, art criticism, painting, sculpture, musicology, dramatic art excluding artistic "research" of any kind, religion, theology, other fields and subjects pertaining to the humanities, methodological, historical and other S1T activities relating to the subjects in this group]

Reference List

1. World Health Organisation. The solid facts: palliative care. Copenhagen, Denmark: World Health Organisation; 2004.1-32 p.

2. Ferlay J, Autier P, Boniol M, Heanue M, Colombet M, Boyle P. Estimates of the cancer incidence and mortality in Europe in 2006. Ann.Oncol. 2007;18(3):581-92.

3. Economist Intelligence Unit. The quality of death. Ranking end-of-life care across the world. 2010. 1-38 p.

4. National Institutes of Health. National Institutes of Health State-of-the-Science Conference Statement on Improving End-of-Life Care. USA: NIH Consensus Development Program; 2004.

5. Evans N, Menaca A, Andrew E, Koffman K, Harding R, Higginson IJ, Pool R, Gysels M, on behalf of PRISMA. Systematic review of the primary research on minority ethnic groups and end-of-life care from the UK. Journal of Pain and Symptom Management 2011.

6. Evans N, Meñaca A, Andrew EVW, Koffman J, Harding R, Higginson IJ, Pool R, Gysels M, on behalf of PRISMA. Appraisal of literature reviews on end-of-life care for minority ethnic groups in the UK and a critical comparison with policy recommendations from the UK end-of-life care strategy. BMC Health Services Research 2011.

7. Daveson BA, Bechinger-English D, Bausewein C, Simon ST, Harding R, Higginson IJ, Gomes B, on behalf of PRISMA. Constructing understandings of end-of-life care in Europe: a qualitative study involving cognitive interviewing with implications for cross-national surveys. Journal of Palliative Medicine 2011;14(3).

8. Sigurdardottir KR, Faksvag Haugen D, va der Rijt CCD, Sjogren P, Harding R, Higginson IJ, Kaasa S, on behalf of PRISMA. Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe. Report from a workshop. European Journal of Cancer 2010.

9. Sigurdardottir KR, Faksvag Haugen D, Bausewein C, Higginson IJ, Harding R, Rosland JH, Kaasa S, on behalf of project PRISMA. A pan-European survey of research in end-of-life cancer care. Support Care Cancer 2011.

10. Bausewein C, Steffen S, Benalia H, Downing J, Mwangi-Powell FN, Daveson B, Harding R, Higginson IJ. Applying Patient Reported Outcome Measures (PROMs) in palliative care – User's cry for help. Health and Quality of Life Outcomes 2011.

11. Daveson BA, Simon ST, Benalia H, Downing J, Higginson IJ, Harding R, Bausewein C, on behalf of PRISMA. Are we heading in the same direction? European and African doctors' and nurses' views and experiences regarding outcome measurement in palliative care. Palliative Medicine 2011.

12. Albers G. What is the methodological rigour of palliative care research in long-term care

facilities in Europe? A systematic review. Palliative Medicine 2011.

Documents

PROJECT FINAL REPORT - kcl.ac.uk › cicelysaunders › attachments › ... · PROJECT FINAL REPORT Grant Agreement number: 201655 Project acronym : PRISMA Project title: Reflecting