Reflecting the Positive diveRsities of European prIorities for reSearch & Measurement in end-of-life cAre

PRISMA Symposium 2011

Research, practice, science &innovation in end-of-life care

Held under the Patronage of Her Royal Highness Princess Mathilde of Belgium, andunder the Auspices of the European Association for Palliative Care, EAPC Onlus

European populations are ageing withincreasing numbers of people livinglonger. Chronic conditions are leadingcauses of mortality across the world,and by 2020 their contribution isexpected to rise to 73% of all deathsand 60% of the global burden ofdisease. PRISMA was designed toharmonise end-of-life care researchand best practice across Europethrough targeting measurement,involving positive cultural diversity,and being influenced by Europeancitizens’ priorities and preferences.PRISMA is delivering timely and high-quality scientific evidence to informend-of-life policy at national andEuropean levels, including Africa.ThePRISMA Symposium 2011 offers aforum for policy makers, researchfunders and experts from the fields ofpalliative and end-of-life care to sharethe findings and outputs from PRISMAand to drive forward better care forEuropean and African citizens at theend of life.

PRISMA was a major three-yearcoordinating action project funded bythe European Union under the SeventhFramework Programme (FP7).ThePRISMA consortium comprises nineEuropean and African countries, andeleven partner organisations thatspecialise in end-of-life care.

Since its inception in 2008,PRISMA has delivered an integratedprogramme coordinating researchpriorities and practice regarding end-of-life care across Europe and Africathrough sharing examples of goodpractice; coordinating research;delivering research outputs; andidentifying key priorities for end-of-lifecare.The core activity of PRISMA is togenerate new knowledge to ensurethat policy, funding and care activitiesare influenced by the clinical andpublic priorities of Europe. PRISMAhas established bodies of knowledgeand networks of experts to servethose who are responsible fordirecting end-of-life care.

We are delighted to welcome you tothe PRISMA Symposium 2011, heldunder the patronage of Her RoyalHighness Princess Mathilde of Belgium,and under the auspices of theEuropean Association for PalliativeCare, EAPC Onlus.

The symposium aims to shape end-of-life care policy across Europe andenable foresight to inform coordinatedaction regarding the direction and fundingof end-of-life research. It also aims toaddress the health objectives of Europeancitizens through understanding prioritiesof European service users and providers;improving measurement; establishingEuropean research collaborations thatinvolve world-leading individuals andcentres focussed on end-of-life care.www.prismafp7.eu

324 PRISMA Symposium 2011

Welcome

Professor Irene J HigginsonPRISMA Scientific Director

Dr Richard HardingPRISMA Project Co-ordinator

Dr Barbara Daveson &Dr Noël Derycke PRISMA Symposium Leads

CENTRO DE ESTUDOS E INVESTIGAÇAOEM SAUDE DA UNIVERSIDADE DE COIMBRA

Under the Auspices of the European Associationfor Palliative Care, EAPC Onlus

www.eapcnet.eu

Registration From 08.30,Thursday 24th March 2011

09.00-10.25FORUM ONE

What is the end-of-life careexperience in Europe? Priorities,barriers & opportunities for end-of-life care research in Europe

Chair & welcome:Professor Irene J HigginsonPRISMA Scientific Director

09.00-09.25Opening address:Meeting the challenge of end-of-life care in Europe: Research,practice, science & innovationDr Maria-José Vidal-RagoutActing Head of Unit, Medical ResearchUnit, Directorate of Health,Directorate General Research andInnovation, European Commission

09.25-09.45Europe in action: End-of-life care inthe midst of an ageing populationMr Tom HudsonPresident, European Cancer PatientCoalition

09.45-10.05The European model:Recommendations & strategies forend-of-life careDr Agis Tsouros Head, Centre for Urban Health,WHO EURO Region Office

10.05-10.15An overview of PRISMA reflectingpublic priorities & harmonisingresearch & practice across EuropeDr Richard Harding PRISMA Principal Investigator, King'sCollege London, Cicely Saunders Institute

10.15-10.25Opening of representatives’ stands& launch of measurementresourcesProfessor Irene J HigginsonPRISMA Scientific Director, King’s CollegeLondon, Cicely Saunders Institute

List of stands4 European Cancer Patient Coalition 4 European Palliative Care Research

Centre at the Norwegian Universityof Science and Technology,Trondheim (NTNU) & the EuropeanPalliative Care ResearchCollaborative (EPCRC)

4 EMGO+ Institute for Health andCare Research, Center of Expertisein Palliative Care (CEPC) and EURO IMPACT

4 OPCARE94 PRISMA4 The Palliative care Outcome Scale

(POS)4 The Cicely Saunders Institute &

King’s College London, a WHOCollaborating Centre for PalliativeCare and Older People

10.25-10.45Refreshments

PRISMA Symposium 2011 334

Programme

10.45-13.00FORUM TWO

Best science for better end-of-lifepolicy, research & care forEuropean citizens: Measurement &palliative care research, culture &priorities

Chair:Professor Sheila PayneIncoming Chair of the EuropeanAssociation For Palliative Care

10.45-12.15PRISMA results: Researchpriorities, culture & measurement

Presentations & discussionDr Marjolein GyselsPRISMA lead on culture, SpainBarbara GomesPRISMA lead on public priorities &preferences, UKProfessor Stein KaasaPRISMA lead on clinical research priorities,NorwayDr Claudia BauseweinPRISMA lead on measurement tools,GermanyProfessor Pedro Lopes FerreiraPRISMA lead on measurement resources,PortugalProfessor Luc DeliensPRISMA lead on measurement in long-termcare facilities,The Netherlands

12.15-13.00Roundtable discussionThe Honourable Senator SharonCarstairs P.C.The Senate of Canada (Manitoba)Professor David CurrowDiscipline of Palliative & SupportiveServices, Flinders University, Chief CancerOfficer & CEO, Cancer Institute NSW,AustraliaDr Richard HardingPRISMA Principal Investigator, King’sCollege London, Cicely Saunders InstituteProfessor Irene J HigginsonPRISMA Scientific Director, King’s CollegeLondon, Cicely Saunders InstituteMr Tom HudsonPresident, European Cancer PatientCoalitionDr Kathleen FoleyAttending Neurologist in the Pain &Palliative Care Service, Memorial Sloan-Kettering Cancer Center,WHO ExpertConsultantProfessor Dr Bart Van den EyndenGeneral Practitioner, Consultant PalliativeCare, University of AntwerpDr Maria-José Vidal-RagoutActing Head of Unit, Medical ResearchUnit, Directorate of Health,Directorate General Research andInnovation, European Commission

13.00-14.00Lunch

14.00-17.00FORUM THREE

Foreseeing & responding to apublic health priority: Determiningfuture directions & priorities forend-of-life research in Europe

Chair:Dr Richard HardingPRISMA Principal Investigator,King’s College London

14.00-14.30North America: Canada’s model ofintegrated research, legislation,clinical care & policyThe Honourable Senator SharonCarstairs P.C.The Senate of Canada (Manitoba)

14.30-15.00Palliative care in Australasia:Maximising learning from theAustralian modelProfessor David CurrowDiscipline of Palliative & SupportiveServices, Flinders University, Chief CancerOfficer & CEO, Cancer Institute NSW,Australia

15.00-15.30Discussion: Reflections on national& European policy & research Discussion involving all delegates

15.30-16.00Closing remarks:Maximising opportunities withinEuropeProfessor Irene J HigginsonPRISMA Scientific Director,King’s College London

16.00-17.00Reception

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PRISMAPRISMA was a major Europeancommission funded project focused onend-of-life care to help Europerespond to the need for quality end-of-life care through coordinatingpractice and research efforts. PRISMAcomprised eight work packages orwork streams (WPs):4 WP1: Culture (Lead: Dr Marjolein

Gysels)4 WP2: Public priorities and

preferences (Lead: Barbara Gomes) 4 WP3: Clinical research priorities

(Lead: Professor Stein Kaasa) 4 WP4: Measurement tools, specifically

the Palliative care Outcome Scale(POS) and the Support TeamAssessment Schedule (STAS) (Lead: Dr Claudia Bausewein)

4 WP5: Symptom measurement andthe Palliative care Outcome ScaleSymptom Card (POS-S) (Lead:Professor Pedro Lopes Ferreira)

4 WP6: Long-term care facilities andmeasurement (Lead: Professor Luc Deliens)

4 WP7: Management, integration anddissemination (Lead: Dr RichardHarding)

4 WP8: PRISMA Symposium 2011(Leads: Dr Barbara Daveson and DrNoël Derycke).

PRISMA was funded as a collaborativeaction project, which meant that theproject aimed to bring togetherclinicians, researchers, academics, policymakers, service-users and others toimprove end-of-life care in Europe.Tosupport this aim, a number of related,high-quality research projects wereconducted by PRISMA.

Since its inception in 2008, PRISMAdrew together participants from over36 countries across Europe, andincluding an African partner. PRISMA'slead partner (King’s College London, aWHO collaborating centre for palliative

care and older people) was alsoinvolved in palliative care capacity-building events hosted by the WHOEuropean regional office, involvingdiscussions with representatives fromAlbania, Slovakia, Slovenia, Latvia,Montenegro and Turkey. Service-userconsultation formed part of PRISMAand links were established with theEuropean Cancer Patient Coalition.PRISMA’s African partner allowed forcomparisons outside of Europe, andwork with national initiatives fromAustralia aided PRISMA’s innovations inoutcome measurement. PRISMA’sEuropean Union-level events havehelped bridge the gap between practice,policy and research, culminating in thelaunching of our findings and resourcesat the PRISMA symposium 2011.

Contract number:Health-F2-2008-201655

PRISMA Symposium 2011 354

Executive summary

Figure 1: PRISMA’s eight integrated WPs

Public priorities and preferences for end-of-life care (WP2)

Optimising responsiveness

in research

Optimising cultural sensitivity

in research

Optimising clinical relevance

in research

Reinforcing measurement in

symptoms

Reinforcing measurement in

vulnerable groups of people

Best practice in symptom

measurement (WP5)

Review and recommendations for best practiceand resources for

the use of end-of-life care

quality indicators:measurement

tools currently in use, focusing on

POS / STAS(WP4)

Cultural difference in

end-of-life care (WP1)

Clinical research priorities in

end-of-life care (WP3)

Best practice in measurement in long-term care

facilities (WP6)

Management (WP7)

Final symposium (WP8)

PRISMA has produced a set of originaland substantive findings to improveoutcome measurement in palliative andend-of-life care across Europe for allEuropean citizens. PRISMA’s findingsrelate to six key areas: culture, publicpriorities and preferences, clinicalresearch priorities, measurement toolsespecially in relation to the POS andSTAS, symptom measurement and thePOS-S, and long-term care facilitiesand measurement.

Culture (WP1) In order to develop collaboration onculture and end-of-life care acrossdifferent countries in Europe, this workpackage explored and mapped culturaldifferences in definitions and prioritiesfor end-of-life care in and across eightEuropean countries (the UK, Germany,Norway, Belgium, the Netherlands,Spain, Italy and Portugal).The evidenceon culture and end-of-life care was alsoexamined through a literature reviewfor eight European countries. Effortsfor future directions in achievingculturally appropriate quality standardsfor end-of-life care were coordinated.An expert network of the mostprominent experts on culture and end-of-life care was constructed toprogress this work.This network wasrealised through international expertworkshops and meetings. In addition, anaccompanying survey was conducted toclarify 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.

In total, 168 responses to PRISMA’ssurvey were received, demonstratinggreat interest in the field. However,there was scope for expertise in workon cultural issues in end-of-life care tobe developed further. In addition, therewas little consensus regardingterminology and definitions about end-of-life practice across the countries,

reflecting a diversity of ideas andexperiences within end-of-life care.

An international workshop, held as atwo-day event (Vic, Catalonia) drewtogether 30 experts who identified thefollowing priorities for cross-culturalresearch: (1) clarifying ideas of cultureand cultural competence; (2) definingend-of-life in a context of social andcultural diversity, experiences of receivingand giving end-of-life care, and carepractices in different settings; and (3)developing appropriate methods andoutcome measurement that addressdiversity. Presentations by internationalexperts and a debate regarding thecurrent issues in culture and end-of-lifecare with an audience of 250 nationaland international delegates took place onday two of the workshop.

The literature review involved areview of 868 sources. Country reportsfor the eight countries were producedbased on the evidence on culture andend-of-life care. In summary, in the UKcontext,‘culture’, or ‘cultural diversity’has come to be interpreted in terms ofminority ethnic groups, while in the restof Europe, interest in cultural issues wasrather directed towards each countries’‘own’ cultural traditions and practices.These new findings establish a strong androbust platform for future research inthe area of culture and end-of-life care.

Public priorities and preferences(WP2) This work package examined existingevidence on public preferences andpriorities for end of life cancer care;designed, commissioned anddisseminated a cross-national opinionpoll of public preferences andpriorities for end of life care in sevenEuropean countries; and promotedcross-national reflection amongstpalliative and end-of-life careresearchers to ensure end-of-lifecancer care research and measurement

addressed diversities as well ascommonalities in public views acrossEurope. In addition, a street survey inNairobi (Kenya) was conducted with201 people to determine Africanpreferences and priorities for end-of-life care. New knowledge regardingpriorities and preferences of Europeanand African citizens for end-of-lifecancer care has resulted.

PRISMA’s survey was administeredover the telephone to 9,344 people(66% women) aged 16 or over (meanage 51) in seven European countries:Germany, England, the Netherlands,Belgium (Flanders), Portugal, Spain andItaly. The survey allowed for aninvestigation of people’s experiences ofillness, death and dying and facilitatingconditions (such as age, gender andreligion) and how these affectedpreferences and priorities. During thesurvey, preferences and priorities ofmembers of the general public wereelicited as if they were confrontedwith a serious disease, such as cancerfor example, and had less than oneyear to live.

An overwhelming majoritythought that improving the quality oflife for the time they had left wouldbe more important than extendinglife, although many identified boththese goals as equally important.Opinions varied across countries asto whether keeping a positive attitude(Spain, Italy, the Netherlands andGermany), having pain and discomfortrelieved (England, Portugal and againSpain) or making sure relatives andfriends were not distressed (Belgium)were the most important priorities.People for whom keeping a positiveattitude was the top priority weremore likely to want to die at home.Having practical matters resolved wasnot seen as the most importantpriority in any of the countries.

A comprehensive and detailed set

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PRISMA’s findings

of these findings will be published, alongwith findings from Africa. Informationregarding the publications will beavailable via www.PRISMAfp7.eu.Regional reports within each of thecountries will also be available viaPRISMA’s website. Local reports forcommissioners and the public will beprovided to help plan and improvefuture care.

This is the first survey todemonstrate key commonalities butalso cross-national variation inEuropean citizens' preferences andpriorities for end-of-life care.This is aseminal contribution to advancingpalliative and end-of-life care in Europeand Africa.

Clinical research priorities (WP3)The clinical research priorities workpackage studied and compared howresearch involving end-of-life cancercare has been conducted acrossEurope, identifying and developing aresearch agenda based upon clinicalpriorities for end-of-life care.This wasachieved through a survey and aninternational workshop.The surveyfindings allowed for mapping and adescription of how research in end-of-life care in Europe has been conducted,and the identification of priorities andbarriers. During the internationalworkshop an exploration of the resultsand issues revealed by the survey wascompleted, in order to (1) identifyclinical priorities for end-of-life cancercare research within Europe, and topropose a future research agenda, (2)identify barriers to end-of-life careresearch, along with possibilities andsolutions to overcome barriers andimprove the research.

Invitations for participation in thesurvey were distributed to 36 Europeancountries; 127 responses were received.Eighty-five percent of the scientific teamleaders were physicians.The mostfrequently reported active researchareas were pain, assessment andmeasurement tools, and last days of lifeand quality of death.The following areaswere ranked as the most importantresearch priorities: last days of life andquality of death, pain, fatigue (tiredness)and cachexia (general physical wastingand malnutrition), and assessment andmeasurement tools.The mostimportant research barriers were lackof funding, lack of time, and insufficientknowledge and expertise. Mostresearch groups in end-of-life care weresmall. In contrast, the few large groups

identified (14%) had almost half of thereported publications, and more thanhalf of the current PhD students.

Thirty participants (representing 25European countries) selected fromthose who responded to the surveyattended the international workshop;most were physicians. Consensus wasreached on the following priorities forresearch in end-of-life cancer care inEurope: distressing symptoms; issuesrelated to care of the dying; and policyand organisation of palliative careservices.The experts emphasised thathow research is carried out isimportant. A need for common toolsfor assessment and measurement ofsymptoms and outcomes was alsohighlighted, along with a need for acommon classification system to beable to compare results across studies.Symptom research should focus onpain, fatigue, cachexia, delirium(confusion) and breathlessness. Lack ofconsensus on common definitions,outcomes, and methodology wasidentified as a substantial researchbarrier. Other barriers were related tocapacity and funding, environment andculture, and knowledge transfer anddissemination. It was agreed that theseareas were interrelated and should notbe addressed in isolation.

Measurement tools, especially thePalliative care Outcome Scale(POS) and the Support TeamAssessment Schedule (STAS)(WP4) The objectives of the measurement workpackage were to: identify and describethe ways in which measurement toolshave been used in end-of-life care inEuropean countries; coordinate exchangeof experiences in those who have usedthe identified tools in end-of-life care; anddevelop resources and support for thosewho use POS and STAS in end-of-lifecancer care.This was achieved through aweb-based survey sent to approximately2,000 European citizens after beingreviewed by experts and piloted in sevenEuropean countries.An internationalworkshop to build consensus regardingthe future use and development ofoutcome measurement in Europe andAfrica was also conducted.

The first page of PRISMA’s onlinesurvey (which gave more specificinformation about the survey) received1,592 unique site visitors (1,291 inEurope and 301 in Africa).The overallparticipation rate was 42% (663/1,592),and the overall completion rate 59%

(392/663).The majority of respondentswere female (63.4%), and the mean agewas 46 years (SD 9). Of thoserespondents from Europe, 68.1% hadexperiences with outcome measures inpalliative care.This was 73.3% forAfrican respondents.

Non-users reported timeconstraints, burden, lack of training andguidance as main reasons for not usingoutcome measures. In clinical care /audit, assessment of patients’ situation,monitoring changes and evaluation ofservices were the main reasons to useoutcome measurement. Choice ofoutcome measurement for researchwas influenced by validity of theinstrument in palliative care andcomparability with internationalliterature. POS was one of the mostfrequently used tools in both Europeand Africa. Overall findings indicatedthat professionals need more supportfor the use and implementation ofoutcome measures in clinical practiceand research through training andguidance.

Outcome measurement inpalliative care and the work package’ssurvey findings were then discussed inan international workshop (Berlin,Germany).Thirty-two professionalsfrom 15 countries across Europe,Africa and North America and eightdifferent professional backgroundswere involved in the workshop.Barriers for the use of outcomemeasures were identified, includingpatients' frail health status, the lack oftime in clinical care and the lack ofstaff training as well as clinicians’reluctance to use outcome measuresin palliative care.The translation ofexisting measures into differentlanguages, patients’ cultural diversity,and the role of nurses in tooldevelopment were identified aspriority areas.An internationaltaskforce on outcome measurementhas been established as a result of thiswork to sustain PRISMA’sachievements.

Symptom measurement and thePalliative care Outcome ScaleBooklet and Symptom Card (POS-S) (WP5)A major output of work package fivewas the POS-S (Palliative care OutcomeScale-Symptom) booklet and symptomcard for health professionals andresearchers.The benefit obtained by theuse of POS-S, an instrument designedto measure the symptoms experienced

PRISMA Symposium 2011 374

by cancer patients at the end of theirlives, was achieved through sharing andpooling experiences regardingimplementation of POS-S in Portugal.The value of POS-S as an outcomemeasure in end-of-life care researchwas also determined.The practicalityand impact of POS-S in a cancer settingwith a view to shape best practice wasaddressed, and researchers examinedways of working together with POS-S,especially as POS was already in use inEurope and Africa.

The original version of POS-S wastranslated and culturally adapted intoPortuguese.This process was followedby a cognitive debriefing with 10patients and a feasibility study withanother set of 30 patients receivingpalliative care. Extensive contacts wereestablished with the main palliative carePortuguese institutions (public andprivate) in order to create a nationalnetwork of POS users.

The new version of the POS-Sbooklet and symptom card were thenpresented and refined at an internationalworkshop for symptom measurement(Porto, Portugal). Forty clinicians,researchers and academics (fromGermany, the UK, Portugal and Australia)participated in this workshop, and fourtopics were addressed: (1) theexperience of validation and applicationof the POS-S in hospital-based palliativecare units in Portugal; (2) the value ofPOS-S as an outcome measure in end-of-life care research; (3) the usefulness,practicality and impact of POS-S incancer clinical practice, in terms ofshaping best practice; and (4) explorationof future collaborations betweenresearchers using POS-S.The workshopparticipants discussed, debated andsuggested modifications to the POS-Sbooklet and symptom card. Based onthese conclusions and feedback fromwide consultation, a second version ofthe booklet and card was developed andpublished.This final POS-S booklet andsymptom card were produced initially inEnglish and have been translated intoseveral other languages, including Dutch,

Italian, German and Spanish. Seehttp://www.csi.kcl.ac.uk/pos-s.html forthe English version andhttp://www4.fe.uc.pt/booklet/pt/ for thePortuguese version. A database of POS-S users from across Europe wasestablished as a result of this work.

Long-term care facilities andmeasurement (WP6)The long-term care facilities andmeasurement work package exploredwhat constituted quality care for thosewith cancer at the end of life in long-term care facilities (including in nursinghomes), and built capacity by developinga collaboration that focused on end-of-life cancer care in long-term carefacilities across Europe. Experiences inmeasuring quality in end-of-life nursinghome care using POS and other toolswere examined, and the aim of collatingan inventory of tools was explored.Best practice in measuring quality forresidents with and without capacity wasinvestigated along with the performanceof POS, STAS and other tools.

Several methods were used to buildan expert research network to identifygood practice in measuring palliativecare in long-term care facilities and todevelop a future research agenda. First,knowledgeable European researchersand eligible datasets on palliative carefrom patients residing in long-term carefacilities in Europe were identified,primarily by searching the literature andthrough a web-based survey. PRISMAidentified two different (butoverlapping) groups of researchers fortwo different purposes: one group ofresearchers who had data available onoutcome measures relevant for end-of-life care in long-term care facilities thatwere (possibly) eligible for secondaryanalyses, and another group of(prominent) researchers who wereworking on end-of-life care in long-term care facilities to develop aresearch agenda and to build asustainable collaboration. A workshopwas organised for the first group ofresearchers in order to share

experiences in measurement and toexplore possibilities for comparativesecondary data analyses.A secondworkshop was organised for the othergroup of researchers to develop a long-lasting collaboration and futureresearch agenda.

PRISMA found little research inEurope on patient outcome datacollected from palliative care patientsresiding in long-term care facilities.However, a great number ofresearchers from different Europeancountries have been identified as peopleworking on and interested in palliativecare research in long-term caresettings.The European studies onpalliative care outcomes collected byuse of measurement instruments withresidents of long-term care facilitiesgreatly differed with regard to studydesign, study population and outcomevariables. Consequently, it was notpossible to perform comparativesecondary data analyses with patientoutcome data from different Europeancountries, or to identify best practice inmeasurement within long-term caresettings.These findings highlighted theimportance of developing a futureresearch agenda and to facilitate thedevelopment of a research network.

A number of priority topics forfuture research have been establishedbased on the viewpoint of researchersfrom PRISMA’s network, including:adequate research methods and well-developed and tested measurementinstrument(s) (such as POS); advancecare planning; communication; andorganisational aspects of palliative carein long-term care facilities.

Integration and triangulation ofPRISMA’s international,multidisciplinary andinterprofessional data offersimportant new evidence fromwhich to develop and enhance thepolicy environment and to improvethe end-of-life care for Europeanand African citizens.

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For patients and families in health care,extensive assessments are often madeto help diagnose problems, todetermine needs and monitor responseto treatments. In cancer treatments,this often involves extensive computertechnology, scanning, monitoring bloods,monitoring tumour markers, x-rays orother scans and monitoring bloodresults. However, these types of testsmiss the important effects of the illnesson the person and their family, thesymptoms, the psychological, social andspiritual needs, and how these areresponding to care and treatment. Toprovide truly holistic care, theseassessments are needed.

The Palliative care Outcome Scale(POS) is a well-established measuredeveloped over 10 years ago to assessand monitor outcomes for patients withadvanced illness. It was initially validatedin a wide range of hospital andcommunity settings, including hospitalinpatient services, inpatient andcommunity hospices, communityhospitals and homecare. It has beenused by specialist palliative care servicesand by general services including renalmedicine, general practice, respiratorymedicine and other settings. It has beentested in different translated formats andin different cultures, and is now availablein numerous European languages as wellas for many other parts of the world.A specific programme focused on thedevelopment of a culturally suitableversion of POS for Africa that is alsoavailable: the APCA African POS. Most

importantly for palliative care, POS isextremely brief.Testing with patientsfound that they could complete POS inaround 5 minutes, which is veryimportant for patients who are quite illor disabled. There are also validatedforms of POS for completion by familymembers (caregivers), and by healthprofessionals.

As a result of PRISMA, POS hasbeen improved and refined. PRISMA’scollaborative efforts have resulted inPOS being seen now as providing asmall core measure but with additionalbolt-on assessments for differentcircumstances, or settings, or healthcare conditions. Some POS items, whichin the past may have resulted in missingdata, have been reviewed and refined toform a comprehensive set of strongeritems.A new format with a POS-S andPOS-S booklet, which is handy to carryin the pocket, is available.

The PRISMA online surveyregarding views and experiences ofoutcome measurement in palliative andend-of-life care (WP4) informed usthat clinicians and researchers don’tneed or want new tools.They needguidance and training in existing tools.PRISMA’s outcome measurementguidance booklet contains guidance inhow to use POS and other measures,what to look for when assessingminimally clinical importantdifferences, and how to collect andinterpret POS data. Importantly, asPRISMA identified that a lack of accessto tools was an obstacle primarily for

nurses working in palliative care,PRISMA’s guidance plus the POS-Sbooklet and symptom card (which alsoincludes guidance) have been madefreely available to all.

POS, we have learned, can be used ina number of ways, just the way a chestx-ray or CT scan can serve a number ofpurposes. An initial POS score can serveto screen for problems, including painand other symptoms, such asbreathlessness, depression, psychosocialneeds including anxiety, informationneeds, practical and quality of health careneeds, and the needs of the family (justthe way a scan or blood test can screenfor cancer). POS can also be used tomonitor progress in response totreatment and has been demonstrated inwork across Europe and Africa to beuseful in assessing the impact of care, inevaluating care, in measuring outcomes,and in identifying continuing unmetneeds that require further treatment.POS is useful in training new staff as ithighlights the important areas ofpalliative care that need to be addressed,and in identifying those patients in mostneed of palliative care, as it identifies thecomplexity of symptoms and problems.

PRISMA’s survey and PRISMA'scollaborations have helped improve POSand POS training materials. Consensusregarding areas for future innovations forthis robust and sensitive tool has beenagreed through PRISMA. POS is apreferred outcome measure for palliativeand end-of-life care clinicians andresearchers within Europe and Africa.

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End-of-life care measurement in Europe

PRISMA & service users

Service user involvement was one ofPRISMA’s key performance indicators.This assisted with maximising feasibility,acceptability and relevance of PRISMA’sproposed future work in end-of-lifecancer care. Each work package led a

patient and family user involvementsession, and in each participatingPRISMA country, the findings andrecommendations were discussed withpatients and families. Discussions withthe European Cancer Patient Coalition

were conducted regarding theoutcomes to ensure PRISMA’srelevance to service users. PRISMAanticipates that service usercollaboration will form an integral partof future work.

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Sustainable collaboration

PRISMA has produced a number offreely available and high-qualityresources, based on expert opinionand science, including: a PRISMAwebsite to aid dissemination, acultural blog regarding end-of-lifecare, an outcome measurementguidance booklet for clinicians andearly stage researchers, and a POS-S booklet and symptom card.

The PRISMA website(www.PRISMAfp7.eu), launched in June2008, has assisted communication acrossthe PRISMA consortium and withexternal stakeholders. Presentations fromPRISMA’s events, PRISMA news, and linksto information websites (for example, theEuropa website) are available on thiswebsite.The framework for the PRISMAwebsite grew throughout the duration ofthe project, and interactivity expanded toenable service-user input.All PRISMApartner organisations are linked toPRISMA’s website, and PRISMA hasfeatured on associated websites [e.g., theEuropean Association for Palliative Careand the official website of the EuropeanUnion].A culture and end-of-life careblog site, launched in 2009(http://cultureeol.wordpress.com)provides a user-friendly space for theexploration of cultural issues in end-of-

life care in Europe.The blog involved fivethreads of discussion separated into fivedifferent pages: (1) front page, (2) about,(3) join the debate-forum, (4) resources,and (5) experience.The link to the blogwas circulated to those who respondedto PRISMA’s culture questionnairerespondents, and has also been used byothers external to this group.

PRISMA’s new guidance forprofessionals in the use of outcomemeasures in palliative and end-of-life careprovides a general introduction onoutcome measurement and the need formeasurement in palliative care.Information on the characteristics thatmake a good measure and how tochoose a measure for clinical care orresearch is included.As implementationof outcome measures was identified asproblematic in palliative care, changemanagement guidance and informationon organisational culture was alsoproduced to enable successfulimplementation of outcomemeasurement in palliative and end-of-lifecare contexts. Information about usefulresources in journal articles, books andwebsites have been included.Thisguidance booklet has been recognised bythe European Association for PalliativeCare and the national charity Help theHospices. In the UK, Help the Hospices

has supported the printing anddistribution of this resource to all UKhospices, ensuring this guidance is usedby clinicians with patients and theirfamilies.This dissemination activity hasprovided a good example ofdissemination on a national level, and willbe used as a dissimenation model inother countries. PRISMA’s outcomemeasurement booklet will be used as aplatform to develop training resourcessuch as courses, workshops or onlineteaching material for the use of outcomemeasures in end-of-life care.The POS / POS-S booklet and symptomcard produced by PRISMA contains anexplanation about the POS-S explainingits use and properties and an easy-to-use card for health professionals withthe POS one side and the POS-S on theother.The POS / POS-S booklet andsymptom card produced by PRISMAhas been very well-received byhealthcare professionals across Europe.To date, this resource has beentranslated into: English, Portuguese,German, Italian, Dutch and Spanish.Translation into other languages is being explored.This development isanother example of how PRISMA hasproduced high-quality resources to aidoutcome measurement in end-of-lifecare across Europe.

New PRISMA resources

In addition to the PRISMA consortium(43 members from across Europe andAfrica), five sustainable collaborationshave been established to furthercoordinate research across Europeand Africa.

PRISMA’s network of prominentexperts regarding culture and end-of-life care was constructed throughinternational expert workshops andmeetings to progress work in this field.In combination with the European

Association for Palliative Care, aninternational taskforce regardingoutcome measurement has beenestablished for professionals who workwith patients with advanced diseases atthe end of their lives. Collaborationsbetween those who contributed to theidentification of clinical researchpriorities have been sustained. Similarly,the long-term care facilitiescontributors have, in combination withthe European Association for Palliative

Care taskforce, continued tocollaborate and develop protocols forfuture research.This collaboration hasoptimised efforts for future researchregarding end-of-life cancer care inlong-term care facilities throughestablishing a network of researchersin long-term care facilities in Europe,based on systematic and rigorousidentification of experts. Databases ofPOS and POS-S collaborators havebeen consolidated.

Work Package 1Culture

4 How are the concepts of culture andcultural competence to beunderstood to enable the delivery ofend-of-life care which is culturallyappropriate?

4 What are the concepts central to orpervading end-of-life care in diversecultural contexts?

4 What are the experiences ofreceiving and giving end-of-life care indiverse cultural contexts?

4 What are the different end-of-lifecare practices in, and interactionsbetween, diverse settings and culturalcontexts?

4 How are the issues relating toculture and end-of-life care bestoperationalised?

4 What are effective and appropriatemodels for sub-Saharan Africa?

Work Package 4Measurement tools, especially thePalliative care Outcome Scale(POS) and the Support TeamAssessment Schedule (STAS)

4 What is the most effective way totrain professionals in outcomemeasurement in palliative care andwhat resources would be mostuseful?

4 Which domains should be coveredby a best standard core set ofoutcome measures and whichoutcome measures should be used incombination for assessment inclinical care and clinical decisionmaking?

4 Which domains should be coveredby a best standard core set ofoutcome measures and whichoutcome measures should be used incombination for assessment inresearch?

4 Outcome measures that have beenidentified above should be refinedwith regard to cultural diversity,translations into other languages andother populations.

Work Package 2Public preferences and priorities

4 Development/evaluation of newEuropean models of care to supportpeople’s preferences to die at home,but models that are responsive tovariations and specific context withineach country.

4 Development/evaluation of publiceducation interventions on pain andcare options at the end of life.

4 Who dies in care homes and how? Amixed methods study usingethnographic methods should beconducted.

4 Effective treatments forbreathlessness must be developed.

4 Mental health promotinginterventions for patients at the endof life.

4 Which interventions meetpreferences for African populations?

Work Package 5Symptom measurement and thePalliative care Outcome ScaleBooklet and Symptom Card (POS-S)

4 What are the effects of using thePOS / POS-S booklet & symptomcard work in daily clinical practice?

4 Looking at different instruments tomonitor the health status/quality oflife of palliative patients, what are therelative advantages and disadvantagesof using one or another measure?Would a mix of measures be betterthan only one?

4 What is the minimum dataset ofindicators to be measured inpalliative care units?

4 How can electronic capture ofpalliative care indicators bypractitioners and patients beimplemented?

Work Package 3Clinical research priorities

4 How can end-of-life care researchgroupings be optimised in skills andresources?

4 What are the optimum tools andmethods for collaborative research?Can consensus be achieved?

4 What are clinical priorities forpopulations at different stages ofdisease progression?

4 How can prevalence data onpatients’ problems be robustlytranslated into intervention studies?

4 What are the non-medical clinicalresearch priorities, and how do thesecompare with the medical priorities?

Work Package 6Long-term care facilities andmeasurement

4 How are advance directives defined,used and implemented in differentcountries?

4 How often and how do differentcountries involve patients withdementia, their proxies and differentcaregivers in advance care planning?

4 What is the content, quality andeffect of communication concerningcritical choices and decisions onresidents, family and staff?

4 What kind of interventions are thereto promote dignity? What kind ofmeasurement instruments areneeded to evaluate the effects of anintervention? How to involvepatients in an intervention study?

4 What is an adequate instrument toevaluate pain/symptom(s) inunconscious patients at the end oflife?

4 Is there an organisational model ofservice delivery for palliative care inlong-term care settings (howcomparable is this with theinternational standardisedclassification(s) of long-term care)?

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Current research priorities

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1 We recognise that palliative and end-of-life care for European citizens iscurrently suboptimal andepidemiological data clearlydemonstrate the need for an increasein policy funding and research focus.

2 In order to provide effective palliativeand end-of-life care for Europe’s ageingpopulation, evidence through high-quality research is urgently required.

3 PRISMA has exemplified the needfor international collaboration andleadership to drive forwardappropriate demonstrably effectivecare at the European regional level.

4 The policy environment must enablethe identification, provision andmeasurement of end-of-life care thatreflects multiple understandings andneeds of a diverse Europeanpopulation. Service usercollaboration is essential for this.

5 Policy must facilitate care at the endof life based on evidence of publicpreference and priority. PRISMAfindings demonstrate a preference fordeath at home, and goodcommunication, management ofmultidimensional problems (e.g., the

physical and psychological), and thevaluing of quality and quantity of life.

6 In order to demonstrate theeffectiveness and appropriateness ofend-of-life care provision, outcomesmust be measured and reported atthe patient and family level.

7 The measurement of patient andfamily self-reported outcomesrequires highest principles ofscientific rigour, and tools must beselected to reflect priorities and toenhance cross-national collaborationand comparisons. PRISMA hasdeveloped guidance on choice oftools and has improved a commonlyused measure in palliative and end-of-life care (i.e., POS).

8 Numerous outcome measures arecurrently available; already establishedtools should be used rather thaninventing new tools.Thoseinvestigated in the project (POS andSTAS) are widely used in a variety ofsettings and countries and they arevalidated. Clinicians and researchersmust be supported in the selection,application, and interpretation ofmeasures and of implementing

findings to enhance care. PRISMAoffers guidance on tool selection andimplementation. A further policyfocus on integral support to ensureintegration in daily practice isrequired with corresponding nationaland regional coordination andinfrastructure. Regional fundingspecific to the field of end-of-life careis important.

9 Routine measurement of patient andfamily outcomes in Europe and Africausing appropriate and well-validatedtools is required (i.e., tools thatreflect the multidimensional aspectsof this population and that arevalidated within end-of-life care andsensitive to the citizens they are beingused with).

10 Expertise exists in the science andmeasurement of end-of-life careexperience and established centresof excellence should lead both thescientific development and clinicalapplication of measurement toenhance the measurement andquality of end-of-life care for allEuropean citizens.

Implications for policy

PRISMA is committed to sharing thescientific findings with a wide range ofaudiences.A list of articles published sofar, including those currently accepted forpublication, is included below. PRISMAanticipates additional PRISMApublications in high-ranking journals.Information regarding new publicationswill be available via PRISMA's website.

Albers G, Harding R, Pasman RW,Onwuteaka-Philipsen BD, Hall S,Toscani F,Ribbe MW, Deliens L, on behalf ofPRISMA.What is the methodological rigourof palliative care research in long-term care facilities in Europe? Asystematic review.Palliative Medicine. In press.

Daveson BA, Bechinger-English D, BauseweinC, Simon ST, Harding R, Higginson IJ, GomesB on behalf of PRISMA.Constructing understandings ofend-of-life care in Europe: aqualitative study involving cognitiveinterviewing with implications forcross-national surveys.Journal of Palliative Medicine.

Mar;14(3):343-9. Epub 2011 Feb 9.

Sigurdardottir KR, Haugen DF, van der RijtCC, Sjøgren P, Harding R, Higginson IJ,Kaasa S; PRISMA.Clinical priorities, barriers andsolutions in end-of-life careresearch across Europe. Reportfrom a workshop.Eur J Cancer. 2010 Jul;46(10):1815-22.Epub 2010 Apr 22.

Harding R, Higginson IJ; PRISMA.PRISMA: a pan-European co-ordinating action to advance thescience in end-of-life cancer care.Eur J Cancer. 2010 Jun;46(9):1493-501.Epub 2010 Feb 23.

Kaasa S, Higginson IJ.Palliative care in cancer: how toimprove clinical research.Eur J Cancer. 2010 Jun;46(9):1486-7.Epub 2010 Apr 26.

Sigurdardottir KR, Haugen DF, BauseweinC, Higginson IJ, Harding R, Rosland JH,Kaasa S; on behalf of project PRISMA.A pan-European survey ofresearch in end-of-life cancer care.Support Care Cancer. 2010 Nov 30. [Epubahead of print].

PRISMA publications

Professor Irene J HigginsonPRISMA Scientific Director, Professor ofPalliative Care and Policy, King’s CollegeLondon, Cicely Saunders Institute,Department of Palliative Care, Policy andRehabilitation

Professor Irene J Higginson qualified inmedicine from Nottingham Universityand has worked in wide-ranging medicaland university positions, includingradiotherapy and oncology, in-patientand home hospice care, theDepartment of Health (England), andvarious universities. Her last post was asSenior Lecturer/Consultant at theLondon School of Hygiene and TropicalMedicine and Director of Research andDevelopment at Kensington & Chelseaand Westminster Health Authority. Shehas been at King's College London asProfessor and Head of Departmentsince October 1996. Her researchinterests and publications in thefollowing areas: quality of life andoutcome measurement, evaluation ofpalliative care particularly of newservices and interventions,epidemiology, clinical audit, effectiveness,psychosocial factors and care, symptomassessment, cachexia/anorexia, andelderly care.The Department ofPalliative Care, Policy and Rehabilitation,a WHO Collaborating Centre forPalliative Care and Older People,based at the Cicely Saunders Institute, isthe first purpose-built institute forresearch into palliative care offeringpalliative care courses and otherresources relevant to palliative care. Shehas led and collaborated on numerousstudies involving measurement and was

the creator of the Palliative careOutcome Scale.Author of many seminalworks in palliative and end-of-life care,she was awarded an OBE for herservices to medicine.

Dr Maria-José Vidal-RagoutActing Head of Unit, Medical ResearchUnit, Directorate of Health, DirectorateGeneral Research and Innovation,European Commission

Dr Maria-José Vidal-Ragout is ActingHead of the Medical Research Unitfrom the Directorate of Health,Directorate General Research andInnovation, European Commission.Theobjective of health research underFramework Programme Seven is toimprove the health of European citizensand boost the competitiveness ofhealth-related industries and businesses,as well as address global health issues.With a budget of 6.1bn euros over theduration of the Framework ProgrammeSeven, health research is a majorpriority for the European Union.

Mr Tom HudsonPresident, European Cancer PatientCoalition

Mr Robert L T Hudson (Tom) is currentlyPresident of the European Cancer PatientCoalition (ECPC) and member of itsfounding group, Chairman of EuropaUomo, the European Prostate CancerCoalition, acting Chairman of the WorldWide Prostate Cancer Coalition andboard member of Men Against Cancer,

and the Irish Prostate Cancer Patients’Support Group.Tom entered industry in1950, specialising in personnelmanagement, marketing and generalmanagement in a career that lasted 35years, then was head-hunted andappointed CEO of the Irish CancerSociety, (1985-1997) during this period hewas actively involved in the first EuropeAgainst Cancer Programme andsubsequently became President of theAssociation of European Cancer Leaguesfrom 1993 to 1997.The InternationalUnion against Cancer (UICC) invited Tomto take over the Chairmanship of theCOPES programme (1998-2004) and hewas elected to the UICC council (1998to 2006). Past roles include Vice Presidentof The European Network for SmokingPrevention and a founding member andboard member of ASH Ireland (10 years).

Dr Agis TsourosHead, Centre for Urban Health,WorldHealth Organization, Regional Office forEurope, Copenhagen

Dr Agis Tsouros has a degree inmedicine (University of Athens) and aMaster’s certificate and a Ph.D. in publichealth (University of Nottingham). Heis an accredited public health specialistand Fellow of the Faculty of PublicHealth (UK). He is a visiting professorin the Department of Epidemiology andPublic Health at University CollegeLondon (UCL). Since he joined theWHO Regional Office for Europe in1998 he has had leadershipresponsibility for several areas includingurban health policies and healthy cities;

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BiographiesSpeakers, discussants & chairs

healthy ageing, palliative care, publichealth functions and infrastructures,non-communicable diseases and riskfactors, environmental health andhealth policies at national and sub-national levels. At the WHO RegionalOffice for Europe he has led theHealthy Cities Network, involvinghundreds of local governments fromacross the Region in long-term, cutting-edge public health work.At present heheads the Policy and Cross-Cuttingprogrammes & Regional Director’sSpecial Projects Unit.The Unit isresponsible for the development of thenew European Policy for Health –Health 2020. He heads the Centre forUrban Health and Governance.

Dr Richard HardingPRISMA Principal Investigator, Reader inPalliative Care, King’s College London, CicelySaunders Institute, Department of PalliativeCare, Policy and Rehabilitation

Dr Richard Harding is Reader(Associate Professor) in palliative careat the Cicely Saunders Institute atKing’s College London. He has anacademic background in social scienceand care management, and he isPrincipal Investigator on a largenumber of studies focusing onintervention development and testing,family caregiver outcomes, non-cancerincluding HIV and heart failure, cancer(particularly home care andinformation giving), and leads a largeprogramme of global health research insub-Saharan Africa. He has been givena number of national and internationalpersonal and competitive awards toconduct health-oriented study andresearch. Dr Harding sits on the Boardof the International Association forHospice Palliative Care, and holds anumber of journal editorial positions.He is the Principal Investigator(coordinator) for PRISMA, and has astrong interest in internationalcollaboration for multidimensionalpatient-centred outcome measurement,having worked on palliative outcomemeasure development and validation inEurope, Latin America,Asia and sub-Saharan Africa.

Professor Sheila PayneIncoming Chair of the EAPC, Director,International Observatory on End of LifeCare, Lancaster University

Professor Sheila Payne is the Help theHospices Chair in Hospice Studies andDirector of the InternationalObservatory on End of Life Care. Sheilais a health psychologist, with abackground in nursing and over 20 yearsexperience in academia. She is theDeputy Head of the Division of HealthResearch. Based in the InternationalObservatory on End-of-Life Care,Sheila's post (the first of its kind in theUK and supported since 2006 for fiveyears by the national charity Help theHospices) leads important new researchto help improve lives of many thousandsof patients and families that depend onhospice care. She also directs the NCRIfunded Cancer ExperiencesCollaborative for 6 years from 2006,and since 2007 has been Vice Presidentof the European Association forPalliative Care. Sheila has a long trackrecord in palliative care research andscholarship. Her research agendafocuses on palliative care, end-of-lifecare and bereavement support. Sheilahas supported over 20 PhD studentsand has been published widely inacademic and professional journals. Shehas published 12 books and edited the"Health Psychology" book seriesproduced by the Open University press.

Dr Marjolein GyselsAssociate Research Professor, BarcelonaCentre for International Health Research(CRESIB)

Marjolein Gysels completed an MA atthe University of Ghent in Belgium andreceived a PhD in anthropology at theUniversity of Amsterdam in 1996. Shehas carried out research in D.R. Congoon Swahili and oral literature. She

worked for the TANESA project onAIDS in Tanzania on female infertility,and for the Medical Research Council(UK) Programme on AIDS in Ugandaon commercial sex work.At King'sCollege London, she collaborated onthe Project to Improve Management ofTerminal Illness (PROMOTE), and shewrote the systematic reviews for theResearch Evidence Manual which hasbeen published as part of the NICEGuidance for supportive and palliativecare for those affected by cancer.Currently she is senior research fellowconducting a programme of research onbreathlessness funded by The CicelySaunders Foundation.This encompassesresearch projects on the experience ofbreathlessness in patients with differentconditions, at different phases in theirillness and in different settings.Marjolein leads PRISMA’s work packagethat is focussed on culture.

Barbara GomesCicely Saunders International PhDResearch Training Fellow, King's CollegeLondon, Cicely Saunders Institute,Department of Palliative Care, Policy andRehabilitation

Barbara completed her first degree inPsychology and Health at the Universityof Porto and an MSc in Palliative Careat King's College London withdistinction. Having gained experience inresearch she worked for one year in apalliative care unit in Portugal, beforerelocating to London.Together withProfessor Irene J Higginson, Barbaraleads a long-term project supported byCicely Saunders International aiming tounderstand where people die and todiscover ways of empowering patientsto die in the place of their choice, withquality care, dignity and with supportfor their families. She coordinates apopulation-based survey with around600 bereaved relatives of cancerpatients in London – the QUALYCAREstudy – examining variations in thequality of care, costs, preferences andoutcomes for patients and families. Sheis also leading a pan-European surveywith around 10,000 members of thegeneral public on their preferences and

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priorities for end of life care, funded bythe European Commission as part ofthe PRISMA project.

Professor Stein KaasaProfessor of Palliative Medicine, Faculty ofMedicine, NTNU, Director of the CancerDepartment Trondheim University Hospital,Director of the European Palliative CareResearch Centre, National Cancer DirectorNorwegian Directorate of Health

Stein Kaasa has extensive experience inleading national and internationalmultidisciplinary collaboration. He alsohas extensive administrative / leaderexperience through the establishmentof the Palliative Medicine Unit inTrondheim 13 years ago and he is stillthe leader of the program bothclinically and scientifically. He has beenthe leader of the Department ofCancer Research and MolecularMedicine and President of the EuropeanAssociation for Palliative Care (EAPC)and is the incoming chair of the EAPCResearch Network. He is also theleader of the European Palliative CareResearch Collaborative (EPCRC). He isleading PRISMA's clinical researchpriorities work package.

Dr Claudia BauseweinSenior Clinical Research Fellow & SaundersScholar, King’s College London, CicelySaunders Institute, Department of PalliativeCare and Policy

Claudia qualified in medicine at MunichUniversity in 1992. Her medicalbackground is internal medicinealthough she has been involved inpalliative care in Germany for morethan 20 years. From 2001 to 2007 sheworked as a Consultant in PalliativeMedicine at the InterdisciplinaryCentre for Palliative Medicine atMunich University. From 2004 to 2010,

Claudia was Vice President of theGerman Association for PalliativeMedicine and was co-editor of theGerman Journal of Palliative Medicinefrom 2000 to 2009. Claudia's currentwork focuses on breathlessness,outcome measurement and palliativecare in non-cancer patients as well ason research methodologies. She isleading the work on outcomemeasurement (WP4) in the EuropeanCommission funded PRISMA.

Professor Pedro Lopes Ferreira Associate Professor of Health Economics atthe Faculty of Economics of the Universityof Coimbra

Pedro Lopes Ferreira has been theAssociate Professor of HealthEconomics at the Faculty of Economicsof the University of Coimbra since1986; Director of the Centre since1997; coordinator of the Mastersprogramme in Health Management andHealth Economics since 1995; and ofthe Postgraduate course on HealthOrganisations Economics andManagement since 2006. He is afounding member and currentcoordinator of the PortugueseObservatory on Health Systems,created in 2000.

Professor Luc DeliensProfessor of Public Health & PalliativeCare, Director of the End-of-Life CareResearch Group of Ghent University & VrijeUniversiteit Brussel, in Belgium, andmember of the Palliative Care Centre ofExpertise, at the VU University MedicalCentre in Amsterdam, the Netherlands

Luc Deliens has received severalscientific awards for his research, andpublished over 300 journal articles,book chapters and reports. In 2009, hebecame the first member of the Royal

Academy of Medicine of Belgium torepresent palliative care and end-of-lifecare in the Academy. He is currentlysupervising 25 PhD students andleading on-going local, national andinternational studies. His presentresearch includes studies on caresetting transitions, prevention ofhospitalisation at the end of life, earlydiagnosis of palliative care needs ingeneral practice, palliative care innursing homes, advance care planning,end-of-life communication, palliativecare quality indicators, euthanasia andother medical end-of-life decisions aswell as the attitudes of the publictowards palliative care and euthanasia.Internationally, he is coordinatingEURO IMPACT (the EuropeanIntersectorial and Multi-disciplinaryPalliative Care Research Training), aMarie Curie Initial Training Network;the EURO SENTIMELC study on end-of-life care trajectories; theinternational place of death study (IPodstudy); and the UNBIASED study onpalliative sedation in the UK, theNetherlands and Belgium.

Senator Sharon Carstairs, P.C.,Senator (Manitoba), Canada

The Honourable Sharon Carstairs, P.C.has been a tireless champion forhospice palliative care in Canada since1994, as a Senator and as federalCabinet Minister. Originally fromHalifax, Nova Scotia, Senator Carstairsobtained a Bachelor of Arts in PoliticalScience and History (DalhousieUniversity), and a Masters of Arts inTeaching at (Smith College,Northampton, Massachusetts). She hastaught in Massachusetts,Alberta andManitoba in the public, private andCatholic school systems. In 1986 shemoved to public life, and was electedto the Legislative Assembly inManitoba. In 1988, she led the LiberalParty in Manitoba to a monumentalelection gain and became the firstwoman to lead the Official Oppositionin a Canadian Legislative Assembly. Sheremained a provincial Member of theLegislative Assembly until herappointment to the Senate in 1994.

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From 1997 to 1999 Senator Carstairsserved as the first woman to beDeputy Leader of the Government inthe Senate. She served as FederalCabinet Minister from 2001 to 2003 asLeader of the Government in theSenate and Minister with SpecialResponsibility for Palliative Care.Senator Carstairs has also been anadvocate for women and children anda defender of human rights. She hasserved as a founder and President ofthe Prairieaction Foundation, a non-profit organisation dedicated to theelimination of family violence andviolence against women. She iscurrently the Chair of the HumanRights Committee of the IPU. SenatorCarstairs has served as a member andas Chair of various SenateCommittees, including twoCommittees that examined the issuesof hospice palliative care and sheserved as Chair of the Special SenateCommittee on Ageing. She hasreleased two special reports onpalliative in Canada, one in 2005 andthe most recent one in June 2010 onthe state of palliative care in Canada,titled Raising the Bar.

Professor David CurrowDiscipline of Palliative and SupportiveServices, Flinders University, Chief CancerOfficer & CEO, Cancer Institute NSW,Australia

Professor David Currow is ChiefCancer Officer and CEO of theCancer Institute NSW (Australia).Prior to this he was the foundationChief Executive Officer of CancerAustralia, the Australian Government’snational cancer control agency. Formerroles include foundation Director ofthe Nepean Cancer Care Centre,Sydney and Area Director of PalliativeServices Wentworth Area HealthService, Sydney. He has publishedwidely in palliative care journals andthe general medical literature.Amongother projects, he is co-chiefinvestigator on an anthology ofevidence for palliative care practiceand service deliverywww.caresearch.com.au, and leads a

national collaborative the AustralianPalliative Care Clinical StudiesCollaborative (PaCCSC) running phaseIII studies for symptom-controlmedications at a level that allowschanges in registration and subsequentsubsidy applications. Other researchinterests include the symptomaticmanagement of dyspnoea, improvingpopulation based planning for peoplewith life-limiting illnesses andimproving the evidence base aroundwhich clinical decisions are made inpalliative care. He continues to holdthe appointment of Professor ofPalliative and Supportive Services atFlinders University in Adelaide, andgrants from the National Health andMedical Research Council, the NationalInstitutes of Health (USA) and theCancer Council Australia. He continueson the Board of the InternationalAssociation of Hospice and PalliativeCare and has been on the AmericanSociety of Clinical Oncology taskforceon palliative care education. He is aformer president of both the ClinicalOncological Society of Australia andPalliative Care Australia, a seniorassociate editor of the Journal ofPalliative Medicine.

Dr Kathleen M. FoleyNeurologist in the Pain & Palliative CareService at Memorial Sloan-KetteringCancer Center, New York City & Professorof Neurology, Neuroscience, and ClinicalPharmacology at Weill Medical College,Cornell University

Formally the Director of the WHOCollaborating Center for Cancer PainResearch and Education at MemorialSloan-Kettering Cancer Center, DrKathleen M. Foley holds the Chair ofthe Society of Memorial Sloan-Kettering Cancer Center in PainResearch. She was elected to theInstitute of Medicine of the NationalAcademy of Sciences for her nationaland international efforts in thetreatment of patients with cancerpain. Dr Foley is currently the MedicalDirector of the International PalliativeCare Initiative of the Open SocietyFoundation working to advance

palliative care globally. Dr Foleychaired three expert committees thatresulted in the publication of thethree WHO monographs on CancerPain and Palliative Care; “Cancer PainRelief” (1996), “Cancer Pain Reliefand Palliative Care” (1990), and“Cancer Pain and Palliative Care inChildren” (1996).

Professor Dr Bart Van den EyndenGeneral Practitioner, Consultant PalliativeCare, University of Antwerp

Professor Bart Van den Eyndengraduated as a medical doctor(University of Antwerp), and this waslater followed by a MSc Anthropology(University of Leuven), and a PhD about‘Quality of Life in Palliative Care’. Hespecialised as general practitioner andas palliative care consultant. He worksclinically as a general practitioner and asMedical Director of the Centre forPalliative Care in Antwerp.At theUniversity of Antwerp as professorpalliative medicine within theDepartment of Primary andInterdisciplinary Health Care, he isresponsible for education and researchconcerning palliative medicine and care.He is also the coordinator for thePostgraduate Interuniversity Course inPalliative Medicine. He has publishedmany scientific articles about palliativeand chronic care. His main interests arequality of care, education, care ethics,spirituality and the development ofprimary palliative care.An importantproject, by order of the FlemishGovernment, is the development of aprimary palliative care pathway fornearing end of life. He is member ofmany scientific organisations and boardsconcerning palliative care. One of theseis the International Primary PalliativeCare Research Group.

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Beneficiary Beneficiary name Beneficiary Countrynumber short name

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 CEISUC PTde Coimbra (CEISUC)

6 Vereniging voor Christelijk Hoger Onderwijs Wetenschappaelijk VUA NLOnderzoek en Patientenzorg (VUA)

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

WP WP title WP lead

1 Cultural difference in end-of-life care Dr Marjolein Gysels

2 Public priorities & preferences for end-of-life care Barbara Gomes

3 Clinical research priorities in end-of-life care Prof Stein Kaasa

4 Best practice & resources for the use of end-of-life life care Dr Claudia Bauseweinquality indicators

5 Best practice in symptom measurement Prof Pedro Lopes Ferreira

6 Best practice in long-term care facilities Prof Luc Deliens

7 Management Dr Richard Harding

8 Final conference Dr Barbara Daveson & Dr Noël Derycke

Work packages

Beneficiaries

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Dr Claudia Bausewein Cicely Saunders International SeniorClinical Research Fellow, King’s CollegeLondon, Cicely Saunders Institute

Dr Barbara Daveson PRISMA Symposium Lead, PRISMA ProjectManager and Research Fellow, King’sCollege London, Cicely Saunders Institute

Professor Luc Deliens Professor of Public Health & Palliative Care EMGO Institute for Health and CareResearch, VU Medisch CentrumAmsterdam

Dr Noël Derycke PRISMA Symposium Lead,Professor of Public Health and PalliativeCare, Universiteit Antwerpen

Dr Richard Harding PRISMA Principal Investigator,Reader in Palliative Care,King’s College London, Cicely SaundersInstitute

Professor Irene J Higginson PRISMA Scientific Coordinator,Head of Department, Palliative Care, Policyand Rehabilitation, King’s College London,Cicely Saunders Institute

Professor Stein Kaasa Professor of Palliative Medicine, Faculty ofMedicine, NTNU, Director of the CancerDepartment,Trondheim University Hospital;Director of the European Palliative CareResearch Centre, National Cancer Director,Norwegian Directorate of Health

Professor Lukas Radbruch President of the European Association forPalliative Care, Chair of Palliative Medicine Rheinische Friedrich-Wilhelm UniversitätBonn, Director of the Center of PalliativeMedicine, Malteser Hospital Bonn

PRISMA Symposium Committee

PRISMA was funded by the EuropeanCommission’s Seventh FrameworkProgramme (contract number:Health-F2-2008-201655) with theoverall aim of co-ordinating high-quality international research intoend-of-life cancer care. PRISMAaimed to provide evidence andguidance on best practice to ensurethat research can measure andimprove outcomes for patients andfamilies. PRISMA activities aimed toreflect the preferences and culturaldiversities of citizens, the clinicalpriorities of clinicians, andappropriately measuremultidimensional outcomes acrosssettings where end–of-life care isdelivered.Principal Coordinator: Richard Harding.Scientific Director: Irene J Higginson.

The research leading to the resultspresented here received funding fromthe European Union's SeventhFramework Programme (FP7/2007-2013) under grant agreement no.Health-F2-2008-201655.Disclaimer: Any publicity made by thebeneficiaries in respect of the project, inwhatever form and on or by whatevermedium, reflects only the author’sviews.The European Commission is notliable for any use that may be made ofthe information contained therein.PRISMA members: Gwenda Albers,Barbara Antunes,Ana Barros Pinto,Claudia Bausewein, DorotheeBechinger-English, Hamid Benalia, EmmaBennett, Lucy Bradley, Lucas Ceulemans,Barbara A Daveson, Luc Deliens, NoëlDerycke, Martine de Vlieger, Let Dillen,Julia Downing, Michael Echteld, Natalie

Evans, Dagny Faksvåg Haugen, NancyGikaara, Barbara Gomes, MarjoleinGysels, Sue Hall, Richard Harding, IreneJ Higginson, Stein Kaasa, JonathanKoffman, Pedro Lopes Ferreira,ArantzaMenaca, Johan Menten, NataliaMonteiro Calanzani, Fliss Murtagh,Bregje Onwuteaka-Philipsen, RoelinePasman, Francesca Pettenati, RobertPool, Richard A Powell, Miel Ribbe,Katrin Sigurdardottir, Steffen Simon,Franco Toscani, Bart Van den Eynden,Paul Vanden Berghe,Trudie van Iersel.Special thanks: Special thanks: SusieEdwards, Emma Bennett, Lucy Bradleyand WP8 members for their work onthe PRISMA Symposium 2011.

For further information contact:prisma@kcl.ac.ukwww.prismafp7.eu

Acknowledgements

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