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CONCLUDED: EAPC Taskforce on patient-reported outcome measurement in palliative care

The taskforce started its work at the 12th EAPC Congress in Lisbon 18 to 21 May 2011

Background

Patient reported outcome measurement plays an increasingly important role in palliative care and is used in clinical care (e.g. assessing symptoms and needs of patients), audit (quality assurance of services) and research (e.g. study the effectiveness of an intervention). Hundreds of generic outcome measures and specific symptom measures exist for patients in the palliative care situation. Although initiatives were started over the last decade to improve outcome measurement in palliative care, a clear roadmap or uniform approach to measuring outcomes is lacking. As palliative care services increasingly need to justify their existence and show their quality, documentation of outcomes is paramount.

Various international and national groups, such as the PRISMA group, the EPCRC, PCOC in Australia or the German outcome project are dealing with outcome measurement in palliative care. An EAPC taskforce could help to bring these groups together and move efforts forward to improve outcome measurement in palliative care on a European and wider international level. As there are various links to the African Palliative Care Association APCA (within PRISMA, EAPC) we would like to invite two colleagues from Africa to participate in the task force. Also, contacts already exist to colleagues in the US and Australia who are involved in moving the topic forward in their countries.

Aims & objectives

1. To harmonise approaches to outcome measurement in palliative care
2. To agree on a common language for outcome measurement in palliative care
3. To develop reccomendations for a toolkit of outcome measures in palliative care
4. To provide resources for the use of patient-reported outcome measures in palliative care
5. To link outcome measurement and quality indicators for palliative care

Milestones

EAPC conference Lisbon 2011:
1st planing meeting (raising money, finding a common language, agreement on methodology how to come to an agreement, developement on a work plan for two years).

January 2012:
Circulation of a draft remit for White paper on outcome measurement to :

  • provide a framework on outcome measurement in clinical care, audit and research for palliative care professionals in palliative care throughout Europe and worldwide,
  • provide guidance for the use of outcome measures in clinical care and research in palliative care,
  • clarify the role and position of PROMs in the context of quality indicators

EAPC conference, Prague 2013: final version of White Paper, approval by Borad of Directors, publication via EAPC website and peer-reviewed journals

Partners

Cicely Saunders Institute, Department of Palliative Care, Policy and Rehabilitation

 

Chairs

 

Claudia Bausewein
Prof. Dr. med. PhD MSc

Department of Palliative Medicine
Klinikum der Universität München
Campus Großhadern
Marchioninistr. 15,
81377 München
Tel +49 89 7095 4931
Fax +49 89 7095 4939

contact by email

Irene Higginson
Cicely Saunders Institute
Department of Palliative Care, Policy and Rehabilitation
King’s College London, UK

Click here to contact by email

Members

Australia
David Currow

Germany
Lukas Radbruch
Steffen Simon

Italy
Massimo Costatini

Norway
Stein Kaasa

Netherlands
Luc Deliens

Portugal
Pedro Lopez Ferreira

South Africa
Kath Defilippi

Sweden
Gunnar Steineck

Uganda
Julia Downing

UK
Richard Harding

USA
Amy Abernethy

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