Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care.
BACKGROUND
People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs.


OBJECTIVE
To define consensus norms for palliative care of people with intellectual disabilities in Europe.


METHODS
Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version.


METHODS
Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members' networks.


RESULTS
A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents' comments, several items were modified and one item was deleted.


CONCLUSIONS
This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.
Faculty of Health, Social Care and Education, Kingston University and St George's University of London, London, UK I.Tuffrey-Wijne@sgul.kingston.ac.uk.
Irene
I
Tuffrey-Wijne
Queen's University Belfast, Belfast, UK.
Dorry
D
McLaughlin
Governor Kremers Centre, Maastricht University Medical Centre, Maastricht, The Netherlands.
Leopold
L
Curfs
Centre Régional d'Études, Dijon, France.
Anne
A
Dusart
Service de la Santé Publique, Lausanne, Switzerland.
Catherine
C
Hoenger
The Prince & Princess of Wales Hospice, Glasgow, UK.
Linda
L
McEnhill
Keele University, Keele, UK.
Sue
S
Read
Mater Misericordiae University Hospital, Dublin, Republic of Ireland.
Karen
K
Ryan
Oncodefi, Montpellier, France.
Daniel
D
Satgé
Caritas of the Diocese of Munich and Freising, Munich, Germany.
Benjamin
B
Straßer
Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway.
Britt-Evy
BE
Westergård
Tizard Centre, University of Kent, Canterbury, UK.
David
D
Oliver
D026683:Advisory Committees; D032921:Consensus; D003697:Delphi Technique; D005060:Europe; D006801:Humans; D008607:Intellectual Disability; D010166:Palliative Care; D011787:Quality of Health Care; D011795:Surveys and Questionnaires; D019452:Terminally Ill
Palliative care; access and evaluation; consensus; end of life; health-care quality; intellectual disabilities