Skip to main content

Table 2 Summarised research priorities, ranked in order of importance

From: Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique

Ranking Research priority 1st choice 5 points 2nd choice 4 points 3rd choice 3 points 4th choice 2 points 5th choice 1 point Total score (Number of votes)
1 Investigating issues around end of life decision making. This could include: 3 2 3 2 2 38 (12)
 • Profile of end of life decisions for people with ID, incl: starting PC pathways, withholding/withdrawing treatment
 • Methods and processes of decision making
 • Influencing factors on decision making
 • Patient participation in decision making, incl communication issues
 • Developing a decision making framework
2 Mapping the scale and scope of the issue: What is the current state of affairs with regards to PC for people with ID, and how does this compare to the general population? This could include: 4 3 - 1 - 34 (8)
 • Access to healthcare and PC services
 • Societal attitudes towards dying and people with ID
 • Relevant national and international laws
 • People with ID, cancer and access to cancer services
 • Transitions between services
3 Investigating the quality of PC for people with ID. 3 2 2 1 1 32 (9)
This could include:
 • Challenges in achieving best practice (Consensus Norms)
 • Perspectives and experiences of people with ID, families, carers, staff
 • Levels of patient involvement
 • Understanding best practice models for dementia
 • Collating case studies on patients and/or organisational developments
4 Developing outcome measures and instruments for PC of people with ID. This could include: 2 1 1 2 1 22 (7)
 • Common European instrument for measuring quality of PC for people with ID
 • Adapting existing measures (incl contrast with general population)
 • Developing new measures/instruments
5 Clarifying definitions and philosophies: - 2 1 - 2 13 (5)
Develop a common language
“Intellectual disabilities”, “Palliative care”, “Europe”
6 Developing specific tools and guidelines to improve PC of individuals with ID (and investigating the impact of such tools). This could include: - 1 1 2 1 12 (5)
 • Assessment of pain and other symptoms
 • Breaking bad news
7 Focusing on training and resources. - 1 - 2 1 9 (4)
 • Develop resources, incl. training programmes
 • Collate (inter) national resources (training, information)
8 Investigating economic issues. This could include: - - 1 - 3 8 (4)
 • Developing economic models
 • Investigating ways to maximise good results in cost-effective ways
9 Promoting collaborative working. This could include: - - 1 - 2 5 (3)
 • Testing ways to improve care through collaboration
10 Investigating policies and strategies. This could include: - - 1 1 - 5 (2)
 • Investigating connections between local needs/person-centred
 • Influence of (inter) national policies on PC for people with ID
 • Plans with national policies and service provision
11 Review and analyse work already done. - - 1 - - 3 (1)