Table 2 Summarised research priorities, ranked in order of importance

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)