Table 2.
Summarised research priorities, ranked in order of importance
| 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) |