Table 1 Recommendations for PROMs from key projects

Methods of Researching End of life Care (MORECare)- Higginson et al. (2013)

Dedicated to producing evidence-based guidance on methods to help in the design and conduct of research in end of life care.

Produced a statement/checklist of key points

Outcome me:asures should be:

1. Short

2. Responsive to change over time

3. Used for both clinical practice and research

4. Have validity and reliability in the relevant population

5. Able to capture clinically important data

6. Easy to administer

7. Easy to interpret

8. Applicable across different care settings

Reflecting the Positive DiveRsities of European Priorities for ReSearch and Measurement in End-of-Life Care- Bausewein et al. (2011)

PRISMA focuses on bringing about best practice and supporting research and outcome measurement in end of life care across Europe.

Booklet produced to offer support and guidance for understanding, selecting, and using PROMs in palliative care

Outcome measures should be:

1. Valid: Face and content validity; Criterion and construct validity

2. Reliable: Inter-rater reliability; Test-retest reliability; Internal consistency

3. Appropriate and acceptable for clinical use

4. Responsive to change/ able to detect changes

5. Interpretable/ translatable to meaningful information

6. Translatable to other languages

Outcome Assessment and Complexity Collaborative (OACC) Suite of Measures- Murtagh et al. (2014)

Working to monitor the implementation of outcome measures into routine clinical practice.

Developed a suite of recommended measures for palliative care and guidance on implementation.

Outcome measures should be:

1. Reflective of the key domains of palliative care e.g. stage of illness; patient’s functioning; symptoms; other key concerns; impact on patient’s and family’s quality of life