Table 1 Public Involvement Framework for PROM Development; Adapted from Carlton et al. [10]
PROM development stage | PI involvement |
|---|---|
1. Establish a need for new or refined PROM | - Review existing PROMs - Critique existing PROMs - Determine whether a new PROM is needed |
2. Development of a conceptual framework | - Review of conceptual model to ensure validity |
3. Identifying item content | - Input on study design - Input on culturally appropriate issues - Input on participant-facing documents - Input on ethics and governance considerations |
4. Item development | - Analysis and interpretation of qualitative interviews - Advice and input on working of potential items |
5. Item reduction | - Identify potentially redundant items - Identify items that could benefit from rewording - Input and advice in ordering of items |
6. Pre-testing of items (cognitive interviews/debriefing) | - Input on study design, methodology, recruitment, design and content of public facing document, and conducting the interviews - Analysis and/or interpret results |
7. Psychometric survey design | - Input on study design |
8. Psychometric survey analysis | - Advice on the interpretation of the results - Ensure validity of findings |
9. Selection of items for the PROM | - Advice on final selection of items - Consideration of number of items to be included - Advice and input into how PROM may be used in clinical settings |
10. Design of the PROM | - Advice and input of format and layout of PROM - Advice on instructions of how to complete PROM, framing of questions, working of response options, and order of items |
11. Dissemination and promotion of PROM | - Co-authorship and co-presenting - Advice on strategies for wider dissemination - Input on content of materials to ensure appropriate language and terminology are used |