An outline of the steps in the development of a specialty specific PCI.
1.Literature review - item generation: based on questionnaires used as patient reported outcomes (PRO) in the specific cancer or chronic condition.
2.Removal of duplicate items across the questionnaires but not item reduction
3.Multi-professional modified delphi - usually by email across the team in a unit…and national interested groups/Associations. To reduce item list to a manageable number of key items e.g 50 to 100 and to allocate items to domains. Usually about three or four rounds are required.
3.Focus groups with patient +/- carers to make sure the terms are easy to understand and that no items are missing. Some further item reduction might take place at this stage.
4.Small feasibility study in clinic e.g 50 patients before its introduction and 50 after
5.Cross-sectional survey of a larger cohort to explore clinical demographics and range of items, compared to established PROMS.
6.Full before and after study.
7.Other studies using the PCI in support validation process.