The C-CHANGE programme comprised six workstreams (see Figure 1):
- Workstreams 1, 2, 3 and 4 ran consecutively.
- Workstream 5 ran concurrently with workstreams 1, 2, 3 and 4 to integrate each workstream into the overall programme of work.
- Workstream 6 also ran concurrently with workstreams 1, 2, 3 and 4, to maximise dissemination and outputs throughout the programme.
FIGURE 1 Research pathway diagram for the C-CHANGE programme. (Figure not reproduced here; see the original article.)
Changes to the overall programme design
We amended/expanded three components of the original workplan:
- In workstream 1, emerging psychometric evidence changed the extent to which we needed to undertake validation of the different measures. We added a study of Phase of Illness, as new evidence56 confirmed Phase of Illness would potentially be a key casemix criteria.
- During workstreams 1 and 2, as a direct result of input from our patient and public involvement (PPI) group, we added a patient experience measure and included an additional secondary analysis to understand the role of uncertainty in the care needs of patients and families with advanced illness.
- Within workstreams 3 and 4, we studied the models of specialist palliative care operating at the participating sites in more detail; the need for this became apparent as we tried to characterise models of palliative care in the context of a rapidly changing healthcare environment.