Fig. 1

Flow of involved patients, relatives and HCPs. The eight patients are named P1–P8. The involved relatives are named Rx, x being the number of the corresponding patient to whom they are related. R2 was involved starting from the second interview, and R7 was involved starting at the expert panel meeting. R7 offered to stand in for P7. Two patients dropped out before the first interview; however, P6 was involved again in the second interview, and R6 was involved there as well. One patient (P4) and one relative (R2) dropped out after the second interview. The remaining six patients and three relatives all gave consent to be involved as members of the expert panel; however, all except R1 dropped out before the panel meeting. Abbreviations: HCPs: health care professionals; PPI: patient and public involvement