Table 1.

PKIDS PFP perspectives and corresponding action items

Patient perspective	Network/study action
‘I have more anxiety. I have pain and when I do, I always wonder if it is related to a kidney stone. I have missed school. It has also affected my social life, not always feeling well, I’m not sure about doing things’.	PRO instrument selection Timing of PRO assessment
‘Procedures and recovery were unpleasant, it helped to know what I didn’t want to have happen again and what I hope to have happen’.	PRO instrument selection timing of PRO assessment
‘Would they be able to get the stone? Would I need stents again? Would I have to come back in for another procedure?’	Surgical outcome selection
‘I wanted to help the researchers understand the patient’s viewpoint, small concerns could be big ones for a patient. Hope to make it easier for my future procedures and for others’.	Expansion of PFP responsibilities Symposium keynote speaker Authorship for academic publication

PFP, Patient and Family Partners; PKIDS, Pediatric KIDney Stone; PRO, patient-reported outcome.