Newsletter 1

PKIDS stands for the Pediatric KIDney Stone Care Improvement Network. We are a community of patients, caregivers, clinicians, and researchers who perform collaborative studies of kidney stones at 26 pediatric healthcare systems in North America. The Network arose out of the 8 institutions that comprise PEDSnet, responding to an expressed need from patients and their caregivers to better understand the treatment of kidney stones. Specifically, the comparative effectiveness of different surgical approaches to remove kidney stones, the impact of these surgeries of patients’ lives, and insight into the recovery period.

Methods:
Our protocol includes 3 phases: elicitation of key research themes, refinement of research themes into research questions, and prioritization of research questions into a research agenda. Elicitation will occur across 100 stakeholders via electronic surveys. Refinement will occur within both separate (i.e. caregivers/stakeholders [N = 40] separate from researchers/clinicians [N=12]) and mixed stakeholder focus groups or interviews with participants randomized into each category. Prioritization will occur across 1000 stakeholders engaged to be randomized to a modified Delphi process or engagement in the Codigital crowd-sourced virtual platform.

The incidence of kidney stone disease in the United States has doubled over 15 years with a prevalence now equivalent to that of diabetes. Despite the high morbidity of kidney stones, most existing medical and surgical treatments for children and adults with kidney stones are not supported by high-quality evidence. In addition, use of patient-reported outcomes in existing trials is lacking.