International Society for Peritoneal Dialysis Practice Recommendations: The view of the person who is doing or who has done peritoneal dialysis

Abstract

The 2019 International Society for Peritoneal Dialysis (ISPD) Practice Recommendations were prepared by a committee invited by the ISPD to develop new practice recommendations for prescribing high-quality, goal-directed peritoneal dialysis (PD). Further input was sought at the stage of the first draft of the proposed recommendations by circulating drafts of the recommendations and articles to an international selection of people who were either actively doing PD or who were previously treated with PD, as well as caregivers, to ask for their feedback. A diverse group of 22 people from 8 countries across 5 continents provided their feedback covering the main recommendations as well as the accompanying articles. Much of the feedback has been acted upon at the revision stages, however, the responses are published here in summary form to underscore the commitment to hearing the voice of those doing PD or caring for them. A key change that arose from the feedback has been the shift of language from "patient-centred" to "person-centered," reflecting the desire of these recommendations to address the patient as a person with needs and preferences beyond just the medical perspective, along with the need for the person doing PD to be central to the process of shared decision-making. Notwithstanding the challenges of an international, multi-lingual population, with people doing PD in highly diverse geographic and economic environments, the next iteration of ISPD guidelines should consider the role of people doing PD and their carers in evidence-based coproduced guidelines, from the inception of the guidelines.

Keywords: Guideline; peritoneal dialysis; person-centred care; quality of life.