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

Abstract

<jats:p> 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. </jats:p>

Trends in Peritoneal Dialysis Technique Survival, Death, and Transfer to Hemodialysis: A Decade of Data from the RDPLF

“…We believe that a wider usage of icodextrin and an optimized prescription of APD for high transporter patients could decrease transfers to HD due to ultrafiltration failure and volume overload. Since there is inconclusive evidence that targeting a higher peritoneal Kt/V urea translates into improved PD outcomes, the achievement of a specific clearance target is no longer recommended [53]. It can be hypothesized that moving beyond the Kt/V urea dogma will avoid inadequacy-related transfers to HD in the absence of uremic symptoms in the future.…”

KDOQI US Commentary on the 2020 ISPD Practice Recommendations for Prescribing High-Quality Goal-Directed Peritoneal Dialysis

“…In the words of an individual on PD, these are "rights" for people receiving medical care and "essentially an extension of informed consent." 23 The KDOQI work group agrees with the spirit of this guideline, which shifts the focus of care to ensuring that the dialysis prescription meets the specific needs, preferences, and values of the person on PD. Many people treated with PD face a high burden of comorbidity, short life expectancy, low quality of life, socioeconomic deprivation, and high rates of anxiety and depression.…”

“…22 Furthermore, in recognition that the burden for families performing home dialysis is significant, the recommendation includes that formal assessment of the child's and caregiver's perception of quality of life may aid in ensuring that the family is "fully aware of the burden of the care … so that appropriate support systems may be put in place." 121,122 In accordance with the accompanying article to the ISPD guideline that provides patient/caregiver perspectives on PD, 23 the KDOQI work group suggests inclusion of peer support in the modality selection process, which may promote an informed decision by the child and/or their caregivers. The ISPD recommendation acknowledges that an inadequate living situation may be a relative contraindication for home dialysis, but without objective measures of what constitutes an adequate living situation, this remains a subjective, and potentially biased, assessment.…”

Person-centered peritoneal dialysis prescription and the role of shared decision-making

“…It can lead to inappropriate medication prescribing or to duplication of tests or to delays in transplant workup. 34 While the blame for this does not all rest with the PD team, there is surely, given the complexity of ESKD, an obligation for that team to take the lead in directing the overall strategy of care.…”

“…An area where people frequently report an unsatisfactory experience is how well integrated their care is. 34,35 This applies very much to those on PD. They complain that there is a lack of communication and of common approach between their PD team and their other caregivers, particularly those who provide their primary care, transplant evaluation, diabetes, and cardiology care.…”