Living life on PD to its fullest: Towards a PD-focused life participation measure.

Abstract

Achieving true person-centred care, defined as personalised care that is respectful of and responsive to an individual’s preferences, needs and values, has rightly become a high-priority focus for the nephrology community. Recently published clinical practice guidelines for the care of patients treated with dialysis have increasingly emphasised person-centred goals such as maintaining quality of life, ameliorating symptoms and minimising treatment burden rather than focusing narrowly on specific targets for small solute clearance or markers of mineral metabolism. For example, in the recently published International Society for Peritoneal Dialysis practice recommendations on prescribing high-quality goal-directed peritoneal dialysis (PD), the first key recommendation states that PD should be prescribed using shared decision-making with an aim to (1) ‘maintain quality of life for the person doing PD . . . by enabling them to meet their life goals’ and (2) to minimise symptoms and treatment burden. In 2021, World Kidney Day, a joint initiative of the International Society of Nephrology and the International Federation of Kidney Foundations, selected ‘Living Well with Kidney Disease’ as its central theme, with the concept of life participation at the centre of its conceptual framework. Life participation was defined by the World Kidney Day steering committee as the ability to do meaningful activities of life including, but not limited to, work, study, family responsibilities, travel, social and recreational activities. Life participation has been identified as a high-priority core outcome for inclusion as a clinical trial outcome by members of the Standardized Outcomes in Nephrology (SONG) initiative, including specifically for studies of patients treated with PD. The SONG initiative is an international collaboration that has worked for over a decade to establish a set of core outcomes and outcome measures across the spectrum of kidney disease based on robust multi-stakeholder methodology to identify shared priorities among patients, caregivers, clinicians and other relevant stakeholders. Separate core outcome sets have been identified for patients treated with haemodialysis, transplantation and PD. Despite the great importance placed on life participation by participants in the SONG-PD initiative, there currently exists no content valid, robustly developed and widely used measure for assessment of life participation among patients treated with PD. To this end, in this issue of Peritoneal Dialysis International, Cheetham et al. report the results of a SONG workshop focused on establishing the essential characteristics of a life participation patientreported outcome measure (PROM) to be used as a clinical trial outcome for patients receiving PD. The workshop included 56 participants from 15 countries, although the majority were from Australia and the United Kingdom. Importantly, 17 participants were patients or care partners; the inclusion of patients and care partners in workshops focused on dialysis outcomes and guidelines is increasingly common and a critical step in ensuring patient centredness of guidelines and recommendations stemming from such meetings. The core of the workshop programme was discussion arising from six online breakout groups tasked to identify content considerations, validity factors and feasibility characteristics of a life participation measure for PD. Four main themes were identified from thematic analysis of transcripts from the workshop. These included (1) that a life participation measure should capture ‘reconfiguring expectations of daily living’, (2) ‘ensuring broad applicability and interpretability’ of the measure, (3) the importance of the measure ‘capturing transitions between modalities and how they affected life participation’ and (4) ‘maximising feasibility of implementation’ of the measure. In addition to these core themes, the authors also identified a few consensus recommendations for the development of a life participation measure for PD. First, all participants (patients, caregivers and health professionals) emphasised the individuality of life participation, namely that which activities are important to live a full life differ