Experiences and perspectives of patients and their caregivers on gastrointestinal symptoms in peritoneal dialysis: Workshop report

Ashik Hayat; David W Johnson; Karine Manera; Andrea K Viecelli; Martin Wilkie; Jenny Shen; Angela Yee-Moon Wang; Htay Htay; Allison Jaure; Yeoungjee Cho; Rachael Walker

doi:10.1177/08968608251361298

Experiences and perspectives of patients and their caregivers on gastrointestinal symptoms in peritoneal dialysis: Workshop report

Perit Dial Int. 2025 Jul 29:8968608251361298. doi: 10.1177/08968608251361298. Online ahead of print.

Authors

Ashik Hayat^{1

2

3}, David W Johnson^{1

2

3}, Karine Manera^{4

5}, Andrea K Viecelli^{1

2

3}, Martin Wilkie⁶, Jenny Shen⁷, Angela Yee-Moon Wang^{8

9

10}, Htay Htay¹⁰, Allison Jaure^{4

5}, Yeoungjee Cho^{1

2

3}, Rachael Walker¹¹

Affiliations

¹ Department of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, Australia.
² Australasian Kidney Trials Network, The University of Queensland, Brisbane, Australia.
³ Translational Research Institute, Brisbane, Australia.
⁴ Sydney School of Public Health, The University of Sydney, New South Wales, Australia.
⁵ Centre for Kidney Research, The Children's Hospital at Westmead, New South Wales, Australia.
⁶ Sheffield Teaching Hospitals NHS Foundation Trust, UK.
⁷ The University of California, Los Angeles, USA.
⁸ The University of Hong Kong Queen Mary Hospital, Hong Kong.
⁹ Duke-National University of Singapore (NUS), Singapore.
¹⁰ Singapore General Hospital, Singapore.
¹¹ Faculty of Medical and Health Science Waipapa Taumata Rau, The University of Auckland, New Zealand.

PMID: 40728243
DOI: 10.1177/08968608251361298

Abstract

IntroductionGastrointestinal (GI) symptoms are common and can be debilitating for patients receiving peritoneal dialysis (PD). However, they are rarely reported and there is no widely accepted or validated tool for measuring GI health in these patients to facilitate shared decision making.MethodsAn online consensus workshop was conducted to describe the experiences and perspectives about the impacts of GI symptoms in patients receiving PD and their caregivers and suggestions for measuring GI symptoms in clinical practice and research. A diverse range of patients currently receiving PD or who received PD within the past 5 years and their caregivers from different regions were recruited. After the initial presentation, small-group facilitated discussions were conducted similarly to focus groups, followed by a large-group summarisation of the workshop findings. Transcripts were thematically analysed using an inductive approach informed by grounded theory.Summary of the workshopThirty-five participants attended the online workshop, including 32 patients and 3 caregivers from 7 countries. Four themes were identified: restricting the ability to live freely (inability to predict and prepare, suffering from severe and disruptive symptoms), persistent anguish and struggle (living in fear, isolated by burden), uncertainty about healthcare management (inadequate education and information, lack of individualised care, experimenting to find solutions), measuring GI health in a relevant and robust manner (enabling comprehensive symptom monitoring, individualising frequency of symptom recording, recommending user-friendly and innovative tools).ConclusionThis study demonstrated a high burden of GI symptoms in patients receiving PD. These symptoms were unpredictable in their onset, threatening patients' wellbeing and quality of life. A feasible measure of GI symptoms needs to be developed and implemented to inform treatment decisions and aid in consistent reporting in PD trials.

Keywords: Gastrointestinal (GI) symptoms; kidney failure; outcomes; peritoneal dialysis (PD).