Abstract
Introduction
Gastrointestinal (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.
Methods
An 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 workshop
Thirty-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).
Conclusion
This 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.
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References
Supplementary Material
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