Abstract

Background: Ascites secondary to cancer has a dramatic effect on all aspects of patients’ lives. Healthcare professional surveys have shown that there is considerable variation in the management of ascites. Aim: To explore patients’ experiences of living with ascites and its management. Design: Qualitative research study using digitally recorded semi-structured interviews. Setting/participants: Twelve adult patients with ascites who, between them, had undergone 47 paracentesis procedures in hospitals and/or specialist palliative care units in Southern England. Results: Symptoms were pain, discomfort and effects on appetite, digestion, breathing and mobility. All participants had experienced paracentesis in hospital or a specialist palliative care unit, and these experiences differed. They had views on what constituted a good procedure: setting, competence and pain control. They reported rapid improvement of symptoms after paracentesis. While some did not like the idea of a semi-permanent drain, those with them appreciated the convenience and not having to wait for repeated admissions or the recurrence of symptoms. The interval between ascitic taps was seen as a useful guide as to when a semi-permanent drain should be offered. Participants had mixed views on participation in a hypothetical randomised controlled trial of repeated ascitic taps versus semi-permanent drains. Conclusion: Patients’ experiences of ascites management are variable and could be improved. These experiences can inform healthcare professionals. They have views on when semi-permanent drains should be offered and future research.

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