Living with encapsulating peritoneal sclerosis (EPS): the patient's perspective

Area of Science:

• Nephrology
• Patient Experience Research
• Surgical Outcomes

Background:

• Encapsulating peritoneal sclerosis (EPS) is a rare but significant complication of long-term peritoneal dialysis (PD).
• While surgical outcomes have improved, research has primarily focused on medical aspects, neglecting patient experiences.
• No prior studies have explored patient perspectives on living with and undergoing surgery for EPS.

Purpose of the Study:

• To investigate the lived experiences of patients who underwent surgery for EPS.
• To understand the challenges and impacts of EPS and its treatment from the patient's viewpoint.

Main Methods:

• A qualitative phenomenological approach utilizing in-depth interviews.
• Nine participants were interviewed twice over a 12-month period.
• Concurrent data collection and interpretive hermeneutic analysis were employed.

Main Results:

• EPS represented the most severe challenge for patients with chronic kidney disease (CKD).
• Key themes included difficulties in identifying early symptoms, lack of understanding, and feeling unheard by healthcare professionals.
• Patients reported a loss of trust, uncertainty, and a profound loss of independence and control over their PD therapy.

Conclusions:

• Findings underscore the critical need for improved patient information and understanding of EPS, especially its early symptoms.
• Providing adequate information on EPS risks and early signs during the transition from PD to hemodialysis can enhance patient experience and aid early detection.