Living with encapsulating peritoneal sclerosis (EPS): the patient's perspective.
BACKGROUND
Although relatively rare, encapsulating peritoneal sclerosis (EPS) is nonetheless a major concern within the renal community. Risk of developing EPS is associated with long-term peritoneal dialysis (PD). High mortality was previously reported, although surgery has since improved outcomes. Research into EPS focuses on imaging and early detection methods, genetics, biomarkers and preventive strategies. No previous studies have examined patients' experiences of EPS.


OBJECTIVE
The aim of the present study was to explore the experience of patients who have undergone surgery for EPS in one center in the North of England.


METHODS
A qualitative phenomenological approach, involving in-depth interviews, was adopted. Nine participants were recruited out of a total of 18 eligible. Most participants were interviewed twice over a 12-month period (October 2009 to October 2010).


METHODS
Interpretive data analysis was conducted, following the philosophical tradition of hermeneutics, to draw out themes from the data. Data collection and analysis took place concurrently and participants were sent a summary of their first interview to allow a period of reflection prior to the subsequent interview.


RESULTS
EPS presented the most serious challenge participants had faced since developing chronic kidney disease (CKD). Three major themes were identified, each with subcategories. The key issues for patients were related to identification of early symptoms and lack of understanding. The patients' sense of 'not being heard' by health care professionals led to a loss of trust and enhanced their feelings of uncertainty. The enormity of the surgery, the suffering, and what they had to endure had an enormous impact, but an overriding aspect of this experience was also the loss they felt for their independence and for the PD therapy over which they had control.


CONCLUSIONS
The findings of this study highlight a number of important issues relevant to clinical practice, including lack of information and understanding of EPS, particularly its early symptoms At the time patients transfer from peritoneal to hemodialysis, the provision of adequate information about the risks and potential early signs of EPS may not only improve their experiences, but may also assist in early detection.
Manchester University, Manchester, UK; Department of Renal Medicine Manchester Royal Infirmary (CMFT), Manchester, UK; University of Central Lancashire, Preston, UK; and University Hospital of South Manchester NHSFT, Manchester, UK.
Helen
H
Hurst
Manchester University, Manchester, UK; Department of Renal Medicine Manchester Royal Infirmary (CMFT), Manchester, UK; University of Central Lancashire, Preston, UK; and University Hospital of South Manchester NHSFT, Manchester, UK.
Angela
A
Summers
Manchester University, Manchester, UK; Department of Renal Medicine Manchester Royal Infirmary (CMFT), Manchester, UK; University of Central Lancashire, Preston, UK; and University Hospital of South Manchester NHSFT, Manchester, UK.
Kinta
K
Beaver
Manchester University, Manchester, UK; Department of Renal Medicine Manchester Royal Infirmary (CMFT), Manchester, UK; University of Central Lancashire, Preston, UK; and University Hospital of South Manchester NHSFT, Manchester, UK.
Ann-Louise
AL
Caress
D000222:Adaptation, Physiological; D000223:Adaptation, Psychological; D042241:Early Diagnosis; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007407:Interviews as Topic; D007676:Kidney Failure, Chronic / Q000175:diagnosis / Q000523:psychology / Q000628:therapy*; D008297:Male; D008875:Middle Aged; D010531:Peritoneal Dialysis, Continuous Ambulatory / Q000009:adverse effects* / Q000379:methods; D056627:Peritoneal Fibrosis / Q000209:etiology* / Q000523:psychology* / Q000601:surgery; D036301:Qualitative Research; D006435:Renal Dialysis / Q000009:adverse effects / Q000379:methods*; D018570:Risk Assessment; D012494:Sampling Studies; D012720:Severity of Illness Index; D018434:Sickness Impact Profile; D015996:Survival Rate; D013997:Time Factors
EPS; patient experience; qualitative