Helen Hurst1, Angela Summers1, Kinta Beaver1, Ann-Louise Caress1. 1. 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.
Abstract
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. AIMS: 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). ANALYSIS: 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.
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. AIMS: 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). ANALYSIS: 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.
Authors: Declan de Freitas; Antoinette Jordaan; Rosalind Williams; Jane Alderdice; Janet Curwell; Helen Hurst; Alastair Hutchison; Paul E C Brenchley; Titus Augustine; Angela M Summers Journal: Perit Dial Int Date: 2008 May-Jun Impact factor: 1.756
Authors: Edwina A Brown; Wim Van Biesen; Fredric O Finkelstein; Helen Hurst; David W Johnson; Hideki Kawanishi; Roberto Pecoits-Filho; Graham Woodrow Journal: Perit Dial Int Date: 2009 Nov-Dec Impact factor: 1.756
Authors: Angela M Summers; Alferso C Abrahams; M Dominik Alscher; Michiel Betjes; Elisabeth W Boeschoten; Niko Braun; Paul E C Brenchley; Simon Davies; Louese Dunn; Lyda Engelsman; Marien Fieren; Guido Garosi; Eric Goffin; Lara Heuveling; Mario Korte; Bengt Lindholm; Peter Rutherford; Dirk Struijk; Marion Verduijn; Christian Verger; Ralf Westerhuis Journal: Perit Dial Int Date: 2011 May-Jun Impact factor: 1.756
Authors: David W Johnson; Yeoungjee Cho; Brian E R Livingston; Carmel M Hawley; Stephen P McDonald; Fiona G Brown; Johan B Rosman; Kym M Bannister; Kathryn J Wiggins Journal: Kidney Int Date: 2010-03-10 Impact factor: 10.612
Authors: Joerg Latus; Sayed M Habib; Daniel Kitterer; Mario R Korte; Christoph Ulmer; Peter Fritz; Simon Davies; Mark Lambie; M Dominik Alscher; Michiel G H Betjes; Stephan Segerer; Niko Braun Journal: PLoS One Date: 2014-08-29 Impact factor: 3.240