Perceptions of Illness Severity, Treatment Goals, and Life Expectancy: The ePISTLE Study

Abstract

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Gender Differences in Experiences and Expectations of Hemodialysis in a Frail and Seriously Unwell Patient Population

“…This is a mixed methods study. In-depth structured interviews were conducted as part of the ePISTLE study (Perceptions of Illness Severity, Treatment Goals and Life Expectancy [22]).…”

“…This is a mixed methods study. In-depth structured interviews were conducted as part of the ePISTLE study (Perceptions of Illness Severity, Treatment Goals and Life Expectancy 22 ). Ethical approval was granted (18/LO/1386) and the study was registered on clinicaltrials.gov (NCT04225416).…”

“…were considered seriously unwell and invited to take part in the study. 90 people were eligible and 54 chose to take part [22]. Seven participants (13%) chose to complete the questionnaire independently and 47 (87%) preferred a structured interview, using the questionnaire as the framework for discussion.…”

“…Symptom burden was assessed using the IPOS-Renal Symptom survey, a validated patient-reported outcomes tool [24] All interviews were transcribed verbatim at the time of interview. Participants' named nurse, and lead doctor were also asked to complete the IPOS-Renal Symptom survey at the time of interview [22].…”

“…Control of symptoms was prioritised highly, as was a desire to live an "active life": maintaining activity levels and to have the energy and stamina needed to complete their daily goals. Transplantation as a goal of dialysis was also frequently mentioned, despite participants in this study being selected for having a high mortality risk and very few actually being listed for transplantation at the time of study [22].…”