Perceptions of Illness Severity, Treatment Goals and Life Expectancy

Study Overview
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Brief Summary
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This study is exploring symptom burden, health experiences and expectations of treatment and survival of seriously ill dialysis patients and their physicians.

Detailed Description
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Sharing and communicating information with patients is an integral part of medical care, yet research has shown that disparities exist between physicians and patient perceptions of illness severity. In renal medicine, along with many other specialties, expected prognosis can affect treatment offered.Thus appreciating and understanding one's prognosis can influence patients and relatives' expectations for treatment and guide discussions regarding quality of life. Previous work has highlighted disparities in the United States between expectations of survival of seriously ill haemodialysis patients and their physicians. The investigators plan to repeat this study within the United Kingdom, to see whether similar issues occur and to elucidate current practice on discussions of prognosis, symptom burden and transplant candidacy. The investigators hope to identify where care can be improved and to enable patients to better make informed decisions on treatment and goals of care. Part one of the study is to repeat this study in haemodialysis patients in the United Kingdom. This has been completed and published (2021) at https://www.kireports.org/article/S2468-0249(21)00103-0/fulltext. Part two of the study is to extend the study to peritoneal dialysis patients in the United Kingdom.

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

Conditions
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Hemodialysis, Peritoneal Dialysis

Intervention / Treatment
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* Other: Questionnaire/Structured Interview


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: Haemodialysis patients 18-100 years old, with a predicted mortality risk of >20% in the next year, their close person and staff members (nurse and doctor) caring for the patient. Peritoneal dialysis patients 18-100 years old, with a predicted mortality risk of >20% in the next year, their close person and staff members (nurse and doctor) caring for the patient. Exclusion Criteria: Patients on home haemodialysis

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 100 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Hemodialysis patients<br>Patients undergoing hemodialysis | Other: Questionnaire/Structured Interview<br>* No intervention<br>|
| Peritoneal dialysis patients<br>Patients undergoing peritoneal dialysis | Other: Questionnaire/Structured Interview<br>* No intervention<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Current practice regarding discussion of prognosis with seriously ill dialysis patients, to better understand the dissonance between physician and patient beliefs on prognosis, transplant candidacy and goals of care. | Completion of questionnaire or structured interview | Through study completion, an average of 2 years | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Number of dialysis patients who are more optimistic about prognosis and transplant candidacy than their nephrologists | Completion of questionnaire or structured interview | Through study completion, an average of 2 years | 
| Patients' prognostic expectations are associated with their treatment preferences | Completion of questionnaire or structured interview | Through study completion, an average of 2 years | 
| Number of patients with dialysis associated symptoms as assessed by IPOS Renal (https://pos-pal.org/maix/ipos-renal-in-english.php). | Completion of questionnaire or structured interview | 7 days | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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hemodialysis, peritoneal dialysis