Perceptions of Illness Severity, Treatment Goals and Life Expectancy

Recruiting

• Conditions: Hemodialysis; Peritoneal Dialysis
• Interventions: Other: Questionnaire/Structured Interview

• Registration Number: NCT04225416
• Lead Sponsor: Imperial College London

Brief Summary

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

Detailed Description

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.

Study Timeline

• Study Start: 2018-11-16
• Study First Submitted: 2020-01-06
• Study First Submitted QC: 2020-01-08
• Study First Posted: 2020-01-13
• Status Verified: 2022-10
• Last Update Submitted: 2022-10-19
• Last Update Posted: 2022-10-20
• Primary Completion: 2024-11-01
• Study Completion: 2024-11-01

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 120

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

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Hemodialysis patients	Questionnaire/Structured Interview	Patients undergoing hemodialysis
Peritoneal dialysis patients	Questionnaire/Structured Interview	Patients undergoing peritoneal dialysis

Primary Outcome Measures

Name	Time	Method
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.	Through study completion, an average of 2 years	Completion of questionnaire or structured interview

Secondary Outcome Measures

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

Trial Locations

Locations (1)

Imperial College Healthcare NHS Trust; 🇬🇧 London, United Kingdom