Perceptions of Illness Severity, Treatment Goals and Life Expectancy

Hemodialysis Clinical Trial

— ePISTLE  

Official title:

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

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT04225416
• Other study ID #: 18HH4336
• Status: Recruiting
• Start date: November 16, 2018
• Est. completion date: November 1, 2024

Study information

• Verified date: October 2022
• Source: Imperial College London
• Contact: Hannah Beckwith, MBChB
• Phone: 02033131000
• Email: hannah.beckwith[@]nhs.net
• Is FDA regulated: No
• Study type: Observational

Clinical Trial Summary

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

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.

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 120
• Est. completion date: November 1, 2024
• Est. primary completion date: November 1, 2024
• Accepts healthy volunteers: No
• Gender: All
• Age group: 18 Years to 100 Years

Eligibility

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

Related Conditions & MeSH terms

• Hemodialysis
• Peritoneal Dialysis

Intervention

Other:
• Questionnaire/Structured Interview
No intervention

Locations

Country	Name	City	State
United Kingdom	Imperial College Healthcare NHS Trust	London

Sponsors (1)

Lead Sponsor	Collaborator
Imperial College London

Country where clinical trial is conducted

United Kingdom, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	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	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
Secondary	Patients' prognostic expectations are associated with their treatment preferences	Completion of questionnaire or structured interview	Through study completion, an average of 2 years
Secondary	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