Clinical trial NCT04225416: Perceptions of Illness Severity, Treatment Goals and Life Expectancy
Official title: The ePISTLE Study: Perceptions of Illness Severity, Treatment Goals and Life Expectancy
Study type: OBSERVATIONAL
Overall status: UNKNOWN
Conditions: Hemodialysis
Peritoneal Dialysis
Keywords: hemodialysis
peritoneal dialysis
Lead sponsor: Imperial College London
Sponsor class: OTHER
First posted: 2020-01-13
Enrollment: 120
Sex: ALL
Minimum age (years): 18
Maximum age (years): 100
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: COHORT
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Dialysis patients

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.

Eligibility criteria: 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

Primary outcomes:
measure: 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.
timeFrame: Through study completion, an average of 2 years
Secondary outcomes:
measure: Number of dialysis patients who are more optimistic about prognosis and transplant candidacy than their nephrologists
timeFrame: Through study completion, an average of 2 years
measure: Patients' prognostic expectations are associated with their treatment preferences
timeFrame: Through study completion, an average of 2 years
measure: Number of patients with dialysis associated symptoms as assessed by IPOS Renal (https://pos-pal.org/maix/ipos-renal-in-english.php).
timeFrame: 7 days
Other outcomes:
Locations:
city: London
country: United Kingdom
facility: Imperial College Healthcare NHS Trust
Study officials:
affiliation: Imperial College London
name: Edwina Brown, MBChB
role: PRINCIPAL_INVESTIGATOR
References: