End-of-Life Care in End Stage Renal Disease: Integration of an advance care planning process

Recruiting

• Conditions: pre-dialysis (clinically expected to start dialysis within 12 months) and incident dialysis patients; Renal and Urogenital - Kidney disease

• Registration Number: ACTRN12610000782033
• Lead Sponsor: niversity Hospital Foundation

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Study Start: 2010-09-21
• Last Update Posted: 13 January 2020

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 200

Inclusion Criteria

1.Patients: 1) incident pre end stage renal disease (ESRD) enrolled within the Renal Insufficiency Clinic at the University of Alberta with an expected time to dialysis of less than 12 months* or (2) incident cases of ESRD where patients have just started chronic hemodialysis or peritoneal dialysis within the past 1 month, (3) older than 18 years of age, (4) cognitively able to complete the questionnaires and give informed consent, and (5) able to converse and complete the questionnaires in English.

2.Family: (1) the primary family caregiver; (2) older than 18 years of age; (3) cognitively able to complete the questionnaires and give informed consent; and (4) able to converse and complete the questionnaires in English.

* Nephrologists are required to assess whether the patient is likely to progress to ESRD within 6 or 12 months upon referral to the Renal Insufficiency Clinic ( based on clinical judgment).

Exclusion Criteria

Patients who do not meet criteria as indicated above.

Study & Design

• Study Type: Interventional
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
psychosocial adjustment to illness using the Psychosocial Adjustment to Illness Scale (PAIS)[12 and 24 months after the initial advance care planning conversation.];depression using the Beck depression Inventory-II (BDI),[12 and 24 months after the initial advance care planning conversation.];Hope using the Herth Hope Index (HHI)[12 and 24 months after the initial advance care planning conversation.]

Secondary Outcome Measures

Name	Time	Method
Dying experience using the Quality of Dying and Death (QODD) Interview for all patients deaths[Follow the death of all patients who die within 3 years following completion of the initial advance care planning conversation.];Health-Related Quality of Life using the Kidney Disease Quality of Life (KDQOL) questionnaire.[12 and 24 months after the initial advance care planning conversation.];Cost effectiveness from the participants' perspectives using the Health Utilities Index (HUI3) and 6 Dimensions of the Short form (SF-6D) as indirect utility measures.[12 and 24 months after the initial advance care planning conversation.];coping mechanisms using the Brief Cope questionnaire[12 and 24 months after the initial advance care planning conversation.];Spirituality using the Spiritual Perspective Scale (SPS)[12 and 24 months after the initial advance care planning conversation.]