A Communication Tool to Assist Older Adults Facing Dialysis Choices

NCT ID: NCT04466865

Last Updated: 2025-12-26

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

407 participants

Study Classification

INTERVENTIONAL

Study Start Date

2020-11-02

Study Completion Date

2025-11-10

Brief Summary

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The purpose of this study is to test the effect of the "Best Case/Worse Case" (BC/WC) communication tool on receipt of palliative care and intensity of treatment at the end of life, quality of life, and quality of communication for older patients with end-stage renal disease (ESRD) receiving outpatient care at ten nephrology clinics. The intervention was developed and tested with acute care surgical patients at the University of Wisconsin (UW) and is now being testing to see if the intervention will work in a different setting.

The intervention will be tested with 320 older adults who have end-stage renal disease (ESRD) and are receiving care from a nephrologist enrolled in the study. Randomly assigned nephrologists within each site will receive the intervention (training to use the BC/WC tool) or to be in the waitlist control, meaning that they will not be offered BC/WC training until the end of the study, when all participants have been enrolled. Participants will be on follow up with surveys and chart review for up to two years after study enrollment. Caregivers will also be invited to participate and complete surveys.

Detailed Description

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This study will test the effect of the Best Case/Worst Case intervention on receipt of palliative care and intensity of treatment at the end of life, quality of life, and quality of communication for older patients with end-stage renal disease (ESRD). This multi-site cluster randomized trial will enroll 320 participants who are making a dialysis initiation decision and receive care from a nephrologist trained to use the Best Case/Worst Case tool, or care from a nephrologist who has not been trained to use this tool (usual care). Randomly assigned nephrologists within each site will receive the intervention or waitlist control (upon study completion). Participants will be on follow up for up to two years after study enrollment via regular surveys and chart review. This study has three aims:

Aim 1: To test the effect of the Best Case/Worst Case intervention on (1) receipt of palliative care and (2) intensity of treatment at the end of life for older patients with ESRD. Chart reviews will be used to determine whether participants have received at least one outpatient or inpatient palliative care consultation within 12 months of enrollment in the study. These consultations must be clearly marked as palliative care, provided by a clinician with palliative care training and have documented discussion of goals clarification, advance care planning, symptom management, coping, spiritual needs, or end-of-life care. To measure intensity of treatment received at the end of life, it will be determined whether participants have had an ICU admission within 30 days of death as a primary outcome and ICU admission, emergency room (ER) visit, or hospital admission within 30 days of death as a composite secondary outcome.

Aim 2: To test the effect of the Best Case/Worst Case intervention on quality of life. The primary outcome for Aim 2 is quality of life as measured by the Functional Assessment of Chronic Illness Therapy -Palliative Care (FACIT-Pal Version 4) at baseline, and every three months for up to 2 years after study enrollment. The hypothesis is that the overall quality of life will decline over time as participants become more infirm. The average change in health-related quality of life over time which has been shown to decline less with the receipt of concurrent palliative care will be compared.

Aim 3: To test the effect of the Best Case/Worst Case intervention on the quality of communication. To evaluate participant's assessment of nephrologist communication, the Quality of Communication (QOC) scale developed by Randy Curtis will be used. Unlike other measurements of physician communication that have high ceiling effects and limited ability to measure change, the QOC includes 7 items specific to end-of-life communication, which, if not performed by the clinician, are scored as zero. This will allow us to discriminate between quality of communication attributable to participant satisfaction (with high ceiling effects) versus content.

Conditions

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Palliative Care Kidney Failure, Chronic Decision Making Decision Support Techniques Renal Dialysis Dialysis Kidney Diseases Nephrologists Decision Aid End of Life End-Stage Renal Disease Late-Stage Renal Disease Communication Life-Supporting Treatments

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

HEALTH_SERVICES_RESEARCH

Blinding Strategy

DOUBLE

Participants Outcome Assessors

Study Groups

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Best Case/Worst Case communication tool

The participant's enrolled nephrologist will have completed training on the Best Case/Worst Case communication tool and will be encouraged to use it with the participant.

Group Type EXPERIMENTAL

Best Case/Worst Case communication tool training

Intervention Type OTHER

The communication tool promotes dialogue and patient deliberation, and supports shared decision making in the context of kidney disease. Building on a conceptual model of shared decision-making proposed and the practice of scenario planning the intervention is designed to lead to a discussion of participants preferences and consideration of outcomes.

The nephrologist verbally describes the "best case," "worst case," and "most likely" outcomes for each treatment option-incorporating rich narrative from clinical experience and translation of probabilistic information-while drawing a diagram of those options. The nephrologist also writes details about each option on the diagram. The narrative and graphic help family and patients formulate and express preferences.

Usual Care

Usual care conversations are typically focused on mode and timing of dialysis, management of electrolytes and scheduling of laboratory testing. Conservative management or a treatment option of "no dialysis" is rarely mentioned.

Group Type NO_INTERVENTION

No interventions assigned to this group

Interventions

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Best Case/Worst Case communication tool training

The communication tool promotes dialogue and patient deliberation, and supports shared decision making in the context of kidney disease. Building on a conceptual model of shared decision-making proposed and the practice of scenario planning the intervention is designed to lead to a discussion of participants preferences and consideration of outcomes.

The nephrologist verbally describes the "best case," "worst case," and "most likely" outcomes for each treatment option-incorporating rich narrative from clinical experience and translation of probabilistic information-while drawing a diagram of those options. The nephrologist also writes details about each option on the diagram. The narrative and graphic help family and patients formulate and express preferences.

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Estimated glomerular filtration rate (eGFR) of less than or equal to 24
* Not currently on dialysis (participants are eligible if they have had intermittent dialysis in the past or have dialysis access in place but are not currently on dialysis)
* Participants must meet one or more of the following criteria: age greater than 80, evidence from the medical record that the patient has comorbid illness such that the modified Charlson score is 4 or greater, or a negative response to the standard "Surprise Question" ("Would you be surprised if this patient died in the next year?") from the participant's nephrologist.

Exclusion Criteria

* Currently on dialysis
* Lack decision-making capacity
* Do not speak English
Minimum Eligible Age

60 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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National Institute on Aging (NIA)

NIH

Sponsor Role collaborator

University of Pittsburgh

OTHER

Sponsor Role collaborator

University of Vermont

OTHER

Sponsor Role collaborator

Johns Hopkins University

OTHER

Sponsor Role collaborator

University of Colorado, Denver

OTHER

Sponsor Role collaborator

Icahn School of Medicine at Mount Sinai

OTHER

Sponsor Role collaborator

University of Washington

OTHER

Sponsor Role collaborator

West Virginia University

OTHER

Sponsor Role collaborator

Columbia University

OTHER

Sponsor Role collaborator

Medical College of Wisconsin

OTHER

Sponsor Role collaborator

The Palliative Care Research Cooperative Group

UNKNOWN

Sponsor Role collaborator

Northwestern University

OTHER

Sponsor Role collaborator

University of Wisconsin, Madison

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Margaret L Schwarze, MD, MPP, FACS

Role: PRINCIPAL_INVESTIGATOR

University of Wisconsin, Madison

Amar Bansal, MD

Role: PRINCIPAL_INVESTIGATOR

University of Pittsburgh

Katharine Cheung, MD, PhD

Role: PRINCIPAL_INVESTIGATOR

University of Vermont

Deidra Crews, MD

Role: PRINCIPAL_INVESTIGATOR

Johns Hopkins University

Katie Colborn, PhD

Role: PRINCIPAL_INVESTIGATOR

University of Colorado, Denver

Holly Koncicki, MD

Role: PRINCIPAL_INVESTIGATOR

Icahn School of Medicine at Mount Sinai

Jean Kutner, MD

Role: PRINCIPAL_INVESTIGATOR

University of Colorado, Denver

Daniel Lam, MD

Role: PRINCIPAL_INVESTIGATOR

University of Washington

Alvin Moss, MD

Role: PRINCIPAL_INVESTIGATOR

West Virginia University

Maya Rao, MD

Role: PRINCIPAL_INVESTIGATOR

Columbia University

Dawn Wolfgram, MD

Role: PRINCIPAL_INVESTIGATOR

Medical College of Wisconsin

Jeniann Yi, MD

Role: PRINCIPAL_INVESTIGATOR

University of Colorado, Denver

Tamara Isakova, MD, MMSc

Role: PRINCIPAL_INVESTIGATOR

Northwestern University

Locations

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University of Colorado, Denver

Denver, Colorado, United States

Site Status

Northwestern University

Chicago, Illinois, United States

Site Status

Johns Hopkins University

Baltimore, Maryland, United States

Site Status

University of Michigan

Ann Arbor, Michigan, United States

Site Status

Columbia University

New York, New York, United States

Site Status

Mount Sinai School of Medicine

New York, New York, United States

Site Status

University of Pittsburgh

Pittsburgh, Pennsylvania, United States

Site Status

Department of Medicine, University of Vermont

Burlington, Vermont, United States

Site Status

University of Washington

Seattle, Washington, United States

Site Status

West Virginia University

Morgantown, West Virginia, United States

Site Status

Medical College of Wisconsin

Milwaukee, Wisconsin, United States

Site Status

Countries

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United States

References

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Schell JO, Patel UD, Steinhauser KE, Ammarell N, Tulsky JA. Discussions of the kidney disease trajectory by elderly patients and nephrologists: a qualitative study. Am J Kidney Dis. 2012 Apr;59(4):495-503. doi: 10.1053/j.ajkd.2011.11.023. Epub 2012 Jan 4.

Reference Type BACKGROUND
PMID: 22221483 (View on PubMed)

Ladin K, Lin N, Hahn E, Zhang G, Koch-Weser S, Weiner DE. Engagement in decision-making and patient satisfaction: a qualitative study of older patients' perceptions of dialysis initiation and modality decisions. Nephrol Dial Transplant. 2017 Aug 1;32(8):1394-1401. doi: 10.1093/ndt/gfw307.

Reference Type BACKGROUND
PMID: 27576590 (View on PubMed)

Haug K, Buffington A, Zelenski A, Hanlon BM, Stalter L, Kwekkeboom KL, Rathouz P, Bansal AD, Cheung K, Crews D, Frazier R, Koncicki H, Lam D, Moss A, Rao M, Wolfgram DF, Yi J, Brill C, Kendrick R, Campbell TC, Jhagroo R, Schwarze M. Best Case/Worst Case: protocol for a multisite randomised clinical trial of a scenario planning intervention for patients with kidney failure. BMJ Open. 2022 Nov 3;12(11):e067258. doi: 10.1136/bmjopen-2022-067258.

Reference Type DERIVED
PMID: 36328383 (View on PubMed)

Provided Documents

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Document Type: Statistical Analysis Plan

View Document

Document Type: Informed Consent Form

View Document

Other Identifiers

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1R01AG065365-01

Identifier Type: NIH

Identifier Source: secondary_id

View Link

A539750

Identifier Type: OTHER

Identifier Source: secondary_id

SMPH/SURGERY

Identifier Type: OTHER

Identifier Source: secondary_id

Protocol Version 1/23/2025

Identifier Type: OTHER

Identifier Source: secondary_id

2019-1074

Identifier Type: OTHER

Identifier Source: secondary_id

2022-0193

Identifier Type: -

Identifier Source: org_study_id