Honoring Individual Goals and Hopes: Implementing Advance Care Planning for Persons With Kidney Disease on Dialysis

NCT05324878 | Completed

• 2 other identifiers: NCR213481DI-2020C2-20362
• Study Type: observational
• Target: 55
• Locations: 1 country
• Sites: 3

Brief Summary

The PCORI HIGHway project name embodies its goal: the way to "Honor Individuals Goals and Hopes". HIGHway trains and supports dialysis center social workers and nurses to communicate with their patients about their hopes and goals for their future care plans. This process, known as advance care planning (ACP), helps relieve patient concerns about the future, lays the foundation for better goal-concordant care at the end of life, and fosters deeper connection between patient and the dialysis care team. The HIGHway project will provide training and ongoing coaching to social workers and other change team members at 50-60 dialysis centers throughout the US. The goal is to integrate advance care planning conversations between dialysis patients and their health care team into the ongoing workflow of dialysis centers. The project is funded by the Patient Centered Outcomes Research Institute (PCORI), a non-profit organization chartered by Congress to fund projects to promote patient-centered care.

Conditions

Kidney Diseases; Kidney Failure

Keywords

advance care planning; social workers; implementation research; patient-centered care; shared decision-making; nurses

Outcome Measures

Primary Outcomes (3)

• Advance care conversations attempted, held, documented

  Patient/Provider Outcome: Self-report of number of conversations social worker has with dialysis patients Self -report of number of conversations social worker has with dialysis patients.

  During the implementation of the project, one report, year 1

• Fidelity of ACP conversations per the HIGHway process taught in trainings

  Each social worker will record one ACP conversation with a patient and be assessed on their fidelity to the ACP conversation checklist

  Through implementation completion, one in year 1

• Relevance and Significance of ACP intervention for patients

  Survey given to patients after an ACP conversation to assess relevance and significance of the conversation to their care

  Through implementation completion, one in year 1

Secondary Outcomes (4)

• Implementation Outcome: Appropriateness

  After finish implementation, one time, year 1

• Implementation Outcome: Acceptability

  Immediately after finish implementation, one in year 1

• Characteristics of HIGHway Approach

  Immediately after finish implementation, one in year 1

• Feasibility of HIGHway

  Immediately after finish implementation, one in year 1

Study Arms (3)

Population 1: Social workers/Nurses

Social workers and nurses working at participating dialysis centers. Dialysis centers will be selected based on demographic data of the center (urbanicity, population served, size of center, patients treated, etc) to provide for diversity of centers participating.

Other: Training

Population 2a: Patients receiving care at the dialysis center

2a. When an advance care planning conversation takes place, social worker/nurse will provide patient with an informational flyer about the HIGHway project and a postcard.

Population 2b: Patients receiving care at the dialysis center

2b. Social worker/nurse will identify one patient willing to have a recording made of advance care planning conversation between social worker/nurse and patient.

Interventions

Training OTHER

Social workers/nurses participants are agreeing to participating in the training program (3 sessions of 2 hours over a period of six weeks - one session every 2 weeks), follow up training sessions (occurring monthly), mentorship calls with social worker faculty on the project team, recording one conversation between social worker and a patient for quality improvement purposes, and completing evaluation of the project interventions (5-minute questionnaire after each education session, 15-minute questionnaire at end of participation in project).

Population 1: Social workers/Nurses

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

There are three separate study populations for this study, with procedures and instruments specific to the population Population 1: Social workers/nurses and dialysis centers will be selected based on demographic data of the center (urbanicity, population served, size of center, patients treated, etc) to provide for diversity of centers participating. Population 2: Patients receiving care at the dialysis center where participating social worker/nurses works. 2a. When an advance care planning conversation takes place, social worker/nurse will provide patient with an informational flyer about the HIGHway project and a postcard. 2b. Social worker/nurse will identify one patient willing to have a recording made of advance care planning conversation between social worker/nurse and patient.

You may qualify if:

• Social worker or nurse must work at a participating dialysis center.
• Social worker, nurse and patients must speak, read and write English.
• All participants must be 18 y old.
• Social workers and nurses Commitment to attend initial 6-h training and booster sessions.

You may not qualify if:

• Under 18 years old
• Unable to speak, read and write English

Sponsors & Collaborators

• George Washington University: lead
• Medical Technology and Practice Patterns Institute: collaborator
• Western Carolina University: collaborator
• University of New Mexico: collaborator

Study Sites (3)

DaVita World Headquarters

Denver, Colorado, 80202, United States

Location

American Renal Associates LLC Corporate Office

Beverly, Massachusetts, 01915, United States

Location

Fresenius Medical Care Corporate Headquarters

Waltham, Massachusetts, 02451, United States

Location

Related Publications (2)

• Rodriguez de Sosa GM, Thamer M, Anderson E, Unruh ML, Lupu DE. Patient-Centered Advance Care Planning in Dialysis: The HIGHWay (Honor Individual Goals and Hopes Way) Initiative. Kidney360. 2025 Apr 25;6(6):957-967. doi: 10.34067/KID.0000000767.

  PMID: 40279178 DERIVED

• Rodriguez de Sosa G, Nicklas A, Thamer M, Anderson E, Reddy N, Stevelos J, Germain MJ, Unruh ML, Lupu DE. Implementing Advance Care Planning for dialysis patients: HIGHway project. BMC Palliat Care. 2022 Jul 16;21(1):129. doi: 10.1186/s12904-022-01011-5.

  PMID: 35841019 DERIVED

Related Links

• PCORI Website Project Page

MeSH Terms

Conditions

Kidney Diseases; Renal Insufficiency

Condition Hierarchy (Ancestors)

Urologic Diseases; Female Urogenital Diseases; Female Urogenital Diseases and Pregnancy Complications; Urogenital Diseases; Male Urogenital Diseases

Study Officials

• Dale Lupu, PhD

  George Washington University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: March 11, 2022
• First Posted: April 12, 2022
• Study Start: September 1, 2021
• Primary Completion: May 31, 2024
• Study Completion: July 31, 2024
• Last Updated: November 20, 2024

Record last verified: 2024-11

Data Sharing

• IPD Sharing: Will not share

Locations

US (3)