RecruitingNot ApplicableNCT05596760

Promoting Goals-of-Care Discussions for Patients With Memory Problems and Their Caregivers

Hybrid Efficacy-effectiveness Trial to Promote Goals-of-care Discussions for Patients With Alzheimer's Disease and Related Dementias and Their Family Caregivers

Sponsor

University of Washington

Enrollment

1,800 participants

Start Date

Sep 11, 2023

Study Type

INTERVENTIONAL

Conditions

Quality of Life Dementia Cognitive Dysfunction Huntington Disease Alzheimer Disease Dementia, Vascular Lewy Body Disease Chronic Disease Frontotemporal Lobar Degeneration Cognitive Aging Mixed Dementias Creutzfeldt-Jakob Syndrome Palliative Care, Patient Care Health Care Quality, Access, and Evaluation Patient Care Health Communication Patient Care Planning

Summary

The goal of this clinical trial is to improve communication among clinicians, patients with memory problems, and their family members. We are testing a way to help clinicians have better conversations to address patients' goals for their healthcare. To do this, we created a simple, short guide called the "Jumpstart Guide." The goal of this research study is to show that using this kind of guide is possible and can be helpful for patients and their families. Patients' clinicians may receive a Jumpstart Guide before the patient's clinic visit. Researchers will compare patients whose clinician received a Jumpstart Guide to patients whose clinician did not receive a guide to see if more patients in the Jumpstart Guide group had conversations about the patient's goals for their healthcare. Patients and their family members will also be asked to complete surveys after the visit with their clinician.

Eligibility

Min Age: 18 Years

Inclusion Criteria13

PATIENTS
Be cared for as an outpatient at a UW Medicine clinic
years of age or older
Have an ICD-10 code for ADRD documented in the EHR within the prior two years
If patients are cared for in a primary care setting within UW Medicine or by a geriatrician or neurologist, only a diagnosis of ADRD is required for eligibility.
If patients have ADRD and are not followed by a primary care clinician at UW Medicine but are followed by a subspecialist, eligible patients must also have an ICD-10 code for one or more of seven chronic conditions used by the Dartmouth Atlas, relevant for the specialist they see, to ensure that goals-of care discussions are applicable for these specialists in the care of the enrolled patient. These conditions by specialist are: malignant cancer/leukemia (oncologist), chronic pulmonary disease (pulmonologist), coronary artery disease or heart failure (cardiologist), chronic liver disease (hepatologist), chronic renal disease (nephrologist), and diabetes with end-organ damage (endocrinologist).
Identified (via the patient or the EHR) as the person most involved in care for an eligible patient in the trial
years of age or older
English language proficiency
Physician or advance practice provider caring for older adults within UW Medicine clinics
years of age or older
English language proficiency
(Interviews) Identified as clinician of record for an enrolled patient in the trial and received a Jumpstart guide

Exclusion Criteria12

restricted status, legal or risk management concerns
without capacity to complete informed consent procedures and without a legal surrogate to enroll them (for the survey component or qualitative interviews)
non-English speaking (for the survey component or qualitative interviews)
patients of a clinician who has opted-out of the study will not be eligible for the study under the care of that clinician but may be eligible if they also receive care from another clinician in a participating clinic
FAMILY MEMBERS
legal or risk management concerns
psychological illness or morbidity preventing completion of study materials
physical or mental limitations preventing completion of study materials
non-English speaking
Not all patients will have an eligible family member to enroll.
CLINICIANS
legal or risk management concerns

Interventions

BEHAVIORALJumpstart Guide

The Jumpstart Guide is a communication-priming intervention for clinicians, patients and their families in the outpatient setting. The intervention's goal is to prompt clinicians to provide, during a scheduled (non-urgent) clinic visit, standard of care which includes a discussion with patients (and/or their LNOKs) about their goals of care. It is designed to promote and guide these discussions for older adults with memory problems through suggestions and tips on the Jumpstart Guide.