A Portal-based Advance Care Planning Intervention Among Community-Dwelling Persons Living With Cognitive Impairment (Portal-Voice)

The purpose of this research is to examine the feasibility of using a patient portal based advance care planning (ACP) tool to improve ACP discussions and documentation in persons living with cognitive impairment in outpatient primary care.

Study Overview

• Status: Completed
• Conditions: Advanced Care Planning
• Intervention / Treatment: Behavioral: Advance Care Planning Tool - ACPVoice; Behavioral: Standard of Care for Advance Care Planning

Detailed Description

The goal of this study is to explore whether sending a portal-based ACP tool (called ACPVoice) paired with a motivational message within the patient portal before a routine primary care physician visit can improve ACP discussions and documentation within the electronic health record among persons living with cognitive impairment in outpatient primary care.

• Study Type: Interventional
• Enrollment (Actual): 300
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United States
  • North Carolina
    • Winston-Salem, North Carolina, United States, 27157
      • Wake Forest University Health Sciences

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Older Adult
• Accepts Healthy Volunteers: No

Description

Inclusion Criteria:

• Age 65 years old and older
• Diagnosis of recognized or probable mild cognitive impairment or mild dementia or elevated eRADAR score
• Completed visit with their primary care provider (PCP) within the past 12 months and have upcoming PCP visit in next 6 months
• Have an active patient portal account

Exclusion Criteria:

• Lives in a long-term care facility
• Severe vision impairment/blindness (as they need to be able to read portal messages)
• Enrolled in hospice
• Lacks decisional capacity as deemed by PCP

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Health Services Research
• Allocation: Non-Randomized
• Interventional Model: Parallel Assignment
• Masking: None (Open Label)

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Active Comparator: Standard of Care; Community-dwelling persons living with cognitive impairment aged 65 and older with known or probable mild cognitive impairment or dementia or elevated eRADAR score (with decision-making capacity), who are affiliated with the Atrium-Wake Forest Baptist Health, have a primary care physician within the Atrium-Wake Forest Baptist Health Network, and have an active patient portal account.	Behavioral: Standard of Care for Advance Care Planning; Patients will have access to the standardized advance care planning questionnaires readily available already within their mychart account which is part of standard of care.
Experimental: ACPVoice Intervention; Community-dwelling persons living with cognitive impairment aged 65 and older with known or probable mild cognitive impairment or dementia or elevated eRADAR score (with decision-making capacity), who are affiliated with the Atrium-Wake Forest Baptist Health, have a primary care physician at one of the participating sites, and have an active patient portal account.	Behavioral: Advance Care Planning Tool - ACPVoice; Eligible patients will be sent a secure MyChart message with a motivational message asking them to complete the advance care planning tool (ACPVoice) with their care partner/surrogate decision-maker or loved one before their upcoming primary care visit. The ACPVoice tool will be attached electronically to the mychart message. A reminder message will be sent to an non-responders with a different motivational message.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Engagement Rate	Percentage of participants who open the advance care planning tool (ACPVoice) mychart message	Up to month 6
Percentage of Intervention Completion	In the ACPVoice arm, completion was defined as completion of the ACPVoice questionnaire following outreach through the patient portal and follow-up reminders. In the Standard of Care arm, completion was defined as completion of the standard Epic ACP questionnaire (ACP For My Care Team Questionnaire) available through the patient portal without additional prompting or outreach.	Up to month 6

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Advance Care Planning Documentation Rates by Primary Care Providers	Number of participants with documentation of advance care planning within the electronic health record by primary care provider. Preintervention data collected from a chart review after participant enrolled in study.	12 months pre intervention, up to month 6 post intervention
Rate of Advance Care Planning Billing Code Usage	Number of participants with advance care planning billing code usage (CPT codes 99497, 99498; HCPCS codes 1123, 1124). Data collected from a chart review after participant enrolled in study.	12 months pre intervention, up to month 6 post intervention
Rate of Documented Designated Surrogate Decision Maker	Number of participants with a documented designated surrogate decision maker in the electronic health record. Data collected from a chart review after participant enrolled in study.	12 months pre intervention, month 6 post intervention

Other Outcome Measures

Outcome Measure	Measure Description	Time Frame
Quality of Advance Care Planning Documentation	High-quality advance care planning documentation will be defined as addressing ≥4 of the 8 core components with 1 point assigned for each of the following questions related to: health-related goals, what matters most/most important in their life, health-related worries/concerns, named surrogate decision-maker, how much information they would like to know, unacceptable states at the end-of-life, goals if their health was to worsen, and questions about advance care planning forms. Score of 0-8 with 0 indicating no advance care planning questions answered to 8 indicating eight core advance care planning questions answered.	6 months during the implementation period and up to 6 months post the implementation period
Telephone Advance Care Planning Completion Rates	Defined as the number of patients who complete the advance care planning tool (ACPVoice) over the telephone.	6 months during the implementation period and up to 6 months post the implementation period
Paper Advance Care Planning Documentation Rates	Defined as the number of patients who were mailed and completed the advance care planning tool (ACPVoice) via mail.	6 months during the implementation period and up to 6 months post the implementation period
Feeling Heard and Understood	Data will be assessed via a RedCap survey with 4 questions: I felt heard and understood by this provider and team, I felt this provider and team put my best interests first when making recommendations about my care, I felt this provider and team saw me as a person, not just someone with a medical problem, I felt this provider and team understood what is important to me in my life.	6 months during the implementation period and up to 6 months post the implementation period
Digital Health Literacy	Data will be measured using the Brief Digital Health Care Literacy Scale.	6 months during the implementation period and up to 6 months post the implementation period
Barrier to Adoption	Data will be collected via qualitative interviews with participants and providers.	6 months during the implementation period and up to 6 months post the implementation period
Provider Survey Score	17 multiple choice items regarding provider opinion on the interventions acceptability, appropriateness, feasibility and overall satisfaction. Total score range is 17-84 with a higher score indicating a more favorable opinion of the intervention.	6 months post implementation period
Participant Confidence Related to PCP Knowing What is Important to Them	Data will be collected via a RedCap survey asking 5 questions: i. How confident are you your primary care clinician/team knows what is important to you?, ii. How confident are you that what is important to you will determine the medical care you receive in the future? , iii. To what extent did completing this care planning tool increase or decrease your sense of control over medical decisions?, iv. Before completing the care planning tool, did your primary care clinician/team ask what is important to you? , and v. After completing the care planning tool, did your primary care clinician/team ask what is important to you? .	6 months during the implementation period and up to 6 months post the implementation period
Preference-concordant Care	Data will be collected via Redcap survey asking "How strongly do you agree or disagree that your current medical/treatment plan meets your preferences".	6 months during the implementation period and up to 6 months post the implementation period

Collaborators and Investigators

• Sponsor: Wake Forest University Health Sciences
• Collaborators: National Institute on Aging (NIA)
• Investigators: Principal Investigator: Jennifer Gabbard, MD, Wake Forest University Health Sciences

Study record dates

Study Major Dates

• Study Start (Actual): August 19, 2024
• Primary Completion (Actual): June 27, 2025
• Study Completion (Actual): June 27, 2025

Study Registration Dates

• First Submitted: July 12, 2024
• First Submitted That Met QC Criteria: July 12, 2024
• First Posted (Actual): July 19, 2024

Study Record Updates

• Last Update Posted (Actual): August 31, 2026
• Last Update Submitted That Met QC Criteria: August 27, 2026
• Last Verified: December 1, 2025

More Information

Terms related to this study

• Keywords: Mild Cognitive Impairment; Dementia; Advance Care Planning; Patient Portal
• Additional Relevant MeSH Terms: Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Mental Disorders; Neurocognitive Disorders; Cognition Disorders; Cognitive Dysfunction; Dementia; Health Services Administration; Health Care Quality, Access, and Evaluation; Quality of Health Care; Quality Indicators, Health Care; Patient Care Management; Patient Care Planning; Comprehensive Health Care; Standard of Care; Advance Care Planning
• Other Study ID Numbers: IRB00112143; 5K23AG070234-03 (U.S. NIH Grant/Contract)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No