Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review

Gabbard, Jennifer L.; Carpenter, Joan G.; Ernecoff, Natalie C.; Mournighan, Kimberly; Cornea, Isabella; McKone, Mark; Hanson, Laura C.

doi:10.1111/jgs.18495

Cited by 4 publications

(2 citation statements)

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“…Future studies should consider appropriate sampling techniques like stratified randomization to ensure participation reflective of the larger population. Lastly, further studies should investigate the long-term impacts of the Koda platform on measures of patient and caregiver experience and goal-concordant care [ 54 ].…”

Section: Discussionmentioning

confidence: 99%

A Personalized and Interactive Web-Based Advance Care Planning Intervention for Older Adults (Koda Health): Pilot Feasibility Study

Roberts,

Cherry,

Mohan

et al. 2024

JMIR Aging

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Background Advance care planning (ACP) is a process that involves patients expressing their personal goals, values, and future medical care preferences. Digital applications may help facilitate this process, though their use in older adults has not been adequately studied. Objective This pilot study aimed to evaluate the reach, adoption, and usability of Koda Health, a web-based patient-facing ACP platform, among older adults. Methods Older adults (aged 50 years and older) who had an active Epic MyChart account at an academic health care system in North Carolina were recruited to participate. A total of 2850 electronic invitations were sent through MyChart accounts with an embedded hyperlink to the Koda platform. Participants who agreed to participate were asked to complete pre- and posttest surveys before and after navigating through the Koda Health platform. Primary outcomes were reach, adoption, and System Usability Scale (SUS) scores. Exploratory outcomes included ACP knowledge and readiness. Results A total of 161 participants enrolled in the study and created an account on the platform (age: mean 63, SD 9.3 years), with 80% (129/161) of these participants going on to complete all steps of the intervention, thereby generating an advance directive. Participants reported minimal difficulty in using the Koda platform, with an overall SUS score of 76.2. Additionally, knowledge of ACP (eg, mean increase from 3.2 to 4.2 on 5-point scale; P<.001) and readiness (eg, mean increase from 2.6 to 3.2 on readiness to discuss ACP with health care provider; P<.001) significantly increased from before to after the intervention. Conclusions This study demonstrated that the Koda Health platform is feasible, had above-average usability, and improved ACP documentation of preferences in older adults. Our findings indicate that web-based health tools like Koda may help older individuals learn about and feel more comfortable with ACP while potentially facilitating greater engagement in care planning.

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Section: Discussionmentioning

confidence: 99%

A Personalized and Interactive Web-Based Advance Care Planning Intervention for Older Adults (Koda Health): Pilot Feasibility Study

Roberts,

Cherry,

Mohan

et al. 2024

JMIR Aging

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“…As ADRD‐embedded pragmatic clinical trials are designed and implemented, the IMPACT PCRO Core will review the outcomes they use. Our adapted PAPERS approach will permit evaluation of the pragmatic characteristics of clinical trial outcomes, as demonstrated in a recent review of ADRD advance care planning interventions 25 . These trends will expand the range of outcomes used in embedded ADRD pragmatic clinical trials.…”

Section: Discussionmentioning

confidence: 99%

Selecting outcomes for pragmatic clinical trials in dementia care: The IMPACT Collaboratory iLibrary

Hanson,

Wessell,

Meeks

et al. 2023

J American Geriatrics Society

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BackgroundMany interventions improve care and outcomes for people with Alzheimer's Disease and related dementias (ADRD), yet are never disseminated. Pragmatic trials facilitate the adoption and dissemination of best practices, but gaps in pragmatic outcome measurement are a critical obstacle. Our objectives are (1) to describe the development and structure of the IMbedded Pragmatic ADRD Clinical Trials Collaboratory (IMPACT) iLibrary of potential outcome measures for ADRD pragmatic trials, and (2) to assess their pragmatic characteristics.MethodsWe identified potential outcome measures from several sources: a database of administrative and clinical outcome measures from ADRD clinical trials registered in ClinicalTrials.gov, published reviews, and IMPACT pilot pragmatic trial outcome measures. The iLibrary reports (a) number of items, (b) completion time, (c) readability for diverse populations, (d) cost or copyright barriers to use, (e) method of administration, (f) assessor training burden, and (g) feasibility of data capture and interpretation in routine care; a summary of pragmatic characteristics of each outcome measure (high, moderate, low); items or descriptions of items; and links to primary citations regarding development or psychometric properties.ResultsWe included 140 outcome measures in the iLibrary: 66 administrative (100% were pragmatic) and 74 clinical (52% were pragmatic). The most commonly addressed outcome domains from administrative assessments included physical function, quality of care or communication concerns, and psychological symptoms or distress behaviors. The most commonly addressed outcome domains from clinical assessments were psychological symptoms or distress behaviors, physical function, cognitive function, and health‐related quality of life.ConclusionsPragmatic outcome measures are brief, meaningful to diverse populations, easily scored and interpreted by clinicians, and available in electronic format for analysis. The iLibrary can facilitate the selection of measures for a wide range of outcomes relevant to people with ADRD and their care partners.

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What Clinicians and Researchers Should Know About the Evolving Field of Advance Care Planning: a Narrative Review

McMahan,

Hickman,

Sudore

2024

J GEN INTERN MED

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Advance care planning (ACP) has been recognized as crucial by patients, families, and clinicians; however, different definitions and measurements have led to inconsistencies in practice and mixed evidence in the literature. This narrative review explores ACP’s evolution, innovations, and outcomes using thematic analysis to synthesize data from randomized controlled trials, reviews, and editorials. Key findings include (1) ACP has evolved over the past several decades from a sole focus on code status and advance directive (AD) forms to a continuum of care planning over the life course focused on tailored preparation for patients and surrogate decision-makers and (2) ACP measurement has evolved from traditional outcome metrics, such as AD completion, to a comprehensive outcomes framework that includes behavior change theory, systems, implementation science, and a focus on surrogate outcomes. Since the recent development of an ACP consensus definition and outcomes framework, high-quality trials have reported mainly positive outcomes for interventions, especially for surrogates, which aligns with the patient desire to relieve decision-making burden for loved ones. Additionally, measurement of “clinically meaningful” ACP information, including documented goals of care discussions, is increasingly being integrated into electronic health records (EHR), and emerging, real-time assessments and natural language processing are enhancing ACP evaluation. To make things easier for patients, families, and care teams, clinicians and researchers can use and disseminate these evolved definitions; provide patients validated, easy-to-use tools that prime patients for conversations and decrease health disparities; use easy-to-access clinician training and simple scripts for interdisciplinary team members; and document patients’ values and preferences in the medical record to capture clinically meaningful ACP so this information is available at the point of care. Future efforts should focus on efficient implementation, expanded reimbursement options, and seamless integration of EHR documentation to ensure ACP’s continued evolution to better serve patients and their care partners.

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Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review

Cited by 4 publications

References 91 publications

A Personalized and Interactive Web-Based Advance Care Planning Intervention for Older Adults (Koda Health): Pilot Feasibility Study

A Personalized and Interactive Web-Based Advance Care Planning Intervention for Older Adults (Koda Health): Pilot Feasibility Study

Selecting outcomes for pragmatic clinical trials in dementia care: The IMPACT Collaboratory iLibrary

What Clinicians and Researchers Should Know About the Evolving Field of Advance Care Planning: a Narrative Review

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