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Selecting Outcomes to Ensure Pragmatic Trials Are Relevant to People Living with Dementia
Author(s) -
Hanson Laura C.,
Bennett Antonia V.,
Jonsson Mattias,
Kelley Amy,
Ritchie Christine,
Saliba Debra,
Teno Joan,
Zimmerman Sheryl
Publication year - 2020
Publication title -
journal of the american geriatrics society
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.992
H-Index - 232
eISSN - 1532-5415
pISSN - 0002-8614
DOI - 10.1111/jgs.16619
Subject(s) - collaboratory , medicine , psychological intervention , dementia , clinical trial , core (optical fiber) , medline , outcome (game theory) , gerontology , nursing , disease , computer science , world wide web , telecommunications , mathematical economics , mathematics , pathology , political science , law
Outcome measures for embedded pragmatic clinical trials (ePCTs) should reflect the lived experience of people living with dementia (PLWD) and their caregivers, yet patient‐ and caregiver‐reported outcomes (PCROs) are rarely available in large clinical and administrative data sources. Although pragmatic methods may lead to use of existing administrative data rather than new data collected directly from PLWD, interventions are truly impactful only when they change outcomes prioritized by PLWD and their caregivers. The Patient‐ and Caregiver‐Reported Outcomes Core (PCRO Core) of the IM bedded P ragmatic A lzheimer's Disease (AD) and AD‐Related Dementias C linical T rials (IMPACT) Collaboratory aims to promote optimal use of outcomes relevant to PLWD and their caregivers in pragmatic trials. The PCRO Core will address key scientific challenges limiting outcome measurement, such as gaps in existing measures, methodologic constraints, and burdensome data capture. PCRO Core investigators will create a searchable library of AD/AD‐related dementias (ADRD) clinical outcome measures, including measures in existing data sources with potential for AD/ADRD ePCTs, and will support best practices in measure development, including pragmatic adaptation of PCROs. Working together with other Cores and Teams within the IMPACT Collaboratory, the PCRO Core will support investigators to select from existing outcome measures, and to innovate in methods for measurement and data capture. In the future, the work of the IMPACT Collaboratory may galvanize broader embedded use of outcomes that matter to PLWD and their care partners in large health systems. J Am Geriatr Soc 68:S55–S61, 2020 .