To learn how to use and navigate the PCRO iLibrary, please watch this video put together by IMPACT member Spencer Hey, PhD. Dr. Hey helped organize the PCRO iLibrary and goes over what it is as well as a couple use cases.

Topic Timestamps:

• 00:00 – PCRO iLibrary intro and context
• 01:25 – Database structure
• 02:50 – Use cases:
  • 03:29 – Opening a record
  • 03:44 – MDS trial outcomes and using the group function
  • 04:37 – Secondary researcher interested in pain-related outcome and using the filter function
  • 05:04 – Searching for topics, tags, or content not yet applied to the data and using the search function

To expand the video, go to the bottom right of the video and click on the expand icon directly to the left of "Vimeo."

Outcome measures are selected for two key qualities – relevance to the lived experience of people with AD/ADRD and their care partners, and pragmatic characteristics to permit use in pragmatic clinical trials. Pragmatic outcome measures allow for efficient and uniform data capture across multiple sites and large diverse populations, while minimizing burden on people living with dementia or their care partners.

The iLibrary is a living resource, intentionally designed for expansion. While few successful pragmatic trials have enrolled people with AD/ADRD, the IMPACT Collaboratory will accelerate growth of this field. We will expand and update these resources through engagement with the community of investigators who design and complete these trials.

The PCRO iLibrary – Clinical Assessments includes selected outcome measures that have been used in pragmatic AD/ADRD research studies identified by a database of pragmatic randomized controlled trials created by researchers that include IMPACT Collaboratory members Spencer Hey, PhD and Monica Taljaard, PhD.

This iLibrary contains a summary of each outcome measure and its use, including the domain and content being measured, population, setting, subject, respondent, recall period, number of items, completion time, and key citations with links to PubMed abstracts. Information about the pragmatic qualities of the instrument including literacy level, cost and copyright, method of administration, assessor burden, and data capture is also included.

Outcome measures are grouped by instrument name. Investigators can sort PCRO iLibrary content by any other column of interest.

The PCRO iLibrary links each potential outcome measure to a domain from the Alzheimer’s Association Dementia Care Practice Recommendation Domains.  To assist investigators in searching for measure concepts, major content areas are grouped within these domains in the following manner:

• Activities of Daily Living – includes measures of activities of daily living, physical function, mobility
• Assessment and Care Planning – includes measures of routine care planning, goals of care, and advance care planning
• Dementia-related behaviors – includes measures of psychological symptoms, emotional distress, wandering, and other dementia-related behaviors
• Detection and Diagnosis – includes measures of dementia screening, staging and type, and cognitive function
• Information, Education, and Support – includes measures of access to care and social support, quality of communication, knowledge and understanding
• Medical Management – includes measures of pain and other physical symptoms, medication use or side effects, and comorbidities
• Supportive and Therapeutic Environment – includes measures of quality of care, spiritual care, and emotional support
• Transition and Coordination of Services – includes measures of care transitions, care coordination, and utilization