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 – Administrative Sources includes selected outcome measures from existing data sources that are commonly used in AD/ADRD research. Outcome measures are grouped by data source since data sources are setting-specific and only one is likely to be used in a pragmatic trial. Investigators can sort content by any other column of interest.

This iLibrary contains a summary of each potential outcome measure, including the existing data source and a link to this source, location within source, domain and content being measured, number of items, question text or brief description, and key citations with links to PubMed abstracts. In addition to the name of the data source, investigators can link to further information. The Source Location column identifies individual items within the data source that are used for the outcome measure.

While this iLibrary includes the most promising potential outcome measures from each of these sources, we encourage investigators to examine linked materials in order to understand all available items within a given data source – they may thus discover items of importance to their particular research question.

Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey: The CAHPS Hospice Survey is an after-death survey completed by primary caregivers for patients in hospice care. The survey is designed to examine the hospice care experiences of both the patient and their caregivers, including help for symptoms, communication with the hospice team, caregivers’ experiences, and overall quality of care.

Hospice Item Set (HIS): The HIS is a standardized item set designed to capture patient-level data that can be used to calculate quality measures for the Hospice Quality Reporting Program (HQRP). The HIS is completed by hospice staff at Medicare-certified hospices.

Minimum Data Set (MDS): The Minimum Data Set (MDS) is part of the federally mandated process for clinical assessment of all residents in Medicare and Medicaid certified nursing homes. Assessments provide the foundation upon which a resident's individual care plan is formulated. MDS assessments are completed for all residents in certified nursing homes, regardless of source of payment for the individual resident. Assessments are required on admission to the nursing facility, periodically, and on discharge, and are completed by nursing home staff.

Medicare Claims (MEDPAR): Medicare claims data for beneficiaries in fee for service Medicare who use inpatient hospital services. Data tables on charges, Medicare reimbursement, hospital days, and discharges grouped by Diagnosis Related Groups are available after a time delay of approximately 1-2 years.

Outcome and Assessment Information Set (OASIS): OASIS is a standardized item set designed to capture comprehensive clinical assessment data for patients in Medicare or Medicaid certified home health agencies, including clinical status, functional status and service needs. OASIS is completed by home health staff.

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