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.