Measures and Measurement Development Core

University Of Colorado Denver, Aurora CO

Investigators

Abstract

ASCENT: MEASURE AND MEASURE DEVELOPMENT CORE PROJECT SUMMARY/ABSTRACT Serious illnesses such as advanced cancer or Alzheimer’s Disease and Alzheimer’s Disease Related Dementias (AD/ADRD) carry high mortality risk and adversely affect the lives of millions of people of all ages and their caregivers. Palliative care (PC) is interdisciplinary care for persons with serious illness; to evaluate the outcomes and understand the mechanisms of PC interventions, improvements in measurement science are necessary. The overarching objective of the Advancing the Science of Palliative Care Research across the Lifespan (ASCENT) Consortium is to provide resources, training, expertise, and coordination to advance innovative, high-quality research on PC across the lifespan. Investigators in the ASCENT Measure and Measurement Development Core (Measurement Core) have expertise in adult and pediatric PC for cancer, AD/ADRD, and other serious illnesses, and in patient- and caregiver-reported outcomes, innovative and pragmatic outcome ascertainment, and measurement. To meet ASCENT’s objectives, the Measurement Core aims to support the development, harmonization, selection, and ascertainment of reliable and valid measures in PC research across the lifespan for persons living with serious illness. Collaborating across the ASCENT Consortium, our specific aims are: Aim 1: Support the design and conduct of high-quality PC research by providing consultation and training for investigators to promote the use of innovative and rigorous research measurement. Working with the Research Education Core (REC), we will: 1) serve as teaching faculty; 2) collaborate with the Engagement Core and Lived Experience Advisory Panel (LEAP) to train PC scientists on rigorous measurement; and 3) advise ASCENT Research Scholars and Investigators-in- Residence. In collaboration with the Leadership and Administration Core (LAC) we will: 1) work in the ASCENT Consultation Program to facilitate measure selection and ascertainment; 2) collaborate with the Pilot Core and REC to support ASCENT grant mechanisms to address gaps in PC measure development. Aim 2: Create new knowledge and resources for PC measurement science. We will: 1) create and refine a virtual library of reliable, valid measures for PC research across the lifespan; 2) synthesize evidence on gaps in PC measures; 3) facilitate PC measure harmonization and Standardized Data Elements; 4) facilitate best practices in PC measure ascertainment; 5) address rigor in PC measure development, selection, ascertainment, and analysis; and 6) propose developmental projects to innovate in PC measurement science. Aim 3: Disseminate new knowledge and resources to advance PC measurement science. Working with ASCENT partner organizations, we will use varied media (publications, presentations, guidance documents, training materials, podcasts) to disseminate best practices for PC measure development, harmonization, selection, and ascertainment to academic and broader public audiences.