Stakeholder Development of an Online Program to Track Arthritis‐Related Patient‐Reported Outcomes Longitudinally: Live Yes! INSIGHTS

Abstract

Objective. Patient-reported outcome measures (PROMs) are increasingly used in clinical settings but may not provide benefits to patients outside of health encounters. The Arthritis Foundation's Live Yes! Network provides an opportunity for PROM use by individuals and the network that assists individuals with managing their arthritis between encounters. Our objective was to develop a patient-reported outcomes platform for the network, Live Yes! INSIGHTS, using mixed methods and extensive stakeholder input. Methods. A mixed methods longitudinal transformation design was used, starting with semistructured interviews to specify the main priorities of the program, literature review to identify potential PROMs, modified Delphi and nominal group technique to select final PROMs, and focus groups to guide program implementation, messaging, and use of results. We gathered input from 93 participants, including from individuals living with arthritis (74% of participants), caregivers, providers, researchers, and measurement experts. Results. Our mixed methods study resulted in the selection of Patient-Reported Outcomes Measurement Information System (PROMIS)-29, PROMIS Emotional Support Short Form v2.0, and the Health Care Empowerment Questionnaire, to be deployed through a Qualtrics platform. Triangulation of data resulted in identification of potential risks and benefits, including confidentiality, ability to personally track and share data, and an opportunity to contribute to research. Conclusion. An accessible measurement system backed by psychometrically strong PROMs, created with robust stakeholder engagement, and linked to a national patient network sets the stage for individuals with arthritis to better monitor and improve health outcomes both outside and inside health care settings and for the network to customize programming to meet needs.

Psychometric characteristics of the health care empowerment questionnaire in a sample of patients with arthritis and rheumatic conditions

“…For the quantitative psychometric analyses in the current study, we used cross‐sectional data from the Arthritis Foundation's Live Yes! INSIGHTS programme (‘INSIGHTS’), 14 in which patients in the United States with arthritis are invited to complete patient‐reported outcome and experience measures periodically online in a non‐clinical setting. This survey was finalized based on the findings of phase 1.…”

“…INSIGHTS survey, which uses PROMs and PREMs to longitudinally track member experiences. 14 The INSIGHTS survey is administered quarterly, and results are used to guide regional and national programming, resources, advocacy and research as part of the Arthritis Foundation's larger Live Yes! Arthritis Network, 15 its patient-facilitated network to support an estimated 20 million individuals with arthritis.…”

“…INSIGHTS programme, which resulted in the selection of the HCEQ (see Schifferdecker et al for more information). 14 The purpose of this study was to assess the psychometric properties of the HCEQ in a sample of patients with arthritis. This is critical as this is the first study to evaluate the HCEQ with a sample like this in the United States.…”

“…In 2018, the authors (EK, KES and RLB) collaborated with the Arthritis Foundation (including authors EC and GSE) to develop the Live Yes! INSIGHTS survey, which uses PROMs and PREMs to longitudinally track member experiences 14 . The INSIGHTS survey is administered quarterly, and results are used to guide regional and national programming, resources, advocacy and research as part of the Arthritis Foundation's larger Live Yes!…”

“…Given the importance of patient empowerment, patient input was used to develop the Live Yes! INSIGHTS programme, which resulted in the selection of the HCEQ (see Schifferdecker et al for more information) 14 . The purpose of this study was to assess the psychometric properties of the HCEQ in a sample of patients with arthritis.…”