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

Overview

Journal ACR Open Rheumatol

Date 2020 Nov 25

PMID 33238079

Citations 5

Authors

Karen E Schifferdecker

Rebecca L Butcher

Erin Knight

Emily Creek

M Suzanne Schrandt

Laura Marrow

Marie Jaffe

Arlene Vinci

Guy Eakin

Affiliations

Soon will be listed here.

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.

Citing Articles

Knight E, Carluzzo K, Reeve B, Mueller K, Singh J, Lin L Qual Life Res. 2024; 34(2):523-534.

PMID: 39565554 PMC: 11865125. DOI: 10.1007/s11136-024-03831-9.

Prioritizing Patient Reported Outcome Measures (PROMs) to use in the clinical care of youth living with mental health concerns: a nominal group technique study.

Bajgain K, Mendoza J, Naqvi F, Aghajafari F, Tang K, Zwicker J J Patient Rep Outcomes. 2024; 8(1):20.

PMID: 38381258 PMC: 10881912. DOI: 10.1186/s41687-024-00694-z.

Consensus on Prioritisation of Actions for Reducing the Environmental Impact of a Large Tertiary Hospital: Application of the Nominal Group Technique.

Davies J, McGain F, Francis J Int J Environ Res Public Health. 2023; 20(5).

PMID: 36901002 PMC: 10001469. DOI: 10.3390/ijerph20053978.

Selecting patient-reported outcome measures of health-related quality of life in adult rheumatology: quality and breadth of coverage.

Knight E, Schifferdecker K, Eakin G, Reeve B Rheumatol Int. 2022; 43(4):627-638.

PMID: 36125521 DOI: 10.1007/s00296-022-05200-6.

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

Knight E, Carluzzo K, Schifferdecker K, Creek E, Butcher R, Eakin G Health Expect. 2021; 24(2):537-547.

PMID: 33503330 PMC: 8077072. DOI: 10.1111/hex.13196.

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