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

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 individ...

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Autores principales: Schifferdecker, Karen E., Butcher, Rebecca L., Knight, Erin, Creek, Emily, Schrandt, M. Suzanne, Marrow, Laura, Jaffe, Marie, Vinci, Arlene, Eakin, Guy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7738808/
https://www.ncbi.nlm.nih.gov/pubmed/33238079
http://dx.doi.org/10.1002/acr2.11203
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author Schifferdecker, Karen E.
Butcher, Rebecca L.
Knight, Erin
Creek, Emily
Schrandt, M. Suzanne
Marrow, Laura
Jaffe, Marie
Vinci, Arlene
Eakin, Guy
author_facet Schifferdecker, Karen E.
Butcher, Rebecca L.
Knight, Erin
Creek, Emily
Schrandt, M. Suzanne
Marrow, Laura
Jaffe, Marie
Vinci, Arlene
Eakin, Guy
author_sort Schifferdecker, Karen E.
collection PubMed
description 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.
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spelling pubmed-77388082020-12-18 Stakeholder Development of an Online Program to Track Arthritis‐Related Patient‐Reported Outcomes Longitudinally: Live Yes! INSIGHTS Schifferdecker, Karen E. Butcher, Rebecca L. Knight, Erin Creek, Emily Schrandt, M. Suzanne Marrow, Laura Jaffe, Marie Vinci, Arlene Eakin, Guy ACR Open Rheumatol Original Articles 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. John Wiley and Sons Inc. 2020-11-25 /pmc/articles/PMC7738808/ /pubmed/33238079 http://dx.doi.org/10.1002/acr2.11203 Text en © 2020 The Authors. ACR Open Rheumatology published by Wiley Periodicals LLC on behalf of American College of Rheumatology. This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
spellingShingle Original Articles
Schifferdecker, Karen E.
Butcher, Rebecca L.
Knight, Erin
Creek, Emily
Schrandt, M. Suzanne
Marrow, Laura
Jaffe, Marie
Vinci, Arlene
Eakin, Guy
Stakeholder Development of an Online Program to Track Arthritis‐Related Patient‐Reported Outcomes Longitudinally: Live Yes! INSIGHTS
title Stakeholder Development of an Online Program to Track Arthritis‐Related Patient‐Reported Outcomes Longitudinally: Live Yes! INSIGHTS
title_full Stakeholder Development of an Online Program to Track Arthritis‐Related Patient‐Reported Outcomes Longitudinally: Live Yes! INSIGHTS
title_fullStr Stakeholder Development of an Online Program to Track Arthritis‐Related Patient‐Reported Outcomes Longitudinally: Live Yes! INSIGHTS
title_full_unstemmed Stakeholder Development of an Online Program to Track Arthritis‐Related Patient‐Reported Outcomes Longitudinally: Live Yes! INSIGHTS
title_short Stakeholder Development of an Online Program to Track Arthritis‐Related Patient‐Reported Outcomes Longitudinally: Live Yes! INSIGHTS
title_sort stakeholder development of an online program to track arthritis‐related patient‐reported outcomes longitudinally: live yes! insights
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7738808/
https://www.ncbi.nlm.nih.gov/pubmed/33238079
http://dx.doi.org/10.1002/acr2.11203
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