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Qualitative Interviews to Assess the Content Validity and Usability of the Electronic Raynaud Diary in Patients with Systemic Sclerosis
OBJECTIVE: To better understand the symptoms and impacts of Raynaud phenomenon (RP) in patients with systemic sclerosis (SSc) and to evaluate the content validity and usability of a new electronic patient‐reported outcome (PRO) measure for RP: the Raynaud Diary. METHODS: The Raynaud Diary was develo...
Autores principales: | , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Wiley Periodicals, Inc.
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10010488/ https://www.ncbi.nlm.nih.gov/pubmed/36727567 http://dx.doi.org/10.1002/acr2.11522 |
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author | Domsic, Robyn T. Pokrzywinski, Robin Stassek, Larissa Benton, Wade W. Vampola, Christa‐Lynn Furst, Daniel E. Chung, Lorinda Steen, Virginia Mayes, Maureen D. Shah, Ami A. Molitor, Jerry A. Oliver, Kelly Nagaraja, Vivek Khanna, Dinesh |
author_facet | Domsic, Robyn T. Pokrzywinski, Robin Stassek, Larissa Benton, Wade W. Vampola, Christa‐Lynn Furst, Daniel E. Chung, Lorinda Steen, Virginia Mayes, Maureen D. Shah, Ami A. Molitor, Jerry A. Oliver, Kelly Nagaraja, Vivek Khanna, Dinesh |
author_sort | Domsic, Robyn T. |
collection | PubMed |
description | OBJECTIVE: To better understand the symptoms and impacts of Raynaud phenomenon (RP) in patients with systemic sclerosis (SSc) and to evaluate the content validity and usability of a new electronic patient‐reported outcome (PRO) measure for RP: the Raynaud Diary. METHODS: The Raynaud Diary was developed as a daily eDiary for assessing the number and duration of symptomatic Raynaud attacks; worst pain, numbness, tingling, and discomfort in the fingers; and overall disease severity, captured using the Raynaud's Condition Score. The Raynaud Diary was debriefed in two waves of qualitative interviews with adults with self‐reported RP secondary to SSc. All interviews included open‐ended questions about participants' experiences of RP. RESULTS: Participants (N = 39) had a mean age of 55.1 years, and 87% were female. Frequently reported RP symptoms were color change (reported by all participants), numbness (90%), tingling (82%), pain (77%), and discomfort (72%). Common attack triggers included temperature‐related factors and stress. Participants reported being unable to be outside or do outdoor activities and had problems gripping objects. All participants demonstrated understanding of the Raynaud Diary instructions. Most participants indicated that they would be able to use the Raynaud Diary to record the worst severity of individual RP symptoms in the previous 24 hours. CONCLUSION: Patients with RP secondary to SSc bear a heavy symptom burden. The Raynaud Diary is a content valid PRO measure that captures the most frequent symptoms of RP in patients with SSc. |
format | Online Article Text |
id | pubmed-10010488 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Wiley Periodicals, Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-100104882023-03-14 Qualitative Interviews to Assess the Content Validity and Usability of the Electronic Raynaud Diary in Patients with Systemic Sclerosis Domsic, Robyn T. Pokrzywinski, Robin Stassek, Larissa Benton, Wade W. Vampola, Christa‐Lynn Furst, Daniel E. Chung, Lorinda Steen, Virginia Mayes, Maureen D. Shah, Ami A. Molitor, Jerry A. Oliver, Kelly Nagaraja, Vivek Khanna, Dinesh ACR Open Rheumatol Original Articles OBJECTIVE: To better understand the symptoms and impacts of Raynaud phenomenon (RP) in patients with systemic sclerosis (SSc) and to evaluate the content validity and usability of a new electronic patient‐reported outcome (PRO) measure for RP: the Raynaud Diary. METHODS: The Raynaud Diary was developed as a daily eDiary for assessing the number and duration of symptomatic Raynaud attacks; worst pain, numbness, tingling, and discomfort in the fingers; and overall disease severity, captured using the Raynaud's Condition Score. The Raynaud Diary was debriefed in two waves of qualitative interviews with adults with self‐reported RP secondary to SSc. All interviews included open‐ended questions about participants' experiences of RP. RESULTS: Participants (N = 39) had a mean age of 55.1 years, and 87% were female. Frequently reported RP symptoms were color change (reported by all participants), numbness (90%), tingling (82%), pain (77%), and discomfort (72%). Common attack triggers included temperature‐related factors and stress. Participants reported being unable to be outside or do outdoor activities and had problems gripping objects. All participants demonstrated understanding of the Raynaud Diary instructions. Most participants indicated that they would be able to use the Raynaud Diary to record the worst severity of individual RP symptoms in the previous 24 hours. CONCLUSION: Patients with RP secondary to SSc bear a heavy symptom burden. The Raynaud Diary is a content valid PRO measure that captures the most frequent symptoms of RP in patients with SSc. Wiley Periodicals, Inc. 2023-02-02 /pmc/articles/PMC10010488/ /pubmed/36727567 http://dx.doi.org/10.1002/acr2.11522 Text en © 2023 Eicos Sciences, Inc. ACR Open Rheumatology published by Wiley Periodicals LLC on behalf of American College of Rheumatology. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made. |
spellingShingle | Original Articles Domsic, Robyn T. Pokrzywinski, Robin Stassek, Larissa Benton, Wade W. Vampola, Christa‐Lynn Furst, Daniel E. Chung, Lorinda Steen, Virginia Mayes, Maureen D. Shah, Ami A. Molitor, Jerry A. Oliver, Kelly Nagaraja, Vivek Khanna, Dinesh Qualitative Interviews to Assess the Content Validity and Usability of the Electronic Raynaud Diary in Patients with Systemic Sclerosis |
title | Qualitative Interviews to Assess the Content Validity and Usability of the Electronic Raynaud Diary in Patients with Systemic Sclerosis |
title_full | Qualitative Interviews to Assess the Content Validity and Usability of the Electronic Raynaud Diary in Patients with Systemic Sclerosis |
title_fullStr | Qualitative Interviews to Assess the Content Validity and Usability of the Electronic Raynaud Diary in Patients with Systemic Sclerosis |
title_full_unstemmed | Qualitative Interviews to Assess the Content Validity and Usability of the Electronic Raynaud Diary in Patients with Systemic Sclerosis |
title_short | Qualitative Interviews to Assess the Content Validity and Usability of the Electronic Raynaud Diary in Patients with Systemic Sclerosis |
title_sort | qualitative interviews to assess the content validity and usability of the electronic raynaud diary in patients with systemic sclerosis |
topic | Original Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10010488/ https://www.ncbi.nlm.nih.gov/pubmed/36727567 http://dx.doi.org/10.1002/acr2.11522 |
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