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I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis
OBJECTIVE: Little is known about the experiences, values, and needs of people without arthritis who undergo predictive biomarker testing for the development of rheumatoid arthritis (RA). Our study aimed to explore the perspectives of these individuals and describe their information needs. METHODS: A...
Autores principales: | , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7064954/ https://www.ncbi.nlm.nih.gov/pubmed/30710453 http://dx.doi.org/10.1002/acr.23841 |
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author | Mosor, Erika Stoffer‐Marx, Michaela Steiner, Günter Raza, Karim Stack, Rebecca J. Simons, Gwenda Falahee, Marie Skingle, Diana Dobrin, Mircia Schett, Georg Englbrecht, Matthias Smolen, Josef S. Kjeken, Ingvild Hueber, Axel J. Stamm, Tanja A. |
author_facet | Mosor, Erika Stoffer‐Marx, Michaela Steiner, Günter Raza, Karim Stack, Rebecca J. Simons, Gwenda Falahee, Marie Skingle, Diana Dobrin, Mircia Schett, Georg Englbrecht, Matthias Smolen, Josef S. Kjeken, Ingvild Hueber, Axel J. Stamm, Tanja A. |
author_sort | Mosor, Erika |
collection | PubMed |
description | OBJECTIVE: Little is known about the experiences, values, and needs of people without arthritis who undergo predictive biomarker testing for the development of rheumatoid arthritis (RA). Our study aimed to explore the perspectives of these individuals and describe their information needs. METHODS: A qualitative, multicenter interview study with a thematic analysis was conducted in Austria, Germany and the UK. Individuals were interviewed who underwent predictive biomarker testing for RA and had a positive test result but no diagnosis of any inflammatory joint disease. Participants included patients with arthralgia and asymptomatic individuals. Information and education needs were developed from the qualitative codes and themes using the Arthritis Educational Needs Assessment Tool as a frame of reference. RESULTS: Thematic saturation was reached in 34 individuals (76% female, 24 [71%] with arthralgia, and 10 [29%] asymptomatic individuals). Thirty‐seven codes were summarized into 4 themes: 1) decision‐making around whether to undergo initial predictive testing, 2) willingness to consider further predictive tests, and/or 3) preventive interventions, including medication, and 4) varying reactions after receiving a positive test result. Individuals with arthralgia were more likely to be willing to take preventive action, undergo further testing, and experience psychological distress than asymptomatic individuals. All participants expressed the need for tailored, patient‐understandable information. CONCLUSION: Individuals at risk of RA are currently the subjects of research aimed at developing better predictive strategies and preventive approaches. Their perceptions and needs should be addressed to inform the future development of interventions combined with education. |
format | Online Article Text |
id | pubmed-7064954 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-70649542020-03-16 I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis Mosor, Erika Stoffer‐Marx, Michaela Steiner, Günter Raza, Karim Stack, Rebecca J. Simons, Gwenda Falahee, Marie Skingle, Diana Dobrin, Mircia Schett, Georg Englbrecht, Matthias Smolen, Josef S. Kjeken, Ingvild Hueber, Axel J. Stamm, Tanja A. Arthritis Care Res (Hoboken) Rheumatoid Arthritis OBJECTIVE: Little is known about the experiences, values, and needs of people without arthritis who undergo predictive biomarker testing for the development of rheumatoid arthritis (RA). Our study aimed to explore the perspectives of these individuals and describe their information needs. METHODS: A qualitative, multicenter interview study with a thematic analysis was conducted in Austria, Germany and the UK. Individuals were interviewed who underwent predictive biomarker testing for RA and had a positive test result but no diagnosis of any inflammatory joint disease. Participants included patients with arthralgia and asymptomatic individuals. Information and education needs were developed from the qualitative codes and themes using the Arthritis Educational Needs Assessment Tool as a frame of reference. RESULTS: Thematic saturation was reached in 34 individuals (76% female, 24 [71%] with arthralgia, and 10 [29%] asymptomatic individuals). Thirty‐seven codes were summarized into 4 themes: 1) decision‐making around whether to undergo initial predictive testing, 2) willingness to consider further predictive tests, and/or 3) preventive interventions, including medication, and 4) varying reactions after receiving a positive test result. Individuals with arthralgia were more likely to be willing to take preventive action, undergo further testing, and experience psychological distress than asymptomatic individuals. All participants expressed the need for tailored, patient‐understandable information. CONCLUSION: Individuals at risk of RA are currently the subjects of research aimed at developing better predictive strategies and preventive approaches. Their perceptions and needs should be addressed to inform the future development of interventions combined with education. John Wiley and Sons Inc. 2020-02-27 2020-03 /pmc/articles/PMC7064954/ /pubmed/30710453 http://dx.doi.org/10.1002/acr.23841 Text en © 2019 The Authors. Arthritis Care & Research published by Wiley Periodicals, Inc. 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 | Rheumatoid Arthritis Mosor, Erika Stoffer‐Marx, Michaela Steiner, Günter Raza, Karim Stack, Rebecca J. Simons, Gwenda Falahee, Marie Skingle, Diana Dobrin, Mircia Schett, Georg Englbrecht, Matthias Smolen, Josef S. Kjeken, Ingvild Hueber, Axel J. Stamm, Tanja A. I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis |
title | I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis |
title_full | I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis |
title_fullStr | I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis |
title_full_unstemmed | I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis |
title_short | I Would Never Take Preventive Medication! Perspectives and Information Needs of People Who Underwent Predictive Tests for Rheumatoid Arthritis |
title_sort | i would never take preventive medication! perspectives and information needs of people who underwent predictive tests for rheumatoid arthritis |
topic | Rheumatoid Arthritis |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7064954/ https://www.ncbi.nlm.nih.gov/pubmed/30710453 http://dx.doi.org/10.1002/acr.23841 |
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