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Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners

OBJECTIVES: Sarcoidosis is a chronic, multisystem disease with often a major impact on quality of life. Information on unmet needs of patients and their partners is lacking. We assessed needs and perceptions of sarcoidosis patients and their partners. METHODS: During patient information meetings in...

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Autores principales: Moor, C. C., van Manen, M. J. G., van Hagen, P. M., Miedema, J. R., van den Toorn, L. M., Gür-Demirel, Y., Berendse, A. P. C., van Laar, J. A. M., Wijsenbeek, M. S.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer US 2018
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6153596/
https://www.ncbi.nlm.nih.gov/pubmed/30088094
http://dx.doi.org/10.1007/s00408-018-0144-4
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author Moor, C. C.
van Manen, M. J. G.
van Hagen, P. M.
Miedema, J. R.
van den Toorn, L. M.
Gür-Demirel, Y.
Berendse, A. P. C.
van Laar, J. A. M.
Wijsenbeek, M. S.
author_facet Moor, C. C.
van Manen, M. J. G.
van Hagen, P. M.
Miedema, J. R.
van den Toorn, L. M.
Gür-Demirel, Y.
Berendse, A. P. C.
van Laar, J. A. M.
Wijsenbeek, M. S.
author_sort Moor, C. C.
collection PubMed
description OBJECTIVES: Sarcoidosis is a chronic, multisystem disease with often a major impact on quality of life. Information on unmet needs of patients and their partners is lacking. We assessed needs and perceptions of sarcoidosis patients and their partners. METHODS: During patient information meetings in 2015 and 2017 in the Erasmus University Medical Center, we interviewed patients and partners using interactive voting boxes. Patients responded anonymously to 17 questions. Answers were projected directly on the screen in the room. RESULTS: 210 patients and 132 partners participated. Sarcoidosis has a subjective significant impact on lives of both patients and partners. The vast majority of patients and partners feel regularly misunderstood because of the general unawareness of sarcoidosis. Many patients and partners experience anxiety. Three-quarters of patients would like to see more attention and support for their psychological problems. Additionally, more supportive care for partners of sarcoidosis patients is warranted. Interactive interviewing was considered educational (91%) and pleasant (84%). DISCUSSION: This study improves awareness of needs and perceptions of patients with sarcoidosis and their partners. Sarcoidosis leads to anxiety and psychological distress and impairs well-being of patients and their partners. Attention for psychological support, better disease education, and more supportive care for partners is warranted.
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spelling pubmed-61535962018-10-04 Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners Moor, C. C. van Manen, M. J. G. van Hagen, P. M. Miedema, J. R. van den Toorn, L. M. Gür-Demirel, Y. Berendse, A. P. C. van Laar, J. A. M. Wijsenbeek, M. S. Lung Interstitial Lung Disease OBJECTIVES: Sarcoidosis is a chronic, multisystem disease with often a major impact on quality of life. Information on unmet needs of patients and their partners is lacking. We assessed needs and perceptions of sarcoidosis patients and their partners. METHODS: During patient information meetings in 2015 and 2017 in the Erasmus University Medical Center, we interviewed patients and partners using interactive voting boxes. Patients responded anonymously to 17 questions. Answers were projected directly on the screen in the room. RESULTS: 210 patients and 132 partners participated. Sarcoidosis has a subjective significant impact on lives of both patients and partners. The vast majority of patients and partners feel regularly misunderstood because of the general unawareness of sarcoidosis. Many patients and partners experience anxiety. Three-quarters of patients would like to see more attention and support for their psychological problems. Additionally, more supportive care for partners of sarcoidosis patients is warranted. Interactive interviewing was considered educational (91%) and pleasant (84%). DISCUSSION: This study improves awareness of needs and perceptions of patients with sarcoidosis and their partners. Sarcoidosis leads to anxiety and psychological distress and impairs well-being of patients and their partners. Attention for psychological support, better disease education, and more supportive care for partners is warranted. Springer US 2018-08-07 2018 /pmc/articles/PMC6153596/ /pubmed/30088094 http://dx.doi.org/10.1007/s00408-018-0144-4 Text en © The Author(s) 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Interstitial Lung Disease
Moor, C. C.
van Manen, M. J. G.
van Hagen, P. M.
Miedema, J. R.
van den Toorn, L. M.
Gür-Demirel, Y.
Berendse, A. P. C.
van Laar, J. A. M.
Wijsenbeek, M. S.
Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners
title Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners
title_full Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners
title_fullStr Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners
title_full_unstemmed Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners
title_short Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners
title_sort needs, perceptions and education in sarcoidosis: a live interactive survey of patients and partners
topic Interstitial Lung Disease
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6153596/
https://www.ncbi.nlm.nih.gov/pubmed/30088094
http://dx.doi.org/10.1007/s00408-018-0144-4
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