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Lung
Published in: Lung 5/2018

Open Access 01-10-2018 | INTERSTITIAL LUNG DISEASE

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

Published in: Lung | Issue 5/2018

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Abstract

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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Metadata
Title
Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners
Publication date
01-10-2018
Published in
Lung / Issue 5/2018
Print ISSN: 0341-2040
Electronic ISSN: 1432-1750
DOI
https://doi.org/10.1007/s00408-018-0144-4

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