| Title |
Needs, Perceptions and Education in Sarcoidosis: A Live Interactive Survey of Patients and Partners
|
|---|---|
| Published in |
Lung, August 2018
|
| DOI | 10.1007/s00408-018-0144-4 |
| Pubmed ID | |
| Authors |
C. C. Moor, M. J. G. van Manen, P. M. van Hagen, J. R. Miedema, L. M. van den Toorn, Y. Gür-Demirel, A. P. C. Berendse, J. A. M. van Laar, M. S. Wijsenbeek |
| Abstract |
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. 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. 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%). 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. |
X Demographics
The data shown below were collected from the profiles of 7 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United Kingdom | 2 | 29% |
| Unknown | 5 | 71% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 5 | 71% |
| Practitioners (doctors, other healthcare professionals) | 2 | 29% |
Mendeley readers
The data shown below were compiled from readership statistics for 27 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 27 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 5 | 19% |
| Student > Bachelor | 3 | 11% |
| Student > Postgraduate | 3 | 11% |
| Other | 2 | 7% |
| Student > Ph. D. Student | 1 | 4% |
| Other | 3 | 11% |
| Unknown | 10 | 37% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 6 | 22% |
| Psychology | 4 | 15% |
| Unspecified | 2 | 7% |
| Agricultural and Biological Sciences | 1 | 4% |
| Biochemistry, Genetics and Molecular Biology | 1 | 4% |
| Other | 2 | 7% |
| Unknown | 11 | 41% |
Attention Score in Context
This research output has an Altmetric Attention Score of 5. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 19 August 2018.
All research outputs
#6,225,963
of 23,099,576 outputs
Outputs from Lung
#191
of 895 outputs
Outputs of similar age
#107,802
of 330,796 outputs
Outputs of similar age from Lung
#3
of 18 outputs
Altmetric has tracked 23,099,576 research outputs across all sources so far. This one has received more attention than most of these and is in the 72nd percentile.
So far Altmetric has tracked 895 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 6.8. This one has done well, scoring higher than 78% of its peers.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 330,796 tracked outputs that were published within six weeks on either side of this one in any source. This one has gotten more attention than average, scoring higher than 67% of its contemporaries.
We're also able to compare this research output to 18 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 83% of its contemporaries.