Title |
Social Media and Internet Resources for Patients with Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN)
|
---|---|
Published in |
Current Hematologic Malignancy Reports, August 2016
|
DOI | 10.1007/s11899-016-0340-3 |
Pubmed ID | |
Authors |
Naveen Pemmaraju, Vikas Gupta, Michael A. Thompson, Andrew A. Lane |
Abstract |
The incorporation of Internet resources and the use of social media among patients, clinicians, advocates, and researchers in the field of hematology and oncology are growing in importance. Utilization of online information sharing is rising, especially among those involved in rare blood cancer fields, which have generally featured a paucity of reliable, updated information. In particular, blastic plasmacytoid dendritic cell neoplasm (BPDCN), an uncommon, but highly aggressive hematologic malignancy, is one example of a cancer with limited information readily available to the general public. The infrequent incidence of BPDCN, the challenges in recognizing the disease and making a clinico-pathologic diagnosis, and the lack of standard therapies are some of the reasons accounting for the dearth of expert opinion, scientific publications and discussion, and accessibility of online information for patients. This article highlights social media and Internet sources available for patients and other healthcare stakeholders in the field of BPDCN and discusses our efforts to increase awareness and propagation of BPDCN electronic resources, including the founding of an online Twitter community, #BPDCN. |
X Demographics
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Geographical breakdown
Country | Count | As % |
---|---|---|
United States | 26 | 60% |
United Kingdom | 1 | 2% |
Unknown | 16 | 37% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 25 | 58% |
Practitioners (doctors, other healthcare professionals) | 8 | 19% |
Scientists | 7 | 16% |
Science communicators (journalists, bloggers, editors) | 2 | 5% |
Unknown | 1 | 2% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
United Kingdom | 1 | 3% |
Colombia | 1 | 3% |
Unknown | 31 | 94% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Student > Master | 6 | 18% |
Other | 5 | 15% |
Student > Ph. D. Student | 5 | 15% |
Student > Doctoral Student | 3 | 9% |
Student > Bachelor | 2 | 6% |
Other | 3 | 9% |
Unknown | 9 | 27% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 9 | 27% |
Agricultural and Biological Sciences | 4 | 12% |
Engineering | 3 | 9% |
Computer Science | 2 | 6% |
Business, Management and Accounting | 1 | 3% |
Other | 5 | 15% |
Unknown | 9 | 27% |