Abstract
Purpose of Review
The use of Twitter, one of the most commonly engaged social media platforms in the world, is increasing among the general public. Notably, this trend has also been observed among those involved in the healthcare field. With its ability to readily connect diverse groups of stakeholders in a given area of interest, Twitter has become a focal point for those involved in increasing awareness and information exchange in orphan disease fields. Blastic plasmacytoid dendritic cell neoplasm (BPDCN) is a rare, aggressive hematologic malignancy with generally poor long-term outcomes for adult patients and no standard therapeutic guidelines. Coupled with its low incidence rate, the disease has experienced a number of name changes over the past three decades (e.g., blastic NK cell lymphoma, CD4+CD56+ hematodermic tumor), thereby historically resulting in difficulties in its clinico-pathologic diagnosis and treatment approaches. All of these factors have led to a striking gap in terms of accurate information available to patients and the general public. Therefore, there is an urgent need for the development of more venues for the dissemination of information, particularly online, for this rare cancer.
Recent Findings
In this context, we began the Twitter medical community, #BPDCN, over a year ago, to help fill this information void.
Summary
Now, completing its first year of existence, we aimed to analyze the metrics of Twitter use in order to better understand and to describe the characteristics and reach in of #BPDCN, and to determine the feasibility of starting and maintaining a disease-specific hashtag community in a particularly rare cancer.
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References
Pemmaraju N. Blastic plasmacytoid dendritic cell neoplasm. Clin Adv Hematol Oncol. 2016;14:220–2.
Pagano L, Valentini CG, Pulsoni A, et al. Blastic plasmacytoid dendritic cell neoplasm with leukemic presentation: an Italian multicenter study. Haematologica. 2013;98:239–46.
Reimer P, Rudiger T, Kraemer D, et al. What is CD4+CD56+ malignancy and how should it be treated? Bone Marrow Transplant. 2003;32:637–46.
Menezes J, Acquadro F, Wiseman M, et al. Exome sequencing reveals novel and recurrent mutations with clinical impact in blastic plasmacytoid dendritic cell neoplasm. Leukemia 2013. 2014;28(4):823–9. https://doi.org/10.1038/leu.2013.283.
Vardiman JW, Thiele J, Arber DA, et al. The 2008 revision of the World Health Organization (WHO) classification of myeloid neoplasms and acute leukemia: rationale and important changes. Blood. 2009;114:937–51.
Deotare U, Yee KW, Le LW, et al. Blastic plasmacytoid dendritic cell neoplasm with leukemic presentation: 10-color flow cytometry diagnosis and HyperCVAD therapy. Am J Hematol. 2016;91:283–6.
Alayed K, Patel KP, Konoplev S, et al. TET2 mutations, myelodysplastic features, and a distinct immunoprofile characterize blastic plasmacytoid dendritic cell neoplasm in the bone marrow. Am J Hematol. 2013;88:1055–61.
Arber DA, Orazi A, Hasserjian R, et al. The 2016 revision to the World Health Organization classification of myeloid neoplasms and acute leukemia. Blood. 2016;127:2391–405.
Martin-Martin L, Almeida J, Pomares H, et al. Blastic plasmacytoid dendritic cell neoplasm frequently shows occult central nervous system involvement at diagnosis and benefits from intrathecal therapy. Oncotarget. 2016;7:10174–81.
Pagano L, Valentini CG, Grammatico S, Pulsoni A. Blastic plasmacytoid dendritic cell neoplasm: diagnostic criteria and therapeutical approaches. Br J Haematol. 2016;174:188–202.
Roos-Weil D, Dietrich S, Boumendil A, et al. Stem cell transplantation can provide durable disease control in blastic plasmacytoid dendritic cell neoplasm: a retrospective study from the European Group for Blood and Marrow Transplantation. Blood. 2013;121:440–6.
Kharfan-Dabaja MA, Lazarus HM, Nishihori T, Mahfouz RA, Hamadani M. Diagnostic and therapeutic advances in blastic plasmacytoid dendritic cell neoplasm: a focus on hematopoietic cell transplantation. Biol Blood Marrow Transplant. 2013;19:1006–12.
Aoki T, Suzuki R, Kuwatsuka Y, et al. Long-term survival following autologous and allogeneic stem cell transplantation for blastic plasmacytoid dendritic cell neoplasm. Blood. 2015;125:3559–62.
Pemmaraju N, Thomas D, Kantarjian HM, et al. Analysis of outcomes of patients with blastic plasmacytoid dendritic cell neoplasm. ASH Annual Meeting Abstracts 2012;120:3554.
Frankel A. Activity and tolerability of SL-401, a targeted therapy directed to the interleukin-3 receptor on cancer stem cells and tumor bulk, as a single agent in patients with advanced hematologic malignancies. ASCO Annual Meeting 2013; J Clin Oncol (Meeting Abstracts) 2014;17;124(3):385–92. https://doi.org/10.1182/blood-2014-04-566737.
Montero J, Stephansky J, Cai T, et al. Blastic plasmacytoid dendritic cell neoplasm is dependent on BCL2 and sensitive to venetoclax. Cancer discovery. 2017;7:156–64.
Ceribelli M, Hou ZE, Kelly PN, et al. A druggable TCF4- and BRD4-dependent transcriptional network sustains malignancy in blastic plasmacytoid dendritic cell neoplasm. Cancer Cell. 2016;30:764–78.
Testa U, Pelosi E, Frankel ACD. 123 is a membrane biomarker and a therapeutic target in hematologic malignancies. Biomarker research. 2014;2:4.
Sapienza MR, Fabio F, Claudio A, et al. Molecular profiling of blastic plasmacytoid dendritic CELL neoplasm reveals a unique pattern and suggests selective sensitivity to NF-KB pathway inhibition. Blood. 2013;122:2502.
Pemmaraju N, Gupta V, Thompson MA, Lane AA.Social media and internet resources for patients with blastic plasmacytoid dendritic cell neoplasm (BPDCN). Curr Hematol Malig Rep 2016;11(6):462–467. https://doi.org/10.1007/s11899-016-0340-3.
Pemmaraju N, Gupta V, Mesa R, Thompson MA. Social media and myeloproliferative neoplasms (MPN)—focus on twitter and the development of a disease-specific community: #MPNSM. Curr Hematol Malig Rep. 2015;10:413–20.
Katz MS, Utengen A, Anderson PF, Thompson MA, Fisch M, Johnston C. Disease-specific hashtags for online communication about cancer care. J Clin Oncol. 2015;33; suppl abstr:6520.
Pemmaraju N, Gupta V, Mesa R, Thompson MA. Social media and myeloproliferative neoplasms (MPN)-focus on twitter and the development of a disease-specific community: #MPNSM. Curr Hematol Malig Rep. 2015;
Pemmaraju N, Utengen A, Gupta V, Kiladjian JJ, Mesa R, Thompson MA. Social media and myeloproliferative neoplasms (MPN): analysis of advanced metrics from the first year of a new twitter community: #MPNSM. Curr Hematol Malig Rep. 2016;11:456–61.
Perales MA, Drake EK, Pemmaraju N, Wood WA. Social media and the adolescent and young adult (AYA) patient with cancer. Curr Hematol Malig Rep 2016;11(6):449–455. https://doi.org/10.1007/s11899-016-0313-6.
Katz MS, Utengen A, Anderson PF, et al. Disease-specific hashtags for online communication about cancer care. JAMA Oncol. 2016;2:392–4.
Pemmaraju Nea. Results from Phase 2 Trial Ongoing Expansion Stage of SL-401 in Patients with Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN). Blood (ASH abstract #4245, Dec 2016)2016.
Pemmaraju N, Thompson MA, Mesa RA, Desai T. Analysis of the use and impact of twitter during American Society of Clinical Oncology annual meetings from 2011 to 2016: focus on advanced metrics and user trends. J oncol prac / Am Soc Clin Oncol. 2017;13:e623–e31.
Pemmaraju N MR, Majhail NS, Thompson MA. The use and impact of Twitter at medical conferences: best practices and Twitter etiquette. Semin Hematol 2017; https://doi.org/10.1053/j.seminhematol.2017.08.003.
Acknowledgements
The authors thank Dr. Matthew Katz and the creators of the Cancer Ontology Tag (CTO) Program for their inspiration, and the founders and members of Symplur, and the Healthcare Hashtags Project for their continued analysis and support.
Funding
This research is supported in part by the MD Anderson Cancer Center Support Grant P30 CA016672.
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NP, AU, VG, MAT, and AAL collected and analyzed the data, wrote, and approved the final manuscript prior to publication.
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Naveen Pemmaraju reports honorarium/consulting and/or research/grant and clinical trial support: Novartis, LFB, Incyte, Stemline, Cellectis, Abbive, Affymetrix, Roche Diagnostics, and SagerStrong Foundation. Dr. Pemmaraju is a section editor for Current Hematologic Malignancy Reports.
Vikas Gupta received research grants from Novartis, Incyte, Gilead, and Promedior through his institution; served on scientific advisory board of Novartis, Incyte and received honorarium from Novartis/Incyte.
Audun Utengen is Co-founder of Symplur.
Michael A. Thompson has been on Advisory Boards for AIM Specialty Health, BMS, Celgene, Doximity, Takeda, and VIA Oncology. MT owns stock in Doximity. He is a peer reviewer for plasma cell dyscraisias for UpToDate and has royalty in UpToDate.
Andrew A. Lane reports Stemline (research support), N-of-one (consulting).
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This article does not contain any studies with human or animal subjects performed by any of the authors.
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This article is part of the Topical Collection on Social Media Impact of Hematologic Malignancies
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Pemmaraju, N., Utengen, A., Gupta, V. et al. Analysis of First-Year Twitter Metrics of a Rare Disease Community for Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) on Social Media: #BPDCN. Curr Hematol Malig Rep 12, 592–597 (2017). https://doi.org/10.1007/s11899-017-0422-x
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DOI: https://doi.org/10.1007/s11899-017-0422-x