Skip to main content

Social Media and Internet Resources for Patients with Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN)

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.

This is a preview of subscription content, access via your institution.

Fig. 1

References

  1. 1.

    Andrew P, Vickers MM, O'Connor S, Valdes M, Tang PA. Media reporting of practice-changing clinical trials in oncology: a North American perspective. Oncologist. 2016;21(3):269–78.

    Article  PubMed  Google Scholar 

  2. 2.

    Thompson MA, Majhail NS, Wood WA, Perales MA, Chaboissier M. Social media and the practicing hematologist: twitter 101 for the busy healthcare provider. Curr Hematol Malig Rep. 2015;10(4):405–12.

    Article  PubMed  PubMed Central  Google Scholar 

  3. 3.

    Thompson MA, Younes A, Miller RS. Using social media in oncology for education and patient engagement. Oncology (Williston Park). 2012;26(9):782, 784–5, 791.

    Google Scholar 

  4. 4.

    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.

  5. 5.

    Thompson MA. Using social media to learn and communicate: it is not about the tweet. Am Soc Clin Oncol Educ Book. 2015;206–211. doi:10.14694/EdBook_AM.2015.35.206.

  6. 6.

    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;33:6520.

    Google Scholar 

  7. 7.

    Attai DJ, Sedrak MS, Katz MS, et al. Social media in cancer care: highlights, challenges & opportunities. Future Oncol. 2016.

  8. 8.

    Xu S, Markson C, Costello KL, Xing CY, Demissie K, Llanos AA. Leveraging social media to promote public health knowledge: example of cancer awareness via twitter. JMIR Public Health Surveillance. 2016;2(1):e17.

    Article  PubMed  PubMed Central  Google Scholar 

  9. 9.

    Attai DJ, Cowher MS, Al-Hamadani M, Schoger JM, Staley AC, Landercasper J. Twitter social media is an effective tool for breast cancer patient education and support: patient-reported outcomes by survey. J Med Internet Res. 2015;17(7):e188.

    Article  PubMed  PubMed Central  Google Scholar 

  10. 10.

    Savage N. Scientists in the twitterverse. Cell. 2015;162(2):233–4.

    CAS  Article  PubMed  Google Scholar 

  11. 11.

    Thompson MA. Social media in clinical trials. Am Soc Clin Oncol Educ Book. 2014;e101-105. doi:10.14694/EdBook_AM.2014.34.e101.

  12. 12.

    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.

  13. 13.

    Borgmann H, Woelm JH, Merseburger A, et al. Qualitative twitter analysis of participants, tweet strategies, and tweet content at a major urologic conference. Can Urol Assoc J. 2016;10(1–2):39–44.

    Article  PubMed  PubMed Central  Google Scholar 

  14. 14.

    Borgmann H, Loeb S, Salem J, et al. Activity, content, contributors, and influencers of the twitter discussion on urologic oncology. Urol Oncol. 2016.

  15. 15.

    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(5):937–51.

    CAS  Article  PubMed  Google Scholar 

  16. 16.

    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(12):1055–61.

    CAS  Article  PubMed  Google Scholar 

  17. 17.

    Pagano L, Valentini CG, Pulsoni A, et al. Blastic plasmacytoid dendritic cell neoplasm with leukemic presentation: an Italian multicenter study. Haematologica. 2013;98(2):239–46.

    Article  PubMed  PubMed Central  Google Scholar 

  18. 18.

    Pemmaraju N ea. Characteristics of patients with blastic plasmacytoid dendritic cell neoplasm (BPDCN): male predominance, propensity for extra-medullary involvement, and poor outcomes. ASCO Annual Meeting. 2014.

  19. 19.

    Laribi K, Denizon N, Besancon A, et al. Blastic plasmacytoid dendritic cell neoplasm: from origin of the cell to targeted therapies. Biol Blood Marrow Transplant. 2016;22(8):1357–67.

  20. 20.

    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(9):10174–81.

    PubMed  PubMed Central  Google Scholar 

  21. 21.

    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(3):283–6.

    CAS  Article  PubMed  Google Scholar 

  22. 22.

    Pemmaraju N. Blastic plasmacytoid dendritic cell neoplasm. Clin Adv Hematol Oncol. 2016;14(4):220–2.

    PubMed  Google Scholar 

  23. 23.

    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(23):3559–62.

    CAS  Article  PubMed  Google Scholar 

  24. 24.

    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(7):1006–12.

    CAS  Article  PubMed  Google Scholar 

  25. 25.

    Testa U, Pelosi E, Frankel A. CD 123 is a membrane biomarker and a therapeutic target in hematologic malignancies. Biomarker research. 2014;2(1):4.

    Article  PubMed  PubMed Central  Google Scholar 

  26. 26.

    Jordan CT, Upchurch D, Szilvassy SJ, et al. The interleukin-3 receptor alpha chain is a unique marker for human acute myelogenous leukemia stem cells. Leukemia. 2000;14(10):1777–84.

    CAS  Article  PubMed  Google Scholar 

  27. 27.

    Frankel AE, Woo JH, Ahn C, et al. Activity of SL-401, a targeted therapy directed to interleukin-3 receptor, in blastic plasmacytoid dendritic cell neoplasm patients. Blood. 2014;124(3):385–92.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  28. 28.

    LA Pemmaraju N, Sweet KL, Stein A, Sumithira V, Blum WG. Results from phase 2 registration trial of SL-401 in patients with blastic plasmacytoid dendritic cell neoplasm (BPDCN): Lead-in completed, expansion stage ongoing. J Clin Oncol. 2016;34:7006.

    Google Scholar 

  29. 29.

    Wells DM, Lehavot K, Isaac ML. Sounding off on social media: the ethics of patient storytelling in the modern era. Acad Med. 2015;90(8):1015–9.

    Article  PubMed  Google Scholar 

  30. 30.

    Reimer P, Rudiger T, Kraemer D, et al. What is CD4+CD56+ malignancy and how should it be treated? Bone Marrow Transplant. 2003;32(7):637–46.

    CAS  Article  PubMed  Google Scholar 

  31. 31.

    Dimov V, Eidelman F. Utilizing social networks, blogging and youtube in allergy and immunology practices. Expert Rev Clin Immunol. 2015;11(10):1065–8.

    CAS  Article  PubMed  Google Scholar 

  32. 32.

    Grajales 3rd FJ, Sheps S, Ho K, Novak-Lauscher H, Eysenbach G. Social media: a review and tutorial of applications in medicine and health care. J Med Internet Res. 2014;16(2):e13.

    Article  PubMed  Google Scholar 

  33. 33.

    Lewis MA, Dicker AP. Social media and oncology: the past, present, and future of electronic communication between physician and patient. Semin Oncol. 2015;42(5):764–71.

    Article  PubMed  PubMed Central  Google Scholar 

  34. 34.

    Launer J. The age of twitter. Postgrad Med J. 2013;89(1057):675–6.

    Article  PubMed  Google Scholar 

  35. 35.

    Sedrak MS, Cohen RB, Merchant RM, Schapira MM. Cancer communication in the social media age. JAMA Oncol. 2016;2(6):822–3.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

This research is supported in part by the MD Anderson Cancer Center Support Grant P30 CA016672. The authors thank Dr Matthew Katz and the creators of the Cancer Ontology Tag (CTO) Program for their example and inspiration, and the founders and members of Symplur.com, including Audun Utengen and the Healthcare Hashtags (@healthhashtags) Project for their continued analysis and support.

Author information

Affiliations

Authors

Corresponding author

Correspondence to Naveen Pemmaraju.

Ethics declarations

Conflict of Interest

Naveen Pemmaraju reports Honorarium/Consulting and/or Research & Clinical trial support: Novartis, LFB, Incyte, Stemline, Cellectis.

Vikas Gupta received research grants from Novartis, Incyte, Gilead, and Promedior through his institution; served on scientific advisory board of Novartis and Incyte and received honorarium from Novartis/Incyte.

Michael A. Thompson is on Advisory Boards: AIM Specialty Health, BMS, Celgene, Takeda, VIA Oncology.

Andrew A. Lane reports research support, Consulting: Stemline.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

Additional information

This article is part of the Topical Collection on Social Media Impact of Hematologic Malignancies

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Pemmaraju, N., Gupta, V., Thompson, M.A. et al. Social Media and Internet Resources for Patients with Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN). Curr Hematol Malig Rep 11, 462–467 (2016). https://doi.org/10.1007/s11899-016-0340-3

Download citation

Keywords

  • Social media
  • Twitter
  • BPDCN
  • Disease-specific hashtag
  • Rare disease
  • #BPDCN