Myeloproliferative neoplasm questionnaire: assessing patient disease knowledge in the modern digital information era

References

• Dickstein JI, Vardiman JW. Hematopathologic findings in the myeloproliferative disorders. Semin Oncol. 1995;22(4):355–373.
   PubMed Web of Science ®Google Scholar
• 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(20):2391–2405.
   PubMed Web of Science ®Google Scholar
• Tefferi A, Pardanani A. Myeloproliferative neoplasms: a contemporary review. JAMA Oncol. 2015;1(1):97–105.
   PubMed Web of Science ®Google Scholar
• Barbui T, Thiele J, Gisslinger H, et al. The 2016 WHO classification and diagnostic criteria for myeloproliferative neoplasms: document summary and in-depth discussion. Blood Cancer J. 2018;8(2):15.
   PubMedGoogle Scholar
• Gaidano G, Guerrasio A, Serra A, et al. Molecular mechanisms of tumor progression in chronic myeloproliferative disorders. Leukemia. 1994;(8 Suppl 1):S27–S29.
   PubMedGoogle Scholar
• Barbui T, Tefferi A, Vannucchi AM, et al. Philadelphia chromosome-negative classical myeloproliferative neoplasms: revised management recommendations from European LeukemiaNet. Leukemia. 2018;32(5):1057–1069.
   PubMed Web of Science ®Google Scholar
• Pemmaraju N, Gupta V, Thompson MA, et al. Social media and internet resources for patients with blastic plasmacytoid dendritic cell neoplasm (BPDCN). Curr Hematol Malig Rep. 2016;11(6):462–467.
   PubMed Web of Science ®Google Scholar
• 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. 2017;12(6):592–597.
   PubMed Web of Science ®Google Scholar
• Pemmaraju N, Utengen A, Gupta V, et al. Rare cancers and social media: analysis of Twitter Metrics in the first 2 years of a rare-disease community for myeloproliferative neoplasms on social media-#MPNSM. Curr Hematol Malig Rep. 2017;12(6):598–604.
   PubMed Web of Science ®Google Scholar
• Pemmaraju N, Gupta V, Mesa R, et al. Social media and myeloproliferative neoplasms (MPN)-focus on Twitter and the development of a disease-specific community: #MPNSM. Curr Hematol Malig Rep. 2015;10(4):413–420.
   PubMed Web of Science ®Google Scholar
• Brochmann N, Zwisler A-D, Kjerholt M, et al. A new internet-based tool for reporting and analysing patient-reported outcomes and the feasibility of repeated data collection from patients with myeloproliferative neoplasms. Qual Life Res. 2016;25(4):835–846.
   PubMed Web of Science ®Google Scholar
• Noens L, Hensen M, Kucmin-Bemelmans I, et al. Measurement of adherence to BCR-ABL inhibitor therapy in chronic myeloid leukemia: current situation and future challenges. Haematologica. 2014;99(3):437–447.
   PubMed Web of Science ®Google Scholar
• Marin D, Bazeos A, Mahon F-X, et al. Adherence is the critical factor for achieving molecular responses in patients with chronic myeloid leukemia who achieve complete cytogenetic responses on imatinib. J Clin Oncol. 2010;28(14):2381–2388.
   PubMed Web of Science ®Google Scholar
• Geissler J, Sharf G, Bombaci F, et al. Factors influencing adherence in CML and ways to improvement: results of a patient-driven survey of 2546 patients in 63 countries. J Cancer Res Clin Oncol. 2017;143(7):1167–1176.
   PubMed Web of Science ®Google Scholar
• Hirji I, Gupta S, Goren A, et al. Chronic myeloid leukemia (CML): association of treatment satisfaction, negative medication experience and treatment restrictions with health outcomes, from the patient’s perspective. Health Qual Life Outcomes. 2013;11(1):167.
   PubMedGoogle Scholar
• Efficace F, Breccia M, Saussele S, et al. Which health-related quality of life aspects are important to patients with chronic myeloid leukemia receiving targeted therapies and to health care professionals? GIMEMA and EORTC Quality of Life Group. Ann Hematol. 2012;91(9):1371–1381.
   PubMed Web of Science ®Google Scholar
• Brochmann N, Flachs EM, Christensen AI, et al. Health-related quality of life in patients with Philadelphia-negative myeloproliferative neoplasms: a nationwide population-based survey in Denmark. Cancers. 2020;12(12):3565.
   PubMed Web of Science ®Google Scholar
• Harrison CN, Koschmieder S, Foltz L, et al. The impact of myeloproliferative neoplasms (MPNs) on patient quality of life and productivity: results from the international MPN Landmark survey. Ann Hematol. 2017;96(10):1653–1665.
   PubMed Web of Science ®Google Scholar
• Harrison C, Mathias J, Campbell-Drew M, et al. UK results from the myeloproliferative neoplasms (MPN) landmark survey on the symptom, emotional and economic burden of MPN. Br J Haematol. 2019;186(3):e1–e4.
   PubMed Web of Science ®Google Scholar
• Mesa R, Miller CB, Thyne M, et al. Myeloproliferative neoplasms (MPNs) have a significant impact on patients' overall health and productivity: the MPN Landmark survey. BMC Cancer. 2016;16:167.
   PubMed Web of Science ®Google Scholar
• Padrnos L, Scherber R, Geyer H, et al. Depressive symptoms and myeloproliferative neoplasms: understanding the confounding factor in a complex condition. Cancer Med. 2020;9(22):8301–8309.
   PubMed Web of Science ®Google Scholar
• Christensen SF, Scherber RM, Brochmann N, et al. Body Mass Index and total symptom burden in myeloproliferative neoplasms discovery of a U-shaped association. Cancers. 2020;12(8):2202.
   PubMed Web of Science ®Google Scholar
• Grunwald MR, Burke JM, Kuter DJ, et al. Symptom burden and blood counts in patients with polycythemia vera in the United States: an analysis from the REVEAL study. Clin Lymphoma Myeloma Leuk. 2019;19(9):579–584.e1.
   PubMed Web of Science ®Google Scholar
• Palmer JM, Mead-Harvey C, Harrison C, et al. Impact of COVID19 pandemic on an international MPN patient population: survey results from 1560 MPN patients. Am Soc Hematol. 2020;136 (Suppl 1):1–3.
   Google Scholar
• Zeidan AM, Boddu PC, Patnaik MM, et al. Special considerations in the management of adult patients with acute leukaemias and myeloid neoplasms in the COVID-19 era: recommendations from a panel of international experts. Lancet Haematol. 2020;7(8):e601–e612.
   PubMed Web of Science ®Google Scholar
• Paul S, Rausch CR, Jain N, et al. Treating leukemia in the time of COVID-19. Acta Haematol. 2020. doi:10.1159/000508199
   PubMed Web of Science ®Google Scholar
• Gowin K, Langlais BT, Kosiorek HE, et al. The SIMM study: survey of integrative medicine in myeloproliferative neoplasms. Cancer Med. 2020;9(24):9445–9453.
   PubMed Web of Science ®Google Scholar
• Huberty J, Eckert R, Dueck A, et al. Online yoga in myeloproliferative neoplasm patients: results of a randomized pilot trial to inform future research. BMC Complement Altern Med. 2019;19(1):121.
   PubMedGoogle Scholar
• Loxton D, Harris ML, Forder P, et al. Factors influencing web-based survey response for a longitudinal cohort of young women born between 1989 and 1995. J Med Internet Res. 2019;21(3):e11286.
   PubMed Web of Science ®Google Scholar
• Cull WL, O'Connor KG, Sharp S, et al. Response rates and response bias for 50 surveys of pediatricians. Health Serv Res. 2005;40(1):213–226.
   PubMed Web of Science ®Google Scholar
• Pershad Y, Hangge PT, Albadawi H, et al. Social medicine: Twitter in healthcare. JCM. 2018;7(6):121.
   Google Scholar
• Harbishettar V, Krishna KR, Srinivasa P, et al. The enigma of doctor-patient relationship. Indian J Psychiatry. 2019;61(Suppl 4):S776–S781.
   PubMedGoogle Scholar
• Kaba R, Sooriakumaran P. The evolution of the doctor-patient relationship. Int J Surg. 2007;5(1):57–65.
   PubMedGoogle Scholar
• Freckelton IR. Internet disruptions in the doctor-patient relationship. Med Law Rev. 2020;28(3):502–525.
   PubMed Web of Science ®Google Scholar
• Gomes VTS, Rodrigues RO, Gomes RNS, et al. The doctor-patient relationship in the context of the COVID-19 pandemic. Rev Assoc Med Bras (1992). 2020;66 (Suppl 2):7–9.
   Google Scholar
• Singh M. Communication as a bridge to build a sound doctor-patient/parent relationship. Indian J Pediatr. 2016;83(1):33–37.
   PubMed Web of Science ®Google Scholar