660
Views
17
CrossRef citations to date
0
Altmetric
Review

Health-related quality of life in adult primary immune thrombocytopenia

, , & ORCID Icon
Pages 975-985 | Received 18 Jun 2018, Accepted 13 Nov 2018, Published online: 27 Nov 2018

References

  • Neunert C, Lim W, Crowther M, et al. The American society of hematology 2011 evidence-based practice guideline for immune thrombocytopenia. Blood. 2011;117:4190–4207.
  • Provan D, Stasi R, Newland AC, et al. International consensus report on the investigation and management of primary immune thrombocytopenia. Blood. 2010;115:168–186.
  • Rodeghiero F, Stasi R, Gernsheimer T, et al. Standardization of terminology, definitions and outcome criteria in immune thrombocytopenic purpura of adults and children: report from an international working group. Blood. 2009;113:2386–2393.
  • Erez G, Selman L, Murtagh FE. Measuring health-related quality of life in patients with conservatively managed stage 5 chronic kidney disease: limitations of the medical outcomes study short form 36: SF-36. Qual Life Res. 2016;25:2799–2809.
  • Frederiksen H, Schmidt K. The incidence of idiopathic thrombocytopenic purpura in adults increases with age. Blood. 1999;94:909–913.
  • Michel M, Suzan F, Adoue D, et al. Management of immune thrombocytopenia in adults: a population-based analysis of the French hospital discharge database from 2009 to 2012. Br J Haematol. 2015;170:218–222.
  • Cohen YC, Djulbegovic B, Shamai-Lubovitz O, et al. The bleeding risk and natural history of idiopathic thrombocytopenic purpura in patients with persistent low platelet counts. Arch Intern Med. 2000;160:1630–1638.
  • Michel M. Immune thrombocytopenic purpura: epidemiology and implications for patients. Eur J Haematol. 2009;82(3–7).
  • Efficace F, Mandelli F, Fazi P, et al. Health-related quality of life and burden of fatigue in patients with primary immune thrombocytopenia by phase of disease. Am J Hematol. 2016;91:995–1001.
  • Mathias SD, Gao SK, Miller KL, et al. Impact of chronic Immune Thrombocytopenic Purpura (ITP) on health-related quality of life: a conceptual model starting with the patient perspective. Health Qual Life Outcomes. 2008;6:13.
  • Matzdorff A, Arnold G. Treatment of chronic immune thrombocytopenic purpura: the patients’ perspective. Eur J Haematol. 2007;78:381–388.
  • Cooper N, Bussel J. The pathogenesis of immune thrombocytopaenic purpura. Br J Haematol. 2006;133:364–374.
  • Frederiksen H, Maegbaek ML, Norgaard M. Twenty-year mortality of adult patients with primary immune thrombocytopenia: a Danish population-based cohort study. Br J Haematol. 2014;166:260–267.
  • George JN, Mathias SD, Go RS, et al. Improved quality of life for romiplostim-treated patients with chronic immune thrombocytopenic purpura: results from two randomized, placebo-controlled trials. Br J Haematol. 2009;144:409–415.
  • Hill QA, Newland AC. Fatigue in immune thrombocytopenia. Br J Haematol. 2015;170:141–149.
  • Guidry JA, George JN, Vesely SK, et al. Corticosteroid side-effects and risk for bleeding in immune thrombocytopenic purpura: patient and hematologist perspectives. Eur J Haematol. 2009;83:175–182.
  • McMillan R, Bussel JB, George JN, et al. Self-reported health-related quality of life in adults with chronic immune thrombocytopenic purpura. Am J Hematol. 2008;83:150–154.
  • Brown TM, Horblyuk RV, Grotzinger KM, et al. Patient-reported treatment burden of chronic immune thrombocytopenia therapies. BMC Blood Disord. 2012;12:2.
  • Snyder CF, Mathias SD, Cella D, et al. Health-related quality of life of immune thrombocytopenic purpura patients: results from a web-based survey. Curr Med Res Opin. 2008;24:2767–2776.
  • Kuter DJ, Mathias SD, Rummel M, et al. Health-related quality of life in nonsplenectomized immune thrombocytopenia patients receiving romiplostim or medical standard of care. Am J Hematol. 2012;87:558–561.
  • Sarpatwari A, Watson S, Erqou S, et al. Health-related lifestyle in adults and children with primary immune thrombocytopenia (ITP). Br J Haematol. 2010;151:189–191.
  • Suvajdzic N, Zivkovic R, Djunic I, et al. Health-related quality of life in adult patients with chronic immune thrombocytopenia in Serbia. Platelets. 2014;25:467–469.
  • Zhou Z, Yang L, Chen Z, et al. Health-related quality of life measured by the short form 36 in immune thrombocytopenic purpura: a cross-sectional survey in China. Eur J Haematol. 2007;78:518–523.
  • Arnold DM, Heddle NM, Carruthers J, et al. A pilot randomized trial of adjuvant rituximab or placebo for nonsplenectomized patients with immune thrombocytopenia. Blood. 2012;119:1356–1362.
  • Cheng G, Saleh MN, Marcher C, et al. Eltrombopag for management of chronic immune thrombocytopenia (RAISE): a 6-month, randomised, phase 3 study. Lancet. 2011;377:393–402.
  • Cooper N, Woloski BM, Fodero EM, et al. Does treatment with intermittent infusions of intravenous anti-D allow a proportion of adults with recently diagnosed immune thrombocytopenic purpura to avoid splenectomy? Blood. 2002;99:1922–1927.
  • Mathias SD, Bussel JB, George JN, et al. A disease-specific measure of health-related quality of life for use in adults with immune thrombocytopenic purpura: its development and validation. Health Qual Life Outcomes. 2007;5:11.
  • Mathias SD, Gao SK, Rutstein M, et al. Evaluating clinically meaningful change on the ITP-PAQ: preliminary estimates of minimal important differences. Curr Med Res Opin. 2009;25:375–383.
  • McMillan R, Nugent D. The effect of antiplatelet autoantibodies on megakaryocytopoiesis. Int J Hematol. 2005;81:94–99.
  • King MT. A point of minimal important difference (MID): a critique of terminology and methods. Expert Rev Pharmacoecon Outcomes Res. 2011;11:171–184.
  • King MT, Fayers PM. Making quality-of-life results more meaningful for clinicians. Lancet. 2008;371:709–710.
  • https://euroqol.org/eq-5d-instruments/ EQ–5D. (Ed.^(Eds)
  • Nordin A, Taft C, Lundgren-Nilsson A, et al. Minimal important differences for fatigue patient reported outcome measures-a systematic review. BMC Med Res Methodol. 2016;16:62.
  • Newton JL, Reese JA, Watson SI, et al. Fatigue in adult patients with primary immune thrombocytopenia. Eur J Haematol. 2011;86:420–429.
  • Deuson R, Danese M, Mathias SD, et al. The burden of immune thrombocytopenia in adults: evaluation of the thrombopoietin receptor agonist romiplostim. J Med Econ. 2012;15:956–976.
  • Hamidou Z, Dabakuyo TS, Bonnetain F. Impact of response shift on longitudinal quality-of-life assessment in cancer clinical trials. Expert Rev Pharmacoecon Outcomes Res. 2011;11:549–559.
  • Schwartz CE, Finkelstein JA, Rapkin BD. Appraisal assessment in patient-reported outcome research: methods for uncovering the personal context and meaning of quality of life. Qual Life Res. 2017;26:545–554.
  • Sprangers MA, Schwartz CE. Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med. 1999;48:1507–1515.
  • Schwartz CE, Sprangers MAG. Guidelines for improving the stringency of response shift research using the thentest. Qual Life Res. 2010;19:455–464.
  • Westfall JM, Zittleman L, Felzien M, et al. Institutional review board training when patients and community members are engaged as researchers. Fam Pract. 2017;34:301–304.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.