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Patient burden in myelodysplastic syndromes (MDS)

Patient burden in myelodysplastic syndromes (MDS)

The impact of anemia in myelodysplastic syndromes (MDS) is mental, physical, and emotional1-7

  • Many patients report poor mental health due to the disease1,2
  • Treatment disrupts their lives and burdens their loved ones1-4
  • Transfusions put them at risk for further complications, such as iron toxicity and red blood cell (RBC) alloimmunization5-7

Diagnosis of MDS is emotionally devastating, frequently leading to depression and anxiety1

In a survey of patients with MDS (n=361)2*:

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~7 days

per month, on average, patients felt their mental health was poor

*Based on the results of an online survey completed by 361 patients with MDS, 234 (65%) of whom received a blood transfusion.2

Demands of medical care take precious time away from patients and their caregivers, disrupting their lives and routines1,3,4

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Lack of reliable transportation to/from appointments1†

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Potential need for multiple transfusions per month1†

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~5 hours per transfusion, including monitoring and travel time3,4‡§

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Setbacks at work—including time off and compromised career opportunities1†

†Based on the results of an online survey completed by 4 patients with MDS and 1 caregiver for a patients with MDS.1

‡According to a study of patient burden (time spent) associated with outpatient RBC transfusions.4

§Total time may vary, depending on number of blood units transfused.4

Are your patients telling you everything about their transfusion experience?

In a survey of patients with MDS receiving transfusions (n=234)2*:

65%

would undergo a different treatment to stop or reduce their transfusion burden, even if it temporarily made them feel worse

34%

felt that transfusions were a burden to their family

*Based on the results of an online survey completed by 361 patients with MDS, 234 (65%) of whom received a blood transfusion.2

High transfusion burden puts patients at risk for further complications5-7

Most patients are, or eventually become, transfusion-dependent.8 These transfusions can put patients at risk for iron toxicity and RBC alloimmunization.5-7

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Complications of iron toxicity include liver damage and cardiomyopathy5

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RBC alloimmunization may result in hemolytic reactions and create future challenges with finding a blood match9

References:

1. Soper J, Sadek I, Urniasz-Lippel A, Norton D, Ness M, Mesa R. Patient and caregiver insights into the disease burden of myelodysplastic syndrome. Patient Relat Outcome Meas. 2022;13:31-38. 2. Sekeres MA, Maciejewski JP, List AF, et al. Perceptions of disease state, treatment outcomes, and prognosis among patients with myelodysplastic syndromes: results from an internet-based survey. Oncologist. 2011;16(6):901-911. 3. The Aplastic Anemia and MDS International Foundation. Blood transfusions. Accessed April 3, 2023. https://www.aamds.org/treatments/therapies/blood-transfusions 4. Shreay S, Desrosiers MP, Corey-Lisle P, Payne K. A retrospective study to evaluate time burden associated with outpatient red blood cell transfusions indicated for anemia due to concomitantly administered chemotherapy in cancer patients. Support Care Cancer. 2013;21(5):1335-1340. 5. Germing U, Oliva EN, Hiwase D, Almeida A. Treatment of anemia in transfusion-dependent and non-transfusion-dependent lower-risk MDS: current and emerging strategies. Hemasphere. 2019;3(6):e314. doi:10.1097/HS9.0000000000000314 6. Zalpuri S, Zwaginga JJ, van der Bom JG. Risk factors for aollimmunisation after red blood cell transfusions (R-FACT): a case cohort study. BMJ Open. 2012;2(3):e001150. doi:10.1136/bmjopen-2012-001150 7. Shah J, Kurtin SE, Arnold L, Lindroos-Kolqvist P, Tinsley S. Management of transfusion-related iron overload in patients with myelodysplastic syndromes. Clin J Oncol Nurs. 2012;16(3)(suppl)37-46. 8. Lewis R, Bewersdorf JP, Zeidan AM. Clinical management of anemia in patients with myelodysplastic syndromes: an update on emerging therapeutic options. Cancer Manag Res. 2021;13:645-657. 9. Alves VM, Martins PRJ, Soares S, et al. Alloimmunization screening after transfusion of red blood cells in a prospective study. Rev Bras Hematol Hemoter. 2012;34(3):206-211.