AA&MDSIF Survey Finds Differences Between MDS Patients and Health Care Professionals on Risks and Benefits of Treatment | Aplastic Anemia and MDS International Foundation

AA&MDSIF Survey Finds Differences Between MDS Patients and Health Care Professionals on Risks and Benefits of Treatment

In 2013, AA&MDSIF coordinated with a group of MDS clinical research experts led by David Steensma, MD, of the Dana-Farber Cancer Institute, to design and conduct surveys of MDS patients and healthcare professionals (HCPs) who treat MDS patients. These surveys were intended to identify the gaps in perception between patients and HCP’s regarding understanding of MDS and treatment effectiveness, and the results were summarized in a recently published article in the journal Cancer.

The overall recommendation from the survey results is that patients, caregivers and their health care team should coordinate treatment decision-making to ensure that quality of life issues are adequately addressed. Contributing factors to poor health-related quality of life and clinical outcomes for MDS patients may include limited use of currently available therapies, incomplete understanding of the disease by patients and HCPs, and premature discontinuation of potentially effective treatments.

Key findings and conclusions included:

  • Only 29% of patients reported that they believed MDS is ever “curable,” compared to 52% of physicians

Patients may not understand that in some cases MDS can be “cured” with hematopoietic stem cell transplantation (HCST) because they have not been educated about and offered this therapy; underuse of HSCT, despite recent advances making it more appropriate for older patients, may contribute to this misperception.

  • Compared to patients, physicians and other HCPs tended to overestimate the benefits of treatment with respect to patients’ quality of life, yet patients were more willing to continue treatment despite side effects if there was a chance of benefit.

Better education and communication might improve patients’ and physicians’ understanding of MDS and the impact of MDS treatment, leading to better treatment compliance and responses to treatment. 

  • The most common reasons cited by both patients and physicians for stopping treatment early were that the treatment was making the patient feel too sick to continue, side effects were interfering with the patient’s regular activities, and the burden of treatment was outweighing the benefits to the patient.

Physicians may recommend discontinuation of therapy because of perceptions that patients are doing more poorly than they actually are, whereas some patients may remain willing to continue therapy if adverse events are addressed and there is still a chance of response.


*Steensma DP, Komrokji RS, Stone RM, List AF, Garcia-Manero G, Huber JM, Dennison B, Sekeres MA Disparity in perceptions of disease characteristics, treatment effectiveness, and factors influencing treatment adherence between physicians and patients with myelodysplastic syndromes. Cancer. 2014 Jun 1;120(11):1670-6. doi: 10.1002/cncr.28631. Epub 2014 Feb 27.