patient care perspectives
Improving Access to Care for Patients With MDS
Patients with myelodysplastic syndrome (MDS) may have limited mobility or transportation issues that interfere with their ability to receive treatment or participate in clinical trials. This need is recognized, and some initiatives to improve access have been described.
“We would like to one day have mobile units and to be able to provide much of this care in the setting of the patient’s home or somewhere much closer to their home, including being able to check blood, do transfusions, and even administer some oral treatments under supervision at the patient's location. However, that is not yet the reality as of today.”
When you think about patients with MDS and their needs, it is true that access to care can be an issue, and some patients face more obstacles than others. Many of our patients are traveling from a significant distance to receive care, sometimes driving 2 to 3 hours to reach our center. Socioeconomic factors and/or a lack of social support may translate into difficulties with transportation to and from an office for treatment. An initiative to take treatment closer to home has been described in the United Kingdom, where community nurses can deliver azacitidine treatments to patients, blood tests can be performed at home, and transfusions can be arranged at a local hospital or hospice (whichever institution is closer to the patient).
A challenge with implementing home-based models here in the United States is that few treatments are allowed to be given at home. Some oral medications are now available, which is helpful in this regard, but treatments ranging from erythropoiesis-stimulating agents to hypomethylating agents must be administered in an office. There are logistic challenges, even in the monitoring of many patients. We would like to one day have mobile units and to be able to provide much of this care in the setting of the patient’s home or somewhere much closer to their home, including being able to check blood, do transfusions, and even administer some oral treatments under supervision at the patient's location. However, that is not yet the reality as of today.
Clinical trial participation in higher-risk MDS may be especially important in all age groups, but this, too, is associated with barriers and access-to-care issues. One of our most significant challenges is getting patients, particularly older individuals, to enroll in clinical trials. Typically, the trials are conducted at tertiary academic centers, and participation often involves more visits and tests than would otherwise be needed. For some patients, clinical trials are just not feasible due to factors such as the patient’s limitations and the logistical requirements of the trial. Troublesome scenarios may arise, such as a patient who may need a caregiver but has no such person for support. Nurse navigators can help with some of the logistics of clinical trial enrollment, but not all. Some creative ways to overcome certain barriers include looking into transportation and lodging for patients who are traveling from a distance.
But part of the challenge in clinical trial access and in treating patients with MDS closer to home is also related to the intrinsic challenge of the disease itself. Patients with MDS and leukemia require a great deal of supportive care, and it can be a relatively unique population because of the severity of the cytopenias.
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Steensma DP, Brunner AM, DeZern AE, et al. Low clinical trial accrual of patients with myelodysplastic syndromes: causes and potential solutions. Cancer. 2018;124(24):4601-4609. doi:10.1002/cncr.31769
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