Inspire study provides new insights into the disease burden of myelodysplastic syndrome
A recent publication titled Patient and Caregiver Insights into the Disease Burden of Myelodysplastic Syndrome sheds light on the experiences of patients and their caregivers living with this disease.
Myelodysplastic syndrome (MDS) is a blood disorder that affects the bone marrow, resulting in abnormal blood cell production. The diagnosis of MDS can be overwhelming and stressful for patients and their families, especially in light of the disease’s uncertain prognosis.
The publication describes findings of a survey conducted on Inspire, the leading patient engagement platform, with 30 respondents who had MDS or leukemia, and their caregivers. Among the 30 respondents, five had MDS, and one was a caregiver for a patient with MDS.
The survey results highlighted the significant emotional distress and symptom burden experienced by patients with MDS, including extreme fatigue due to cytopenias. The respondents reported that MDS negatively impacted their quality of life (QOL) and highlighted the importance of patient-centered care in improving QOL. The publication emphasizes the need for healthcare providers to better understand the disease burden experienced by their patients, establish agreed-upon treatment goals, and involve patients in the decision-making process about their care.