Patients’ perspectives on the use of oral decitabine and cedazuridine in the treatment of MDS

Hypomethylating agents (HMAs) play a pivotal role in the treatment of myelodysplastic neoplasms (MDS).¹ Azacitidine and decitabine are guideline-approved HMAs for patients with MDS. However, administering HMA therapy via intravenous (IV) or subcutaneous (SC) routes can be challenging due to pain at the site of administration, patient anxiety, and a time and cost burden associated with completing the recommended 4–6 cycles and the resulting interference with daily activities.

These issues can lead to non-compliance, particularly in elderly patients, and treatment cessation in at least half of patients with MDS. Underuse of HMAs in the treatment of MDS is mainly due to the majority of patients being older, and who therefore lack the social support needed to manage appointments and travel to the treatment centers, consequently leading to higher healthcare utilization and poorer survival outcomes.¹ The oral formulation of decitabine combined with cedazuridine (DEC-C) has been approved for the treatment of patients with newly diagnosed MDS.

During the 17th International Congress on Myelodysplastic Syndromes, Amer Zeidan presented the findings of an online survey exploring the perspectives of patients with MDS on the use of oral DEC-‍C,¹ which we are pleased to summarize here.

Study design and patient characteristics

This was an online survey conducted in the United States between November 10, 2022, and December 5, 2022, in a cohort of adult patients with MDS receiving oral DEC-C in 2021–2022 as an alternative to IV/SC HMAs. The survey was a 25-item questionnaire with 23 fixed responses and two free-text questions, estimated to take ⁓15 minutes to complete. It assessed patients’ perspectives on:

• Satisfaction with treatment
• Impact on quality of life
• Impact on daily activities
• Oral DEC-C treatment versus other HMA therapies

A total of 150 patients completed the survey, of which 94 were male and 92 were aged ≥60 years (Table 1).

Table 1. Baseline characteristics*

Results

Overall, 53% of patients found the use of oral DEC-C either extremely or very convenient and 30% of patients found it convenient. In terms of satisfaction, 49% and 37% of patients were either satisfied or very satisfied with oral DEC-C, respectively (Figure 1).

Figure 1. A Convenience and B satisfaction of use of oral DEC-C*

DEC-C, decitabine and cedazuridine.
*Adapted from Zeidan.¹

Most patients did not find that oral DEC-C treatment interfered with their daily or social activities or productivity (Figure 2). Side effects from oral DEC-C were the most common negative impact on quality of life reported by 30% of patients.

Figure 2. Impact of oral DEC-C on daily and social activities and on productivity* 

DEC-C, decitabine and cedazuridine.
*Adapted from Zeidan.¹

Most patients reported less interference with oral DEC-C on their daily activities and a better experience overall with oral DEC-C compared with IV/SC HMAs they had previously received (Figure 3).

Figure 3. Overall experience of using oral DEC-C versus prior HMAs* 

DEC-C, decitabine and cedazuridine; HMA, hypomethylating agent.
*Adapted from Zeidan.¹

Conclusion

These results demonstrate that oral DEC-C has little to no impact on daily activities of the patients who completed the online survey. In addition, patients also reported personal benefits, including improved quality of life with oral DEC-C versus IV/SC HMAs. Overall, the survey respondents stated improved experience associated with oral DEC-C. The authors commented that this was the first survey of patients’ experience with an oral HMA for MDS; however, the results were limited by potential selection bias due to an online survey being more appealing to a younger “technology proficient” population, being delivered by hematologists or oncologists, and a higher likelihood of patients with a positive experience participating. Self-reporting of treatment history, inclusion criteria not differentiating between patients with higher- or lower-risk MDS, and lack of reported reasons for treatment cessation were other limitations of the study. Future studies on real-world treatment patterns in patients with MDS receiving oral DEC-C are currently ongoing.