Myelodysplastic Syndromes (MDS) in America 2023: Understanding the MDS Patient Experience

This 86-page myelodysplastic syndromes (MDS) in America report provides a comprehensive look at life for those living with myelodysplastic syndromes. Using detailed quantitative data, it gives a full picture of the MDS patient experience - from symptoms to treatment to HCP relationships to quality of life - so you can make informed, strategic decisions, identify opportunities, and understand potential challenges.

There are about 20,000 new cases of MDS each year in the United States. About 1 in 3 people with MDS develop acute myeloid leukemia (AML).

Myelodysplastic Syndromes (MDS) in America 2023: Understanding the MDS Patient Experience offers an in-depth look at the MDS patient experience. This large-scale, patient-reported data leverages vital quantitative insights essential to understanding key touchpoints in the MDS patient journey, including condition management, HCP engagement, quality of life, treatment experience and satisfaction, and much more.

What makes this report unique?

Very simply: the analyst's focus on patients. This syndicated report is one of the few studies that is based on primary research with diagnosed patients, bringing the patient voice to the forefront.

Valuable insights. Informed decisions.

This report lifts the curtain on life with MDS, giving stakeholders an actionable look at the behaviors, attitudes, perceptions, needs, and experiences of people living with the condition. Data can be used to inform strategic decisions, including product communications, competitive assessments, concept development, landscape analyses, patient journey overlays, and forecasting inputs.

This report also addresses important questions that stakeholders may not even know to ask while offering valuable insights into must-have patient-reported data points not available anywhere else. Add-on custom data analysis opportunities are also available for an additional cost.

The analyst is a proven leader in understanding the experiences of people living with chronic health conditions. Through their portfolio of 45+ condition-specific online health communities, they reach millions of individuals, offering information, connection, and support to patients and caregivers in the U.S.

This report includes a deep-dive into:

• MDS patient demographics
  • Age, gender, ethnicity, marital status, children, employment status, income, location, insurance, and other health conditions
• Impact of MDS on quality of life
  • Time since diagnosis, remission status, impact on quality of life, symptoms experienced, and what patients wish others better understood
• Information-seeking behaviors
  • Information sources used, plus topics of interest
• HCP engagement
  • Primary HCP seen for condition, satisfaction with HCP, and discussion about brands aware of/not used
• MDS treatment awareness and experiences
  • Aided awareness of specific treatments, treatment experience, satisfaction with current treatments, perceived control with current treatment plan, and interest/participation in clinical trials

Key questions answered in this report:

• To what extent do people say MDS impacts their overall quality of life?
• What percentage of patients have received 3+ courses of treatment?
• What do patients wish others understood about MDS?
• What percentage of patients see a specialist for MDS treatment?
• What treatments have the highest aided brand awareness among patients?
• What percentage of patients have used targeted therapy or immunotherapy?
• How many patients feel their MDS is well-controlled on their current treatment plan?
• What percentage of patients are likely to switch or add new treatments in the next six months?
• What are the top online resources people with MDS use to find information?
• What kinds of content and information do patients search for?
• What percentage of patients search for information on treatment options?

Methodology

• The report consists of:
  • A 20-minute online quantitative survey, covering demographics, comorbidities, quality of life/impact, HCP interactions, as well as treatment awareness, experiences, and discussions
  • Qualitative patient insights from open-ended responses

Additional details:

• Fielded: January 16, 2023 to April 14, 2023
• Convenience sample of 91 respondents diagnosed with MDS
• Respondents are age 18+, living in the U.S., and are recruited from proprietary online health communities and recruiting partners