Global Patient Survey

Global Patient Survey

The world’s largest international survey of MDS patients, collecting vital data on patient experiences, treatment access, and quality of life to drive better care worldwide.

2024 Survey Overview

Survey Scope

  • 50+ Countries
    Global patient participation
  • 2,500+ Responses
    Comprehensive data collection
  • 25 Languages
    Accessible worldwide
  • All MDS Subtypes
    Inclusive representation

Key Focus Areas

  • Diagnosis journey and delays
  • Treatment access and barriers
  • Quality of life impacts
  • Supportive care needs
  • Healthcare satisfaction
  • Information and education gaps

Key Findings

Diagnosis Experience

  • Average time to diagnosis: 8.3 months from first symptoms
  • Multiple healthcare visits: 62% saw 3+ doctors before diagnosis
  • Misdiagnosis: 41% initially diagnosed with other conditions
  • Awareness challenges: 73% had never heard of MDS before diagnosis

Treatment Access

High-Income Countries

  • 94% access to blood transfusions
  • 78% access to hypomethylating agents
  • 45% access to newer therapies
  • 32% access to stem cell transplant

Lower-Income Countries

  • 67% access to blood transfusions
  • 23% access to hypomethylating agents
  • 8% access to newer therapies
  • 5% access to stem cell transplant

Quality of Life Impact

  • Fatigue: 89% report significant impact on daily activities
  • Employment: 54% reduced work hours or stopped working
  • Financial burden: 68% face significant treatment costs
  • Mental health: 71% experience anxiety or depression
  • Social isolation: 58% report reduced social activities

Regional Insights

Europe

  • Better treatment access overall
  • Significant country variations
  • Strong patient support networks
  • High satisfaction with care teams

North America

  • Wide treatment availability
  • High financial burden concerns
  • Insurance coverage challenges
  • Active patient advocacy

Asia-Pacific

  • Growing treatment access
  • Varied healthcare systems
  • Cultural considerations
  • Emerging patient groups

Survey Impact

Data from our Global Patient Survey drives real change:

  • Policy Advocacy: Evidence for improved treatment access and reimbursement
  • Clinical Research: Patient-centered outcomes for clinical trials
  • Healthcare Quality: Identify gaps in care and support services
  • Patient Education: Address information needs and concerns
  • Global Awareness: Highlight MDS challenges to broader audiences

Participate in Future Surveys

Your voice matters! Share your experience to help improve MDS care worldwide.

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Publications

Survey results are published in peer-reviewed journals and presented at major conferences:

  • Journal of Hematology (2024)
  • Blood Advances (2023)
  • EHA Congress presentations
  • ASH Annual Meeting abstracts