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Exploring the role of digital tools in rare disease management: An interview-based study
Andrea Chang1, Sarah D Huang2, Daniel J Benjamin1,3,4
1Department of Human Genetics, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, California, USA.
Journal of Genetic Counseling
|May 14, 2024
Summary
Digital tools are vital for rare disease management, offering support for individuals and caregivers. Future tools should prioritize centralized, trustworthy information and community building to reduce the burden of rare disease care.
Area of Science:
- Health Informatics
- Rare Diseases
- Digital Health
Background:
- Rare diseases impact up to 10% of the global population, highlighting a need for effective management strategies.
- The role of digital tools in the healthcare management of rare diseases and their caregivers remains underexplored.
Purpose of the Study:
- To explore how digital tools benefit the rare disease community.
- To identify healthcare gaps unmet by current digital tools.
- To recommend features for future digital health tools.
Main Methods:
- Qualitative interview-based study utilizing purposive sampling from rare disease organizations.
- Eight semi-structured interviews conducted via Zoom with individuals and caregivers affected by rare diseases.
- Reflexive thematic analysis to identify key themes in digital tool utilization.
Main Results:
- Digital tools should aim to reduce the burden of managing rare disease conditions.
- Fostering community building and promoting trust are essential functions for digital tools.
- Providing trusted, personalized information is crucial for understanding rare diseases and their prognosis.
Conclusions:
- Digital tools are integral to the daily lives of individuals with rare diseases and their caregivers.
- There is a need for digital tools that centralize reliable information and facilitate community interaction.
- Genetic counselors can leverage insights on ideal digital tool attributes to guide patients and caregivers toward valuable resources.
