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Understanding Sickle Cell Patients’ Health-Related Quality of Life

Project

An estimated 90,000 Americans have sickle cell disease (SCD), and increased infant screening, improved disease management throughout childhood, and better therapies have all led to much longer lives for people with this rare blood disorder. Yet, these advances raise new questions about the impact and experience of the disease across the lifespan, as people are now managing this chronic health condition at much older ages than before.

To address this need, the National Heart, Lung, and Blood Institute contracted with AIR and Children’s Hospital & Research Center Oakland to develop an SCD health-related quality of life measurement system that would help to bridge the gaps in understanding about adult SCD patients’ experiences and long-term needs (See video: A Voice for Sickle Cell Disease). The result of the collaboration was development of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me, pronounced "Ask Me"). This instrument was designed to meet a number of information needs related to this population, including improving healthcare and informing health policy development.

Adult Sickle Cell Quality-of-Life Measurement Information System (ASCQ-Me): Conceptual Model Based on Review of the Literature and Formative Research, The Clinical Journal of Pain
Patient Reports of Health Outcome for Adults Living with Sickle Cell Disease: Development and Testing of ASCQ-Me Item Banks, Health and Quality of Life Outcomes
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San Keller

Managing Researcher

Topics

Health
Chronic and Infectious Diseases
Patient-Centered Quality & Performance Measurement

Related Resources

A Voice for Sickle Cell Disease

Related Projects

Patient-Reported Outcomes Measurement Information System (PROMIS) Network Center

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