Full Description
Sickle cell disease (SCD), a group of inherited blood disorders affecting approximately 100,000 people in the U.S., is a life-long condition that impacts every organ system in the body. Symptoms and complications vary from mild to severe and can include acute and chronic pain, acute chest syndrome, stroke, and organ damage. The cumulative burden of SCD-related health effects can affect an individual's quality of life as well as their ability to participate in school and work. These factors impact how the Social Security Administration (SSA) determines whether applicants with SCD qualify for benefits.
The SSA tasked the National Academies with convening an expert committee to review the latest published scientific research and address best practices and patient experiences in the management and treatment of SCD. The resulting report, Sickle Cell Disease in Social Security Disability Evaluations, presents the committee's findings and conclusions including the importance of coordinated care and support for patients navigating the transition from pediatric to adult health care.
Contents
Front Matter
Summary
1 Introduction
2 Pain in Sickle Cell Disease
3 Pain Management in Sickle Cell Disease
4 Health Care Delivery in Sickle Cell Disease: Patient Choices, Care Settings, and Health Care Providers
5 Effects of Sickle Cell Disease on the Central Nervous System
6 Effects of Sickle Cell Disease on Body Systems Other Than the Central Nervous System
7 Cumulative Burden of Living with Sickle Cell Disease
8 Sickle Cell Disease and Disability Evaluations
9 Overarching Conclusions
Appendix A: Public Meeting Agendas
Appendix B: Draft Medical Report Forms for Children and Adults with Sickle Cell Disease
Appendix C: Biographical Sketches of Committee Members
