National Academies Press: OpenBook

Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action (2020)

Chapter: Appendix B: Literature Search Terms and Strategy

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Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×

Appendix B

Literature Search Terms and Strategy

Search No. Search Terms
Sickle Cell Disease OR Sickle Cell Trait.mp [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, unique identifier]
AND
Introduction # found: 9,588
1 *Legislation OR Law
2 *Epidemiology
3 *Prevalence
4 *Incidence
5 *Health Outcomes OR Outcome Measures
6 *Risk Factors
7 *Complications (stroke, ACS, pain crises, kidney and heart issues, etc.)
8 *Thalassemia
9 *Heredity
10 *Anemia
11 *Hemoglobinopathy
12 *Gene
13 *Pain Crisis/Vaso-Occlusive Crises
14 *Hemoglobin S

continued

Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×
Search No. Search Terms
15 *Homozygosity
16 *Red Blood Cells
17 Morbidity
18 Mortality
19 Pathophysiology
20 Global Burden
Structural Determinants # found: 1,373
21 *Economic Burden OR Unmet Need OR Burden of Health OR Burden of Illness
22 *Health Disparities
23 *Cost
24 *Cost of Care
25 *Financial Impact OR Economic Hardship OR Poverty
26 *Life Course OR Life Course Perspective OR
Life course
27 *Education
28 *Employment
29 Bias (search before 1990)
30 Health Literacy
31 Stigma (search before 1990)
32 Discrimination (search before 1990)
33 Racism (search before 1990)
Screening Surveillance # found: 1,405
34 *Federal Programs OR State Programs OR Local Programs
35 *Surveillance
36 *Registries
37 *Screening OR Prevention
38 *Screening (newborn, etc.)
39 *Limitations
40 *Bioethics
41 *Ethics
42 *Medical Ethics
43 *Genetic Counseling
44 *Reproductive Counseling
Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×
Search No. Search Terms
Health Care Organization and Delivery # found: 2,428
45 *Healthcare Barriers
46 *Access to Care
47 *Care Delivery
48 **Insurance
49 **Medicaid
50 **Medicare
51 **Commercial insurance
52 **Commercial Payers
53 **Payers
54 **Payment policy
55 *Disease Management
56 *Care Management
57 *Pain Management
58 *Psychosocial Effects
59 Geographical Barriers
60 Emergency Care OR Emergency Department
61 Mental Health
62 Behavioral Health
63 Cognitive Deficit OR Cognitive Impairment
64 Transcranial Doppler
65 Federally Qualified Healthcare Centers
Quality of Care # found: 715
66 *“Best Practices for Care”
67 *Pediatric Care
68 *Adult Care
69 *Quality of Life
70 **Patient-centered
71 **Clinical guidelines
72 **Primary care providers
73 **Clinical guidelines
74 *Patient Engagement OR Family Engagement

continued

Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×
Search No. Search Terms
Workforce Issues # found: 1,091
75 *Workforce Development OR Workforce Needs
76 *Community Health Workers
77 *Employment
78 **Advanced practice nurse
79 **Advanced practiced provider
80 **Nursing OR Nurses OR Nurse Practitioners
81 **Family physicians
82 Hospitalists
83 Benign Hematology
84 Training (Medical students OR Residents)
Internal Medicine
Social Workers
Psychologists
Advocacy and Community Engagement # found: 569
85 *Patient Advocacy
86 *Community Engagement
87 *Funding
88 *Research
89 *Patient Education OR Family Education
90 *Social Support
91 Policy
Current and Innovative Therapeutic Approaches and the Search for a Cure # found: 5,611
92 *Treatment
93 *Non-pharmacological Therapies
94 *Skill-based Therapies
95 *Educational OR Psychological Therapies
96 *Gene editing OR Gene Replacement
97 *Stem Cell Therapy OR Hematopoietic Stem Cells
98 *Hydroxyurea
99 *Endari/L-glutamine
100 *Epigenetics
101 Clinical Trials
Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×
Search No. Search Terms
NASEM/IOM Studies # found: 6
102 NIH COPD Action Plan
103 NASEM: Rare Diseases and Orphan Products: Accelerating Research and Development Report
104 NASEM: Communities in Action: Pathways to Health Equity Report
105 NASEM: Epilepsy Across the Spectrum: Promoting Health and Understanding Report
106 NASEM: A National Strategy for the Elimination of Hepatitis B and C: Phase Two Report
107 NASEM: Unequal Treatment Report
Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×

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Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×
Page 427
Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×
Page 428
Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×
Page 429
Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×
Page 430
Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×
Page 431
Suggested Citation:"Appendix B: Literature Search Terms and Strategy." National Academies of Sciences, Engineering, and Medicine. 2020. Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. Washington, DC: The National Academies Press. doi: 10.17226/25632.
×
Page 432
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Sickle cell disease (SCD) is a genetic condition that affects approximately 100,000 people in the United States and millions more globally. Individuals with SCD endure the psychological and physiological toll of repetitive pain as well as side effects from the pain treatments they undergo. Some adults with SCD report reluctance to use health care services, unless as a last resort, due to the racism and discrimination they face in the health care system. Additionally, many aspects of SCD are inadequately studied, understood, and addressed.

Addressing Sickle Cell Disease examines the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT). This report explores the current guidelines and best practices for the care of patients with SCD and recommends priorities for programs, policies, and research. It also discusses limitations and opportunities for developing national SCD patient registries and surveillance systems, barriers in the healthcare sector associated with SCD and SCT, and the role of patient advocacy and community engagement groups.

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