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Workshop on Adults With Sickle Cell Disease: Meeting Unmet Needs

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Consolidated List of Discussion Groups’ Recommendations for an Action Plan on Sickle Cell Disease in Adults

Please note: a Check indicates the Discussion Group's recommendation of this component. Absence of a check means that a Discussion Group did not mention the component; it does not mean that the Group disagrees with the recommended component.

Table 1: Recommendations for multidisciplinary, comprehensive health care model of clinical networks for adults: five components and their mention by Discussion Groups (Group)
Components of the comprehensive health care model of clinical networks     Health Care
Group		 Social & Econ.
Group		 Info & Educ.
Group		 Quality of Life Group Fill Gaps
Group
Pain management
Check
Check
Check
Check
Check
Day units
Check
Check
Check
Dissemination of best practices through technology, education, training
Check
Check
Check
Check
Psychological support/social work and related services
Check
Check
Check
Check
Need for establishing best practices in SC care for adults
Check
Check
Check
Check


Table 2: Recommendations for Quality of Life assessment and improvement: six components and their mention by Discussion Groups (Group)
Components of quality of life assessment and improvement Health Care
Group		 Social & Econ.
Group		 Info & Educ.
Group		 Quality of Life
Group		 Fill Gaps
Group
Need for development of SCD-specific QoL framework and measurements
Check
Check
Check
Check
Component of clinical trials and research, and patient management
Check
Check
Check
Check
Educational attainment, literacy including health literacy
Check
Check
Check
Check
Work role and economic independence
Check
Check
Check
Check
Family role, functioning and support
Check
Check
Check
Check
Mental health status and access to services
Check
Check
Check
Check
Check


Table 3: Recommendations for provider, patient, family and public health education and information dissemination: seven components and their mention by Discussion Groups (Group)
 Components of provider, patient, family and public health education and information dissemination   Health Care
Group		 Social & Econ.
Group		 Info & Educ.
Group		 Quality of Life
Group		 Fill Gaps
Group
Evaluation of existing materials and needs assessment to determine need for new materials
Check
Repository of materials for different audiences
Check
Media campaign and communication channels to reach audiences
Check
Check
Counter stigmatization, stereotypes
Check
Check
Check
Check
Check
Research to demonstrate effectiveness of educational interventions
Check
Check
Check
Check
Health care centers/networks and technology for disseminating information
Check
Check
Check
Check
Genetics education and counseling
Check
Check
Check


Table 4: Recommendations for additional data and data systems: two components and their mention by Discussion Groups (Group)
Components of additional data and data systems Health Care
Group		 Social & Econ.
Group		 Info & Educ.
Group		 Quality of Life
Group		 Fill Gaps
Group
Social epidemiology of SCD, health care access, utilization and practice patterns
Check
Check
Health objectives for adults with SCD: task force to specify objectives and data system to measure progress toward meeting objectives
Check




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