SCD Psychosocial and Social Determinants of Health

Release Date:

February 6, 2023

Scope of Collection

Element Considered	Final Measures in Toolkit
Transition Readiness	Sickle Cell Disease Transition Readiness Assessment
	Sickle Cell Disease Transition Readiness Assessment (SI)
Response to Stress	Sickle Cell Disease Responses to Stress - Youth
	Sickle Cell Disease Responses to Stress - Parent Report
Self-Management	Sickle Cell Disease Self-Management - Adolescent Skills Checklist
	Sickle Cell Disease Self-Management - Caregiver Skills Checklist
Stigma	Sickle Cell Disease Health-Related Stigma - Child
	Sickle Cell Disease Health-Related External Stigma - Adolescent and Adult
	Sickle Cell Disease Health-Related Internal Stigma - Adolescent and Adult
Trust in Medical Care and Research	Trust in the Medical Professional - Adult
	Trust in Medical Researchers - 12-item
	Trust in Medical Researchers - 4-item
Grief	Inventory of Complicated Grief
	Reactions to Loss Scale
Resilience	Resilience
Spiritual Coping	Religious Behaviors and Congregational Support
Attitude Toward Illness	Attitude Toward Illness - Child (SI)
Self-Efficacy	General Self-Efficacy - Child (SI)
	General Self-Efficacy - Adolescent (SI)
	General Self-Efficacy - Child Parent Report (SI)
	General Self-Efficacy - Adult (SI)
Illness Identity	Illness Identity Questionnaire (SI)
Medication Adherence	Medication Adherence (SI)
Optimism	Optimism (SI)
Self-Perception	Self-Perception Profile - Child (SI)
	Self-Perception Profile - Adolescent (SI)
	Self-Perception Profile - Adult (SI)

Working Group Roster:

WG Members:

Lori Crosby, PsyD, Chair University of Cincinnati Cincinnati, OH	Steven Hardy, PhD Children's National Hospital Washington, DC
Staci D. Arnold, MD, MBA, MPH Emory University School of Medicine Atlanta, GA	Allison A. King, MD, MPH Washington University School of Medicine St. Louis, MO
Sherif Badawy, MD, MBA, MPH Anne and Robert H. Lurie Children's Hospital of Chicago Chicago, IL	Jerlym Porter, PhD, MPH St. Jude Children's Research Hospital Memphis, TN
Dominique Bulgin, PhD, RN University of Tennessee Knoxville, TN

Sickle Cell Disease Panel Liaison, WG Manager and WG Supervisor:

Marian Sullivan, MS, MPH, WG Supervisor RTI International Research Triangle Park, NC	Cataia Ives, MS, WG Manager RTI International Research Triangle Park, NC

Supplemental Information includes protocols that the Working Group or Expert Review Panel considered useful and highly relevant to the domain but do not meet the criteria for inclusion in the Toolkit.

• ASH SCD Transition Readiness

• Medication Adherence

• Illness Identity Questionnaire

• Self Perception Child

• Self Perception Adolescent

• Self Perception Adult

• CATIS

• Optimism

Additional Information:

There is no additional information for this collection.

Measure		Protocols	Domain/Collection
Prolonged Grief Disorder	Add to My Toolkit	Prolonged Grief Disorder	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
Reactions to Loss	Add to My Toolkit	Reactions to Loss	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
Religious Behaviors and Congregational Support	Add to My Toolkit	Religious Behaviors and Congregational Support	Social Determinants of Health: Individual Specialty Collection
Resilience	Add to My Toolkit	Resilience	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
Sickle Cell Disease Health-Related External Stigma	Add to My Toolkit	Sickle Cell Disease Health-Related External Stigma - Adolescent and Adult	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
Sickle Cell Disease Health-Related Internal Stigma	Add to My Toolkit	Sickle Cell Disease Health-Related Internal Stigma - Adolescent and Adult	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
Sickle Cell Disease Health-Related Stigma	Add to My Toolkit	Sickle Cell Disease Health-Related Stigma - Child	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
Sickle Cell Disease Responses to Stress	Add to My Toolkit	Sickle Cell Disease Responses to Stress - Parent Report	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
	Add to My Toolkit	Sickle Cell Disease Responses to Stress - Youth	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
Sickle Cell Disease Self-Management Skills Checklist	Add to My Toolkit	Sickle Cell Disease Self-Management - Adolescent Skills Checklist	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
	Add to My Toolkit	Sickle Cell Disease Self-Management - Caregiver Skills Checklist	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
Sickle Cell Disease Transition Readiness	Add to My Toolkit	Sickle Cell Disease Transition Readiness Assessment	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
Trust in Medical Care and Research	Add to My Toolkit	Trust in Medical Researchers - 12-Item	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
	Add to My Toolkit	Trust in Medical Researchers - 4-Item	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection
Trust in Medical Care	Add to My Toolkit	Trust in the Medical Professional - Adult	SCD Research Working Group 5: Psychosocial and Social Determinants of Health Specialty Collection