Table 1. PROs recommendations in CureSCi... | American Society of Hematology

Table 1.

PROs recommendations in CureSCi CDEs (version 1.0)

Subdomain	Population	Measure	Classification
Pain intensity	Adults and children ≥8 years old	NRS	Core
Pain intensity	Adults and children ≥8 years old	VAS	Supplemental
Pain impact/interference	Adults, SCD-specific	ASCQ-Me Pain Impact	Core
	Children 5-18 years, SCD-specific	PedsQL Pain Impact SCD module	Core
	Children/adults, not SCD-specific	PROMIS Pain Interference^a,b	Core
Pain: mixed	Children 5-18 years, SCD-specific	PedsQL Pain and Hurt, SCD modules	Core
Painful crises	Adults, SCD-specific	ASCQ-Me Pain Episodes	Core
Emotional impact of SCD	Adults, SCD-specific	ASCQ-Me Emotional Impact	Supplemental, highly recommended
	Children, SCD-specific	PedsQL, SCD Module Emotions	Supplemental, highly recommended
	Children, SCD-specific	PedsQL, SCD Module Worrying	Supplemental
Negative affect: mixed	Children, not SCD-specific	PROMIS Physical Stress Experience¹	Supplemental, highly recommended
Low mood	Children/adults, not SCD-specific	PROMIS Emotional Distress: Depression^1,2	Supplemental, highly recommended
Anxiety	Children/adults, not SCD-specific	PROMIS Emotional Distress: Anxiety^1,2	Supplemental, highly recommended
Fatigue	Children/adults, not SCD-specific	Pediatric/Adult PROMIS Fatigue^1,2	Core
Fatigue	Children, SCD-specific	PedsQL Multidimensional Fatigue Scale	Core
Sleep disturbance	Children/adults, not SCD-specific	PROMIS Sleep Disturbance^1,2	Supplemental, highly recommended
	Adults, SCD-specific	ASCQ-Me Sleep Impact	Supplemental, highly recommended
	Adults, not SCD-specific	Pittsburgh Sleep Quality Index	Supplemental
	Adults, not SCD-specific	Epworth Sleepiness Scale	Supplemental
	Children, not SCD-specific	Epworth Sleepiness Scale (CHAD)	Supplemental
General function	Adults, not SCD-specific	Canadian Occupational Performance	Supplemental
Social function	Adults, SCD-specific	ASCQ-Me Social Functioning Impact	Supplemental
Physical function	Adults, SCD-specific	ASCQ-Me Stiffness Impact	Supplemental, highly recommended
	Adults, not SCD-specific	PROMIS - Physical Function (PF) 12a²	Supplemental
	Children, not SCD-specific	Pediatric PROMIS - PF Mobility¹	Supplemental
	Children, not SCD-specific	Pediatric PROMIS - PF Upper Extremity¹	Supplemental
Global health/QOL	Adults, not SCD-specific	PROMIS 10 Global Health²	Core
Global health/QOL	Children, not SCD-specific	PROMIS 7 + 2 Global Health^*	Core
Global cognition	Children, 0-3.5 years old	Bayley-III	Supplemental
	Children, 2.5-7 years old	WPPSI-IV (4th edition)	Supplemental
	Children, 6-16 years old	WISC-V (5th edition)	Supplemental
	Adults	Wechsler Adult Intelligence Scale	Supplemental
	Children and adults^†	NIH Toolbox	Supplemental, highly recommended
Executive functioning	Children 3-7, 8-11, and ≥12 years	Flanker Inhibitory Control/Attention (NT)	Supplemental, highly recommended
	Children 3-7, 8-11, and ≥12 years	Dimensional Change Card Sort Test (NT)	Supplemental, highly recommended
	Children ≥9 years old	Trail Making Test, parts A and B	Supplemental
	Children and adults, 8-89 years	Delis-Kaplan Executive Function System	Supplemental
	Children and adults, 7-89 years	Wisconsin Card Sort Test	Supplemental
Processing speed	Children ≥7 years old	Pattern Comparison Processing Speed Test	Supplemental, highly recommended
Processing speed	Adults	Processing Speed Index	Supplemental
Working memory	Children ≥7 years old	List Sorting Working Memory Test (NT)	Supplemental, highly recommended

Subdomain	Population	Measure	Classification
Pain intensity	Adults and children ≥8 years old	NRS	Core
Pain intensity	Adults and children ≥8 years old	VAS	Supplemental
Pain impact/interference	Adults, SCD-specific	ASCQ-Me Pain Impact	Core
	Children 5-18 years, SCD-specific	PedsQL Pain Impact SCD module	Core
	Children/adults, not SCD-specific	PROMIS Pain Interference^a,b	Core
Pain: mixed	Children 5-18 years, SCD-specific	PedsQL Pain and Hurt, SCD modules	Core
Painful crises	Adults, SCD-specific	ASCQ-Me Pain Episodes	Core
Emotional impact of SCD	Adults, SCD-specific	ASCQ-Me Emotional Impact	Supplemental, highly recommended
	Children, SCD-specific	PedsQL, SCD Module Emotions	Supplemental, highly recommended
	Children, SCD-specific	PedsQL, SCD Module Worrying	Supplemental
Negative affect: mixed	Children, not SCD-specific	PROMIS Physical Stress Experience¹	Supplemental, highly recommended
Low mood	Children/adults, not SCD-specific	PROMIS Emotional Distress: Depression^1,2	Supplemental, highly recommended
Anxiety	Children/adults, not SCD-specific	PROMIS Emotional Distress: Anxiety^1,2	Supplemental, highly recommended
Fatigue	Children/adults, not SCD-specific	Pediatric/Adult PROMIS Fatigue^1,2	Core
Fatigue	Children, SCD-specific	PedsQL Multidimensional Fatigue Scale	Core
Sleep disturbance	Children/adults, not SCD-specific	PROMIS Sleep Disturbance^1,2	Supplemental, highly recommended
	Adults, SCD-specific	ASCQ-Me Sleep Impact	Supplemental, highly recommended
	Adults, not SCD-specific	Pittsburgh Sleep Quality Index	Supplemental
	Adults, not SCD-specific	Epworth Sleepiness Scale	Supplemental
	Children, not SCD-specific	Epworth Sleepiness Scale (CHAD)	Supplemental
General function	Adults, not SCD-specific	Canadian Occupational Performance	Supplemental
Social function	Adults, SCD-specific	ASCQ-Me Social Functioning Impact	Supplemental
Physical function	Adults, SCD-specific	ASCQ-Me Stiffness Impact	Supplemental, highly recommended
	Adults, not SCD-specific	PROMIS - Physical Function (PF) 12a²	Supplemental
	Children, not SCD-specific	Pediatric PROMIS - PF Mobility¹	Supplemental
	Children, not SCD-specific	Pediatric PROMIS - PF Upper Extremity¹	Supplemental
Global health/QOL	Adults, not SCD-specific	PROMIS 10 Global Health²	Core
Global health/QOL	Children, not SCD-specific	PROMIS 7 + 2 Global Health^*	Core
Global cognition	Children, 0-3.5 years old	Bayley-III	Supplemental
	Children, 2.5-7 years old	WPPSI-IV (4th edition)	Supplemental
	Children, 6-16 years old	WISC-V (5th edition)	Supplemental
	Adults	Wechsler Adult Intelligence Scale	Supplemental
	Children and adults^†	NIH Toolbox	Supplemental, highly recommended
Executive functioning	Children 3-7, 8-11, and ≥12 years	Flanker Inhibitory Control/Attention (NT)	Supplemental, highly recommended
	Children 3-7, 8-11, and ≥12 years	Dimensional Change Card Sort Test (NT)	Supplemental, highly recommended
	Children ≥9 years old	Trail Making Test, parts A and B	Supplemental
	Children and adults, 8-89 years	Delis-Kaplan Executive Function System	Supplemental
	Children and adults, 7-89 years	Wisconsin Card Sort Test	Supplemental
Processing speed	Children ≥7 years old	Pattern Comparison Processing Speed Test	Supplemental, highly recommended
Processing speed	Adults	Processing Speed Index	Supplemental
Working memory	Children ≥7 years old	List Sorting Working Memory Test (NT)	Supplemental, highly recommended

Pediatric PROMIS measures are available for children self-report ≥8 years old and proxy report.

^†

Adult PROMIS measures are available.

ASCQ-Me, Adult Sickle Cell Quality of Life Measurement Information System; CHAD, children and adolescents; NRS, Numeric Rating Scale; NT, NIH Toolbox; PROMIS, Patient-Reported Outcomes Measurement Information System; VAS, Visual Analog Scale; WISC, Wechsler Intelligence Scale for Children; WPPSI-IV, Wechsler Preschool and Primary Scale of Intelligence.

Publicly available at https://curesickle.org/sites/scdc/files/Doc/SC/Patient_Reported_Outcomes_Recommendations_Summary.pdf.

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