Table 1.

Measures selected for the sickle cell disease functional assessment

Domains	Measures in each domain	Description
Functional Status	OARS Activities of Daily Living and Instrumental Activities of Daily Living	Measures the extent to which one is able to function independently. Scores range 0–28 with higher scores indicating more independence. (14 items)
	Physical Functioning Subscale of the SF-36	Component of the 36-Item Short Form Health Survey (SF-36). Measures extent to which health currently limits daily activities. Scores range 0–100, with higher scores indicating better physical functioning. (10 items)
	Karnofsky performance status—self and physician*	Global measure of physical ability. Scores 0–100 with higher scores indicating better performance (2 items). Score ≥ 80 indicates good performance status.
	Number of falls in last 6 months	Self-reported number of falls in the last 6 months. ≥ 1 fall indicates increased risk of subsequent falls. (1 item)
	Usual Gait Speed*	Comfortable walking pace on a 3-m (10 ft) course with an acceleration zone and deceleration zone. The fastest speed of 2 trials is used for the analysis. Scores compared to normative values based on age and gender.
	Timed Up and Go*	The time it takes to rise from a standard height chair (46cm), walk a distance of 10 ft (3 m), turn, walk back to the chair, and sit down again. Shortest time of 2 trials is used for the analysis. TUG assesses balance. TUG > 10 s is associated with fractures in older adults and > 12 s indicates increased risk of falls.
	Dual-Task Performance*	Assesses the effects of simultaneously performing a cognitive and motor task: usual walking speed for 1 minute and a verbal fluency task using letters F, A, and S. Each task is performed once individually, then simultaneously twice using a different letter on each attempt. Scores are used to calculate whether cognitive-motor interference is present.
	Six-Minute Walk Test*	Distance walked in 6 minutes. 2-min and 6-min walking distances are recorded and heart rate recovery at 1 and 2 minutes. Scores compared to normative values based on age and gender.
	Seated Grip Strength*	Grip strength measured in triplicate alternating both hands using Jamar Technologies Hydraulic Hand Dynamometer while the participant remains seated in a standard height chair (46 cm). Scores compared to normative values based on age and gender.
	30-second Chair Stand*	Number of times one can rise to a standing position and sit back down in 30 seconds. Scores compared to normative values based on age and gender.
Comorbid Medical Conditions	OARS Physical Health questionnaire	Patient-reported comorbidity checklist and the degree to which the condition interferes with their daily activities. (27 items)
Psychological State	Mental Health Inventory-18 (MHI-18)	Includes anxiety, depression, behavioral control, and positive affect subscales. Total and subscale scores range 0–100, with higher scores indicating better mental health. (18 items)
Social Support/Social Activities	MOS Social Support Survey	Perceived availability of social support. Total score is on a 0–100 scale with lower scores indicating less support. (19 items)
	Social Functioning Subscale of the SF-36	Measures amount of time physical health or emotional health interfered with social activities over the last 4 weeks. Subscale scores range from 0-100 with higher scores indicating better social functioning. (1 item)
	MOS Social Activity Limitations Measure	Measures change in social activities and limitations in social activities compared to peers over the last 6 months. Mean of 2 items transformed to scores range 0–100 with higher scores indicating less limitations. (2 items)
Nutritional Status	Body Mass Index	Calculated by measuring height and weight. A low BMI for older adults is < 22 kg/m2 and obesity is ≥ 30 kg/m2. (1 item)
	Unintentional Weight Loss	Unintentional weight loss in the last 6 months. Unintentional weight loss > 5% in 6–12 months is associated with increased mortality. (1 item)
Cognition	Blessed Orientation-Memory-Concentration Test*	Measures temporal orientation, short-term memory, and concentration. Weighted score ranges 0-28 with higher scores indicating more impairment. A score > 9 is concerning for cognitive impairment. (6 items)
	Montreal Cognitive Assessment*	Measures visuospatial skills, executive functions, memory, attention, calculation, concentration, language, abstraction, and orientation. On a scale of 0-30 with a score < 26 indicating cognitive impairment. (16 items)
Medications	Comprehensive list of medications	Participant recorded medication list. Polypharmacy is defined as ≥ 5 prescribed medications.

OARS Older Americans Resources and Services, MOS medical outcome study, SF-36 36-item Short Form, TUG timed up and go, BMI body mass index

*Indicates performance-based measures that must be administered by personnel