From: The Sickle Cell Disease Functional Assessment (SCD-FA) tool: a feasibility pilot study
Demographics | Younger (n = 20) | Older (n = 20) | All (n = 40) |
---|---|---|---|
Mean age in years (range) | 30 (20–47) | 57 (50–71) | 44 (20–71) |
Female, % (n) | 45 (9) | 50 (10) | 48 (19) |
Income ≤ $50,000, % (n) | 45 (9) | 50 (10) | 48 (19) |
Employment status, % (n) | |||
 Working | 45 (9) | 50 (10) | 48 19) |
 Unemployed | 15 (3) | 5 (1) | 10 (4) |
 Disabled | 20 (4) | 30 (6) | 25 (10) |
 Retired | 0 (0) | 10 (2) | 5 (2) |
 Student | 20 (4) | 0 (0) | 10 (4) |
 Other | 0 (0) | 5 (1) | 3 (1) |
Education level, % (n) | |||
 High school graduate or less | 20 (4) | 20 (4) | 20 (8) |
 Some college/associates/technical school | 40 (8) | 35 (7) | 38 (15) |
 Bachelor’s degree | 25 (5) | 25 (5) | 25 (10) |
 Advanced degree | 15 (3) | 20 (4) | 18 (7) |
Lives alone, % (n) | 25 (5) | 20 (4) | 23 (9) |
Disease characteristics | |||
SCD genotype, % (n) | |||
 Hb SS | 60 (12) | 55 (11) | 58 (23) |
 Hb Sβ0 | 5 (1) | 0 (0) | 3 (1) |
 Hb Sβ+ | 15 (3) | 10 (2) | 13 (5) |
 Hb SC | 20 (4) | 35 (7) | 28 (11) |
Hemoglobin (g/dL) mean ± SD, (Range) | 9.8 ± 1.9 (6.6–13.9) | 8.9 ± 2.4 (5.6–13.5) | 9.3 ± 2.2 (5.6–13.9) |
Strokes, % (n) | 10 (2) | 15 (3) | 13 (5) |
Sickle cell retinopathy, % (n) | 25 (5) | 55 (11) | 40 (16) |
History of acute chest syndrome/pneumonia, % (n) | 85 (17) | 65 (13) | 75 (30) |
Pulmonary hypertension, % (n) | 0 (0) | 25 (5) | 13 (5) |
Spleen removed, % (n) | 35 (7) | 25 (5) | 30 (12) |
Chronic kidney disease, % (n) | 10 (2) | 45 (9) | 28 (11) |
Cholecystectomy, % (n) | 45 (9) | 70 (14) | 58 (23) |
Iron overload, % (n) | 25 (5) | 20 (4) | 23 (9) |
Avascular necrosis of any joint, % (n) | 40 (8) | 80 (16) | 60 (24) |
Joint Surgery, % (n) | 30 (6) | 30 (6) | 30 (12) |
Leg ulcers, % (n) | 5 (1) | 15 (3) | 10 (4) |
Hypertension, % (n) | 0 (0) | 35 (7) | 18 (7) |
Diabetes, % (n) | 0 (0) | 5 (1) | 3 (1) |
Hearing (fair or poor), % (n) | 0 (0) | 25 (5) | 13 (5) |
Healthcare Utilization | |||
Hospitalized for pain in last year, % (n) | 60 (12) | 45 (9) | 53 (21) |
Visited the ED in the last year, % (n) | 70 (14) | 65 (13) | 68 (27) |
Visited Sickle Cell Day Hospital in last year, % (n) | 35 (7) | 47 (9) | 41 (16) |
≥ 4 hospitalizations in the last year, % (n) | 0 (0) | 10 (2) | 5 (2) |
*Severe pain crisis at home without hospitalization in last 6 months, % (n) | 70 (14) | 75 (15) | 73 (29) |
Sickle cell disease medications and therapies | |||
Hydroxyurea use, % (n) | 65 (13) | 55 (11) | 60 (24) |
Chronic transfusion therapy, % (n) | 20 (4) | 15 (3) | 18 (7) |
Iron Chelation Therapy, % (n) | 25 (5) | 15 (3) | 20 (8) |
Long-acting opiates, % (n) | 20 (4) | 35 (7) | 28 (11) |
Short-acting opiates, % (n) | 75 (15) | 85 (17) | 80 (32) |