TABLE 2.
CSI and PROMIS‐SF Fatigue, Sleep Disturbance, and Social Roles and Activities in caregivers of patients with short‐bowel syndrome and intestinal failure: Overall scores and stratified by weekly volume of parenteral support
| Instrument | Overall (N = 121) | <9 L/week (n = 39) | 9–<18 L/week (n = 47) | ≥18 L/week (n = 35) | ||||
|---|---|---|---|---|---|---|---|---|
| Mean (SD) | Median (IQR) | Mean (SD) | Median (IQR) | Mean (SD) | Median (IQR) | Mean (SD) | Median (IQR) | |
| CSI a | 4.01 (3.39) | 4.00 (2.00–7.00) | 3.36 (3.05) | 3.00 (2.00–5.00) | 4.30 (3.59) | 5.00 (2.00–7.00) | 4.34 (3.49) | 5.00 (1.00–7.00) |
| PROMIS‐SF Fatigue 4a b | 10.07 (3.99) | 9.00 (7.00–12.00) | 9.44 (3.55) | 9.00 (7.00–11.00) | 11.28 (4.07) | 11.00 (8.00–15.00) | 9.14 (4.04) | 8.00 (7.00–12.00) |
| PROMIS‐SF Sleep Disturbance 4a b | 13.40 (1.83) | 14.00 (12.00–15.00) | 13.77 (1.88) | 14.00 (12.00–15.00) | 13.34 (1.97) | 13.00 (12.00–15.00) | 13.09 (1.54) | 13.00 (12.00–14.00) |
| PROMIS‐SF Social Roles and Activities 4a b | 14.24 (3.70) | 14.00 (12.00–16.00) | 14.03 (4.06) | 14.00 (12.00–16.00) | 13.83 (3.28) | 13.00 (12.00–16.00) | 15.03 (3.81) | 16.00 (12.00–18.00) |
Abbreviations: CSI, Caregiver Strain Index; IQR, interquartile range; PROMIS‐SF, Patient‐Reported Outcomes Measurement Information System–Short Form; SD, standard deviation.
a
Range of scores possible for the 18‐item CSI instrument is −5 to 13.
b
Range of scores possible for the PROMIS‐SF Fatigue 4a, Sleep Disturbance 4a, and Social Roles and Activities 4a is 4 (minimum interference) to 20 points (maximum interference).