Table 3.
Study characteristics by domain assessed.
| Study Characteristic | All (n=407) |
Overall Health (n=161) |
Social (n=223) |
Cognitive (n=183) |
Emotional (n=111) |
Physical (n=102) |
HRQL (n=73) |
Family (n=74) |
|---|---|---|---|---|---|---|---|---|
| Unique instruments | 366 | 39 | 49 | 115 | 78 | 77 | 22 | 87 |
| Studies reporting > 1 instrument/domain, n (%) | 200 (49) | 19 (12) | 70 (31) | 99 (54) | 58 (52) | 44 (43) | 13 (18) | 39 (53) |
| Article to instrument ratioa | 1.11 | 4.13 | 4.55 | 1.59 | 1.42 | 1.32 | 3.32 | 0.85 |
| Source of datab, n (%) | ||||||||
| Parent/Guardian | 220 (54) | 70 (43) | 134 (60) | 64 (35) | 89 (80) | 32 (31) | 59 (81) | 70 (95) |
| Patient | 218 (54) | 54 (34) | 95 (43) | 121 (66) | 42 (38) | 70 (69) | 38 (52) | 8 (11) |
| Medical Record | 46 (11) | 25 (16) | 15 (7) | 12 (7) | 1 (0.9) | 10 (10) | 2 (3) | 0 (0) |
| Sibling | 2 (0.5) | 0 (0) | 1 (0.5) | 1 (0.6) | 1 (0.9) | 0 (0) | 0 (0) | 2 (3) |
| Other | 21 (5) | 1 (0.6) | 7 (3) | 5 (3) | 10 (9) | 3 (3) | 0 (0) | 3 (4) |
| Not reported | 97 (24) | 54 (34) | 51 (23) | 44 (24) | 8 (7) | 18 (18) | 6 (8) | 0 (0) |
| Method of assessment, n (%) | ||||||||
| In-person | 200 (49) | 47 (29) | 104 (47) | 116 (63) | 62 (56) | 60 (59) | 26 (36) | 36 (49) |
| Phone | 89 (22) | 43 (27) | 57 (26) | 28 (15) | 19 (17) | 15 (15) | 21 (29) | 13 (18) |
| Standard Mail | 65 (16) | 12 (7) | 35 (16) | 6 (3) | 38 (34) | 2 (2) | 23 (32) | 28 (38) |
| Chart Review | 55 (14) | 29 (18) | 17 (8) | 17 (9) | 2 (2) | 18 (18) | 1 (1) | 2 (3) |
| Email/web | 8 (2) | 2 (1) | 6 (3) | 0 (0) | 3 (3) | 0 (0) | 4 (5) | 3 (4) |
| Other | 22 (5) | 9 (6) | 8 (4) | 5 (3) | 3 (3) | 5 (5) | 0 (0) | 2 (3) |
| Not Specified | 110 (27) | 52 (32) | 56 (25) | 48 (26) | 25 (23) | 23 (23) | 15 (21) | 11 (15) |
| Studies using > 1 method of assessment, n (%) | 68 (17) | 25 (16) | 37 (17) | 18 (10) | 23 (21) | 14 (14) | 12 (16) | 15 (20) |
| Frequency instruments collected using > 1 method, n (%) | 124/1206 (10) | 27/182 (15) | 48/323 (15) | 23/466 (5) | 34/216 (16) | 18/187 (10) | 14/90 (16) | 34/159 (21) |
| Baseline data collected, n (%) | 45 (11) | 13 (8) | 18 (8) | 21 (11) | 8 (7) | 7 (7) | 8 (11) | 4 (5) |
a
Article to instrument ratio: the quotient number of articles to the number of unique instruments. A higher ratio indicates greater consolidation around a core set of instruments.
b
Some manuscripts described more than one data source. The manuscripts in the family domain with the patient as the source of data used instruments that collected data from both the patient and the family member pertaining to both the patient and the family member. HRQL: health-related quality of life; IQR: interquartile range.