Table 4.
“Bad” QOL rankings.
| “Bad” QOL disabilities | Families, n = 901 | Physicians, n = 112 | p* | ||
|---|---|---|---|---|---|
| Overall ranking | No. who selected n (%) |
Overall ranking | No. who selected n (%) |
||
| Need for a ventilator | 1 | 576 (63.9) | 5 | 44 (39.3) | <0.001 |
| Unable to get out of bed/sit up | 2 | 513 (56.9) | 1 | 79 (70.5) | 0.008 |
| Need for a tracheostomy or g-tube | 3 | 316 (35.1) | 11/12 | 12 (10.7) | <0.001 |
| Nonverbal | 4 | 235 (26.1) | 2 | 74 (66.1) | <0.001 |
| Incontinence | 5 | 232 (25.7) | 6 | 39 (34.8) | 0.047 |
| Inability to obtain a formal education/intellectual disability | 6 | 223 (24.8) | 4 | 54 (48.2) | <0.001 |
| Inability to interact with others in a formal or informal social setting | 7 | 197 (21.8) | 3 | 56 (50.0) | <0.001 |
| Absent or handicapped limbs(s) | 8 | 194 (21.5) | 7/8 | 34 (30.4) | 0.040 |
| Need for frequent hospital stays | 9 | 177 (19.6) | 9/10 | 15 (13.4) | |
| Need for organ or bone marrow transplant | 10 | 113 (12.5) | 9/10 | 15 (13.4) | |
| Able to sit but unable to stand or walk | 11 | 95 (10.54) | 11/12 | 12 (10.7) | |
| Blindness | 12 | 83 (9.2) | 7/8 | 34 (30.4) | <0.001 |
| Mental health problems | 13 | 81 (9.0) | 14 | 10 (9.0) | |
| Need for one or more future surgeries | 14/15 | 65 (7.2) | 16/17 | 2 (1.8) | |
| Physically looking different than others | 14/15 | 65 (7.2) | 15 | 6 (5.4) | |
| Deafness | 16 | 46 (5.1) | 13 | 11 (9.8) | 0.044 |
| Need for orthopedic support to walk | 17 | 18 (2.0) | 16/17 | 2 (1.8) | |
| Learning disorder diagnosis | 18 | 12 (1.3) | 18/19/20 | 0 (0.0) | |
| Hearing impairment, not deafness | 19 | 10 (1.1) | 18/19/20 | 0 (0.0) | |
| Need for glasses or contacts | 20 | 2 (0.2) | 18/19/20 | 0 (0.0) | |
*Unlisted p values were not statistically significant.