Table 4.
Influential decision factors
| Not at all Important N (%) |
A little Important N (%) |
Somewhat Important N (%) |
Very Important N (%) |
Extremely Important N (%) |
Didn’t know about this N (%)a |
|
|---|---|---|---|---|---|---|
| Logistics | ||||||
| The results of medical tests, such as blood work or x-rays | 6 (3.0) | 5 (2.5) | 21 (10.5) | 65 (32.3) | 104 (51.7) | - |
| How long your child would be treated with biologics | 9 (4.6) | 9 (4.6) | 34 (17.2) | 64 (32.3) | 82 (41.4) | - |
| The ability to change your child’s treatment or try other treatments in the future | 11 (5.5) | 10 (5.0) | 49 (24.6) | 66 (33.2) | 63 (31.7) | - |
| The fact that biologics are only available as a shot or IV infusion | 34 (16.9) | 32 (15.9) | 50 (24.9) | 34 (16.9) | 51 (25.4) | - |
| The location, such as home or hospital, where your child could receive treatment with biologics | 23 (11.4) | 30 (14.9) | 47 (23.4) | 49 (24.4) | 52 (25.9) | - |
| Your child’s age | 21 (10.5) | 22 (11.0) | 35 (17.4) | 58 (28.9) | 65 (32.3) | - |
| The out-of-pocket cost of treatment | 39 (19.4) | 26 (12.9) | 48 (23.9) | 40 (19.9) | 48 (23.9) | - |
| Risks and benefits | ||||||
| Decreasing the symptoms your child was having at the time | 0 (0) | 0 (0) | 2 (1.0) | 34 (16.9) | 165 (82.1) | - |
| Side effects your child had experienced with other kinds of medicationsb | 16 (10.5) | 13 (8.6) | 23 (15.1) | 38 (25.0) | 62 (40.8) | - |
| The ways [arthritis/IBD] affects your child’s day to day life | 1 (0.5) | 1 (0.5) | 4 (2.0) | 55 (27.8) | 137 (69.2) | - |
| The ways [arthritis/IBD] treatment affects your child’s day to day life | 4 (2.0) | 11 (5.5) | 15 (7.5) | 60 (30.2) | 109 (54.8) | - |
| [Preventing joint damage/preventing surgery] from [arthritis/IBD] | 4 (2.0) | 1 (0.5) | 10 (5.0) | 36 (18.0) | 149 (74.5) | - |
| How quickly biologics would be expected to work | 5 (2.5) | 6 (3.0) | 28 (13.9) | 63 (31.3) | 99 (49.3) | - |
| The likelihood that treatment with biologics would work for your child | 1 (0.5) | 1 (0.5) | 3 (1.5) | 46 (22.9) | 150 (74.6) | - |
| The overall success rate of treatment with biologics | 1 (0.5) | 1 (0.5) | 7 (3.5) | 59 (29.4) | 133 (66.2) | - |
| Your child’s risk of cancer from uncontrolled IBDc | 2 (1.7) | 5 (4.4) | 6 (5.2) | 33 (28.7) | 69 (60.0) | - |
| Avoiding short-term side effects of biologics | 5 (2.5) | 14 (7.0) | 54 (27.1) | 56 (28.1) | 54 (27.1) | 16 (8.0) |
| Avoiding long-term side effects of biologics | 2 (1.0) | 5 (2.5) | 17 (8.5) | 48 (24.1) | 118 (59.3) | 9 (4.5) |
| The risk of tuberculosis (TB) associated with treatment | 6 (3.0) | 19 (9.5) | 34 (17.0) | 44 (22.0) | 78 (39.0) | 19 (9.5) |
| The effect of treatment on your child’s immune system | 1 (0.5) | 7 (3.5) | 16 (8.0) | 62 (31.0) | 113 (56.5) | 1 (0.5) |
| The possible risk of cancer associated with treatment | 0 (0) | 7 (3.5) | 15 (7.5) | 30 (15.0) | 136 (68.0) | 12 (6.0) |
| Avoiding unknown side effects | 5 (2.5) | 10 (5.1) | 43 (21.7) | 50 (25.3) | 90 (45.5) | - |
aIndicates this response was not an option
bMissing for 52 participants due to their child’s lack of experience with medication side effects
cQuestion only appeared on IBD version of the survey