Table 4 Influential decision factors
From: Parents’ information needs and influential factors when making decisions about TNF-α inhibitors
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) | - |