Table 3.
Item number | Mean score [SD] expert panel [n = 64] | % with a score 1.2 or 3b | Mean score [SD] patient panel [n = 61] | % with a score 1.2 or 3b | Corrected p-value | |
---|---|---|---|---|---|---|
1. | Attends first adult GE appointment as planned at moment of transfer | 7.92 [1.4] | 1.6 | 6.98 [2.0] | 4.9 | 0.036* |
2. | Attends first adult GE appointment within the first 3–6 months after transfer | 7.12 [2.0] | 7.8 | 6.62 [2.1] | 11.5 | 1.000 |
3. | Attends all adult GE appointments in the 1st year following transfer | 6.76 [1.9] | 6.3 | 7.23 [2.1] | 6.6 | 0.649 |
4. | Adherence to medication | 7.48 [1.8] | 3.1 | 8.08 [1.6] | 3.3 | 0.09 |
5. | Timely refilling own prescriptions | 7.02 [1.5] | 1.6 | 7.82 [1.7] | 3.3 | 0.002* |
6. | Refilling prescription on their own [not parents] | 6.91 [1.6] | 4.7 | 7.33 [2.0] | 6.6 | 0.390 |
7. | Ability to recall dose/frequency medications | 7.56 [1.5] | 3.1 | 7.92 [1.5] | 1.6 | 0.480 |
8. | Independent attendance at outpatient clinic [without parents] | 5.94 [2.2] | 17.2 | 5.20 [2.8] | 32.8 | 1.000 |
9. | Contact IBD service independently | 7.81 [1.1] | 0 | 7.77 [1.6] | 1.6 | 1.000 |
10. | Shows ability to make decisions regarding IBD | 7.59 [1.2] | 1.6 | 8.16 [1.3] | 0 | 0.055 |
11. | Independent communication with treating physician/nurse | 7.79 [1.2] | 0 | 8.39 [0.8] | 0 | 0.036* |
12. | [Health-related] Quality of life 1 year after transfer | 7.11 [1.5] | 1.6 | 7.39 [1.9] | 6.6 | 1.000 |
13. | Necessity of surgery in 1st year after transfer | 5.56 [2.4] | 23.4 | 2.66 [2.1] | 72.1 | < 0.0001* |
14. | Number of hospitalizations in 1st year after transfer | 6.36 [2.3] | 12.5 | 3.08 [2.3] | 62.3 | < 0.0001* |
15. | Having a social network/relationships | 6.39 [1.9] | 10.9 | 6.46 [2.8] | 19.7 | 1.000 |
16. | Number of Emergency Room visits in 1st year after transfer | 6.59 [2.2] | 10.9 | 3.05 [2.5] | 65.6 | < 0.0001* |
17. | Patient satisfied about transition process | 7.89 [1.5] | 1.6 | 7.56 [1.9] | 6.6 | 1.000 |
18. | Parents satisfied about transition process | 6.92 [1.8] | 6.3 | 7.28 [1.9] | 6.6 | 1.000 |
19. | Necessity of steroids in 1st year after transfer | 6.02 [2.5] | 18.8 | 2.64 [2.1] | 68.9 | < 0.0001* |
20. | Number of flares in 1st year after transfer | 6.43 [2.3] | 14.1 | 3.15 [2.4] | 63.9 | < 0.0001* |
21. | Number of emergency examinations in 1st year after transfer | 6.36 [2.1] | 10.9 | 3.21 [2.2] | 59.0 | < 0.0001* |
22. | Completion of formal education | 6.17 [2.2] | 14.1 | 6.70 [2.9] | 19.7 | 0.238 |
23. | Participation in sports/hobbies | 5.97 [2.0] | 14.1 | 5.90 [2.8] | 23.0 | 1.000 |
24. | Growth outcomes achieved | 6.16 [2.6] | 18.8 | 5.41 [2.8] | 27.9 | 1.000 |
25. | Stable weight in the 1st year after transfer | 6.06 [1.9] | 9.4 | 5.72 [2.5] | 23.0 | 1.000 |
26. | Missed school/work days in 1st year after transfer | 6.67 [1.8] | 6.3 | 4.10 [2.7] | 47.5 | < 0.0001* |
Abbreviation: GE: gastroenterology.
aParticipants rated each item from 1 to 9.
bNo disagreement was found (30% of ratings in lower third [rating 1–3] and 30% in upper third [7–9]).
Bold represents a mean score of 7–9 without disagreement, which reflect ‘important outcomes’. *Corrected p-value using Holms correction for multiple testing <0.05 .