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. 2019 Feb 14;13(9):1163–1172. doi: 10.1093/ecco-jcc/jjz044

Table 3.

Mean importance ratingsa of all 26 items from stage 2

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 .