How many patients do you transition per year? |
<10 patients |
34 (44.7) |
10–50 patients |
41 (54.0) |
>50 patients |
1 (1.3) |
|
Answers |
N (%) |
What do you consider the ideal age to start the transition process? |
<12 years |
1 (1.3) |
12–14 years |
8 (10.5) |
15–17 years |
46 (60.5) |
18–20 years |
21 (27.6) |
|
Answers |
N (%) |
What do you consider the ideal age to transfer patients? |
14 years |
4 (5.3%) |
15–17 years |
18 (23.7%) |
18 years |
33 (43.4%) |
19–20 years |
11 (14.5%) |
> 21 years |
10 (13.2%) |
|
Answers |
N (%) |
Age at which transfer actually happens? |
14 years |
2 (2.7) |
15–17 years |
11 (14.5) |
18 years |
26 (34.2) |
19–20 years |
23 (30.2) |
> 21 years |
14 (18.4) |
|
Answers |
N (%) |
Do you have a transition policy? |
There is not a formal transition program, but follows an informal protocol to transition patients. |
37 (48.7) |
There is not a transition program, but there is interest in implementing one. |
27 (35.5) |
There is a formal transition program, well-established and structured. |
10 (13.1) |
Transition program under development. |
10 (13.1) |
The transition has not been discussed. |
3 (4.0) |
There is no need for a transition program at this time. |
1 (1.3) |
|
Answers |
N (%) |
How do you prepare your patients for transition? |
Patient’s knowledge assessment about their own illness, current and past treatments. |
50 (65.8) |
Prior visit with an adult rheumatology from the center where the patient will be taken. |
48 (63.2) |
Discussion on education, vocation and finding a job. |
21 (27.6) |
Patients are assisted by social worker and/or psychologist. |
13 (17.1) |
Patient’s knowledge assessment about their health insurance. |
11 (14.5) |
|
Answers |
N (%) |
How do you facilitate the transition process? |
Provide a medical summary of the disease to the patient and/or the center where the patient will be followed. |
66 (86.8) |
Schedule the first visit for the patient in the center of adult rheumatology. |
30 (39.5) |
Provide copy of the patient’s records. |
20 (26.3) |
Development of an individual transition plan. |
9 (11.8) |
Provide a map with instructions of how to get to the center of adults where the patient will be followed. |
8 (10.5) |
Provide instruction on the health insurance. |
7 (9.2) |
Flyers/educational materials. |
6 (7.9) |
We do not provide any material. |
3 (3.9) |
Other practices. |
8 (10.5) |
|
Answers |
N (%) |
Do you use any tools for transition? |
No tools. |
63 (82.9) |
Checklist with objectives to be met by the time of transition. |
10 (13.2) |
Protocols that assess the patient’s readiness for transition. |
7 (9.2) |
|
Answers |
N (%) |
What influences the decision to transfer? |
Age of the patient. |
73 (96.1) |
Patient request for transition. |
28 (36.8) |
Transition patients in order to have place for new patients. |
23 (30.3) |
Patient’s family request for transition. |
22 (28.9) |
Patient’s disease activity. |
20 (26.3) |
Patient having children/starting a family. |
15 (19.7) |
Private health insurance status. |
8 (10.5) |
Distance between the patient’s residence and its rheumatology center. |
7 (9.2) |
Patient getting a job. |
5 (6.6) |
|
Answers |
N (%) |
Who makes the final decision when to transfer the patient? |
The doctor |
62 (81.6) |
The patient |
4 (5.3) |
The family of the patient |
1 (1.3) |
Others |
9 (11.8) |
|
Answers |
N (%) |
Where do you transfer your patients to? |
Adult rheumatology tertiary center linked to the same pediatric rheumatology center. |
57 (75.0) |
Secondary specialized medical center not linked to the original center |
16 (21,0) |
Private rheumatologist |
15 (19.7) |
Patient/family find themselves a specialist |
5 (6.6) |
Other |
12 (15.8) |
|
Answers |
N (%) |
How many times do you allow your patients to return to the pediatric rheumatology center after the transition? |
One return. |
47 (61.8) |
More than one return. |
9 (11.9) |
No returns. |
20 (26.3) |