Table 2 Social outcome and patient satisfaction

a) Satisfaction with …

Mean score (SD)

Missing n (%)

>  7

n (%)

≤ 7 - ≥ 5

n (%)

<  5

n (%)

n

Components of care before transfer (TTP)

 Paediatric care in general

8.42 (1.68)

1 (1.2)

71 (83.5)

11 (12.9)

2 (2.4)

85

 Preparation for transfer

6.78 (3.02)

5 (5.9)

48 (56.5)

17 (20.0)

15 (17.6)

85

 TTP in general

7.90 (2.55)

4 (4.7)

62 (72.9)

10 (11.8)

9 (10.6)

85

 How alcohol, nicotine and drugs were addressed

6.29 (2.91)

1 (2.9)

13 (37.1)

12 (34.3)

9 (25.7)

35^a

 How sexuality, contraception and family planning were addressed

5.38 (2.85)

1 (2.9)

8 (22.8)

17 (48.6)

9 (25.7)

35^a

 How participants’ individual questions were addressed

9.03 (1.20)

0 (0.0)

30 (85.7)

5 (14.3)

0 (0.0)

35^a

 How participants were involved in decision-making

8.17 (1.89)

0 (0.0)

24 (68.6)

10 (28.6)

1 (2.8)

35^a

 Knowledge about one’s disease

8.51 (1.85)

0 (0.0)

27 (77.1)

6 (17.2)

2 (5.7)

35^a

 Knowledge about one’s therapy and possible side-effects

7.97 (2.07)

0 (0.0)

23 (65.7)

9 (25.7)

3 (8.6)

35^a

 One’s self-management skills

8.46 (2.12)

0 (0.0)

29 (82.9)

4 (11.4)

2 (5.7)

35^a

Components of care after transfer

 Adult care in general

7.65 (2.22)

0 (0.0)

44 (67.7)

13 (20.0)

8 (12.3)

65

 Waiting time for an appointment

7.58 (2.37)

0 (0.0)

43 (66.2)

12 (18.5)

10 (15.4)

65

 Waiting time at the appointment

7.11 (2.50)

0 (0.0)

41 (63.1)

13 (20.0)

11 (16.9)

65

 Interaction with doctors

7.45 (2.63)

0 (0.0)

41 (63.1)

12 (18.5)

12 (18.5)

65

 Prescription of further therapeutic options

7.75 (3.09)

6 (9.2)

43 (66.2)

8 (12.3)

8 (12.3)

65

b) Effect of …

Missing

n (%)

Negative

n (%)

No effect

n (%)

Positive

n (%)

n

the COVID-19 pandemic on the current life situation, n (%)

2 (2.4)

46 (54.0)

27 (31.8)

10 (11.8)

85

the disease on personal relationships, n (%)

3 (3.5)

22 (25.9)

54 (63.5)

6 (7.1)

85

c) Questions

Missing

n (%)

No

n (%)

Yes

n (%)

n

“Did your disease affect leisure activities at all?”

5 (5.9)

67 (78.8)

13 (15.3)

85

“Did you receive support in managing your condition from within your social environment?”

8 (9.4)

26 (30.6)

51 (60.0)

85

“Did you have enough time to ask all the questions that were important to you individually, during the first two visits in adult care?”

0 (0.0)

9 (13.8)

56 (86.2)

65

“Did you receive sufficient and intelligible answers?”

0 (0.0)

10 (15.4)

55 (84.6)

65

“Did you feel like you were taken seriously?”

0 (0.0)

10 (15.4)

55 (84.6)

65

“Were you involved adequately in decisions concerning your individual treatment?”

0 (0.0)

9 (13.8)

56 (86.2)

65