There were 175 participants, 93 in group A (YAs attending the Diabetes and Cystic Fibrosis clinics) and 82 in group B (YAs attending the Gastroenterology, Rheumatology and Hemoglobinopathy clinics). There was no difference between the two groups in their age at study participation (p=0.068) (Table 1).
Table 1
Young Adult study population
Group (n)
|
Age (years) at time of study participation
(Mean (SD))
|
Clinic specialty
|
Number
(% of study population)
|
A (93)
|
18.5 (2.0)
|
Diabetes
|
55 (31.4)
|
Cystic Fibrosis
|
38 (21.7)
|
B (82)
|
20.4 (2.1)
|
Gastroenterology
|
50 (28.6)
|
Rheumatology
|
20 (11.4)
|
Hemoglobinopathy
|
12 (6.9)
|
Group A (n=93) included young adult patients attending clinics with a structured transition program (Diabetes and Cystic Fibrosis). Group B (n=82) included young adult patients attending clinics without a formal transition program (Gastroenterology, Rheumatology, Hemoglobinopathy). There was no statistical difference in the ages of the the two different groups at the time of study participation (p=0.068).
The majority of YAs were referred to TOH from hospital-based specialty pediatric care at CHEO: 64 (84.2%) of group A and 78 (85.7%) of group B (p = 0.813). The remaining YAs had received community-based pediatric care. All of the study participants completed the first survey, 163 (93.1%) completed the second survey and 148 (84.6%) completed the third survey.
There was no difference between the groups in how YAs ranked the importance of managing their own health (median scores were 10 (IQR 8-10) and 9 (IQR 7-10) respectively for group A and B (p=0.27); Figure 1a) or in how confident they felt about their ability to manage their own health (median scores were 8 (IQR 7-9) and 8 (IQR 6-9) respectively for group A and B (p=0.198; Figure 1b).
Table 2 reports the results of the “Self-Care Assessment for Young Adults” survey. There were significant differences between the responses of the two groups in both the “My Health” and “Using Health Care” questions. More of the YAs in group A than in in group B clinics reported having knowledge about their medical needs before transitioning to TOH (47.8% vs 23.5%; p<0.0001) and less of them reported still needing to learn fundamentals of their medical needs including what to do in case of a medical emergency (1.1% vs 15.8%; p=0.0005) (Table 2). A higher proportion of YAs attending clinics in group A compared to group B reported that before transitioning to the adult hospital, they had acquired practical skills necessary for independent use of the healthcare system. At the time of completing the survey, significantly fewer patients in group A reported still needing to learn these skills (Table 2). In both groups, although more evident in group B, results demonstrate the need for further education in the adult hospital setting regarding the importance of knowing where to get medical attention out-of-hours, how to get referrals to other providers, how to complete medical forms and the importance of preparing questions in advance of clinic visits.
Table 2
Self-Care Skill Assessment for Young Adults
|
Number of responders who answered the question
|
% of responders reporting
“Yes I did know this before transition”
|
% of responders reporting
“Yes I now know”
|
% of responders reporting
“I need to learn”
|
P value
|
Grp A – structured transition program (n=93)
Grp B – no formal transition program (n=82)
|
A
|
B
|
A
|
B
|
A
|
B
|
A
|
B
|
|
(a) Health knowledge
|
|
|
|
|
|
|
|
|
|
I know my medical needs
|
92
|
81
|
47.8
|
23.5
|
51.1
|
61.7
|
1.1
|
14.8
|
<0.0001
|
I can explain my medical needs to others
|
93
|
81
|
52.7
|
25.9
|
47.3
|
65.4
|
0.0
|
8.6
|
<0.0001
|
I know my symptoms including ones that I quickly need to see a doctor for
|
93
|
82
|
48.4
|
24.4
|
49.5
|
62.2
|
2.1
|
13.4
|
0.0004
|
I know what to do in case I have a medical emergency
|
93
|
82
|
47.3
|
30.5
|
51.6
|
53.7
|
1.1
|
15.8
|
0.0005
|
I know my medicines, what they are for, and when I need to take them
|
93
|
82
|
48.4
|
30.5
|
49.5
|
67.1
|
2.1
|
2.4
|
0.0357
|
I know my allergies to medicines and the medicines I should not take
|
93
|
81
|
43.0
|
30.9
|
49.5
|
56.8
|
7.5
|
12.3
|
0.2041
|
b) Using Health Care
|
|
|
|
|
|
|
|
|
|
I make my own doctor’s appointments
|
93
|
82
|
31.2
|
17.1
|
57.0
|
56.1
|
11.8
|
26.8
|
0.0127
|
I know where my pharmacy is and how to refill my medications
|
93
|
81
|
43.0
|
22.2
|
52.7
|
67.9
|
4.3
|
9.9
|
0.0098
|
I carry important medical information with me every day (i.e. insurance card, allergies, medications, emergency contact)
|
92
|
80
|
34.8
|
16.2
|
50.0
|
57.5
|
15.2
|
26.2
|
0.0134
|
I have a way to get to my doctor’s office
|
93
|
82
|
38.7
|
24.4
|
60.2
|
67.1
|
1.1
|
8.5
|
0.014
|
Before a visit, I think about questions to ask
|
92
|
82
|
33.7
|
19.5
|
45.6
|
53.7
|
20.6
|
26.8
|
0.1057
|
I know I need to show up 15 minutes before the visit to check in
|
92
|
82
|
38.0
|
24.4
|
56.5
|
64.6
|
5.4
|
11.0
|
0.0961
|
I know where to go to get medical care when the doctor’s office is closed
|
93
|
81
|
34.4
|
18.5
|
48.4
|
56.8
|
17.2
|
24.7
|
0.0549
|
I have a file at home for my medical information
|
91
|
80
|
27.5
|
20.0
|
37.4
|
47.5
|
35.2
|
32.5
|
0.3465
|
I know how to fill out medical forms
|
93
|
82
|
32.3
|
21.9
|
50.5
|
57.3
|
17.2
|
20.7
|
0.3091
|
I know how to get referrals to other providers
|
93
|
81
|
23.7
|
14.8
|
35.5
|
39.5
|
40.9
|
45.7
|
0.3409
|
I know where to get blood work or x-rays done if my doctor orders them
|
93
|
82
|
35.5
|
21.9
|
51.6
|
65.8
|
12.9
|
12.2
|
0.1181
|
Group A (n=93) included young adult patients attending clinics with a structured transition program (Diabetes and Cystic Fibrosis). Group B (n=82) included young adult patients attending clinics without a formal transition program (Gastroenterology, Rheumatology, Hemoglobinopathy). |
Table 3 reports the results of the feedback survey of the YAs experience with their previous healthcare team in the pediatric setting. The only question where the responses from YAs in group A and group B were statistically different (p=0.0008) was “Did your previous healthcare team actively work with you to gain skills to manage your own health and health care?” (Table 3b) with more of those YAs attending group B clinics reporting “a little” or “not at all” compared to YAs attending group A clinics (16.2% vs 3.3%; p=0.0008).
Table 3
Patient experience with previous healthcare team in pediatric hospital setting
(a)
|
Number of responders who answered the question
|
% of responders reporting
“Always”
|
% of responders reporting
“Usually”
|
% of responders reporting
“Sometimes”
|
% of responders reporting
“Never”
|
P value
|
Grp A – structured transition program (n=93)
Grp B – no formal transition program (n=82)
|
A
|
B
|
A
|
B
|
A
|
B
|
A
|
B
|
A
|
B
|
|
How often did your previous HCT explain things in a way that was easy to understand?
|
92
|
80
|
68.5
|
58.7
|
29.3
|
33.7
|
2.2
|
6.2
|
0.0
|
1.2
|
0.2739
|
How often did your previous HCT listen carefully to you?
|
92
|
80
|
69.6
|
73.7
|
26.1
|
18.7
|
4.3
|
6.2
|
0.0
|
1.2
|
0.4540
|
How often did you schedule your own appointments with your previous health care provider?
|
89
|
79
|
7.9
|
13.9
|
18.0
|
8.9
|
37.1
|
27.8
|
37.1
|
49.4
|
0.0882
|
(b)
|
Number of responders who answered the question
|
% of responders reporting
“A lot”
|
% of responders reporting
“Some”
|
% of responders reporting
“A little”
|
% of responders reporting
“Not at all”
|
P value
|
Grp A – structured transition program (n=93)
Grp B – no formal transition program (n=82)
|
A
|
B
|
A
|
B
|
A
|
B
|
A
|
B
|
A
|
B
|
|
Did your previous HCT actively work with you to gain skills to manage your own health and health care?
|
92
|
80
|
78.3
|
51.2
|
18.5
|
32.5
|
2.2
|
10.0
|
1.1
|
6.2
|
0.0008
|
Did your previous HCT actively work with you to think about and plan for the future?
|
92
|
79
|
43.5
|
31.6
|
33.7
|
34.2
|
16.3
|
20.2
|
6.5
|
13.9
|
0.2331
|
Did your previous HCT respect your customs or beliefs?
|
90
|
78
|
90.0
|
78.2
|
8.9
|
15.4
|
1.1
|
3.8
|
0.0
|
2.6
|
0.1104
|
(c)
|
Number of responders who answered the question
|
% of responders reporting
“Yes”
|
% of responders reporting
“No”
|
P value
|
Grp A – structured transition program (n=93)
Grp B – no formal transition program (n=82)
|
A
|
B
|
A
|
B
|
A
|
B
|
|
Did your previous HCT discuss with you or have an office policy that informed you at what age you may need to change to a new provider who treats mostly adults?
|
92
|
78
|
92.4
|
85.9
|
7.6
|
14.1
|
0.1703
|
Did you talk with your previous HCT without your parent or guardian in the room?
|
90
|
79
|
75.6
|
72.1
|
24.4
|
27.8
|
0.6149
|
Did your previous HCT explain legal changes in privacy, decision-making, and consent that take place at age 18?
|
92
|
77
|
70.6
|
57.1
|
29.3
|
42.9
|
0.0676
|
Did your previous HCT actively work with you to create a written plan to meet your health goals and needs?
|
91
|
79
|
63.7
|
55.7
|
36.3
|
44.3
|
0.2859
|
Did your previous HCT create and share with you your medical summary?
|
91
|
78
|
78.0
|
70.5
|
22.0
|
29.5
|
0.2639
|
Does your previous HCT have information about community resources?
|
91
|
79
|
78.9
|
65.8
|
21.1
|
34.2
|
0.0569
|
Did your previous HCT assist you in identifying a new adult provider to transfer to?
|
91
|
76
|
88.9
|
82.9
|
11.1
|
17.1
|
0.2654
|
Group A (n=93) included young adult patients attending clinics with a structured transition program (Diabetes and Cystic Fibrosis). Group B (n=82) included young adult patients attending clinics without a formal transition program (Gastroenterology, Rheumatology, Hemoglobinopathy). |
Table 4 reports the results of the feedback survey of the YAs experience with their new adult healthcare provider in TOH. Answers were statistically significantly different between responders in group A compared to group B in 6 of the 7 questions. Compared to YAs attending group B clinics, a higher proportion of responders attending group A clinics reported that their new adult healthcare provider addressed issues specific to HCT including their concerns, health goals and needs as well as providing written information about their care plan, services and additional resources.
Table 4
Patient experience with new health care provider in adult hospital setting
|
Number of responders who answered the question
|
% of responders reporting
“Yes”
|
% of responders reporting
“No”
|
P value
|
Grp A – structured transition program (n=93)
Grp B – no formal transition program (n=82)
|
A
|
B
|
A
|
B
|
A
|
B
|
|
Does your adult HCT explain things in a way that is easy to understand?
|
85
|
70
|
96.5
|
90
|
3.5
|
10
|
0.1867
|
Does your adult HCT listen carefully to you?
|
83
|
68
|
92.8
|
89.7
|
7.2
|
10.3
|
0.5041
|
Did your adult HCT address any of your concerns about transferring to a new practice/provider?
|
82
|
65
|
71.9
|
53.8
|
28.0
|
46.1
|
0.0232
|
Did your adult HCT provide written or online information about their hours and services?
|
84
|
67
|
79.8
|
58.2
|
20.24
|
41.8
|
0.004
|
Did your adult HCT discuss with you or have an office policy that explained their approach to accepting and partnering with young adult patients?
|
83
|
66
|
73.5
|
47.0
|
26.5
|
53.0
|
0.0009
|
Does your adult HCT actively work with you to create a written plan of care to meet your health goals and needs?
|
84
|
65
|
72.6
|
44.6
|
27.4
|
55.4
|
0.0005
|
Does your adult HCT update and share a current medical summary and emergency plan with you?
|
83
|
65
|
79.5
|
63.1
|
20.5
|
36.9
|
0.0266
|
Does your adult HCT have information about community resources?
|
81
|
60
|
83.9
|
63.3
|
16.0
|
36.7
|
0.0051
|
Did your adult HCT explain the legal changes in privacy, decision-making, and consent that take place at age 18?
|
85
|
66
|
67.1
|
53.0
|
32.9
|
47.0
|
0.0797
|
Group A (n=93) included young adult patients attending clinics with a structured transition program (Diabetes and Cystic Fibrosis). Group B (n=82) included young adult patients attending clinics without a formal transition program (Gastroenterology, Rheumatology, Hemoglobinopathy). |