A Clinical Tool to Measure the Components of Health-Care Transition from Pediatric Care to Adult Care: The UNC TR_xANSITION Scale

Figures & data

Table 1.  Development of the UNC TR_xANSITION Scale across the three versions.

	Version 1	Version 2	Version 3
No. of questions	37	47	33
Formal input from	Patients	Patients	Patients
	Adolescent specialist	Adolescent specialist	Adolescent specialist
	Pediatric specialists/subspecialists	Pediatric specialists/subspecialists	Pediatric specialists/subspecialists
	Med/peds specialist	Med/peds specialist	Med/peds specialist
	Nurse practitioners	Nurse practitioners	Nurse practitioners
	Specialty nurses	Specialty nurses	Specialty nurses
	Psychologist	Psychologist	Internal medicine specialists and subspecialists
	Recreation therapist	Internal medicine specialists and subspecialists	Psychologist
	Social worker
		Transition coordinator	Transition coordinator
	Nutritionist
	Transition coordinator
	Internal medicine specialists and subspecialists
	Medical anthropologist
	Epidemiologists
	Health behavior specialist
Data collected through	Focus groups, semi-structured interviews	Focus groups and focused interviews	Focused interviews, 35 digitally recorded
Adolescent and young adults’ diagnoses	IBD = 21CKD/HTN = 61Renal transplant = 10	IBD = 27CKD/HTN = 9	IBD = 46CKD/HTN = 51Renal transplant = 11
			SLE = 1
			SCD = 13
			Diabetes mellitus = 6
Domain changes	A = Allergy	A = Allergy was changed to A = Adherence	A = Adherence retained

Note: IBD, inflammatory bowel disease; CKD/HTN, chronic kidney disease/hypertension; SLE, systemic lupus erythematosus; SCD, sickle cell disease.

Table 2.  Participant characteristics across the three versions of the UNC TR_xANSITION scale.

	Version 1	Version 2	Version 3
Number of participants (n)	92	36	128
Mean age (SD)	17.5 (1.5)	16.8 (2.1)	16.5 (1.9)
Age range in years	14.4–19.4	13.7–21.4	12.5–20.7
Mean age at diagnosis (SD)	11.9 (2.6)	12.3 (3.6)	9.5 (5.3)
Females (%)	11 (52)	21 (58)	65 (51)
Race: n (%)
Blacks	4 (19)	11 (31)	56 (44)
White	17 (81)	22 (61)	62 (48)
Hispanics	0 (0)	3 (8)	6 (5)
Other race	0 (0)	0 (0)	4 (3)
Adherence: n (%)^a
Adherent	19 (90)	32 (89)	105 (82)
Nonadherent	2 (10)	4 (11)	23 (18)
Insurance status: n (%)^a
Self-pay	1 (5)	0 (0)	5 (4)
Medicare/Medicaid	6 (29)	11 (31)	59 (46)
Private	14 (66)	25 (69)	65 (51)

Note: ^aDefined by medical record review.

Table 3.  Raw score means and standard deviations for version 3 of the UNC TR_xANSITION scale.

	Younger (ages 12–15) (N = 50)		Older (ages 16–20) (N = 78)		Total sample (N = 128)
Subscale	Mean	SD	Mean	SD	Mean	SD
Type of illness (T)	0.70	0.29	0.78	0.29	0.75	0.29
Medications (Rx)	0.80	0.19	0.82	0.21	0.81	0.20
Adherence (A)	0.83	0.20	0.83	0.22	0.83	0.21
Nutrition (N)	0.74	0.30	0.84	0.23	0.80	0.26
Self-management (S)	0.26	0.16	0.37	0.23	0.33	0.21
Informed-reproduction (I)	0.26	0.30	0.41	0.28	0.35	0.30
Trade/school issues (T)	0.46	0.16	0.55	0.26	0.52	0.23
Insurance issues (I)	0.37	0.25	0.59	0.32	0.50	0.32
Ongoing support (O)	0.82	0.35	0.92	0.22	0.88	0.28
New health providers (N)	0.40	0.30	0.50	0.32	0.46	0.32
Total score	5.61	1.26	6.58	1.41	6.22	1.41

Table 4.  Correlations between items, subscales, and total scores for the UNC TR_xANSITION scale.

Subscale	Individual question	Correlation of each subscale with total score (r)	Correlation of individual question with subscale (r)	Correlation of individual question with total score (r)
T (Type of illness)	T1	0.74	0.64	0.45
	T2		0.74	0.62
	T3		0.78	0.52
Rx (Medications)	R1	0.61	0.70	0.41
	R2		0.69	0.32
	R3		0.73	0.46
	R4		0.74	0.52
A (Adherence)	A1	0.49	0.82	0.38
	A2		0.85	0.46
	A3		0.44	0.16
N (Nutrition)	N1	0.52	0.60	0.28
	N2		0.74	0.38
	N3		0.70	0.37
S (Self-management)	S1	0.64	0.64	0.43
	S2		0.71	0.52
	S3		0.68	0.50
	S4		0.63	0.37
	S5		0.42	0.25
	S6		0.61	0.32
	S7		0.44	0.23
I (Informed-reproduction)	I1	0.53	0.65	0.31
	I2		0.50	0.38
	I3		0.48	0.18
	I4		0.75	0.42
T (Trade/school issues)	T1	0.62	0.42	0.42
	T2		0.54	0.18
I (Insurance issues)	I1	0.70	0.69	0.49
	I2		0.74	0.52
	I3		0.73	0.52
	I4		0.71	0.47
O (Ongoing support)	01	0.34	–	0.34
N (New health providers)	N1	0.57	0.81	0.49
	N2		0.79	0.42

Table

Type of chronic health condition			Correct	Nonspecific	Does not know
1	What is the name of your health condition?		1.0	0.5	0.0
2	What physical symptoms do you experience because you have [name of health condition]?		1.0	0.5	0.0
3	How might [name of health condition] affect your health in the future?		1.0	0.5	0.0
	Sum the scores for this section	Subtotal T	_____ out of 3
	Divide the subtotal by the number of applicable questions	Proportion T

Table

Rx: Medications			Can name all	Can name some	Cannot name any
4	What are the names of the medicines, vitamins, and/or supplements your doctor has asked you to take for your health condition?		1.0	0.5	0.0
	[If possible, write meds in advance and circle them as the patient names them]
	_______________ _______________ _______________ ______________
	_______________ _______________ _______________ ______________
	_______________ _______________ _______________ ______________
5	When are you supposed to take [name each medication, vitamin, and supplement patient should be taking]?		1.0	0.5	0.0
6	What is the purpose of [name each medication, vitamin, and supplement patient should be taking]?		1.0	0.5	0.0
7	What could happen if you do not take [name each medication, vitamin, and supplement patient should be taking] like your doctor has asked you to?		1.0	0.5	0.0
Sum the scores for this section                 Subtotal Rx					_____ out of 4
Divide the subtotal by the number of applicable questions     Proportion Rx

Table

Adherence			Yes	Sometimes	No
8	In a typical week, do you usually miss a full day of medicine, either because you forgot to take it or did no’t want to take it?		0.0	0.5	1.0
9	Do you usually have trouble remembering to take your medicines every day?		0.0	0.5	1.0
10	Do you usually come to your doctor appointments when they are scheduled?		1.0	0.5	0.0
	Sum the scores for this section	Subtotal A	_____ out of 3
	Divide the subtotal by the number of applicable questions	Proportion A

Table

Nutrition		Knows definitely	Has an idea	Does not know
11 When choosing foods and drinks, do you read the nutrition labels on them to find out if they are healthy choices for you?		1.0	0.5	0.0
12 Are you supposed to follow any special diet because you have [name of health condition]?		1.0	0.5	0.0
13 [if the patient is on a special diet] What are examples of the foods and/or drinks that you should have more or less of?		1.0	0.5	0.0	N/A
Sum the scores for this section	Subtotal N			_____ out of (2 or 3)
Divide the subtotal by the number of applicable questions	Proportion N

Table

Self-management skills			Yes	Sometimes	No
14	Do you usually remember to take your medicines on your own?		1.0	0.5	0.0
15	Does someone usually have to remind you to take your medicines?		0.0	0.5	1.0
16	Do you usually call in your prescription refills yourself?		1.0	0.5	0.0
17	Do you usually pick up refills from the pharmacy yourself?		1.0	0.5	0.0
18	Do you yourself usually call or email your doctor when you have a question or need to speak with him/her?		1.0	0.5	0.0
19	Do you usually make your own doctor appointments?		1.0	0.5	0.0
20	[if the patient has medical procedures to perform] Do you usually perform your medical procedures yourself (catheterization, insulin shots, etc.?)		1.0	0.5	0.0	N/A
Sum the scores for this section		Subtotal S		____ out of (6 or 7)
Divide the subtotal by the number of applicable questions		Proportion S

Table

Issues of reproduction			Knows definitely	Has an idea	Does not know
21	Would your health condition likely affect your ability to		1.0	0.5	0.0
	[if female] become pregnant?[if male] get someone pregnant?
22	[Females only] What are the risks you might face if/when you become pregnant because you have [name of health condition]?		1.0	0.5	0.0
23	[Females only] Do you take any medicines that would be harmful to an unborn baby if you became pregnant?		1.0	0.5	0.0	N/A
24	Can you tell me ways sexually active people help protect themselves from unwanted pregnancy or STDs?		1.0	0.5	0.0
Sum the scores for this section		Subtotal I
		Male			_____ out of 2
		Female			_____ out of 4
Divide the subtotal by the number of applicable questions		Proportion I

Table

Trade/School			Knows definitely	Has an idea	Does not know
25	What are your future plans in regards to school and/or a job?		1.0	0.5	0.0
26	How will your current health insurance status change when you turn 18 and/or are no longer a full-time student?		1.0	0.5	0.0
Sum the scores for this section		Subtotal T	_____ out of 2
Divide the subtotal by the number of applicable questions		Proportion T

Table

Insurance			Knows definitely	Has an idea	Does not know
27	What is health insurance and why is it important to have?		1.0	0.5	0.0
28	What is the name of your current health insurance provider?		1.0	0.5	0.0
29	[If he/she is currently insured] At what age will your current health insurance coverage end?		1.0	0.5	0.0	N/A
30	How can you get health insurance coverage for yourself when you are an adult?		1.0	0.5	0.0
	Sum the scores for this section	Subtotal I	_____ out of (3 or 4)
	Divide the subtotal by the number of applicable questions	Proportion I

Table

Ongoing support			Self	Parents/friends	Does not know
31	When you are an adult, who will manage your health condition, for example, help you remember to take your medicines, call in prescription refills, pick up meds from pharmacy, and make doctor appointments?		1.0	0.5	0.0
	Sum the scores for this section	Subtotal O	_____ out of 1

Table

New health-care providers			Knows definitely	Has an idea	Does not know
32	When it is time for you to switch to an adult doctor, how will you find one?		1.0	0.5	0.0
33	In order to get your medical records transferred to another doctor, what is required to make this happen?		1.0	0.5	0.0
Sum the scores for this section		Subtotal N	_____ out of 2
Divide the subtotal by the number of applicable questions		Proportion N

Table

Raw total score	Sum all section subtotals here (max 33)
T.Rx.A.N.S.I.T.I.O.N score™	Sum all section proportions, or divide the raw total score by the total number of eligible questions (max 10)