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Abstract Number: 2272

Assessment of Transition Readiness in Adolescents and Young Adults with Rheumatic and Other Chronic Health Conditions

Gabrielle Paul1, Stephanie LaCount2, Charles H. Spencer3, Gloria C. Higgins4, Karla Jones5, Brendan Boyle6, Manmohan K. Kamboj7, Christopher Smallwood8 and Stacy P. Ardoin9, 1College of Medicine, Ohio State University, Columbus, OH, 2Pediatrics, Ohio State University, Columbus, OH, 3Rheumatology, Nationwide Childrens Hospital, Columbus, OH, 4Pediatric Rheumatology Ohio State University, Nationwide Childrens Hosp, Columbus, OH, 5Pediatrics, Nationwide Children's Hospital, Ohio, OH, 6Gastroenterology, Nationwide Children's Hospital, Columbus, OH, 7Endocrinology, Nationwide Children's Hospital, Columbus, OH, 8Family Medicine, Ohio State Univeristy, Columbus, OH, 9Pediatric & Adult Rheumatology, Ohio State University College of Medicine, Columbus, OH

Meeting: 2014 ACR/ARHP Annual Meeting

Keywords: Practice, Transition and pediatric rheumatology

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Session Information

Session Title: Pediatric Rheumatology - Clinical and Therapeutic Aspects: Systemic Juvenile Idiopathic Arthritis, Spondyloarthropathy and Miscellaneous Pediatric Rheumatic Diseases

Session Type: Abstract Submissions (ACR)

 

Background/Purpose The transition from pediatric to adult care is a vulnerable period. The lack of objective measures of transition readiness is a barrier to improving care.  The Transition Readiness Assessment Questionnaire (TRAQ) is a disease-neutral, patient-reported tool with 33 questions across 2 domains (self-management and self-advocacy). Items are scored on a 1 to 5 ordinal scale representing stages of change model (precontemplation, contemplation, preparation, action and maintenance). The TRAQ has not previously been assessed in adolescents and children with rheumatic or gastroenterologic (GI) conditions. 

Methods 89 adolescents and young adults (16 – 25 years) with chronic rheumatic, endocrine or GI conditions at a single pediatric center were enrolled. Participants completed surveys including demographics, transition experience, TRAQ. Clinical information was obtained via chart review. Data were analyzed with descriptive statistics.  Mean TRAQ scores were compared across specialty and age groups using one way ANOVA.

Results The 89 participants were 65% female, 18.3 years, 72% Caucasian, 86% non-Hispanic and had rheumatic (54%), GI (21%) or endocrine (23%) conditions (Table 1). The 50 participants with rheumatic diseases had JIA/RA (25), SLE or MCTD (13), vasculitis (6), overlap or other disease (6). Only 40% of participants reported discussing with current provider seeing an adult subspecialty provider in the future.  Participants reported seeing subspecialist independently for part of visit never (31%), rarely (15%), sometimes (20%), often (24%) or always (8%). TRAQ self-management and advocacy scores did not differ significantly by specialty but the TRAQ self-advocacy score increased with age (Tables 2 and 3).

Conclusion: Despite guidelines that transition processes begin at age 14, fewer than half of these 16-25 year old respondents reported ever discussing future transition to adult providers and almost 1/3 had never seen provider independently for portion of clinic visit. Mean TRAQ scores for this group represented the preparation stage of change.  The TRAQ is a promising tool for measuring transition readiness and can be used clinically and to assess intervention efficacy. These results underscore the need for improved transition processes for adolescents and young adults with chronic disease.  

 

Table 1:  Transition Readiness Assessment:  Participant Characteristics

Age, mean ± SD years

18.2 ± 1.6

Sex, no. (%) female

58 (65)

Race, no. (%) white

72 (81)

Ethnicity, no. (%) Hispanic/Latino

3 (3)

Current education status

Currently in school, no. (%)

9th to 12th grade, no. (%)

College/Technical School, no. (%)

72 (82)

46 (52)

42 (47)

Highest Parental Education, no. (%)

   Some high school

   Graduated high school

   Some college/technical school

   Graduated college/technical school

   Graduate degree

   Unknown or not reported

3 (3)

20 (22)

27 (30)

28 (31)

9 (10)

2 (2)

Annual household income, no. (%)

  <$25,000

  $25,000 to 49,999

  $50,000 to 74,999

  $75,000 to 99,999

  $100,000 to 150,000

  >$150,000

  Not reported/unknown

11 (12)

16 (18)

13 (15)

6 (7)

8 (9)

7 (8)

28 (31)

Employment

 Not employed, no. (%)

 Part time, no. (%)

 Full time, no. (%)

47 (53)

36 (40)

6 (7)

Single, no. (%)

86 (97)

Insurance status

  Parental private insurance, no. (%)

  Personal private insurance, no. (%)

  Public insurance, no. (%)

  Other/unknown, no. (%)

58 (65)

0

28 (31)

3 (3)

Health condition, no. (%)

  Rheumatic

  Endocrine

  Gastroenterologic

49 (56)

20 (22)

19 (21)

Duration of disease, mean ± SD years

5.0 ± 4.1

Time seeing current provider, mean ± SD years

4.2 ± 3.3

Self-Management TRAQ Domain 1, mean ± SD

3.16 ± 1.70

Self-Advocacy TRAQ Domain 2, mean ± SD

3.79 ±1.55

Abbreviations:  GI = Gastroenterologic; TRAQ = Transition Readiness Assessment Questionnaire

 

Table 2:  Transition Readiness Assessment Questionnaire Scores by Specialty

 

Rheumatic

(n=50)

GI

(n=19)

Endocrinologic

(n=20)

F

P value

Self-Management

TRAQ Domain 1, mean ± SD

3.18 ± 1.70

3.14 ± 1.67

3.17 ± 1.72

0.09

0.91

Self-Advocacy

TRAQ Domain 2, mean ± SD

3.78 ± 1.56

3.97 ± 1.46

3.63 ± 1.61

1.32

0.27

Abbreviations:  GI = Gastroenterologic; TRAQ = Transition Readiness Assessment Questionnaire


 

Table 3:  Transition Readiness Assessment Questionnaire Scores By Age

 

16 to 18 years

(n=51)

19 to 20 years

(n= 28)

≥21 years

(n=8)

F

P value

Self-Management

TRAQ Domain 1, mean ± SD

3.01 ± 1.68

3.38 ± 1.71

3.38 ± 1.65

1.54

0.22

Self-Advocacy

TRAQ Domain 2, mean ± SD

3.65 ± 1.57

3.90 ± 1.52

4.3 ± 1.39

4.24

0.02

Abbreviations:  TRAQ = Transition Readiness Assessment Questionnaire

 



Disclosure:

G. Paul,
None;

S. LaCount,
None;

C. H. Spencer,
None;

G. C. Higgins,
None;

K. Jones,
None;

B. Boyle,
None;

M. K. Kamboj,
None;

C. Smallwood,
None;

S. P. Ardoin,
None.

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