Background: Despite the importance of transitional urology for adolescents with complex urologic conditions, specialized transitional urology clinics (TUC) are not readily available throughout the United States. In a 2015 AUA study, 80% of pediatric urologists recommended that patients with complex urologic surgical reconstruction be followed by urologists with specific transitional urology training. However, a 2018 survey of members of the Society of Pediatric Urology found only 32% had a formal TUC in their practice. While there are some studies addressing factors that influence higher Transition Readiness Assessment Questionnaire (TRAQ) scores in complex urologic patients, there is a paucity of data evaluating how TRAQ scores change over time within a TUC. The objective of this study was to assess the efficacy of our TUC in improving TRAQ scores over time.
Methods: A retrospective review was completed of all patients evaluated in our TUC from 1/2016 to 6/2023. At each visit, patients who are cognitively able completed the TRAQ, a validated 29 item questionnaire assessing a patient’s ability to manage their own health care. Questions are rated on a Likert scale of 1 to 5 with 1 = “No, I do not know how” and 5 = “Yes, I always do this when I need to”. The TRAQ is reviewed with the patient and their family and suggestions are made for areas to work on before the next visit. The mean overall score and individual question scores of the first and most recent TRAQ were compared with t-tests.
Results: From 2/2017 to 2/2024, 85 patients completed a TRAQ, 57 of which completed more than one TRAQ over multiple visits. The mean length of time from a patient’s first to last TUC visit was 551 days. Mean total TRAQ scores significantly increased from the first and most recent TUC visits (98.5 vs 110.4 p<0.001), Table 1. Nearly all individual questions had an improvement in TRAQ score from first to most recent visit. Three individual questions had statistically significant improvement over visits: arranging payments for medications (question 3, p=0.047), reordering medications (question 5, p=0.023), and keeping a calendar of medical appointments (question 18, p=0.043). Only one question had a decrease in score over time, though not statistically significant, and addressed receiving financial help with school or work (question 25). Patients had an average of an 11.7-point increase from their first to last TRAQ score.
Conclusion: TUC patients showed significant improvement in TRAQ scores over time, which demonstrates increased confidence and capability in independently managing their complex urologic conditions. Assessing score changes in individual TRAQ questions can be used to tailor patient education at each visit. Our data suggests that a dedicated TUC is a vital component to optimizing these patients’ care. We propose that institutions should develop a TUC to help their pediatric patients with chronic urological conditions transition to adult urology and feel empowered to manage their healthcare.
| Table 1. Comparison of first and last TRAQ Scores | |||
| Question on TRAQ | First TRAQ Score(N=57) | Last TRAQ Score (N=57) | p-value |
| Managing Medications | |||
| 1.Did you fill a prescription if you needed to? | 3.5, 4 (1.4) | 4.1, 5 (1.3) | 0.080 |
| 2.Do you know the side effects or bad reactions of each medication, and what to do if you are having a bad reaction? | 3.5, 4 (1.4) | 4.2, 5 (1.1) | 0.061 |
| 3.Do you pay or arrange payments for your medications? | 2.0, 1 (1.3) | 2.7,3 (1.7) | 0.047 |
| 4.Do you take medications correctly and on your own? | 4.4, 5 (1.1) | 4.4, 5 (1.2) | 0.608 |
| 5.Do you reorder medications before they run out? | 3.4, 4 (1.4) | 4.3, 5 (1.2) | 0.023 |
| 6.Do you use and take care of medical equipment and supplies? | 4.1, 5 (1.3) | 4.5, 5 (1.0) | 0.239 |
| 7.Do you call the suppliers when there is a problem with the equipment? | 3.1, 3 (1.6) | 3.6, 4 (1.6) | 0.364 |
| 8.Do you order medical equipment before they run out? | 3.0, 3 (1.6) | 3.8, 5 (1.4) | 0.064 |
| 9.Do you arrange payment for the medical equipment and supplies? | 2.0, 1 (1.2) | 2.4, 1 (1.6) | 0.573 |
| Appointment Keeping | |||
| 10.Do you call the doctor’s office to make an appointment? | 3.5, 3 (1.3) | 4.3, 5 (0.94) | 0.079 |
| 11.Do you follow up on any referrals for tests or check-ups or labs? | 3.6, 3 (1.3) | 4.1, 5 (1.2) | 0.391 |
| 12.Do you arrange for your ride to medical appointments? | 3.3, 3.5 (1.7) | 3.6, 5 (1.8) | 0.653 |
| 13.Do you call the doctor about unusual changes in your health? | 3.3, 3 (1.5) | 3.9, 5 (1.4) | 0.257 |
| 14.Do you apply for insurance if you lose your current coverage? | 2.2, 2 (1.4) | 2.6, 2.5 (1.6) | 0.327 |
| 15.Do you know what your health insurance covers? | 3.2, 3 (1.3) | 3.6, 4 (1.2) | 0.579 |
| 16.Do you manage your money & budget household expenses? | 3.3, 3 (1.5) | 3.9, 4 (1.3) | 0.427 |
| 17.Do you fill out the medical history form, including a list of your allergies? | 3.7, 4 (1.3) | 4.1, 5 (1.2) | 0.215 |
| 18.Do you keep a calendar or list of medical and other appointments? | 3.6, 4 (1.4) | 4.3, 5 (1.0) | 0.043 |
| Talking with Providers | |||
| 19.Do you tell the doctor or nurse what you are feeling? | 4.7, 5 (0.9) | 4.7, 5 (0.61) | 0.367 |
| 20.Do you answer questions that are asked by the nurse, doctor, or staff? | 4.5, 5 (1.0) | 4.7, 5 (0.76) | 0.933 |
| 21.Do you ask questions of the doctor, nurse, or clinic staff? | 4.3, 5 (1.1) | 4.3, 5 (1.1) | 0.578 |
| 22.Do you make a list of questions before the doctor’s visit? | 2.6, 3 (1.5) | 3.2, 3 (1.5) | 0.246 |
| Managing Daily Activities | |||
| 23.Do you request and get accommodations and support you need at school or work? | 3.9, 5 (1.5) | 3.6, 5 (1.47) | 0.171 |
| 24.Do you apply for a job or work or vocational services? | 3.1, 3 (1.5) | 3.5, 4 (1.6) | 0.801 |
| 25.Do you get financial help with school or work? | 2.7, 2 (1.7) | 2.5, 1 (1.8) | 0.143 |
| 26.Do you help plan or prepare meals/food? | 3.8, 4 (1.3) | 3.9, 4 (1.3) | 0.376 |
| 27.Do you keep home/room clean or clean-up after meals? | 4.3, 5 (1.1) | 4.5, 5 (0.84) | 0.552 |
| 28.Do you use neighborhood stores and services? | 4.2, 5 (1.2) | 4.5, 5 (1.0) | 0.248 |
| 29.Do you call on and use community support services and advocacy services when you need them? | 2.4, 2 (1.7) | 2.4, 1 (1.7) | 0.382 |
| Total TRAQ score | 98.5, 100 (16.8) | 110.4, 114 (20.1) | <0.001 |
| Change in Total TRAQ Score | +11.7, +13 (14.6) | --- | |
| Results presented as mean, median (SD). | |||
