In late adolescence and early adulthood (a stage called "emerging adulthood"), youth face a number of challenges and transitions in their path to independent adulthood. These include transitioning from high school to college, work or vocational training, forming independent romantic relationships or independent households, and transitioning from the pediatric health care system to the adult health care system.
Youth with special health care needs face significant obstacles as they age out of highly supportive child health care services and assume responsibility for their own health care. Youth can be at various stages of readiness to assume these responsibilities. Those youth that are not ready to assume independent responsibility for their own health and health care are at risk for failing to become integrated in the adult health care system and potentially face deterioration in their health.
Through assessment, and provider and family interventions, the various stages of transition can be better measured and validated, therefore, helping both pediatric and adult providers(including programs specifically focused on transition) and families, better understand and support the transition process.
We have conducted two studies to validate the Transition Readiness Assessment Questionnaire (TRAQ). In the first study we administered TRAQ to 192 youth with special health care needs aged 16-26 years in three primary diagnostic categories, conducted factor analysis, and assessed differences in TRAQ scores by age, gender, race, and primary diagnosis type. The results of this study* show that the TRAQ is a useful tool to assess transition readiness in youth with special health care needs and to guide educational interventions by providers to support transition. In the second study we administered the TRAQ to 269 youth and used factor analysis and other methods to reduce the number of items from 29 to 20, the current version of the TRAQ we now endorse (unpublished data). In this study we found that the 20 items were distributed into five subscales:
- Appointment Keeping
- Tracking Health Issues
- Managing Medications
- Talking with Providers
- Managing Daily Activities
For the resulting 20 item TRAQ scale we conducted reliability testing by calculating the Cronbach alpha for the overall scale and for the subscales identified in the factor analysis. The overall scale Cronbach alpha was 0.930 (standardized 0.933). Cronbach alphas for each of the five subscales are as follows:
- Appointment Keeping (0.89)
- Tracking Health Issues (0.76)
- Managing Medications (0.84)
- Talking with Providers (0.90)
- Managing Daily Activities (0.67)
Our work represents the first steps in the development of an instrument measuring critical skills needed for successful healthcare transition. In future studies we plan to administer the TRAQ to a larger number of youths with a diverse set of health conditions over time. This will allow us to further refine the questionnaire. Future work is also needed to assess the association of TRAQ scores on other measures of self-management, self-determination, and health and transition outcomes such as access to adult providers and completion of educational or vocational goals in young adulthood, and to conduct longitudinal analyses of the TRAQ in order to test predictive validity.
Providers can be a part of this continued study by registering and providing resulting data from your individual administered questionnaires in a number of ways. You can download a Excel spreadsheet to tabulate the scores of the patients in your program or study.
*Gregory S. Sawicki, Katryne Lukens-Bull, Xiaoping Yin, Nathan Demars, I-Chan Huang,
William Livingood, John Reiss, and David Wood. Measuring the Transition Readiness
of Youth with Special Healthcare Needs: Validation of the TRAQ—Transition Readiness
Assessment Questionnaire. J. Pediatr. Psychol. (2011) 36(2): 160-171