At our institution, we utilize multiple programs within our EMR to identify patients with and without ID so that we can ensure a smooth transition when they are ready to transfer to adult care. Method: We utilized our EMR to facilitate the process of transitioning pediatric epilepsy patients seen at our institution to adult care. The TRAQ, which assesses individual metrics for adequate self-management that have been validated for patients with special healthcare needs Sawicki, GS et al.
The TRAQ is a validated tool consisting of 20 questions that has been used to better understand which pediatric patients were able to transition. It measures two domains: self-management and self-advocacy. BPAs are commonly-used pop-up alerts in the EMR for a variety of systems-wide metrics, including improving quality. It also provides links to the TRAQ, social work consults, release of information, and patient-facing transition-related educational material.
It is being piloted for two of our pediatric epileptologists. While it is likely that this would present itself at some point in the transition process, early screening and identification is essential. Second, we utilized a list-serve from the University of Florida on Health Care Transition to identify providers working in transition health programs.
Furthermore, we asked them to rank each question in order of importance within each of the 11 subdomains. Twelve transition healthcare providers agreed to rate the 62 items in the questionnaire. The 12 providers had an average of 22 years in practice, and 9 years practicing in transition-related services; three were physicians or nurse practitioners, 7 were nurses, and 2 were social workers. Average question rating scores ranged from a high of 4. All questions with an average score of 4.
The resulting item questionnaire was fielded to patients at 2 sites and psychometric analyses were conducted, including principal components factor analysis and known-groups analysis, to demonstrate the construct validity, factor structure, and internal reliability of the TRAQ. No youth we approached for the study declined to participate.
We examined the distribution of the item scores and imputed the missing item value before conducting psychometric analyses. We examined the mean and standard deviation of individual item score and found that the distribution of item scores was not skewed. Once all missing values were imputed, the dataset was then analyzed using standard descriptive statistics to summarize the demographic and clinical characteristics of the TRAQ sample and to describe individual item scores and TRAQ domain scores.
Because there is no prior evidence to suggest the structure of a transition readiness measure, to better determine factorial structure of the TRAQ, we conducted a principal component exploratory factor analysis EFA using the 33 items being retained in the previous step. We rotated the extracted factors using the oblique axes solution to better identify underlying factors as well as establish the relationship of each of the items to one another within the identified factors.
The use of an oblique solution instead of an orthogonal solution is based on the evidence that the factors extracted were moderately correlated. We examined the factor loadings of items associated with the extracted factors to retain a subset of items of the TRAQ. Factor loading measures the magnitude or importance of an item to factors, which is equivalent to the correlations between the item and factors. We deleted those items with factor loadings that were 1 lower than.
We used four external variables to demonstrate construct validity of the TRAQ, including age group 16—18, 19—20, and 21—26 years , gender, race white and non-white , and diagnosis type activity-limiting condition and mental health condition or cognitive limitation. We compared the mean domain scores across different categories of a specific known-group.
We performed t -tests to demonstrate whether the hypothesized relationships between known-groups and TRAQ domain scores were statistically significant. We also performed multivariate linear regression to demonstrate relationships of one known-group with TRAQ domain scores after adjusting for the influence of other known-groups. All analyses were performed with SAS software version 9.
We conducted a principal component factor analysis to assess the factor structure for the TRAQ. However, a scree plot suggested that a clear elbow emerged with solely the first two factors eigenvalues 9. Based on these findings, we suggest that two factors subdomains are captured by the TRAQ to measure the concept of transition readiness.
We classified items into one of the two domains, and deleted items if they were weakly associated with both domains. We excluded these four items in the subsequent validation analyses, and these four items are not included in the version of the TRAQ that is presented in the appendix see supplementary material online. Domain 1 assesses Skills for Chronic Condition Self-Management such as filling prescriptions, understanding treatment side effects, handling medical equipment, and arranging medical follow-up visits.
This self-management domain also includes items related to managing finances, health insurance, and payments for medical equipment and supplies. Domain 2 primarily assesses Skills for Self-Advocacy and Communication with Health Providers and includes items related to skills for communication with the healthcare team and items related to managing activities of daily living and use of school and community resources.
Overall, the mean score for the Self-Advocacy domain was higher than the Self-Management domain mean 3. For Self-Management, those with activity-limiting health conditions mean 3. For Self-Advocacy, we found the same results with the primary diagnosis group. Older age also led to significantly higher scores in both domains. Females had significantly higher scores for Self-Advocacy mean 3.
There was no significant difference in either domain score based on race. In the regression model, age, gender, diagnosis type, and race were used as independent variables. In this study, we have presented findings from our initial efforts to develop and validate a self-administered questionnaire, the TRAQ, a tool that measures skills needed to successfully transition from pediatric to adult healthcare and progress in other life areas such as education, work, and daily life.
Criteria for transfer to adult healthcare are quite variable, and often rely on age as the sole determining factor Betz, Our goal is to broaden these criteria through a more comprehensive assessment of transition readiness. Although there exist many checklists that assess knowledge or behaviors related to transition, to our knowledge the TRAQ is the first skill-focused tool to assess the developmental process of readiness for health transition for youth with chronic medical conditions.
By adapting the Stages of Change model as a framework for responses on the TRAQ, we feel that the instrument can more clearly identify the developmental stage of readiness to transition, and thus allow for appropriate interventions based on the skills assessed. We initially conceived the TRAQ with three domains managing health, interacting with healthcare providers, and other transition skills , but our factor analysis suggests that the items can be grouped into two clusters.
Although there is overlap among the skills which cluster on each of the two domains, the skills assessed are divided broadly into Self-Management and Self-Advocacy domains. The TRAQ Self-Management domain assesses skills in chronic disease self-management, including skills in managing medication, medical appointments, and health insurance. For youth with chronic medical conditions such as cystic fibrosis, diabetes, or seizures, these skills are essential in maintaining good health outcomes and often require a large time commitment.
A study of young adults with congenital heart disease found that successful transfer to adult care was correlated with similar skills such as attending appointments alone and arranging appropriate follow-up Reid et al. Youth with chronic diseases may be reporting a high level of comfort and skill in such tasks since they have been taking multiple medications throughout their childhood.
By the time they reach adolescence and early adulthood, they have already progressed to the maintenance phase of such skills. Alternatively, these high scores may be due to adolescents rating their behavior as more advanced than it actually is. Future research will need to account for adherence in assessing such self-management skills. Continued support for the development of chronic condition self-management skills needs to be integrated into transition support programs and services.
Not surprisingly, the lowest scores on the TRAQ were on skills related to maintaining health insurance and ensuring payments for medical care or for other life areas such as education. We assume that for the majority of adolescents and young adults, particularly those with frequent contact with the healthcare system, insurance matters, and healthcare financing are managed by parents or caregivers. These gaps can have detrimental effects on health outcomes during healthcare transition.
This is not surprising given the frequency of contact that most YSHCN have with their healthcare providers. Many healthcare providers encourage adolescents to communicate independently with physicians and nurses as a routine part of a healthcare visit, so these transition skills are likely to be achieved earlier than others. Lower scores in the Self-Advocacy domain were found in skills involving employment, community support services, and financial help.
This may simply be a reflection of a lower perceived need for such services, rather than a lack of skills in accessing such services. In our analysis of differences in TRAQ scores based on clinical and demographic characteristics, we found that the scores increased in the hypothesized direction with regard to two characteristics: age and primary medical condition.
As expected, older age was associated with higher scores in the self-management domain. This suggests that as adolescents with SHCN get older, they are indeed progressing along a path of skill-building in terms of self-management skills. Interestingly, age was not associated with different TRAQ scores on the Self-Advocacy domain, suggesting that these indirect health management skills may be learned at an earlier point in adolescence, possibly through the schools.
Secondly, youth with physical health problems scored higher than youth with mental health or cognitive problems in all aspects of the TRAQ. These results suggest that youth with physical health problems, as a group, are more mature and independent with regard to issues of transition than are those with serious mental health problems or cognitive limitations.
This group may have had increased continuity of healthcare during adolescence, such as in specialty medical clinics, thus leading to greater opportunities to develop transition skills with support of their healthcare team. As such, providers of support for young adults without a consistent source of healthcare, particularly those with mental health issues, need to acknowledge the differences in readiness achievement National Center on Youth Transition Initiative, The skills assessed in this domain primarily focus on perceived communication abilities and activities related to school, household, and community.
Our results suggest that girls perceive their skills in these areas as more developed, perhaps due to gender differences in adolescent maturity, or perhaps due to societal expectations. Such gender differences in adolescent maturity have been found in other studies on health status of young adults. In particular, girls seem to achieve developmental milestones such as marriage, living independently, and having children earlier than boys Park et al.
Our findings are also similar to studies of emerging adulthood which found that young women had higher relational maturity and expectations in terms of emerging adult skills Nelson et al. Whether these gender differences in transition readiness lead to differences in transition outcomes clearly needs further study. Our study has several limitations. Our original questionnaire comprised three groupings of questions, yet our factor analysis revealed a two-solution factorial structure.
As there is overlap between items that comprised the two factors, this factor structure of the TRAQ may have resulted from the relatively small size of our sample. While our population was diverse with respect to a number of important characteristics such as age and clinical condition, we will need to continue to collect data on a larger cohort to either confirm or modify our findings and to better refine the question wording and factor structure for the instrument.
In addition, the data from the TRAQ relies on adolescent self-report of skills and knowledge and did not include any objective measures of whether the adolescent had actually achieved these skills. As such, we are developing parallel questionnaires for caregivers and clinicians for future study and validation. Although we did see differences in TRAQ scores based on diagnostic groupings, we were not able to account for inherent differences in diagnoses or disease severity, including the complexity of care, in the current analyses.
Our work represents the first step in the development of an instrument measuring critical skills needed for successful healthcare transition. We acknowledge that the current two-domain structures presented in this article may change with further study. This will allow us to refine the questions and define the domains within the instrument. 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.
Establishing the predictive validity of the instrument will be essential in determining values for the instrument that can be used to determine when a particular youth is developmentally ready to transfer to the adult healthcare system. In conclusion, this study details the development of a new instrument for assessing readiness for healthcare transition among youth with special healthcare needs.
The TRAQ is a practical tool for use in either primary care or specialty healthcare settings in assessing readiness for healthcare transition among youth with SHCN and provides a reliable measure for assessing skills in self-management and self-advocacy. The TRAQ may also be useful for YSHCN, their caregivers, and clinicians as a tool to identify areas for patient education and track progress throughout the transition process.
Use of this instrument has the potential to improve transition programs and improve health outcomes during healthcare transition for YSCHN. Google Scholar. Google Preview. Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide. Sign In or Create an Account. Sign In. Advanced Search. Search Menu. Article Navigation.
Close mobile search navigation Article Navigation. Volume Article Contents Abstract. Oxford Academic. Xiaoping Yin, MS. Nathan Demars, MS. I-Chan Huang, PhD. William Livingood, PhD. John Reiss, PhD. Revision received:. Cite Cite Gregory S. Select Format Select format.
Permissions Icon Permissions. Table I. Definition a. TRAQ response category. TRAQ score. Precontemplation Has no intention of taking action within the next 6 months I do not need to do this 1 Contemplation Intends to take action in the next 6 months I do not know how but I want to learn 2 Preparation Intends to take action within the next 30 days and has taken some behavioral steps in this direction I am learning to do this 3 Action Has changed behavior for less than 6 months I have started doing this 4 Maintenance Has changed behavior for more than 6 months I always do this when I need to 5.
Open in new tab. Table II. Summary statistics. Table III. TRAQ item. TRAQ domain 1: skills for chronic condition self-management. TRAQ domain 2: skills for self-advocacy and healthcare utilization.
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