Validation of a health care transition readiness assessment instrument for youth with special health care needs

Background: Validated questionnaires to measure skills and abilities for successful health care transition for Youth with SHCN are not available.

Objective: To present results of validation and reliability testing of the Transition Readiness Assessment Questionnaire (TRAQ 3.0) for youth with special health care needs.

Methods. We developed a Transition Readiness Assessment Questionnaire based on a review of the existing literature and on a theoretical framework of skills needed to navigate health care transition successfully. For each identified area or skill we applied as a measurement scale the five stage Stages of Change model. The instrument was sent to experts in the field of health care transition, and they were asked to prioritize items and provide feedback on item content. A revised version was administered to 15 youth and tested for readability and clarity. The resultant questionnaire has 11 subscale scores and is organized in the following 3 domains; Managing Your Own Health Care, Interacting with Health Care Providers, and Other Translation Activities. The questionnaire was administered to 48 adolescents. The JaxHATS nurse care coordinator, who knew the youth well and was blinded to the patients' scores, rated each youth on the 11 subscale scores. Cronbach alphas were conducted on patient subscale and domain scores. Patient and staff scores were tested for agreement using t-tests, correlations, and the Kappa statistic for agreement. Factor analysis was conducted on both patient and staff subscale scores.

Results: Cronbach alpha on patient subscale scores were greater than 0.8 for all but 3 subscales (Medical History, 0.54, Self Management, 0.70, Use Community Resources, 0.65). Cronbach alphas for the 3 Domain scores were 0.93 for Managing Your Own Health Care, 0.91 for Interacting with Health Care Providers and 0.88 for Other Translation Activities. Correlations between scale scores of the patient and clinician were all positive and ranged from 0.62 on the Medical History scale to 0.013 on the Community Services Scale, with most patient/clinician correlations ranging from 0.2-0.4. Patient/Clinician Domain score correlations ranged from 0.47 to 0.28, which are in the moderate range. Factor loadings verified three underlying Domains with overlap between the patient and clinician generated factors.

Conclusions: We have developed a new tool to assess readiness for transition entitled the Transition Readiness Assessment Questionnaire 3.0. While still in the development stage, it demonstrates good face validity, excellent internal reliability, and modest criterion validity. There is moderate agreement between the youth and the clinician on the 3 Domain scores. The TRAQ 3.0 Questionnaire is a useful tool to assess transition readiness in Youth with Special Health Care Needs.