Development and psychometric evaluation of TEXP-Q: a questionnaire measuring transition and transfer experiences in emerging adults with type 1 diabetes.

BACKGROUND: During transition to adulthood and transfer to adult healthcare, emerging adults with chronic conditions are at risk of deteriorating disease control, well-being, and acute, as well as long-term complications. Despite an increasing call for person-centred healthcare services attuned to young peoples' needs, few validated instruments exist pinpointing adolescents' and emerging adults' experiences of preparation for transition and transfer. Thus, the overarching purpose of this study was to develop a person-centred, clinically applicable instrument (Transitional care EXPeriences Questionnaire, TEXP-Q) adjustable to different chronic conditions, although the focus in the present study was Type 1 Diabetes. The specific aim was, therefore, to describe the development and psychometric evaluation of TEXP-Q in emerging adults with Type 1 Diabetes. METHODS: Initial development of the TEXP-Q was inspired by existing research. Items were formulated in accordance with consensus recommendations for developing patient-reported measures, and extra consideration was taken to ensure person-centredness. Psychometric evaluation comprised two phases: In phase I, data from cognitive interviews, content validity indexing, and judgement of an expert panel provided information on face and content validity. In phase II, data from a cross-sectional study conducted at eight adult diabetes outpatient clinics in Sweden (n = 163) allowed for explorative factor analysis (EFA), as well as calculation of content validity, reliability and responsiveness. RESULTS: Combining results from cognitive interviews, content validity index values and expert panel judgement, a test version of TEXP-Q was developed, the content and face validity of which were considered good. This version consisted of 17 items answered on a five-point Likert scale, and three open-ended questions answered in free text. During EFA, four items were removed, and a three-factor solution was recognised as most adequate, accounting for 60% cumulative variance and one single cross-loading. After EFA, the instrument comprised 13 questions, divided into three latent factors. Cronbach's alpha for the complete instrument was 0.866, which indicates good internal consistency. Crohnbach's alpha approximated to 0.8 for all factors respectively. CONCLUSION: TEXP-Q is a newly developed, person-centred instrument which has proven to be both valid and reliable when applied to youths with T1D. The questionnaire fills a need for instruments focusing on emerging adults' experiences of preparation for transition and transfer.

Effectiveness of the STEPSTONES Transition Program for Adolescents With Congenital Heart Disease-A Randomized Controlled Trial.

PURPOSE: Adolescents with congenital heart disease transition from childhood to adulthood and transfer from pediatric-oriented to adult-oriented care. High-level empirical evidence on the effectiveness of transitional care is scarce. This study investigated the empowering effect (primary outcome) of a structured person-centered transition program for adolescents with congenital heart disease and studied its effectiveness on transition readiness, patient-reported health, quality of life, health behaviors, disease-related knowledge, and parental outcomes e.g., parental uncertainty, readiness for transition as perceived by the parents (secondary outcomes). METHODS: The STEPSTONES-trial comprised a hybrid experimental design whereby a randomized controlled trial was embedded in a longitudinal observational study. The trial was conducted in seven centers in Sweden. Two centers were allocated to the randomized controlled trial-arm, randomizing participants to intervention or control group. The other five centers were intervention-naïve centers and served as contamination check control group. Outcomes were measured at the age of 16 years (baseline), 17 years, and 18.5 years. RESULTS: The change in empowerment from 16 years to 18.5 years differed significantly between the intervention group and control group (mean difference = 3.44; 95% confidence interval = 0.27-6.65; p = .036) in favor of intervention group. For the secondary outcomes, significant differences in change over time were found in parental involvement (p = .008), disease-related knowledge (p = .0002), and satisfaction with physical appearance (p = .039). No differences in primary or secondary outcomes were detected between the control group and contamination check control group, indicating that there was no contamination in the control group. DISCUSSION: The STEPSTONES transition program was effective in increasing patient empowerment, reducing parental involvement, improving satisfaction with physical appearance, and increasing disease-related knowledge.