The results of this metasummary highlight the needs of patients and families to be taken into consideration in the creation of high-quality pediatric palliative and end-of-life care services and guidelines.
Background
Transitioning from pediatric to adult healthcare can be challenging and lead to severe consequences if done suboptimally. The Transition Readiness Assessment Questionnaire (TRAQ) was developed to assess adolescent and young adult (AYA) patients' transition readiness. In this study, we aimed to (1) document the psychometric properties of the French‐language version of the TRAQ (TRAQ‐FR), (2) assess agreements and discrepancies between AYA patients' and their primary caregivers' TRAQ‐FR scores, and (3) identify transition readiness contributors.
Methods
French‐speaking AYA patients (n = 175) and primary caregivers (n = 168) were recruited from five clinics in a tertiary Canadian hospital and asked to complete the TRAQ‐FR, the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0), and a sociodemographic questionnaire. The validity of the TRAQ‐FR was assessed using confirmatory factor analyses (CFA). Agreements and discrepancies were evaluated using intraclass correlation coefficients and paired‐sample t tests. Contributors of transition readiness were identified using regression analyses.
Results
The five‐factor model of the TRAQ was supported, with the TRAQ‐FR global scale showing good internal consistency for both AYA patients' and primary caregivers' scores (α = .85–.87). AYA patients and primary caregivers showed good absolute agreement on the TRAQ‐FR global scale with AYA patients scoring higher than primary caregivers (ICC = .80; d = .25). AYA patients' age and sex were found to be contributors of transition readiness.
Conclusions
The TRAQ‐FR was found to have good psychometric properties when completed by both AYA patients and primary caregivers. Additional research is needed to explore the predictive validity and clinical use of the TRAQ‐FR.
Identity development represents a central task of adolescence. Identity achievement is characterized by a coherent sense of who one is following a period of exploration and can help navigate the challenges of adulthood. This study examined identity within a quality of life (QOL) context in 85 adolescents with a renal transplant or with Type 1 diabetes in comparison to 90 healthy controls. Results revealed significant differences in ideological identity, with patients showing higher levels of diffusion and controls showing higher levels of foreclosure. No differences with respect to interpersonal identity, QOL, perceived control over the QOL domains, and perceived opportunities for growth and development were found. Future research should assess identity and QOL over a longer period of time to determine whether differences between chronically ill and healthy young adults can be detected.
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