The readiness of pediatric rheumatology patients and their parents to transition to adult‐oriented treatment

Abstract

Introduction Transition is a planned process of pediatric patients from child‐centered to adult‐oriented treatment. Transitional care for patients with chronic diseases is essential. The present study aimed to evaluate the readiness of patients with rheumatic diseases and their parents for transition process. Method This is a cross‐sectional, single‐center study. All patients and their parents were questioned about their awareness of and willingness to undergo transitional care. Transition Readiness Assessment Questionnaire (TRAQ) was applied to all the participants. TRAQ is a tool for measuring readiness for transitional care in adolescents with chronic diseases. TRAQ includes 20 items that are divided into 2 domains: self‐management and self‐advocacy. Results A total of 157 (87 girls/70 boys) patients and their parents were enrolled. Of them 64 were diagnosed with familial Mediterranean fever, 52 with juvenile idiopathic arthritis, 21 with systemic lupus erythematosus, and 20 with Behçet's disease. The median age of the patients was 16 years (15‐18). However, all patients and parents accepted that transition to adult‐oriented care is necessary; only one‐third of them were aware about transitional care. Eighty (50.9%) patients and 147 (93.6%) of the parents stated that they were wishing to continue pediatric rheumatology treatment. The mean TRAQ self‐management domain and self‐advocacy domain total scores in the patients were 1.76 ± 0.51 and 1.72 ± 0.49, respectively (P = .48). The mean TRAQ total score was not different between patients and parents. When we assessed the factors affecting transition process, the TRAQ score was lower among patients with active disease, and requiring hospitalization during the previous year. Conclusion Assessment od the readiness of patients with chronic rheumatic diseases for transition care will increase the awareness of patients and their parents as well, and provide determination of the optimal time for transition.

Transition readiness in adolescents with juvenile idiopathic arthritis and their parents: Our single-center experience

“…Similar to our results, the other authors found no significant difference in total TRAQ scores between female and male JIA patients. 4,29,30 In contrast to our findings, Bingam et al 6 reported that having a concomitant disease, family member with autoimmune disease, and longer disease duration was associated with higher self-reported independence and transition readiness. We found no significant association between disease activity or number of previous hospitalizations and readiness for transition.…”

“…This might be explained by the fact that parents of children with chronic diseases are overprotective in caring for their children. Sönmez et al 30 also reported similar results.…”

“…4,6,28 In contrast, Jensen et al 29 showed that the increase in TRAQ score was not associated with increasing age in patients with chronic health conditions. Sönmez et al 30 also reached the same conclusion. In our study, total TRAQ scores among parents also increased with increasing age and total TRAQ scores did not significantly differ between patients and parents.…”

“…As opposed to our findings, Turkish authors showed that active disease and the increasing number of previous hospitalizations were associated with lower TRAQ scores and the decreased readiness for transitional care. 30 To the best of our knowledge, this is the first study to show that JIA disease subtypes, JIA associated uveitis, and treatment with biologics are not associated with TRAQ scores and JIA patients' and parents' readiness for transition.…”

Validation and Reference Scores of the Transition Readiness Assessment Questionnaire in Adolescent and Young Adult IBD Patients

“…A commonly used patient-reported outcome measure (PROM) during transition is the Transition Readiness Assessment Questionnaire (TRAQ-20), a generic questionnaire (3,(11)(12)(13)(14)(15)(16)(17)(18). TRAQ has good internal reliability and has been validated in adolescents and young adults (AYAs) with various chronic diseases (19), but not in IBD.…”