Abstract
BackgroundMost childhood-onset rheumatic diseases are chronic health conditions, which need long-term care throughout adulthood. A well-organized transition care is challenging and patient assessment of transition skills is needed for transfer preparation to an adult care setting. The Transition Readiness Assessment Questionnaire (TRAQ) is used to assess transition skills in chronically ill patients. Currently, limited transition skill assessment data exist in pediatric patients with rheumatic diseases, especially in Asian countries. This study aimed to determine the transition readiness skills in patients with rheumatic diseases and ascertain predictive factors contributing to high transition readiness skills.MethodsThis is a cross-sectional study. All patients with rheumatic diseases aged 15–20 years were recruited. The TRAQ was cross-culturally adapted into the Thai language with good internal consistency and reliability. Patients completed the Thai TRAQ at the recent clinic visit and took the retest at a 2-week interval. Demographic data, baseline characteristics, clinical manifestations, and disease status were collected. Descriptive and logistic regression analyses were performed.ResultsA total of 111 patients with a mean age of 17.4 ± 1.8 years were included. Median (IQR) disease duration was 6.4 (3.2–9.0) years. The most common rheumatic disease was juvenile idiopathic arthritis (48.6%), followed by systemic lupus erythematosus (35.1%). The mean TRAQ score was 3.85 ± 0.69. Independent visits (OR 4.35, 95% CI 1.23–15.37) was a predictor of a high TRAQ score. Furthermore, dependent visits (OR 7.84, 95% CI 2.41–25.50) was a predictor of low TRAQ score in the “appointment keeping” domain, whereas inactive disease (OR 4.54, 95% CI 1.25–16.55) was a predictor of a low TRAQ score in “tracking health issues” domain. Lack of knowledge and skills on health insurance coverage, financial management, appointment arrangement, and coping with their illness were issues causing lower TRAQ score.ConclusionsPatients, who had independent visits, had a higher chance to obtain higher TRAQ scores, whereas patients, who had an inactive disease or dependent visits, had less transition readiness skills. Physicians and parents should prepare to transfer patients to adult care settings, mainly encouraging independent living skills.
Highlights
Most childhood-onset rheumatic diseases are chronic health conditions, which need long-term care throughout adulthood
Patients were diagnosed with the following diseases: juvenile idiopathic arthritis (JIA), systemic lupus erythematosus (SLE), juvenile dermatomyositis (JDM), systemic sclerosis (SSc), overlap syndrome, mixed connective tissue disease, and primary systemic vasculitis, according to the International League Associations for Rheumatology classification of JIA [29], the Systemic Lupus International Collaborating Clinics classification criteria for SLE [30], Bohan and Peter diagnostic criteria for a definite diagnosis of JDM [31, 32], the Pediatric Rheumatology European Society/American College of Rheumatology/European League against Rheumatism provisional classification criteria for juvenile SSc [33], the classification and diagnostic criteria for mixed connective tissue disease [34], and the 2012 Revised International Chapel Hill Consensus Conference Nomenclature of Vasculitides [35], respectively
Demographic data and clinical characteristics A total of 111 patients from the pediatric rheumatology clinic participated in the study
Summary
Most childhood-onset rheumatic diseases are chronic health conditions, which need long-term care throughout adulthood. A well-organized transition care is challenging and patient assessment of transition skills is needed for transfer preparation to an adult care setting. Limited transition skill assessment data exist in pediatric patients with rheumatic diseases, especially in Asian countries. Most patients with childhood-onset rheumatic diseases have active disease and long-term morbidity throughout adulthood [1,2,3,4,5,6,7]. Failure to transfer patients into an adult care setting can lead to poor outcomes and increase morbidity and mortality; preparation for the healthcare transition process during the transfer period is vitally important [8,9,10]. The transition process should be initiated at the age of 12 years, and transfer should occur between the ages of 18 and 21 years by implementing the Six Core Elements of healthcare transition, including the assessment of transition readiness [14, 15]
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