The PETRA questionnaire proves valuable in assessing the transition readiness of juvenile idiopathic arthritis patients into adult care, with a focus on self-management skills.
The “pediatric transition readiness to adult care (PETRA)” questionnaire was proven to be a valuable tool to evaluate the readiness for patients with juvenile idiopathic arthritis (JIA) to transition into adult clinics, according to a study published in Pediatric Rheumatology.1
“As adolescents with JIA grow up, their disease is no longer monitored in a pediatric clinic, and the responsibility for their care is moved to an adult clinic,” wrote Katriina Mikola, MD, doctoral researcher at New Children’s Hospital, Pediatric Research Center, University of Helsinki and Helsinki University Hospital, Finland, and colleagues. “However, this transition involves more than just the actual point of transfer, it begins in early adolescence and will later involve the adult clinic team as well.”
Previous research has indicated a structured transition promoted a patient’s overall outcomes in a variety of ways. Patients with JIA, the most common rheumatic condition in children, were shown to benefit from a planned transition, as seen in reduced drop-out rates.2
To develop a strategy to support a successful transition while also analyzing the potential consequences of an unsuccessful one, Finnish investigators analyzed self-management skills using the PETRA questionnaire. The questionnaire focused on several factors related to self-management, including independence in disease management, everyday life, and substance abuse. Aspects included medication, pain control, appointments, mental support, sexual health, exercise, school, and future educational plans.
The survey was given to adolescents with ongoing disease activity receiving systemic antirheumatic treatment who were planning to be transferred to an adult clinic. Data were then collected from the pediatric and adult patient records to determine the success of the transition. A successful transition was defined as the patient attending the first adult care visit independently, the visit taking place as scheduled without extra communication, and the treatment plan being carried out as agreed at the last pediatric visit.
A total of 83 patients with JIA participated in the questionnaire, of which 16 did not need the transition to the adult clinic at the transition age of 16 years. During the follow-up period, only 5 patients were not transferred to adult care. Ultimately, information used to define success was available for 77 patients. The mean score of transition readiness was 22.5, with 10 patients (10%) receiving the maximum score of 26.
Most patients (n = 55, 71%) had a successful transition. As such, investigators defined an unsuccessful transition as a score of <24. At the first adult visit, the Disease Activity Score-28 (DAS28) was evaluated in 58 subjects. Those with an unsuccessful visit had a higher DAS28 score (mean 2.21), while those with a successful visit had a lower score (mean 1.35).
Investigators noted limitations including potential issues with generalization and wider application of the survey as the study took place in a single pediatric rheumatology center. Future research should evaluate the usefulness of the questionnaire for other chronic illnesses.
“Based on our findings, the timing of the transition from pediatric care to the adult site should be flexible, allowing the young person to achieve better readiness, capability, and independence in the care of their chronic disease,” investigators concluded. “The determination of what constitutes a successful transition can help to identify those adolescents who need more profound support and education in improving their self-management skills and thus, enhancing their transition process.”