A seamless transition from pediatric to adult care is critical to ensure optimal health outcomes in adolescents and young adults with Juvenile Idiopathic Arthritis (JIA); however, there are obstacles at the patient, caregiver, health care provider (HCP), and health care system level. A “transition tool-kit” has the potential to overcome some of the existing barriers by providing a standardized approach to the transition process. A needs assessment was conducted to determine the most important factors and tools that users would value as part of a transition tool-kit.

Methods:

In total, 8 semi-structured focus groups (approximately 5-7 subjects in each) and 22 individual interviews were conducted for all user types (adolescents, young adults, caregivers, and pediatric and adult multidisciplinary HCPs), at three rheumatology centers in Canada. Data collection at a fourth study site is ongoing (4 focus groups scheduled). Participants were asked about preparations, concerns and wishes regarding the transition process, and how these issues could be addressed using a transition tool-kit. Qualitative data were analyzed using simple descriptive content analysis. Demographic and disease-related (if applicable) data were collected and analyzed using descriptive statistics.

Results:

To date, 20 adolescents (60% female; mean age = 15.9±1.3), 5 young adults (60% female; mean age = 19.8± 0.8), 19 caregivers (89.5% female; mean age = 44.7± 6.7), 20 pediatric HCP (90% female; mean number of years practicing = 14.3±7.6), and 8 adult HCP (87.5% female; mean number of years practicing = 12.0±13.8) have participated in the study. Main themes from the qualitative analysis were: (1) transition process: most participants felt that patients were not properly prepared and expressed concerns about the transition, with a small number of adolescent participants expressing no concerns; (2) treatment decision making: most participants agreed that patients should be the ultimate decision makers following discussion with their caregivers and HCPs but that they need access to accurate and comprehensive information resources before making a decision; patients mostly receive or seek disease-related information from HCPs, their caregivers, and the Internet; (3) transition tools: most participants thought that the tool-kit would streamline the transition process and provided thoughts and suggestions for potential components of the tool-kit, such as a calendar feature to remind patients of appointments and to take medication, and an online self-guided JIA resource website. Most participants thought that the tool-kit would be best suited as a website or mobile application (rather than as a paper-based tool).

Conclusion:

Generally, participants responded positively to the idea of a transition tool-kit and indicated that they would use it. They identified key features of this tool, including a calendar reminder system and a JIA resource website. The results from the current study will inform the development of a standardized transition tool-kit for patients with JIA.