Date: Monday, November 6, 2017
Session Title: Patient Outcomes, Preferences, and Attitudes Poster II
Session Type: ACR Poster Session B
Session Time: 9:00AM-11:00AM
Transition from pediatric to adult care is an important process for adolescents and young adults with Juvenile Idiopathic Arthritis (JIA). A seamless transition is critical for optimal health outcomes; however, young people are faced with obstacles at the patient, caregiver, and health care system levels. A “transition tool-kit” provides a standardized approach to the transition process and has the potential to overcome some of the existing barriers. A needs assessment was conducted to determine the most important features and tools that Canadian users would value in a transition tool-kit.
Participants were recruited from four Canadian rheumatology centres. In total, 22 individual interviews and 12 semi-structured focus groups (with approximately 4-7 participants in each) were conducted, including all user types (adolescents, young adults, caregivers, and pediatric and adult health care providers [HCPs]). Discussion focused on preparations, concerns and wishes regarding the transition process, and how these issues could be addressed using a transition tool-kit. The qualitative data were transcribed and analyzed by two coders using simple descriptive content analysis (NVivo 10). Demographic and disease-related data were analyzed using descriptive statistics.
In total, 20 adolescents (60% female; mean age = 15.9±1.3 years), 12 young adults (58.3% female; mean age = 20.3± 1.8 years), 26 caregivers (88.5% female), 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) participated.
The main themes from the qualitative analysis include:
(1) Preparation for transition: most participants expressed concerns about transition and felt that patients were not properly prepared; however, a small number of adolescent participants expressed no concerns.
(2) Treatment decision making: most participants agreed that patients should be the ultimate decision makers following discussion with their caregivers and HCPs. Patients and caregivers identified the importance of access to accurate and comprehensive disease- and medication- related information from HCPs and online resources prior to making a treatment decision.
(3) Transition tools: participants felt that a tool-kit would streamline the transition process and provided suggestions for potential components, such as a calendar feature to remind patients of appointments and to take medication, an online self-guided JIA resource website, a smartphone app for tracking and managing symptoms, and a resource to help manage JIA in college or university. Most participants thought that the tool-kit would be best suited as a website or mobile application.
Overall, participants felt that adolescents are not adequately prepared for transition, and had a positive response to the concept of a transition tool-kit. Key components of this tool-kit were identified by users, with a priority on resources for self-management and shared decision-making. Next steps include the development of a standardized transition tool-kit, which will incorporate existing tools and development of new tools as necessary.
To cite this abstract in AMA style:Luca N, Rozenblyum E, Elliott A, Spiegel LR, Johnson N, Ahola Kohut S, Brandelli Y, Johns C, Luca S, Mosher DP, Soon G, Toupin-April K, Uifalusi G, Stinson JN. Perspectives of Young People with Juvenile Idiopathic Arthritis, Their Caregivers, and Health Care Providers on Transition to Adult Care: Informing Development of a Transition Toolkit [abstract]. Arthritis Rheumatol. 2017; 69 (suppl 10). https://acrabstracts.org/abstract/perspectives-of-young-people-with-juvenile-idiopathic-arthritis-their-caregivers-and-health-care-providers-on-transition-to-adult-care-informing-development-of-a-transition-toolkit-2/. Accessed July 10, 2020.
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