Supportive Care Program for Adolescents and Young Adults with Inborn Errors of Metabolism to Improve Transition to Adult Services

What this Trial Is About

This research aims to improve the transition process for adolescents and young adults with inborn errors of metabolism as they move from pediatric to adult metabolic care. It focuses on assessing the current status of patients readiness for transfer, including their knowledge of adult care services, organizational skills, disease and treatment understanding, quality of life, and self-confidence. The study also records relevant biochemical or physical health markers from the previous year to inform these assessments. Participants receive targeted educational and empowerment interventions designed to enhance their understanding and skills related to adult metabolic care. These structured modules use existing materials adapted as needed and focus on patient education and information. The study measures the immediate effects of these interventions on patients knowledge about adult services within one month, with follow-up assessments of all baseline parameters at six and twelve months to evaluate longer-term impacts. Throughout the study, researchers collect psychological assessments alongside biochemical or physical disease markers appropriate to each participants condition. This comprehensive monitoring helps evaluate the success of the transition interventions over time. The total participation period includes initial baseline assessments, one-month, six-month, and twelve-month follow-ups, ensuring detailed tracking of progress and health status.

Targeted Interventions for Successful Transition and Transfer of Adolescents With Inborn Errors of Metabolism to Adult Services