The MAGICC and practical approach to rheumatology transition

Abstract

This article describes the inception and continuing evolution of a seamless adolescent rheumatology service across a children's and adult hospital. This service is still a work in progress but its principles are embedded in the MAGICC approach: Moving on in adolescence, Growing up In Collaboration and Coping.

The coming of age of adolescent rheumatology

“…13,23,25 For example, genetic risk conferred by specific HLA alleles varies consider ably with age of disease onset in JIA (now confirmed by complete haplotype analysis), and age of disease onset is a key factor that contributes to variations in gene expression and clinical course in this disease. 35 These findings indicate that the pathogenetic mechanisms under lying juvenile rheumatic disease might vary depending on age at disease onset, which is an important consideration for selecting the most appropriate treatment in young people, and highlight the requirement for additional research in young patients.…”

“…Consideration of these relationships during transition of health care is fundamental to ensuring adherence, managing disease in young people and maximizing their quality of life. 13,14 Care transition services Defining transitional health care Many-perhaps the majority of-individuals navigate through adolescence without experi encing extensive or lasting personal difficulty; however, their behaviours during this period can be challenging for families and carers, as well as for health-care profes sionals. 21,47 Furthermore, discharging children with chronic diseases from paedi atric clinical care and enrol ling them in adult health services has the potential to cause disengagement of young people from their health care, and creates the risk that such patients might fall in the existing gap between paediatric and adult care-literally lost in transition during this vulnerable time.…”

“…Poor adherence, limited understanding of the disease and thus the need to comply with treatment, isolation and inadequate self-advocacy skills, as well as a reluctance to leave services with known and trusted staff represent patientdependent factors that might hamper effective transitioning. 7,13,14 On the other hand, parents are not always willing to relinquish control when adolescent patients are transferred to adult health-care systems. 7,13,14 Likewise, paediatric care providers can have difficulty in 'letting go' of their patients.…”

“…7,13,14 On the other hand, parents are not always willing to relinquish control when adolescent patients are transferred to adult health-care systems. 7,13,14 Likewise, paediatric care providers can have difficulty in 'letting go' of their patients. In addition, adult health-care providers might have limited knowledge of childhood-onset rheumatic disease and outcomes, 7,13,14 and could, potentially, provide care to young people that is less than ideal.…”

“…[10][11][12] Furthermore, unmet needs of adolescents with chronic rheumatic diseases and gaps in the care of this patient group, particularly at transfer to adult health-care provision, are still reported, despite the solid evidence base supporting the need for, the practical approaches to, and the positive outcomes of planned and individualized transitional care. 7,13,14 In a commissioned UK Department of Health review of this topic, Kennedy 15 highlighted some of the problems underlying these issues, stating that "a main cultural obstacle for young people is the lack of recognition of them as distinctly different to children as well as adults", and that adolescents represent "a forgotten group, caught between child and adult, and therefore the bureaucratic barriers and professional spheres of influence". Another important aspect complicating the implementation of health-care transition programmes is the lack of research into how patients in the adolescent age group and their developmental milestones should be evaluated.…”