Has the gap been bridged yet? Young people in paediatric and adult rheumatology

Abstract

Editorial Has the gap been bridged yet? Young people in paediatric and adult rheumatology Providing adolescent rheumatology services In the past decade we have seen increased recognition of the specific developmental needs and health outcomes for adolescents within both paediatric and adult rheuma-tology [1]. This progress is set against raised national and international awareness of the importance of this unique stage of life. The health of young people (10–24 years), who now represent nearly half the world's population, i.e. the largest generation of adolescents in history, is a national and indeed an international health priority [2, 3]. This year the Lancet published a second series on ado-lescent health highlighting the global importance of this age group and called for 'strategies that place the adoles-cent years centre stage—rather than focusing only on specific health agendas', thereby providing important opportunities to improve health outcomes for both ado-lescents and adults [3]. However, despite adolescent health being higher up on health policy agendas, imple-mentation of youth-friendly services including transitional care has been frustratingly slow [2]. In the USA in 2011, the Academy of Pediatrics and others stated that 'after nearly a decade of effort, widespread implementation of health transition supports as a basic standard of high-quality care has not been realized' [2]. Unmet needs of adolescents with rheumatic disease [4] as well as lapses in their care at transfer [5] are still being reported by leading rheumatology centres despite the first transi-tional care programme in rheumatology being reported 20 years ago [6]. Why is it so difficult to bridge the gap be-tween paediatric and adult services (including rheumatol-ogy) and to meet the developmental needs of adolescents? In these austere times, finance is an obvious key barrier. However, an example of a cost-neutral but quality im-provement is the reassignment of patients in the 16-to 25-year-old age group attending various clinics in a large department into a regular single clinic to a clinician with interest and training in adolescent and young adult rheumatology. Few studies to date have incorporated a health economics evaluation, although Bent et al. [7] re-ported that teams for young people with a range of dis-abilities including arthritis were no more expensive than ad hoc services and were actually associated with better out-comes. Furthermore, better health outcomes such as im-proved diabetes control [8] and improved graft survival [9] reported after the introduction of developmentally appropriate care in other specialties can potentially be translated into cost savings in adult care. We need similar economic cost evaluations in rheumatology. Limited finance is by no means the only barrier to implementation. Price et al. [10] reported the importance of three elements for successful implementation of one aspect of adolescent healthcare, transition. The elements were (i) the compatibility of tasks within existing roles and skills, (ii) long-term sustainability and factors to support this and (iii) the need for accountability by those designing and delivering it [10]. Price et al. [10] also emphasized the importance of a transition champion and this is particularly true in countries where adolescent medicine is not a recognized specialty. With this in mind, one could pro-pose that every paediatric rheumatology service and their local adult counterparts identify a paediatric and an adult adolescent lead rheumatology practitioner to work together to champion the development of processes within their respective services to meet the developmental needs of adolescents and young adults. The potential of Internet-based resources for this age group for such net-works, particularly if geographically disparate, is significant. Another barrier is attitudes. We need to move away from the concept that transitional care is synonymous with adolescent rheumatology and instead consider the young person at their particular stage of physical, cogni-tive, psychosocial and educational development. Ensuring inclusion of adolescent-specific knowledge and compe-tencies in postgraduate training curricula for all rheuma-tology professionals will help ensure this (Table 1). Adolescent training is core to all paediatric rheumatology medical training given the workload presented by the 10-to 18-year-olds. As brain development extends into the mid-20s and has implications on health and illness in this age group [3], all adult rheumatologists should also have core knowledge and competencies to work with this age group. However, young adults represent a much smaller component of the adult rheumatology workload and therefore relatively fewer adult rheumatologists with a special interest in adolescent and young adult health (i.e. beyond core training) will be required. Such professionals could then develop regional young adult services, which have been reported to be a key component of successful transition programmes [11]. Perhaps one day soon we will