E73 Resilience and transition readiness for adolescents living with rheumatic diseases: a narrative review of literature and a plea for action

Abstract

Abstract Introduction Rheumatic diseases are among common chronic health conditions affecting the pediatric population and persist through adolescence to adulthood. Adolescence is a complex period of development, growth and vulnerability, especially for those living with chronic illnesses. Socio-emotional, physical and cognitive growth spurt, quest for independence and peer pressure affect coping with rheumatic disorders and adherence to management. Dealing with rheumatic diseases may be associated with disruption of school routine, relationships and friendships, body image and overall quality of life, and may be devastating to affected adolescents. An additional toll on mental health is exerted by dealing with loss of fellow patients who succumb from the diseases like their own. A comprehensive mode of care that foster resilience and well-being of adolescents beyond disease control, and ensuring successful transition to adult care is of paramount importance. The objective of this review was to synthesize evidence on resilience programs and transition services offered to adolescents living with rheumatic diseases. Adolescents living with rheumatic diseases are of two classes; those growing into adolescence with child-onset rheumatic diseases and those who are newly diagnosed during adolescence. This review included both populations. We also aimed to specifically document such services existing in the Sub-Saharan Africa (SSA) context. Methods We conducted a narrative review of literature from publicly available databases including google scholar and PubMed. PICO aspect of this review was as follows; P: Adolescents living with rheumatic diseases, I: Transition and resilience programs to foster their well-being during and beyond adolescence C: there was no comparator group assessed and O: successful transition to adult care. Results Challenge on comprehensive care for adolescents living with rheumatic diseases and successful transition of adolescents from child-oriented care to independent adult care exist globally. Lack of adolescent oriented care, teaching aids and poor knowledge of providers on the importance of offering adolescent-oriented care rather than dealing with the disease alone have been implicated. Further to that, shortage of resources such as space, finances and personnel have been documented to hinder implementation of adolescent friendly services. Lack of integrated multidisciplinary coordination involving clinicians, sociologists, psychologist and community workers has also been shown to hamper wholistic care approach for adolescents growing up with rheumatic diseases. Various clinic models, transition programs, transition readiness assessment tools (TRAT) and transition readiness assessment questionnaires (TRAQ) have been proposed, most of which are from high income settings. Of importance to note, there is an alarming scarcity of literature from SSA context despite a growing population of children and adolescents diagnosed with rheumatic diseases. Questions remain; what are the needs to be addressed to enhance resilience of adolescents living with rheumatic diseases in SSA context? What are the acceptable methods to assess transition readiness, foster adolescents’ treatment responsibility and good treatment outcomes? Conclusion Due to complexity of adolescence time period, there is an urgent need for context specific models that may help adolescents living with rheumatic diseases navigate through adolescence and successfully transit to independent adult care. Multiple clinical care and transition models have been proposed to enhance successful transition of adolescents living with rheumatoid diseases to adulthood. However, adolescents from SSA may have unique challenges compared with those from developed countries where most of the studies have been done. There is an urgent need to address this gap. Ethics This work encompasses synthesis of evidence already published material containing de-identified information. Ethical approval was not deemed pertinent.