Transitioning adolescent and young adults with chronic disease and/or disabilities from paediatric to adult care services – an integrative review

Abstract

Aims and objectivesThis paper aims to provide an updated comprehensive review of the research‐based evidence related to the transitions of care process for adolescents and young adults with chronic illness/disabilities since 2010.BackgroundTransitioning adolescent and young adults with chronic disease and/or disabilities to adult care services is a complex process, which requires coordination and continuity of health care. The quality of the transition process not only impacts on special health care needs of the patients, but also their psychosocial development. Inconsistent evidence was found regarding the process of transitioning adolescent and young adults.DesignAn integrative review was conducted using a five‐stage process: problem identification, literature search, data evaluation, data analysis and presentation.MethodsA search was carried out using the EBSCOhost, Embase, MEDLINE, PsycINFO, and AustHealth, from 2010 to 31 October 2014. The key search terms were (adolescent or young adult) AND (chronic disease or long‐term illness/conditions or disability) AND (transition to adult care or continuity of patient care or transfer or transition).ResultsA total of 5719 records were initially identified. After applying the inclusion criteria a final 61 studies were included. Six main categories derived from the data synthesis process are Timing of transition; Perceptions of the transition; Preparation for the transition; Patients’ outcomes post‐transition; Barriers to the transition; and Facilitating factors to the transition. A further 15 subcategories also surfaced.ConclusionsIn the last five years, there has been improvement in health outcomes of adolescent and young adults post‐transition by applying a structured multidisciplinary transition programme, especially for patients with cystic fibrosis and diabetes. However, overall patients’ outcomes after being transited to adult health care services, if recorded, have remained poor both physically and psychosocially. An accurate tracking mechanism needs to be established by stakeholders as a formal channel to monitor patients’ outcomes post‐ transition.

Transition from child to adult care in an outpatient clinic for adolescents with juvenile idiopathic arthritis: An inductive qualitative study

“…(2004) described how the unfamiliarity of surroundings and thoughts of becoming as sick as some of the older patients increased anxiety among adolescents with JIA. Similar findings were reported in a review regarding the transition of care process in adolescents and young adults across diagnoses (Zhou et al., 2016). It is well established that after transition, adolescents experience challenges due to differences between the two health care services with regard to environment and care delivery.…”

“We Sometimes Hold on to Ours” – Professionals’ Views on Factors that both Delay and Facilitate Transition to Adult Care

“…Discussions were very similar across all focus groups, which suggest some consensus on the current challenges around this topic. The discussions also resonated with issues relating to transition previously reported in the literature (45). It is of course important to not only seek the views of professionals around transition but also include users – young people and parents.…”

Preparing adolescents with heart problems for transition to adult care, 2009-2010 National Survey of Children with Special Health Care Needs

“…32–34 Recommendations from transition interventions evaluated for other CSHCN include incorporating a structured multidisciplinary transition program, improving availability of resources, training, and staff, starting the transition process by ages 12–14, expanding the role in transition of nurse care managers, pediatricians, and adult clinicians, and offering incentives to providers for completing transition planning components. 35–37 Our findings provide a baseline national estimate of the percentage of adolescents with CHD and their parents receiving transition planning by their provider, what subgroups of adolescents with CHD receive transition planning, and the desire by parents for transition planning for their children. As more centers implement successful transition planning interventions into their patient practice, these national estimates should be updated.…”