Review articleFactors influencing the transition from pediatric to adult care: A scoping review of the literature to conceptualize a relevant education program
Introduction
Nearly 10% of adolescents in industrialized societies grow up with a chronic illness [1]. The phenomenon is spreading and is expected to increase in the coming years [2]. Given existing knowledge, almost 90% of young people with long-term health conditions (all chronic illnesses combined) live to an adult age and must be transferred from pediatric services to adult care [3]. Despite an increase in publications since the early 2000s, proposals to support patients remain limited [4], [5] and many institutions have not yet established transition policies [6]. However, when transitions are inadequately managed, young people with long-term health conditions can suffer from a diminished adherence to treatment [7], an interruption in their medical follow-up [8], the emergence of medical complications [9] or general health deterioration [7], [10]. The transition’s major challenge lies in determining how to prevent such difficulties.
A transition is a process that is organized and coordinated to go from pediatric care to the adult health system. It conveys the idea of a formalized plan that optimizes the young person’s health and promotes his or her autonomy and personal development [11], [12]. A transition is therefore different from a transfer, the latter being considered as a one-time event. Adolescence is a process in itself, a developmental transition which is marked by increased self-identity [13]. It takes place between the ages of 10 and 19 years, according to the WHO [14]. An illness can disrupt adolescence by diminishing a young person’s well-being and quality of life. Thus, a transition can be viewed as successful when it results in the youth’s adherence to treatment, his or her continued medical follow-up, the prevention of any medical complications, and the maintenance of a globally satisfactory health condition and autonomy.
According to the literature, patient education can support the transition. Patient education is a process which enables patients to acquire and retain skills and abilities that help them maintain a healthy lifestyle given their illness [15]. The need for patient integration is now undisputed [6], [16], [17]. But the specific skills that the young person is meant to acquire have not yet been defined, and the definition of a relevant education for transition is still unclear [2], [16].
In order to design an adequate patient education program, one must identify the factors that influence health behavior in given circumstances (in this case, the context of transition) [18]. Fegran et al. [19], Pai and Ostendorf [20] and Lugasi et al. [21] published literature reviews which provide answers (as shown in Table 1). However, the results of these studies only offer a rough outline and therefore cannot help to model the transition’s educational aims and the ways in which these are to be implemented.
As Fegran et al. pointed out [19], the literature on transition did not examine the specific needs of young people with health conditions in much detail, while the points of view of carers and parents had been prioritized. Based on this observation, it seems difficult to devise a transition education program that would meet the expectations, preoccupations and priorities of the young people involved. It is interesting to add that the three literature reviews cited above only took into account articles that had been published up to 2009. However, publications on transition have soared since then. For instance, on the PubMed data base, 257 works were published between 2000 and 2009 compared to 421 from 2010 to 2016. It would be worth examining these recent publications (by summarizing the results and identifying potential flaws). Such a new set of data could be added to the previous results and be included in the discussion surrounding the conceptualization of a patient education for transition.
This is why, as we faced such a large number of recent publications, we aimed to supplement previous data. First, we added data taken from journals issued since 2010, and second, we modelled this new set of data by using an analytical framework that classifies the various factors influencing the transition process. Such modelling gives an overview of the factors that influence the transition in order to conceptualize a relevant education program. More specifically, we attempted to elucidate a certain number of points left unanswered in previously cited articles: which of the patients’ educational needs are known at the time of the transition, and which dimensions have yet to be explored? Which operational educational aims can be defined to foster the transition? Which conditions (organizational or based on the environment) must be taken into account to implement an education program for the transition process?
Section snippets
Method
A scoping review of the literature was carried out between February and September 2016 using the PubMed, PsycInfo, ScienceDirect and ERIC databases, and the following keywords: Transition; Transition care; Transition Health Care/programs; Adolescence; Chronic illness/disease/disability; Young adult; Pediatric; Transfer; Special health care needs.
A scoping review is a type of literature search recommended by Arksey and O’Malley “to map rapidly the key concepts underpinning a research area and
Study types
Table 2 describes the methodologies used in the included papers.
Among the 20 articles selected, 11 came from the United States, 3 from Switzerland, 2 from the Netherlands, 1 from Canada, 1 from Hong-Kong, 1 from Japan and 1 from France.
Nine studies related to patients suffering from various chronic illnesses (more than 3 distinct illnesses in the sample). Other studies dealt with a specific illness: 2 focused on HIV, 1 on chronic endocrine disorders, 1 on type 1 diabetes, 1 on asthma, 1 on
Discussion
The scoping review method allowed us to gather scientific data by using an analytical framework to conceptualize an educational program for the transition. Based on the systematic review conducted by Crownley et al. [2], we knew that the education of patients encouraged the transition process. The systematic review method, which uses a precise question to assess research studies, was called upon for questions related to the process’s efficiency [23]. But to conceptualize an educational process,
Limits
There are several limits to our research. Although all of the selected articles came from peer-reviewed publications and, therefore, boast a good level of scientific validity, their level of evidence remains weak. We must be very careful in making generalizations concerning influencing factors, and should instead view them as hypotheses. We did not proceed to weigh any of these influencing factors. And yet, some of these factors are likely to have more of an impact than others. They would
Conclusion
The transition from pediatric to adult care for adolescents living with a chronic illness is a major public health challenge. A consensus on international recommendations – which would be based on data and/or scientific information and which would formulate a transition process – has not yet been reached. As a response to such a shortage of guidelines, our research aimed to review literature concerned with educational needs related to transition, and to identify factors influencing transitions.
Conflicts of interest
The authors have no conflicts of interest to disclose.
Funding source
No funding was secured for this study.
Financial disclosure
The remaining authors have no financial relationships relevant to this article to disclose.
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