Review article
Factors influencing the transition from pediatric to adult care: A scoping review of the literature to conceptualize a relevant education program

https://doi.org/10.1016/j.pec.2017.05.024Get rights and content

Highlights

  • An integrative framework of factors influencing transition is proposed.

  • Conceptualization of patient education program for transition is now possible.

  • Psychosocial dimensions are not enough included on the research of transition.

  • Patient education program for transition could include a support to identity development.

Abstract

Objective

To give a comprehensive overview of the factors that influence the transition from pediatric services to adult care, and to conceptualize a relevant education program.

Method

An evaluation grid was used to analyze the literature and classify factors depending on whether they were related to the patients, to the health care organization, to health care personnel, to the interaction between medical staff and patient, or to the illness and its treatment.

Results

We based our analysis on a selection of 20 publications. The following factors were identified and classified in an integrative framework: self-management skills, trust in adult care, the feeling of self-efficacy, social support, the patient’s gender and social position, the trust between child carers and adult carers, interdisciplinary cooperation, and the medical staff’s consideration of the patient’s projects.

Conclusions and practice implications

The current analysis makes it possible to formulate educational aims and to design a way of integrating them to a transition plan. However, the collected studies mainly focus on knowledge of the illness, on treatment, and on the health care system. Psychosocial dimensions at play at the time of the transition – such as identity development – are not sufficiently explored in the research.

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.

References (55)

  • M. van der Toorn et al.

    Needs of children with a chronic bladder in preparation for transfer to adult care

    J. Pediatr. Urol.

    (2013)
  • W. Gibson-Scipio et al.

    Asthma self-management goals, beliefs and behaviors of urban african american adolescents prior to transitioning to adult health care

    J. Pediatr. Nurs.

    (2015)
  • K. Javalkar et al.

    Ecological factors predict transition readiness/self-management in youth with chronic conditions

    J. Adolesc. Health

    (2016)
  • A. van Staa et al.

    Young adults’ experiences and satisfaction with the transfer of care

    J. Adolesc. Health

    (2014)
  • S. Lulu et al.

    Treatment adherence and transitioning youth in pediatric multiple sclerosis

    Multiple Scler. Relat. Disord.

    (2014)
  • P.P. Gilliam et al.

    Transition of adolescents with HIV to adult care: characteristics and current practices of the adolescent trials network for HIV/AIDS interventions

    J. Assoc. Nurses AIDS Care

    (2011)
  • J.-C. Suris et al.

    Key elements for, and indicators of, a successful transition: an international Delphi study

    J. Adolesc. Health

    (2015)
  • J.N.T. Sattoe et al.

    Self-management interventions for young people with chronic conditions: a systematic overview

    Patient Educ. Couns.

    (2015)
  • K. Luyckx et al.

    Identity development, coping, and adjustment in emerging adults with a chronic illness: the sample case of type 1 diabetes

    J. Adolesc. Health

    (2008)
  • S. Adams et al.

    Medication, Chronic illness and identity: the perspective of people with asthma

    Soc. Sci. Med.

    (1997)
  • P.A. Michaud et al.

    The Adolescent with a Chronic Condition. Epidemiology, Developmental Issues and Health Care Provision. WHO Discussion Papers on Adolescence

    (2007)
  • R. Crowley et al.

    Improving the transition between paediatric and adult healthcare: a systematic review

    Arch. Dis. Child.

    (2011)
  • C.L. Betz et al.

    Self-reported health care self-care needs of transition-age youth: a pilot study

    Compr. Pediatr. Nurs.

    (2003)
  • G.S. Sawicki et al.

    Ready, set, stop: mismatch between self-care beliefs, transition readiness skills, and transition planning among adolescents, young adults, and parents

    Clin. Pediatr. (Phila.)

    (2014)
  • A. Westwood et al.

    Transition from child- to adult-orientated care for children with long-term health conditions: a process, not an event

    S. Afr. Med. J.

    (2014)
  • A.R. Watson

    Non-compliance and transfer from paediatric to adult transplant unit

    Pediatr. Nephrol.

    (2000)
  • D. Pacaud et al.

    Exploring a black hole: transition from paediatric to adult care services for youth with diabetes

    Paediatr. Child Health

    (2005)
  • Cited by (0)

    View full text