Views of Young People With Chronic Conditions on Transition From Pediatric to Adult Health Services

Abstract

Purpose-This study sought to identify and describe the views of young people with chronic conditions about the transition from pediatric to adult services.Methods-Q methodology was used to identify young people's views on transition. A set of 39 statements about transition was developed from an existing literature review and refined in consultation with local groups of young people. Statements were printed onto cards and a purposive sample of 44 young people with chronic health conditions was recruited, 41 remaining in the study. The young people were asked to sort the statement cards onto a Q-sort grid, according to their opinions from "strongly disagree" to "strongly agree." Factor analysis was used to identify shared points of view (patterns of similarity between individual's Q-sorts).Results-Four distinct views on transition were identified from young people: (1) "a laid-back view of transition;" (2) "anxiety about transition;" (3) "wanting independence and autonomy during transition;" and (4) "valuing social interaction with family, peers, and professionals to assist transition."Conclusions-Successful transition is likely to be influenced by how young people view the process. Discussing and understanding young people's views and preferences about transition should help clinicians and young people develop personalized planning for transition as a whole, * Address correspondence to: Jenni Hislop, M.Sc., Newcastle University, Institute of Health and Society, Newcastle upon Tyne, United Kingdom. jenni.hislop@newcastle.ac.uk (J. Hislop). Conflicts of Interest:The authors have no conflicts of interest or financial disclosures to report. Disclaimer:The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health. Europe PMC Funders GroupAuthor Manuscript J Adolesc Health. Author manuscript; available in PMC 2017 January 19. Europe PMC Funders Author ManuscriptsEurope PMC Funders Author Manuscripts and more specifically the point of transfer, leading to effective and efficient engagement with adult care. KeywordsTransition; Q methodology; Chronic conditions; Shared viewpointsTransition is defined as "the purposeful, planned process that addresses the medical, psychosocial, educational, and vocational needs of adolescents and young adults with chronic medical and physical conditions as they move from child-centred to adult-oriented health care systems" [1]. Transfer is the event when responsibility for health care is passed from a pediatric to an adult provider. Some young people find transition difficult [2]. Suboptimal or needs-inappropriate transition are well documented nationally and internationally [3][4][5][6][7] and include poorer long-term health, social, and educational outcomes [8][9][10][11]. To improve services, policy-makers, and clinicians need to understand young people's approaches to their transitional care and what they view as important. Much of the evidence about young people's views on transition is specialty or co...

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“…However, this transition may be met with resistance from patients and their parents as it can mean leaving multidisciplinary care clinics and instead receiving care from multiple adult specialists, who may not coordinate care or treatment decisions and may not have a specific knowledge or interest in treating SB. 8,[12][13][14][15] One study found that the mean number of specialists seen by an adult with SB was 3.8 and that 71% of adults with SB reported difficulty in accessing medical care. 16 Generally, transitioning to knowledgeable adult providers is appropriate and indicated for chronic childhood onset conditions, and there should be a planned, purposeful move to the new care provider or team.…”

“…Due to the range in ability levels and support systems among adults with SB, a one-size-fits-all model does not appropriately address all aspects of transitioning care. 14 Resistance to the transition from pediatric to adult care is multifaceted and may come from anyone involved in an individual's care. Transition may be delayed because of anxiety about the change in providers or a lack of initiative due to apathetic feelings regarding such changes.…”

“…Young adults who have made the transition describe feeling empowered to take responsibility in adult care settings. 12,14 Parents describe being surprised by their adult offspring's ability to step into the leading role, and they recognize the benefit in allowing this transition, despite their anxiety about their own loss of control. 18 Transitioning to new providers can be facilitated by a coordinated approach that involves the pediatric care team and the family.…”

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“…The hope is that when the pediatrician "officially" ceases being the primary care provider and the adult-focused care begins, the transition will be smooth and successful. [1][2][3] In their review article, Reichek and Danner-Koptik 1 summarize the transition process for childhood cancer survivors in this way: "the broad goal of transition is for the AYAs [adolescents and young adults] to achieve successful engagement in the adult system, to receive developmentally and medically appropriate care, and to facilitate their maximum potential and optimal quality of life. The process should be coordinated, family centered, and planned, so the AYA can mature into the knowledge of the transition to adult care and have supports in place to achieve the transition goal.…”

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“…There is, however, no “one-size fits all model of transition” (2). That approach may indeed be inappropriate, as it may not consider variation in the young people themselves, or their preferred style of engagement (3). Personalized planning for transition seems more appropriate, where young people’s preferences, combined with the knowledge health-care professionals have of their patient population, could lead to more effective and efficient engagement with adult care.…”