Clinical Changes of Patients with Cystic Fibrosis during Transition from Pediatric to Adult Care

Duguépéroux, I.; Tamalet, Aline; Sermet‐Gaudelus, Isabelle; Bourgeois, M. Le; Gérardin, M.; Desmazes-Dufeu, N.; Hubert, D.

doi:10.1016/j.jadohealth.2008.03.005

Cited by 88 publications

(90 citation statements)

References 28 publications

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“…One French study measured pulmonary function of young adults seen at 1 CF center 1 year before and 1 year after transfer to adult care, without using matched controls. 22 Similarly, they reported that health status remained relatively stable except for increased rate of hospitalization the year after transfer.…”

Section: Discussionmentioning

confidence: 95%

Health Outcomes Associated With Transition From Pediatric to Adult Cystic Fibrosis Care

Tuchman

Schwartz

2013

Pediatrics

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WHAT'S KNOWN ON THIS SUBJECT: Transition from pediatric to adult care is often reported to be unsuccessful. Little evidential research has examined the actual proportion of youth in pediatric versus adult care or impact on health status outcomes after transferring from pediatric to adult care.WHAT THIS STUDY ADDS: Our article extends the literature by providing health transition outcome data, something that has been recognized as a critical gap to developing evidence-based programming and health care transition policy. abstract BACKGROUND: Almost half of individuals who have cystic fibrosis (CF) are over 18 years old, thus safely transferring patients from pediatric to adult care is a priority. The purpose of this study is to compare youth transferred from pediatric to adult CF care versus those remaining in pediatric CF care and quantify the relationship between transfer status and health outcomes. RESULTS: Fifty-eight percent of patients remained in pediatric programs throughout the study period. The mean age at transfer to adult care was 21.2 (1.3) years. In the 2 years after transfer there was a less rapid decline in percent predicted forced expiratory volume in 1 second of 0.78 percentage points per year among transfer-positive patients compared with transfer-negative ones (95% confidence interval; 0.06-1.51); there were no other significant health related changes. CONCLUSIONS:The current study contradicts reports of other chronic childhood conditions, in which transfer between the pediatric and adult health system was associated with adverse health outcomes. Further research is needed to explore the long-term relationship between transition practices and health status outcomes to establish a systematic, evidencebased transition process. Pediatrics 2013;132:847-853

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Section: Discussionmentioning

confidence: 95%

Health Outcomes Associated With Transition From Pediatric to Adult Cystic Fibrosis Care

Tuchman

Schwartz

2013

Pediatrics

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“…Such visits reduced patients' fears and concerns about transition [18,34,36,51,53] and provided them with an opportunity to create relationships with providers in ACC, to get to know a familiar face before transfer, and improved transition outcomes [18,21,25,39,49,53]. Additionally, patients have recommended longer initial visits in ACC [38,43], or meeting with ACC providers more frequently than usual right after transfer because it can help create a relationship of confidence with new providers [54]. Similarly, patients have also suggested having a mentor such as a patient who has already experienced transition [24,27,30,36,37,51].…”

Section: Preparation Toward Transitionmentioning

confidence: 99%

Patients' Perspective on Factors That Facilitate Transition From Child-centered to Adult-centered Health Care: A Theory Integrated Metasummary of Quantitative and Qualitative Studies

Lugasi

Achille

Stevenson

2011

Journal of Adolescent Health

160

143

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“…Young people with chronic conditions are at risk of not fulfilling their potential as adults. 24,25 It is during adolescence that 'risky' health behaviours develop that can continue into adult life; such behaviours are reported to be more common in young people with chronic conditions compared with their healthy peers. 26 Using a psychosocial screen enables the adult physician to adapt their consultation to address both developmental aspects and health behaviours, and provides an opportunity to develop a rapport with the young person.…”

Section: Psychosocial Screening and Health Promotionmentioning

confidence: 99%

‘Everybody’s business’: transition and the role of adult physicians

2012

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-The outcome of transition from paediatric to adult care is often judged by what happens after transfer. Young people at the point of transfer are reported to have low levels of knowledge and independence. These observations could be interpreted in one of two ways: either that the transition process before transfer is inadequate or that the transition process needs to continue into young adulthood and therefore adult care. The second interpretation is further supported by brain development continuing into the third decade. There is also growing evidence for the effectiveness of young adult clinics in the process of transition. To optimise transition, adult physicians need not only to work with paediatricians to achieve continuity during transfer, but also to look critically at their service as to how it can be changed to meet the needs of young people. In addition, they need to develop knowledge, skills and attitudes to communicate effectively and address a young person's developmental and health needs.KEY WORDS: transition, adolescents, young adults, age appropriate care Introduction Transition has been described as 'a multi-faceted, active process that attends to the medical, psychosocial and educational/vocational needs of adolescents as they move from child-centred to adult-orientated care' . 1 There is evidence that optimal transition is not being achieved for a significant proportion of young people. The recent report from the Children and Young People's Health Outcome Forum (CYPHOF) states that transition services in the UK need to adopt 'an approach combining both a pull (from adult care) as well as a push (from paediatrics)' . 2 Adult physicians need to know how to 'pull' effectively to provide a service that meets the needs of young people transferring into their care (Fig 1). Transition does not end at transferTransition is a process and, although most literature focuses on the process up to transfer to adult services, it is after transfer that outcomes of transition are judged. Studies have shown that young people drift away from adult care and suffer deteriorating health. We suggest that it is time to focus on the transition process continuing beyond transfer, into young adulthood. This approach is further supported by evidence from neuroscience that the brain continues to develop into the third decade, with implications on thought processing and risk taking. 3 The extension of transition into young adulthood allows additional time for young people to become autonomous in their healthcare and achieve their full adult potential, the latter potentially delayed or disrupted by growing up with a chronic condition. Adult physicians need not only to aim for continuity of care with paediatric colleagues, but also to adapt their skills and services to meet the young person's changing needs. Working with paediatriciansA recent survey of paediatric and adult gastroenterologists found differing perceptions of whether young people were prepared at the time of transfer; the main areas of concern were la...

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Clinical Changes of Patients with Cystic Fibrosis during Transition from Pediatric to Adult Care

Cited by 88 publications

References 28 publications

Health Outcomes Associated With Transition From Pediatric to Adult Cystic Fibrosis Care

Health Outcomes Associated With Transition From Pediatric to Adult Cystic Fibrosis Care

Patients' Perspective on Factors That Facilitate Transition From Child-centered to Adult-centered Health Care: A Theory Integrated Metasummary of Quantitative and Qualitative Studies

‘Everybody’s business’: transition and the role of adult physicians

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