Review of transition of care literature: Epidermolysis bullosa—A paradigm for patients with complex dermatologic conditions

Pérez, Victòria Aurora Ferrer; Morel, Kimberly D.; Garzon, María C.; Lauren, Christine T.; Levin, Laura E.

doi:10.1016/j.jaad.2020.06.083

Cited by 8 publications

(14 citation statements)

References 43 publications

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“…Based on data from transition work in other complex diseases and expert recommendations, discussion of transition for EB should begin in early adolescence, ideally by age 12. 5 Pediatric providers can support the transition by teaching adult providers about EB and facilitating collaboration between pediatric and adult multidisciplinary care teams. Further studies are needed to develop effective transition guidelines for this rare population.…”

Section: Discussionmentioning

confidence: 99%

“…Similarly, the transition is fraught with stress and logistical difficulties for EB patients and providers as few medical facilities have significant expertise in caring for adults with EB. The prevalence of EB is low, and information about EB‐specific transition practices has been reported in only two peer‐reviewed articles 4,5 . Additional information addressing the transition of care in EB is needed to begin to shape effective transition guidelines.…”

Section: Introductionmentioning

confidence: 99%

“…The prevalence of EB is low, and information about EBspecific transition practices has been reported in only two peerreviewed articles. 4,5 Additional information addressing the transition of care in EB is needed to begin to shape effective transition guidelines.…”

Section: Introductionmentioning

confidence: 99%

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Transition of care in patients with epidermolysis bullosa: A survey study

Han

Dykman

Lunos

et al. 2022

Pediatric Dermatology

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There are little published data on the transition of care in EB. We conducted a survey study recruiting EB patients from the Dystrophic EB Research Association (debra) website and centers caring for high numbers of EB patients in the United States and internationally from Sept 17, 2019 to Nov 3, 2021. The majority of participants had not discussed the transition of care with their healthcare providers, nor the health-

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Transition of care in patients with epidermolysis bullosa: A survey study

Han

Dykman

Lunos

et al. 2022

Pediatric Dermatology

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“…While transition is often described as a singular entity, it can be further classified into transfer versus transition. Transfer describes the “discrete event of hand‐off from a pediatric to adult provider.” 3 Transition, on the other hand, is “the purposeful planned movement from child‐centered care to an adult‐oriented health care system.” 3 This distinction provides a useful basis for outlining the transitional needs of various populations in pediatric dermatology.…”

Section: Transfer Versus Transitionmentioning

confidence: 99%

Barriers, goals, and enablers of transition of care in pediatric dermatology

Pope

Joseph

2022

Pediatric Dermatology

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Adolescent patients with complex skin disorders may require ongoing care for their conditions as they "age out" of the pediatric setting into adult care. Yet despite consensus from the Canadian Paediatric Society and American Academy of Pediatrics on the importance of dedicated transition programs for these patients, there is a scarcity of such programs worldwide, and no formal programs in Canada. This paper explores several barriers, goals, and potential enablers of transition programs in this discipline and proposes principles of transition versus transfer in the context of pediatric dermatology.

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“…However, in rare diseases, HCT is all the more challenging as there is a strong relationship between the patient and the physician due to long-term follow-up, and also it may be difficult to find physicians with a good knowledge of the disease in adult departments. A recent literature review of HCT in 2020 highlighted practical considerations to facilitate the development of programs for epidermolysis bullosa and few other dermatologic conditions [ 15 ], still there are no published data on HCT in rare chronic conditions such as SVMs. Although they do not threaten life as for HIV or diabetes, a successful transition care is necessary to ensure regular appointments during adulthood for optimal management.…”

Section: Introductionmentioning

confidence: 99%

Health care transition for patients with vascular malformations: a French multicenter cross-sectional study

Vermersch

Boccara

Chiavérini

et al. 2021

Orphanet J Rare Dis

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Background Health care transition (i.e., transition from pediatric to adult care) is challenging in chronic conditions but has been poorly studied in rare chronic skin diseases. We investigated the proportion of lost to follow-up among patients with superficial vascular malformations after health care transition. We also collected patients’ opinions. This prospective, multicenter, cross-sectional study was performed at 7 French hospitals. We included patients aged 19–25 years, who were followed for a superficial vascular malformation before age 16, and who had completed the transition period in 2020. Data were collected from medical records and a questionnaire was sent to included patients asking about the health care transition. Results Among the 90 patients included, 41 (46%) were lost to follow-up after health care transition period. The age at diagnosis was significantly higher for lost to follow-up than non- lost to follow-up patients. The lost to follow-up proportion was similar between patients who changed and did not change hospitals during the transition. Responses to the questionnaire were obtained for 47 of 90 patients (52.2% response rate); most were satisfied with their care (n = 31/36, 86.1%); however, a lack of psychological support was reported. Conclusions Health care transition is associated to a high rate of lost to follow-up. Early management seems associated to less lost to follow-up. Further studies are needed to better understand risk factors for a failed health care transition and its consequences.

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Review of transition of care literature: Epidermolysis bullosa—A paradigm for patients with complex dermatologic conditions

Cited by 8 publications

References 43 publications

Transition of care in patients with epidermolysis bullosa: A survey study

Transition of care in patients with epidermolysis bullosa: A survey study

Barriers, goals, and enablers of transition of care in pediatric dermatology

Health care transition for patients with vascular malformations: a French multicenter cross-sectional study

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