Young people with spina bifida: Transfer from paediatric to adult health care

Abstract

An expectation of health care for young people with disability is that quality coordinated care continues to be available as they pass from the paediatric to the adult health care system. While individual clinicians provide this service well, the widespread absence of coordinated multidisciplinary care for young people with spina bifida in the adult health care system is a major deficiency. This paper describes the planning and implementation that underpinned the transfer of 10 young people with spina bifida from a paediatric to an adult service. The range of structural, financial and 'cultural' barriers that need to be overcome before patients can be successfully transferred is highlighted; lessons learned from this model may serve to facilitate the development of other transfer services.

Effectiveness of the Interdisciplinary Ambulatory Rehabilitation Program in Persons with Spina Bifida

“…Similar to other cohorts, many participants (almost 50%) in this study were dependent on their carers for management and support [34]. The positive effects on various aspects of bladder/bowel and cognitive/behaviour function in this study are also reported in different SB subgroups and settings [3,4,13,14,35,36]. The improvements in bladder/bowel dysfunction, cognitive and other outcomes (QoL, coping strategies) were independent of study participants' demographic and clinical characteristics, which suggest the need to further engage pwSB in rehabilitation activities.…”

“…Although several studies in the paediatric population demonstrate effectiveness of a coordinated ID approach to management, this does not extend to adults and there is lack of comprehensive ambulatory care models [11][12][13]. The aim of this study, therefore, was to assess the effectiveness of a structured ID rehabilitation intervention to improve disability and participation in an adult SB population in an Australian community cohort.…”

Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida

“…Few studies have described the process of transition in their programs. 9,12 Moreover, few studies have assessed, empirically, the impact of this transition to adult-centered health care in terms of health care outcomes.2 The purpose of this pilot study is to evaluate the health care access and utilization in the Jacksonville, Florida, area of young adults with spina bifida (YASBs) after transfer to adult abbreviations JaxHATS = Jacksonville Health and Transition Services; QOL = quality of life; SB = spina bifida; SDC = Spinal Defects Clinic; UF = University of Florida; WCH = Wolfson Children's Hospital; YASB = young adult with spina bifida. submitted January 5, 2015. obJective The transition of the young adult with spina bifida (YASB) from pediatric to adult health care is considered a priority by organized pediatrics.…”

“…Few studies have described the process of transition in their programs. 9,12 Moreover, few studies have assessed, empirically, the impact of this transition to adult-centered health care in terms of health care outcomes.…”

“…10 Associated with this transition, however, are a number of obstacles, many of which entail the need for both coordinated and consistent access to primary and specialty health care. 12 There are several transition programs in the country aimed at providing such care to these individuals. In Jacksonville, Florida, the Spinal Defects Clinic (SDC) at Wolfson Children's Hospital (WCH) provides pediatric care for children with SB.…”