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Scoliosis and Rett syndrome
Author(s) -
KOOP STEVEN E
Publication year - 2011
Publication title -
developmental medicine and child neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.658
H-Index - 143
eISSN - 1469-8749
pISSN - 0012-1622
DOI - 10.1111/j.1469-8749.2011.03960.x
Subject(s) - rett syndrome , scoliosis , mecp2 , cerebral palsy , medicine , pediatrics , psychology , physical medicine and rehabilitation , surgery , biology , genetics , phenotype , gene
dren with spina bifida have long expressed concern that once their children are ineligible for services in the pediatric system, they are very much left to their own devices in terms of securing, for example, health care, independent living support, and employment. Successful transition from life as a child to that of an adult requires a life course approach and plan which can be difficult in light of the fact that some individuals with spina bifida have a cognitive profile that may challenge such planning. Much work remains to be done on realizing the concept of transition for those with spina bifida; moving from life as a child with significant care needs to that of an adult who can meet those needs, as well as meeting other psychosocial needs, as independently as possible. Continued systematic exploration of this area is greatly needed so that recommendations and policies can be based on empirical evidence. By empirically identifying modifiable facilitators and barriers to successful transitioning for individuals with spina bifida and other complex conditions, we will be able to help in delineating, at an early stage, who may require specific assistance, what type of assistance, and when to provide the assistance. Bellin et al.’s article is encouraging in that it not only addresses relevant topics to transition, such as self-management and employment, but it also takes into consideration other variables that may greatly impact on the trajectory of young adults with spina bifida, such as sex and level of lesion. Such information will prove very useful once we more actively start to implement research findings into practice.