Objective:
The objective of this scoping review is to explore the evidence on psychosocial needs and related outcomes for adults with spina bifida.
Introduction:
Individuals with spinal bifida have complex service needs that can lead to the emergence of secondary conditions and health complications, which can result in serious, life-threatening illnesses. While much is known about the biological impact of spina bifida, there is a dearth of information regarding its psychological, and social impact.
Inclusion criteria:
This scoping review will include adults (18 years and over) with the following diagnoses: spina bifida, neural tube defects, tethered cord, myelodysplasia/myelodysplasias, diastematomyelia/diastematomyelias, meningomyelocele, terminal myelocystocele, fatty thickened filum, split cord malformation, lipomyelomeningocele. The literature reviewed will explore the range and trend of topics reported since data on adults with spinal bifida have been published to the most current time frame. This review will report on the psychosocial needs identified for adults with spinal bifida such as access to community-based services and supports needed to function independently. There will be no limits to the geographical location or setting (e.g. healthcare or community-based).
Methods:
The following databases will be accessed for this review: Ovid MEDLINE, Embase, Cochrane Library, CINAHL, Web of Science, PsycINFO and ERIC, with no date restrictions. Gray literature searches will be included as well. Reviews will be conducted independently by two reviewers and conflicts discussed with a third reviewer. The review narrative will be accompanied with findings presented in tabular format.
Correspondence: Cecily L. Betz, cbetz@chla.usc.edu
The authors declare no conflicts of interest.
© 2019 by Lippincott williams & Wilkins, Inc.