Literature DB >> 31248776

Scientific methodology of the development of the Guidelines for the Care of People with Spina Bifida: An initiative of the Spina Bifida Association.

Brad E Dicianno1, Patricia Beierwaltes2, Nienke Dosa3, Lisa Raman4, Jerome Chelliah5, Sara Struwe6, Juanita Panlener6, Timothy J Brei7.   

Abstract

BACKGROUND: We combined literature review and consensus-building methodologies to develop health care guidelines for people with Spina Bifida across the life span.
OBJECTIVE: The present paper describes the methodology used to update and expand this fourth edition of the Guidelines for the Care of People with Spina Bifida ("Guidelines"). This process was a fundamental initiative within the Spina Bifida Collaborative Care Network.
METHODS: Working groups were formed consisting of international, multidisciplinary teams of clinical and research experts. A systematic review of multiple databases was conducted. The consensus building methodology, One-Text Procedure, was followed to draft and revise documents. Each section of the Guidelines was presented by working group chairs at a face-to-face meeting using the Nominal Group Technique (NGT).
RESULTS: The Level 1 review resulted in 2449 abstracts being reviewed, and the Level 2 review resulted in 874 full text articles being archived for working groups. After working groups added and eliminated articles, a total of 803 manuscripts were included in the bibliography of the Guidelines. The final version of the Guidelines was then released in 2018.
CONCLUSIONS: Evidenced based-research and consensus methodologies were used to develop the fourth edition of the Guidelines. It is hoped that this document will guide not only health care providers, but also patients and families, so that people with Spina Bifida can have the best and most scientifically-based care and treatments throughout ever-longer and higher-quality lives. Published by Elsevier Inc.

Entities:  

Keywords:  Case manager; Lipomyelomeningocele; Meningocele; Meningomyelocele; Neural tube defects; Spina bifida; Spinal dysraphism

Mesh:

Year:  2019        PMID: 31248776     DOI: 10.1016/j.dhjo.2019.06.005

Source DB:  PubMed          Journal:  Disabil Health J        ISSN: 1876-7583            Impact factor:   2.554


  5 in total

1.  Philosophy of care delivery for spina bifida.

Authors:  Judy Thibadeau; William O Walker; Jonathan Castillo; Brad E Dicianno; Jonathan C Routh; Kathryn A Smith; Lijing Ouyang
Journal:  Disabil Health J       Date:  2019-12-20       Impact factor: 2.554

2.  Demystifying Spina Bifida Guidelines Using a Periodicity Schedule.

Authors:  Jessica Y Chaney; Asma A Taha; Joseph D Pinter
Journal:  Top Spinal Cord Inj Rehabil       Date:  2022-08-17

3.  Child, Parent, and Family Adjustment for Patients Followed in a Multidisciplinary Spina Bifida Clinic.

Authors:  Tess S Simpson; Leah A Grande; Jessica J Kenny; Pamela E Wilson; Robin L Peterson
Journal:  Top Spinal Cord Inj Rehabil       Date:  2022-08-17

4.  Latex allergy guidelines for people with spina bifida.

Authors:  Veronica Meneses; Sarah Parenti; Heather Burns; Richard Adams
Journal:  J Pediatr Rehabil Med       Date:  2020

5.  Development of a core outcome set for the orthopaedic management of spinal dysraphism : a study protocol.

Authors:  Donato G Leo; Gemma Green; Deborah M Eastwood; Anna Bridgens; Yael Gelfer
Journal:  Bone Jt Open       Date:  2022-01
  5 in total

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