Title

Scientific Methodology of the Development of the Guidelines for the Care of People with Spina Bifida: An Initiative of the Spina Bifida Association

Authors

Brad Dicianno, Spina Bifida Association (Arlington, VA), University of Pittsburgh School of Medicine (Pittsburgh, PA)
Patricia Beierwaltes, Minnesota State University, MankatoFollow
Nienke Dosa, SUNY Upstate Medical University
Lisa Raman, Nursing Committee and Ecuational Initiatives, Worldwide Syringomyelia and Chiari Task Force, Spina Bifida Association Patient and Clinical Services, Lawrenceville, GA
Jerome Chelliah, Johns Hopkins Bloomberg School of Public Health
Sara Struwe, Spinal Bifida Association, Arlington, VA
Juanita Panlener, Spinal Bifida Association, Arlington, VA
Timothy J. Brei, Spinal Bifida Association, Arlington, VA, Seattle Children's Hospital and University of Washington School of Medicine

Document Type

Article

Publication Date

4-2020

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.

Department

School of Nursing

Print ISSN

1936-6574

Publication Title

Disability and Health Journal

Recommended Citation

Dicianno, B. E., Beierwaltes, P., Dosa, N., Raman, L., Chelliah, J., Struwe, S., ... & Brei, T. J. (2020). Scientific methodology of the development of the guidelines for the care of people with spina bifida: an initiative of the spina bifida association. Disability and Health Journal, 13(2), 100816. https://doi.org/10.1016/j.dhjo.2019.06.005

DOI

10.1016/j.dhjo.2019.06.005

Link to Publisher Version (DOI)

https://doi.org/10.1016/j.dhjo.2019.06.005

Publisher's Copyright and Source

Copyright © 2020 Elsevier, Inc.

Article published in Disability and Health Journal, volume 13, issue 2, article number 100816, April 2020. https://doi.org/10.1016/j.dhjo.2019.06.005