Umeå University's logo

umu.sePublications
Planned maintenance
A system upgrade is planned for 10/12-2024, at 12:00-13:00. During this time DiVA will be unavailable.
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Clinical Guidelines for Management of Bone Health in Rett Syndrome Based on Expert Consensus and Available Evidence
Show others and affiliations
2016 (English)In: PLOS ONE, E-ISSN 1932-6203, Vol. 11, no 2, article id e0146824Article in journal (Refereed) Published
Resource type
Text
Abstract [en]

ObjectivesWe developed clinical guidelines for the management of bone health in Rett syndrome through evidence review and the consensus of an expert panel of clinicians.

MethodsAn initial guidelines draft was created which included statements based upon literature review and 11 open-ended questions where literature was lacking. The international expert panel reviewed the draft online using a 2-stage Delphi process to reach consensus agreement. Items describe the clinical assessment of bone health, bone mineral density assessment and technique, and pharmacological and non-pharmacological interventions.

ResultsAgreement was reached on 39 statements which were formulated from 41 statements and 11 questions. When assessing bone health in Rett syndrome a comprehensive assessment of fracture history, mutation type, prescribed medication, pubertal development, mobility level, dietary intake and biochemical bone markers is recommended. A baseline densitometry assessment should be performed with accommodations made for size, with the frequency of surveillance determined according to individual risk. Lateral spine x-rays are also suggested. Increasing physical activity and initiating calcium and vitamin D supplementation when low are the first approaches to optimizing bone health in Rett syndrome. If individuals with Rett syndrome meet the ISCD criterion for osteoporosis in children, the use of bisphosphonates is recommended.

ConclusionA clinically significant history of fracture in combination with low bone densitometry findings is necessary for a diagnosis of osteoporosis. These evidence and consensus-based guidelines have the potential to improve bone health in those with Rett syndrome, reduce the frequency of fractures, and stimulate further research that aims to ameliorate the impacts of this serious comorbidity.

Place, publisher, year, edition, pages
2016. Vol. 11, no 2, article id e0146824
National Category
Pediatrics Physiotherapy
Identifiers
URN: urn:nbn:se:umu:diva-117381DOI: 10.1371/journal.pone.0146824ISI: 000369554000010Scopus ID: 2-s2.0-84959431493OAI: oai:DiVA.org:umu-117381DiVA, id: diva2:915067
Available from: 2016-03-29 Created: 2016-02-29 Last updated: 2023-03-24Bibliographically approved

Open Access in DiVA

fulltext(346 kB)336 downloads
File information
File name FULLTEXT01.pdfFile size 346 kBChecksum SHA-512
1658806c43fffdc21e82797e80b602adf5aa279abb423a5b09016908bace93917a683b5015cd2a146cd3e4426d4f4494063a080be1bd24d9d5de574eb4564a18
Type fulltextMimetype application/pdf

Other links

Publisher's full textScopus

Authority records

Larsson, Gunilla

Search in DiVA

By author/editor
Larsson, Gunilla
By organisation
Physiotherapy
In the same journal
PLOS ONE
PediatricsPhysiotherapy

Search outside of DiVA

GoogleGoogle Scholar
Total: 336 downloads
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

doi
urn-nbn

Altmetric score

doi
urn-nbn
Total: 241 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf