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Mapping the evidence of multidimensional health approaches in treating individuals with Prader–Willi Syndrome: A scoping review protocol

INTRODUCTION: Prader–Willi Syndrome (PWS) is one of the rare diseases involving genetics and affects various body systems. The disease is known due to the absence of paternal genes on chromosome 15q11-q13. Multisystem complex conditions require interdisciplinary healthcare treatment. However, to the...

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Autores principales: Che Din, Normah, Umat, Cila, Abdul Wahat, Nor Haniza, Talib, Azhar Bin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8756288/
https://www.ncbi.nlm.nih.gov/pubmed/35022164
http://dx.doi.org/10.1136/bmjopen-2020-047638
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author Che Din, Normah
Umat, Cila
Abdul Wahat, Nor Haniza
Talib, Azhar Bin
author_facet Che Din, Normah
Umat, Cila
Abdul Wahat, Nor Haniza
Talib, Azhar Bin
author_sort Che Din, Normah
collection PubMed
description INTRODUCTION: Prader–Willi Syndrome (PWS) is one of the rare diseases involving genetics and affects various body systems. The disease is known due to the absence of paternal genes on chromosome 15q11-q13. Multisystem complex conditions require interdisciplinary healthcare treatment. However, to the best of our knowledge, there is little evidence of an established successful model of an interdisciplinary approach in managing rare diseases like PWS. METHODS AND ANALYSIS: The scoping review process follows the five-staged Arksey and O’Malley (2005) methodology framework excluding the optional consultation stage (stage 6): the definition of the research questions (step 1); the eligibility criteria and search strategy are defined (stage 2); the study selection process based on the eligibility criteria identified will follow (stage 3); a framework developed for this review will then inform the extraction and charting of data from the included studies (step 4) and results will be aggregated and summarised with criteria relevant for health professionals and policymakers (stage 5). We will search for electronic databases (MEDLINE/PubMed, Scopus, Web of Science), grey literature sources and critical studies’ reference lists to determine the appropriate inclusion criteria. Three researchers will review all abstracts and full-text studies for inclusion. ETHICS AND DISSEMINATION: This scoping review methodology does not require ethical approval since it aims to synthesise information from available publications. A scoping review article will be submitted for publication to a scientific journal following this protocol.
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spelling pubmed-87562882022-01-26 Mapping the evidence of multidimensional health approaches in treating individuals with Prader–Willi Syndrome: A scoping review protocol Che Din, Normah Umat, Cila Abdul Wahat, Nor Haniza Talib, Azhar Bin BMJ Open Health Services Research INTRODUCTION: Prader–Willi Syndrome (PWS) is one of the rare diseases involving genetics and affects various body systems. The disease is known due to the absence of paternal genes on chromosome 15q11-q13. Multisystem complex conditions require interdisciplinary healthcare treatment. However, to the best of our knowledge, there is little evidence of an established successful model of an interdisciplinary approach in managing rare diseases like PWS. METHODS AND ANALYSIS: The scoping review process follows the five-staged Arksey and O’Malley (2005) methodology framework excluding the optional consultation stage (stage 6): the definition of the research questions (step 1); the eligibility criteria and search strategy are defined (stage 2); the study selection process based on the eligibility criteria identified will follow (stage 3); a framework developed for this review will then inform the extraction and charting of data from the included studies (step 4) and results will be aggregated and summarised with criteria relevant for health professionals and policymakers (stage 5). We will search for electronic databases (MEDLINE/PubMed, Scopus, Web of Science), grey literature sources and critical studies’ reference lists to determine the appropriate inclusion criteria. Three researchers will review all abstracts and full-text studies for inclusion. ETHICS AND DISSEMINATION: This scoping review methodology does not require ethical approval since it aims to synthesise information from available publications. A scoping review article will be submitted for publication to a scientific journal following this protocol. BMJ Publishing Group 2022-01-12 /pmc/articles/PMC8756288/ /pubmed/35022164 http://dx.doi.org/10.1136/bmjopen-2020-047638 Text en © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Health Services Research
Che Din, Normah
Umat, Cila
Abdul Wahat, Nor Haniza
Talib, Azhar Bin
Mapping the evidence of multidimensional health approaches in treating individuals with Prader–Willi Syndrome: A scoping review protocol
title Mapping the evidence of multidimensional health approaches in treating individuals with Prader–Willi Syndrome: A scoping review protocol
title_full Mapping the evidence of multidimensional health approaches in treating individuals with Prader–Willi Syndrome: A scoping review protocol
title_fullStr Mapping the evidence of multidimensional health approaches in treating individuals with Prader–Willi Syndrome: A scoping review protocol
title_full_unstemmed Mapping the evidence of multidimensional health approaches in treating individuals with Prader–Willi Syndrome: A scoping review protocol
title_short Mapping the evidence of multidimensional health approaches in treating individuals with Prader–Willi Syndrome: A scoping review protocol
title_sort mapping the evidence of multidimensional health approaches in treating individuals with prader–willi syndrome: a scoping review protocol
topic Health Services Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8756288/
https://www.ncbi.nlm.nih.gov/pubmed/35022164
http://dx.doi.org/10.1136/bmjopen-2020-047638
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