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Mapping the evidence of multidimensional health approaches in treating individuals with Prader-Willi Syndrome: A
Normah Che Din1, Cila Umat2, Nor Haniza Abdul Wahat1
1Center for Rehabilitation & Special Needs Studies, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur, Federal Territory, Malaysia.
Insights
Prader-Willi Syndrome (PWS) management requires interdisciplinary care. This scoping review synthesizes evidence on successful interdisciplinary healthcare models for rare genetic disorders like PWS.
Area of Science:
- Genetics
- Rare Diseases
- Healthcare Management
Background:
- Prader-Willi Syndrome (PWS) is a rare genetic disorder affecting multiple body systems due to the absence of paternal genes on chromosome 15q11-q13.
- Effective management of PWS necessitates an interdisciplinary healthcare approach.
- Existing evidence on successful interdisciplinary models for rare diseases like PWS is limited.
Purpose of the Study:
- To conduct a scoping review to identify and synthesize evidence on interdisciplinary healthcare models for managing rare diseases.
- To explore the current landscape of interdisciplinary approaches in the context of Prader-Willi Syndrome.
Main Methods:
- The study employs a five-stage scoping review methodology following Arksey and O'Malley (2005).
- Searches will be conducted across major electronic databases (MEDLINE/PubMed, Scopus, Web of Science), grey literature, and reference lists.
- Data extraction and synthesis will be performed by three researchers based on a developed framework.
Main Results:
- This section is to be populated upon completion of the review.
- Findings will be aggregated and summarized for healthcare professionals and policymakers.
Conclusions:
- This scoping review protocol outlines a systematic approach to understanding interdisciplinary care for rare diseases.
- The findings will inform the development and implementation of effective management strategies for conditions like PWS.
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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