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A scoping review presenting a wide variety of research on paediatric and adolescent patients with Marfan syndrome.
- Source :
-
Acta Paediatrica . Sep2020, Vol. 109 Issue 9, p1758-1771. 14p. - Publication Year :
- 2020
-
Abstract
- <bold>Aim: </bold>The present study aimed to map and summarise the research on children, aged 0-18 years, with Marfan syndrome, identify research gaps and point to research agendas.<bold>Methods: </bold>A scoping review was systematically performed by searching multiple databases from January 1996 to April 2019. Primary studies presenting results on at least six individuals aged 0-18 years with Marfan syndrome, diagnosed according to the Ghent nosology, were selected.<bold>Results: </bold>From 2341 de-duplicated records, 92 papers were included, mapped and described. Their topics were diagnostics (12%), cardiovascular matters (50%), skeletal matters (22%), ocular matters (9%), other medical aspects (5%) and psychosocial perspectives (2%). Most studies were from Europe and North America and published between 1999 and 2019 in subject-specific or paediatric journals, while a few were published in genetics journals. All studies had quantitative designs, and very few were multicentre studies. Each study had six to 608 subjects for a total of approximately 5809.<bold>Conclusion: </bold>A wide range of research topics on adolescent and paediatric Marfan syndrome was found, but qualitative studies and a focus on psychosocial matters were lacking. Future investigations addressing noncardiovascular consequences and patient experiences are needed, as well as studies reaffirming or replicating existing intervention study results. [ABSTRACT FROM AUTHOR]
- Subjects :
- *MARFAN syndrome
*DATABASE searching
*NOSOLOGY
*SYSTEMATIC reviews
Subjects
Details
- Language :
- English
- ISSN :
- 08035253
- Volume :
- 109
- Issue :
- 9
- Database :
- Academic Search Index
- Journal :
- Acta Paediatrica
- Publication Type :
- Academic Journal
- Accession number :
- 145131893
- Full Text :
- https://doi.org/10.1111/apa.15186