Cargando…
Marfan syndrome in childhood: parents’ perspectives of the impact on daily functioning of children, parents and family; a qualitative study
BACKGROUND: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifes...
Autores principales: | Warnink-Kavelaars, Jessica, Beelen, Anita, Dekker, Sarah, Nollet, Frans, Menke, Leonie A., Engelbert, Raoul H. H. |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2019
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6661807/ https://www.ncbi.nlm.nih.gov/pubmed/31357961 http://dx.doi.org/10.1186/s12887-019-1612-6 |
Ejemplares similares
-
Parenting a child with Marfan syndrome: Distress and everyday problems
por: Warnink‐Kavelaars, Jessica, et al.
Publicado: (2020) -
Marfan syndrome in adolescence: adolescents’ perspectives on (physical) functioning, disability, contextual factors and support needs
por: Warnink-Kavelaars, Jessica, et al.
Publicado: (2019) -
Heritable Connective Tissue Disorders in Childhood: Increased Fatigue, Pain, Disability and Decreased General Health
por: Warnink-Kavelaars, Jessica, et al.
Publicado: (2021) -
Heritable connective tissue disorders in childhood: Decreased health‐related quality of life and mental health
por: Warnink‐Kavelaars, Jessica, et al.
Publicado: (2022) -
Effects of upper extremity surgery on activities and participation of children with cerebral palsy: a systematic review
por: Louwers, Annoek, et al.
Publicado: (2019)