Fig. 1

The International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) diagram: Pediatric Marfan Syndrome 4–12 years; Parents’ perspectives of the impact on daily functioning of children with MFS. Parents’ meaningful concepts concerning their children with MFS were linked to ICF-CY. The ICF-CY uses an alphanumeric coding system. The letters used are “b” for Body Function, “s” for Body Structures, “d” for Activities/Participation and “e” for Environmental Factors and are followed by a numeric code that starts with the chapter number of one digit [23, 26, 27]