Functioning and disability of children and adolescents in a vegetative state and a minimally conscious state:  identification of ICF-CY-relevant categories.
Children in a vegetative state (VS) and a minimally conscious state (MCS) experience severe limitations as a consequence of nervous system deficits and require consistent environmental support. However, disability in VS and MCS children has never been described following a model that accounts for the presence of the symptoms, limitations and the support required. Therefore, the aim of this paper is to describe the functioning and disability of children in VS and MCS using the International Classification of Functioning, Disability and Health - version for Children and Youth (ICF-CY). VS and MCS children were enrolled in postacute settings and at home. ICF-CY questionnaires were filled in using information available from clinical documentation, direct observation and from children's parents. ICF-CY categories were considered as relevant if used in at least one-third of the children. In total, 36 children and adolescents (22 in VS, 25 males) were enrolled. The majority developed VS and MCS following a nontraumatic event; the mean age was 114.8 months and the mean duration of condition was 50.1 months. A total of 94 ICF-CY categories were reported as relevant: 26 were from body functions, mostly from mental functions and mobility chapters; nine from body structures, 32 from activities and participation, mostly from learning, mobility and self-care chapters; and 27 from environmental factors. The use of ICF-CY enables to obtain a specific profile of functioning for each child that can be coupled with known issues, such as loss of brain functions and provision of life-sustaining interventions.
Department of Neurology, Public Health and Disability Unit, Scientific Directorate, Neurological Institute Carlo Besta IRCCS Foundation, Milan, Italy. leonardi@istituto-besta.it
Matilde
M
Leonardi
Davide
D
Sattin
Ambra M
AM
Giovannetti
Marco
M
Pagani
Sandra
S
Strazzer
Federica
F
Villa
Andrea
A
Martinuzzi
Mara
M
Buffoni
Enrico
E
Castelli
Maria Luisa
ML
Lispi
Antonio
A
Trabacca
Leonarda
L
Gennaro
Alberto
A
Raggi
D000293:Adolescent; D002648:Child; D003430:Cross-Sectional Studies; D004185:Disability Evaluation; D019988:Children with Disabilities / Q000145:classification* / Q000534:rehabilitation*; D005260:Female; D015600:Glasgow Coma Scale; D023261:Glasgow Outcome Scale; D006801:Humans; D038801:International Classification of Diseases; D008297:Male; D018458:Persistent Vegetative State / Q000503:physiopathology / Q000534:rehabilitation*; D011795:Surveys and Questionnaires