Education and related support from medical specialists for Japanese patients with major skeletal dysplasias.
BACKGROUND
Skeletal dysplasias manifest various clinical symptoms. Age at onset, severity, and progression of symptoms differ even among individuals with the same diagnosis. Though necessary support in education is presumed to differ among patients with different disorders, few articles report on education in patients with skeletal dysplasias.


OBJECTIVE
To clarify what types of schools children with major skeletal dysplasias attend, what kind of support they needed at schools, and how the advice on such support was conveyed from medical specialists to schools.


METHODS
Questionnaire study on patients with achondroplasia or hypochondroplasia (A/HCH), and osteogenesis imperfecta (OI).


RESULTS
In A/HCH childhood locomotion ability was high and most patients had received general education, irrespective of their generation. Children with OI showed a lower level of locomotion ability; only about half of them had received general education. In selecting schools, the patients received advice from pediatricians, physiatrists, and orthopedic surgeons. The degree of necessity and content of support at the schools differed between A/HCH and OI. Remodeling of the lavatory, washbasin, and chair and support during swimming lessons were common in A/HCH patients. Support in school for OI patients was more frequent and included propelling wheelchairs, assisting in the use of the bathroom, and remodeling the lavatory. Most children were restricted from participating in physical education classes.


CONCLUSIONS
Locomotion ability and the necessary support at school differed between A/HCH and OI. Support and advice from medical specialists who recognize disability of patients with skeletal dysplasias may improve patients' participation and education in schools.
Department of Rehabilitation Medicine, The University of Tokyo Hospital, 7-3-1 Hongo, Bunkyo-ku, Tokyo 113-8655, Japan. Electronic address: hagan-reh@h.u-tokyo.ac.jp.
Nobuhiko
N
Haga
Keisuke
K
Kosaki
Kazuharu
K
Takikawa
Hiroshi
H
Tanaka
Keita
K
Okada
Yasuo
Y
Nakahara
Naoshi
N
Ogata
D000130:Achondroplasia; D000293:Adolescent; D000328:Adult; D000368:Aged; D001848:Bone Diseases, Developmental; D001842:Bone and Bones / Q000002:abnormalities; D002648:Child; D002662:Child Health Services; D006233:Persons with Disabilities; D004392:Dwarfism; D004493:Education; D004779:Environment Design; D015444:Exercise; D005260:Female; D006801:Humans; D007564:Japan; D017880:Limb Deformities, Congenital; D008141:Lordosis; D008297:Male; D008875:Middle Aged; D051346:Mobility Limitation; D009985:Orthopedics; D010013:Osteogenesis Imperfecta; D010372:Pediatrics; D010810:Physical and Rehabilitation Medicine; D012574:Schools; D013038:Specialization; D055815:Young Adult
Achondroplasia; Hypochondroplasia; Osteogenesis imperfecta; Special needs education