Knee-ankle-foot orthosis in children with duchenne muscular dystrophy: user views and adjustment.
BACKGROUND
The use of knee ankle foot orthoses (KAFOs) to prolong independent mobility is a widely used rehabilitation strategy for children with Duchenne muscular dystrophy (DMD).


OBJECTIVE
To explore views and adjustment of families with a child with Duchenne muscular dystrophy to the use of KAFOs.


METHODS
interviews with families of children aged 8-18 years with DMD; questionnaires on psychiatric adjustment (SDQ for children; GHQ for parents).


RESULTS
In total, 17 parents and 9 children took part. Families experienced the introduction of KAFOs as a signal for illness deterioration and a re-awakening of the feelings experienced at diagnosis. Nevertheless, the majority expressed a positive attitude and over two-thirds satisfaction with KAFOs use. High psychiatric risk was found in 2/17 children (12%; expected 10%) and 7/17 main carers (41%; expected 20-30%).


CONCLUSIONS
Most families were satisfied with KAFOs use, and its implementation was well tolerated especially by the children. However, mental distress was high in main carers who emphasized the importance of full preparation and support in this rehabilitation technique.
Garralda
M Elena
ME
Child and Adolescent Psychiatry, Imperial College London, St. Mary's Campus, Norfolk Place, London W2 1PG, UK. e.garralda@imperial.ac.uk
Muntoni
Francesco
F
Cunniff
Anna
A
Caneja
Angeles Diaz
AD
D000223:Adaptation, Psychological; D000293:Adolescent; D000842:Ankle; D017028:Caregivers / Q000523:psychology; D002648:Child; D003627:Data Interpretation, Statistical; D005260:Female; D005528:Foot; D006801:Humans; D007406:Interview, Psychological; D007717:Knee; D008297:Male; D001523:Mental Disorders / Q000453:epidemiology / Q000523:psychology; D020388:Muscular Dystrophy, Duchenne / Q000523:psychology / Q000534:rehabilitation*; D009989:Orthotic Devices; D010290:Parents / Q000523:psychology; D017060:Patient Satisfaction; D012306:Risk; D011795:Surveys and Questionnaires