Family satisfaction following spinal fusion in Rett syndrome.
OBJECTIVE
We evaluated family satisfaction following spinal fusion in girls with Rett syndrome.


METHODS
Families participating in the population-based and longitudinal Australian Rett Syndrome Database whose daughter had undergone spinal fusion provided data on satisfaction overall, care processes and expected changes in health and function. Content analysis of responses to open-ended questions was conducted.


RESULTS
Families reported high levels of overall satisfaction and consistently high ratings in relation to surgical and ICU care. Outstanding clinical care and the development of strong partnerships with clinical staff were much appreciated by families, whereas poor information exchange and inconsistent care caused concerns.


CONCLUSIONS
Family satisfaction is an important outcome within a patient-centred quality of care framework. Our findings suggest strategies to inform the delivery of care in relation to spinal fusion for Rett syndrome and could also inform the hospital care of other children with disability and a high risk of hospitalization.
a Centre for Child Health Research, Telethon Institute for Child Health Research, The University of Western Australia , Perth , Australia .|b School of Physiotherapy and Exercise Science, Curtin University , Perth , Australia .
Jenny
J
Downs
c Department of Orthopaedics , Royal Children's Hospital , Melbourne , Australia , and.
Ian
I
Torode
d Western Sydney Genetics Program, Disciplines of Paediatrics and Child Health and Medical Genetics, The Children's Hospital at Westmead, The University of Sydney , Australia.
Carolyn
C
Ellaway
a Centre for Child Health Research, Telethon Institute for Child Health Research, The University of Western Australia , Perth , Australia .
Peter
P
Jacoby
a Centre for Child Health Research, Telethon Institute for Child Health Research, The University of Western Australia , Perth , Australia .
Catherine
C
Bunting
a Centre for Child Health Research, Telethon Institute for Child Health Research, The University of Western Australia , Perth , Australia .
Kingsley
K
Wong
d Western Sydney Genetics Program, Disciplines of Paediatrics and Child Health and Medical Genetics, The Children's Hospital at Westmead, The University of Sydney , Australia.
John
J
Christodoulou
a Centre for Child Health Research, Telethon Institute for Child Health Research, The University of Western Australia , Perth , Australia .
Helen
H
Leonard
D000293:Adolescent; D001315:Australia; D002648:Child; D015331:Cohort Studies; D051341:Dependent Ambulation; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D051783:Methyl-CpG-Binding Protein 2 / Q000235:genetics; D051346:Mobility Limitation; D010290:Parents; D017060:Patient Satisfaction; D018802:Patient-Centered Care; D015518:Rett Syndrome / Q000150:complications / Q000235:genetics / Q000503:physiopathology*; D012600:Scoliosis / Q000150:complications / Q000601:surgery*; D013123:Spinal Fusion / Q000379:methods*; D014910:Wheelchairs / Q000706:statistics & numerical data
C497392:MECP2 protein, human; D051783:Methyl-CpG-Binding Protein 2
Family satisfaction; Rett syndrome; scoliosis; spinal fusion,