Family satisfaction following spinal fusion in Rett syndrome
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This is an Author's Original Manuscript of an article published by Taylor & Francis in Developmental Neurorehabilitation on 11/04/2014 available online at <a href="http://www.tandfonline.com/10.3109/17518423.2014.898107">http://www.tandfonline.com/10.3109/17518423.2014.898107</a>
PURPOSE: 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.
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Marr, C.; Leonard, H.; Torode, I.; Downs, Jennepher (2015)Background: Rett syndrome is a severe neurodevelopmental disorder mainly affecting females and scoliosis is a common co-morbidity. Spinal fusion may be recommended if the scoliosis is progressive. This qualitative study ...
Downs, Jennepher; Forbes, D.; Johnson, M.; Leonard, H. (2016)Rett syndrome is a rare disorder caused by a mutation in the MECP2 gene. Those affected generally have severe functional impairments, and medical comorbidities such as scoliosis and poor growth are common. There is a ...
Downs, Jennepher; Torode, I.; Wong, K.; Ellaway, C.; Elliott, E.; Izatt, M.; Askin, G.; Mcphee, B.; Cundy, P.; Leonard, H. (2016)Aim: Scoliosis is a common comorbidity in Rett syndrome and spinal fusion may be recommended if severe. We investigated the impact of spinal fusion on survival and risk of severe lower respiratory tract infection in Rett ...