Family satisfaction following spinal fusion in Rett syndrome

Abstract

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.

• Family satisfaction
• Rett syndrome
• scoliosis
• spinal fusion,

Acknowledgments

We would like to acknowledge the contributions of families with a daughter with Rett syndrome since the establishment of the Australian Rett Syndrome Database in 1993.

Declaration of interest

Helen Leonard's current funding is from an NHMRC Senior Research Fellowship #572568. The current study was funded by an NHMRC project grant (#1004384). There are no potential conflicts of interest or commercial support for the authors. Major aspects of the Australian Rett Syndrome Research program have been funded by the National Institutes of Health (1 R01 HD43100-01A1) and a NHMRC program grant (#353514).