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The UK guidelines for management and surveillance of Tuberous Sclerosis Complex

Amin, S., Kingswood, J. C., Bolton, P. F., Elmslie, F., Gale, D. P., Harland, C., Johnson, S. R., Parker, A., Sampson, Julian R., Smeaton, M., Wright, I. and O'Callaghan, F. J. 2019. The UK guidelines for management and surveillance of Tuberous Sclerosis Complex. QJM: An International Journal of Medicine 112 (3) , pp. 171-182. 10.1093/qjmed/hcy215

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Background The severity of Tuberous Sclerosis Complex (TSC) can vary among affected individuals. Complications of TSC can be life threatening, with significant impact on patients’ quality of life. Management may vary dependent on treating physician, local and national policies, and funding. There are no current UK guidelines. We conducted a Delphi consensus process to reach agreed guidance for the management of patients with TSC in the UK. Methods We performed a literature search and reviewed the 2012/13 international guideline for TSC management. Based on these, a Delphi questionnaire was formed. We invited 86 clinicians and medical researchers to complete an online survey in two rounds. All the people surveyed were based in the UK. Clinicians were identified through the regional TSC clinics, and researchers were identified through publications. In round one, 55 questions were asked. In round two, 18 questions were asked in order to obtain consensus on the outstanding points that had been contentious in round one. The data was analysed by a core committee and subcommittees, which consisted of UK experts in different aspects of TSC. The Tuberous Sclerosis Association was consulted. Results 51 TSC experts took part in this survey. Two rounds were required to achieve consensus. The responders were neurologists, nephrologists, psychiatrist, psychologists, oncologists, general paediatricians, dermatologist, urologists, radiologists, clinical geneticists, neurosurgeons, respiratory and neurodisability clinicians. Conclusions These new UK guidelines for the management and surveillance of TSC patients provide consensus guidance for delivery of best clinical care to individuals with TSC in the UK.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Publisher: Oxford University Press
ISSN: 1460-2725
Date of First Compliant Deposit: 11 October 2018
Date of Acceptance: 21 September 2018
Last Modified: 20 Oct 2019 18:33

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