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The UK guidelines for management and surveillance of Tuberous Sclerosis Complex.

Amin, S; Kingswood, JC; Bolton, PF; Elmslie, F; Gale, DP; Harland, C; Johnson, SR; Parker, A; Sampson, JR; Smeaton, M; et al. Amin, S; Kingswood, JC; Bolton, PF; Elmslie, F; Gale, DP; Harland, C; Johnson, SR; Parker, A; Sampson, JR; Smeaton, M; Wright, I; O'Callaghan, FJ (2019) The UK guidelines for management and surveillance of Tuberous Sclerosis Complex. QJM, 112 (3). pp. 171-182. ISSN 1460-2393 https://doi.org/10.1093/qjmed/hcy215
SGUL Authors: Elmslie, Frances

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Abstract

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
Additional Information: This is a pre-copyedited, author-produced version of an article accepted for publication in QJM: An International Journal of Medicine following peer review. The version of record S Amin, J C Kingswood, P F Bolton, F Elmslie, D P Gale, C Harland, S R Johnson, A Parker, J R Sampson, M Smeaton, I Wright, F J O’Callaghan; The UK guidelines for management and surveillance of Tuberous Sclerosis Complex, QJM: An International Journal of Medicine, Volume 112, Issue 3, 1 March 2019, Pages 171–182 is available online at: https://doi.org/10.1093/qjmed/hcy215
Keywords: 11 Medical And Health Sciences, General & Internal Medicine
Journal or Publication Title: QJM
ISSN: 1460-2393
Language: eng
Dates:
DateEvent
1 March 2019Published
21 September 2018Published Online
17 September 2018Accepted
Publisher License: Publisher's own licence
PubMed ID: 30247655
Go to PubMed abstract
URI: https://openaccess.sgul.ac.uk/id/eprint/110218
Publisher's version: https://doi.org/10.1093/qjmed/hcy215

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