The UK guidelines for management and surveillance of Tuberous Sclerosis Complex

Sam Amin*, J. C. Kingswood, P. F. Bolton, F. Elmslie, D. P. Gale, C. Harland, S. R. Johnson, A. Parker, J. R. Sampson, M. Smeaton, Ingram Wright, F. J. O'Callaghan

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

6 Citations (Scopus)

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

About 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.

Original languageEnglish
Pages (from-to)171-182
Number of pages12
JournalQJM
Volume112
Issue number3
Early online date21 Sep 2018
DOIs
Publication statusPublished - 1 Mar 2019

Structured keywords

  • Brain and Behaviour

Keywords

  • Humans
  • Population Surveillance
  • Quality of Life
  • Surveys and Questionnaires
  • Tuberous Sclerosis/epidemiology
  • United Kingdom/epidemiology

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