S Amin1, J C Kingswood2, P F Bolton3, F Elmslie4, D P Gale5, C Harland6, S R Johnson7, A Parker8, J R Sampson9, M Smeaton10, I Wright11, F J O'Callaghan12. 1. University Hospitals Bristol, Upper Maudlin Street, Education Centre Level 6, Bristol, UK. 2. Brighton and Sussex University Hospitals, Eastern Rd, Brighton, East Sussex, UK. 3. King's College London, Institute of Psychiatry, London, UK. 4. St George's University Hospitals, Cranmer Terrace, London, UK. 5. UCL Centre for Nephrology, Royal Free Hospital, University College London, London, UK. 6. Epsom & St Helier Hospital, Wrythe Lane, Carshalton, Surrey, UK. 7. Division of Respiratory Medicine, Faculty of Medicine & Health Sciences, Nottingham University, Nottingham, UK. 8. Addenbrooke's Hospital, Hills Road, Cambridge, Cambridgeshire, UK. 9. Division of Cancer and Genetics, University of Cardiff, Cardiff, UK. 10. Tuberous Sclerosis Association, CAN Mezzanine, 32-36 Loman Street, London, UK. 11. University of Bristol, The Priory Road Complex, Priory Road, Bristol, Clifton, UK. 12. UCL GOS Institute of Child Health, 41 Clinical Neurosciences Section, 4th Floor Philip Ullman Wing South, London, UK.
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.
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.
Authors: Sam Amin; Andrew A Mallick; Hannah Edwards; Mario Cortina-Borja; Matthew Laugharne; Marcus Likeman; Finbar J K O'Callaghan Journal: EClinicalMedicine Date: 2021-01-14
Authors: Nicholas M P Annear; Richard E Appleton; Zahabiyah Bassi; Rupesh Bhatt; Patrick F Bolton; Pamela Crawford; Alex Crowe; Maureen Tossi; Frances Elmslie; Eric Finlay; Daniel P Gale; Alex Henderson; Elizabeth A Jones; Simon R Johnson; Shelagh Joss; Larissa Kerecuk; Graham Lipkin; Patrick J Morrison; Finbar J O'Callaghan; Jill Cadwgan; Albert C M Ong; Julian R Sampson; Charles Shepherd; J Chris Kingswood Journal: Front Neurol Date: 2019-11-06 Impact factor: 4.003