The UK guidelines for management and surveillance of Tuberous Sclerosis Complex
Autor: | M. Smeaton, Patrick Bolton, Ingram Wright, Julian R. Sampson, J. C. Kingswood, Alasdair Parker, Sam Amin, Daniel P. Gale, Frances Elmslie, Finbar O'Callaghan, C. Harland, Simon R. Johnson |
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Rok vydání: | 2018 |
Předmět: |
congenital
hereditary and neonatal diseases and abnormalities medicine.medical_specialty business.industry General Medicine Guideline medicine.disease United Kingdom nervous system diseases 03 medical and health sciences Tuberous sclerosis 0302 clinical medicine Quality of life (healthcare) Tuberous Sclerosis Population Surveillance Surveys and Questionnaires Expert opinion Family medicine Quality of Life medicine Humans 030212 general & internal medicine Clinical care business |
Zdroj: | QJM: An International Journal of Medicine. 112:171-182 |
ISSN: | 1460-2393 1460-2725 |
DOI: | 10.1093/qjmed/hcy215 |
Popis: | Background\ud 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.\ud \ud Methods\ud 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.\ud \ud Results\ud 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.\ud \ud Conclusions\ud 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. |
Databáze: | OpenAIRE |
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