TY - JOUR
T1 - The UK guidelines for management and surveillance of Tuberous Sclerosis Complex
AU - Amin, Sam
AU - Kingswood, J. C.
AU - Bolton, P. F.
AU - Elmslie, F.
AU - Gale, D. P.
AU - Harland, C.
AU - Johnson, S. R.
AU - Parker, A.
AU - Sampson, J. R.
AU - Smeaton, M.
AU - Wright, Ingram
AU - O'Callaghan, F. J.
PY - 2019/3/1
Y1 - 2019/3/1
N2 - BackgroundThe
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.MethodsWe
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.ResultsAbout
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.ConclusionsThese
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.
AB - BackgroundThe
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.MethodsWe
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.ResultsAbout
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.ConclusionsThese
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.
KW - Humans
KW - Population Surveillance
KW - Quality of Life
KW - Surveys and Questionnaires
KW - Tuberous Sclerosis/epidemiology
KW - United Kingdom/epidemiology
UR - http://www.scopus.com/inward/record.url?scp=85062262800&partnerID=8YFLogxK
U2 - 10.1093/qjmed/hcy215
DO - 10.1093/qjmed/hcy215
M3 - Article (Academic Journal)
C2 - 30247655
AN - SCOPUS:85062262800
VL - 112
SP - 171
EP - 182
JO - QJM
JF - QJM
SN - 1460-2725
IS - 3
ER -