What is Tuberous Sclerosis Complex?

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Treatment of patients with Tuberous Sclerosis Complex in Denmark- results from a survey amongst the patient population- a case study Sarah Lysdal

Rare Diseases 20-09- 2016 What is Tuberous Sclerosis Complex?

1 Treatment of patients with Tuberous Sclerosis Complex in Denmark- results from a survey amongst the patient population- a case study Sarah Lysdal Krøtel, Department of Management, Aarhus University Liselotte Wesley Andersen, Danish Tuberous Sclerosis Association 4th Nordic Conference on Rare Diseases What is Tuberous Sclerosis Complex? Rare genetic disorder Form cancerous -like benign tumors through out the body in multiple organs -brainkidneys-lungs Often causes developmental disturbance and mental retardation leading to challenging behaviour Prevalence of 1:7000 1

2 Background - Tuberous Sclerosis is not mentioned in the national Speciality Plan - are treated at Centre for Rare Diseases, Skejby Hospital, Jutland and at Centre for Rare Diseases at, Copenhagen - Where are the adult population being treated and how is their treatment coordinated? - who is co-ordinating? Project «Life with Tuberous Sclerosis Complex» Aim: - To disclose where patients with Tuberous Sclerosis are treated - Where adult patients are in the Danish healthcare system 2

3 «Life with Tuberous Sclerosis Complex» To identify -Who should co-operate - Who should co-ordinate - How we can establish a process from childhood to adulthood that makes patients experience a coordinated treatment We have to examine - Where the patients are - Where they are treated - How the treatment is co-ordinated Questionnaire were distributed - to members of the Danish Tuberous Sclerosis Association - to departments at hospitals where TS patients are expected to be treated Numbers of respondents: 26 adults 37 children Total 63 Selection bias: Members of the association-patients that are most seriously affected 3

4 Housing % Together with family Institution Other Living alone Together Together with spouse with familie 2 1 Institution Group home Day care and education Other 11% Other education Special school 19% Public school Special kindergarten or nusery 19% Normal kindergarten or nusery

5 Education and employment Educational background (highest education) Employment (mutiple answers) Univerisity degree (master) 12% Univerisity degree (bachelor) 14 Skilled worker High School Special education (STU) Public school (exam) Public school (without exam) Special school 12% 1 4 Number of patients Early retirement Treatment Number of physicians involved in coordinating TSC % % 11% More than 5 None More than 5 5

6 Treatment Proportion of patients that attend different controls 100 % 90 % 80 % 70 % 60 % 50 % 40 % 30 % 20 % 10 % 0 % 9 32% % 59% % % 7 No Yes % Treatment- where? Kidney Scan (N=32) Regional Hospital Herning 1 Roskilde Hospital 1 2 Randers Hospital Horsens Sygehus Odense University Hospital Næstved Hospital Kolding Hospital Herlev Hospital 1 1 Hillerød Hospital Herlev Hospital Glostrup Hospital 1 Aarhus University 3 Aarhus University Hospital hospitals 8 hospitals 3 overlapping hospitals 6

7 Treatment- where? Brain Scan (N=31) (N=15) Hvidovre Hospital Odense University Hospital Næstved Hospital Nykøbing Falster Hospital Kolding Hospital Herlev Hospital Aarhus University Hospital % Roskilde Hospital Hvidovre Hospital Horsens Hospital Hillerød Hospital Herlev Hospital Glostrup Hospital Aarhus University hospital hospitals 9 hospitals 5 overlapping hospitals Treatment- where? Epilepsy (N=23) (N=18) 1 Roskilde Hospital Glostrup Hospital Odense University Hospital 1 Landssygehuset (Faroe Islands) Hillerød Hospital 22% Kolding Hospital Epilepsy Hospital Filadelfia 39% Epilepsy Hospital Filadelfia 4 11% Aarhus University Hospital 1 Aarhus University Hospital 11% hospitals 7 hospitals 3 overlapping hospitals 7

8 Treatment Co-ordination of treatment % 1 Treatment satisfaction-conclusion The overall treatment of the childs TSC 32% 4 2 The interdisciplinary coordination across physicians in relation to TSC % 1 0 % 10 % 20 % 30 % 40 % 50 % 60 % 70 % 80 % 90 % 100 % Very dissatisfied Dissatisfied Neither or Satisfied Very Satisfied The overall treatment of your TSC 4 3 9% The interdisciplinary coordination across physicians in relation to TSC % 10 % 20 % 30 % 40 % 50 % 60 % 70 % 80 % 90 % 100 % 8

9 Collaboration and support BIG THANKS TO Professor John R. Østergaard, Centre for Rare Diseases, Aarhus University Hospital, Denmark -inspiration, preparing questionnaire etc. Novartis for financial support Thank you for your attention 9

Preface. Hvidovre, d. 12. September, Anders Troelsen, Michael Brix, Kirill Gromov

Preface. Hvidovre, d. 12. September, Anders Troelsen, Michael Brix, Kirill Gromov Preface The annual report from the Danish Fracture Database (DFDB) 215 is the third of its kind. It contains data based on over 4. fracture related surgeries, of which over 3. are primary surgeries registered