FH Studies Collaboration Lecturers at the European Society of Atherosclerosis Congress Pre- and Post- Event Questionnaires

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1 FH Studies Collaboration Lecturers at the European Society of Atherosclerosis Congress 2015 Pre- and Post- Event Questionnaires

2 The information on these slides is intended for educational purposes only. Nothing in these slides is intended to provide specific medical advice nor to indicate or endorse any treatment, action or refraining from action.

3 How do we raise public/clinician awareness to the contemporary burden of FH, and the consequences of under-diagnosis or under-treatment? What are the impediments to optimum management of FH patients, and how these may be overcome (either through consensus or through customised approaches)? How do we promote a uniform, evidence-based standard of care for FH, including genetic counselling and testing as well as timely referral for specialist advice? How do we encourage primary care physicians in particular to contribute actively to the management of subjects with FH? What lessons can be learnt from successes and failures of patient advocacy in eliciting change from different countries?

4 How might current patient advocacy groups share their experience and knowledge with countries who have yet to develop such organisations across EAS member countries and beyond? How can the EAS work together with different patient advocacy groups to enhance cohesion and coordination? Who are key stakeholders beyond the patient advocacy groups, academic community and industry that we need to work with and is their prior evidence of successful engagement with for instance governments (e.g. Uruguay)? How can patient advocacy groups help with the dissemination of new data and support the EAS FHSC?

5 FH Studies Collaboration: Symposium at EAS Sunday March 22, 2015, Scottish Exhibition & Conference Centre (SECC), Glasgow, UK

6 FH Studies Collaboration: Symposium at EAS Sunday March 22, 2015, Scottish Exhibition & Conference Centre (SECC), Glasgow, UK How common is FH and how is it managed in different parts of the world? What are the implications of the current clinical practice on cardiovascular disease? Why is high quality prospective data needed and what are the limitations of prior data? How to establish new registries of FH and how to get started. What are the ethical concerns and governance around data collection on FH? How can the FH registry be used locally to leverage public health policy in each region?

7 Pre-Symposium Questionnaire Post-Symposium Questionnaire

8

9 Cardiologist Cardiologist 8.6% Lipidologist 45.7% Internist 11.4% Diabetologist 5.7% Chemical Pathologist 4.3% Other healthcare professional 24.3% Lipidologist Internist Diabetologist Chemical Pathologist Other healthcare professional No: 31.0% Yes: 69.0%

10 Government hospital 16.9% Private hospital 7.0% University Hospital 53.5% I do only research 22.5% Government hospital University Hospital Private hospital I do only research No: 38.6% Yes: 61.4% No: 34.8% Yes: 65.2%

11 AR - Argentina AU - Australia BG - Bulgaria CZ - Czech Republic EE - Estonia FI - Finland GB - United Kingdom IN - India JP - Japan LV - Latvia NO - Norway PT - Portugal RS - Serbia SA - Saudi Arabia SK - Slovakia US - United States AT - Austria BE - Belgium BR - Brazil DE - Germany ES - Spain FR - France GR - Greece IT - Italy KR - Korea, South NL - Netherlands PL - Poland RO - Romania RU - Russia SE - Sweden UA - Ukraine ZA - South Africa

12

13 Cardiologist Cardiologist 26.1% Lipidologist 32.6% Internist 15.2% Diabetologist 0.0% Chemical Pathologist 10.9% Other healthcare professional 15.2% Lipidologist Internist Diabetologist Chemical Pathologist Other healthcare professional No: 28.9% Yes: 71.1%

14 Government hospital 17.8% Private hospital 4.4% University Hospital 64.4% I do only research 13.3% Government hospital University Hospital Private hospital I do only research No: 24.4% No: 32.6% Yes: 75.6% Yes: 67.4%

15 AR - Argentina CN - China DK - Denmark FR - France GR - Greece IE - Ireland IS - Iceland JP - Japan NL - Netherlands PL - Poland RU - Russia SE - Sweden UZ - Uzbekistan AU - Australia CZ - Czech Republic ES - Spain GB - United Kingdom HU - Hungary IR - Iran IT - Italy LV - Latvia NO - Norway PT - Portugal SA - Saudi Arabia TW - Taiwan ZA - South Africa

16

17 Not at all 1.5% Not at all 2.2% Somewhat 32.4% Somewhat 15.2% Very useful 66.2% Very useful 82.6%

18 Yes 16.4% Yes 7.0% No 83.6% No 93.0% No 5.9% No 2.2% Yes 94.1% Yes 97.8%

19 No 26.7% Yes 73.3% No 18.4% Yes 81.6% 10.3% Prevalence of FH varies between 1 in 200 to 1 in 500 worldwide 2.4% 0.0% FH tends to cluster within families 2.4% 3.4% 8.6% Affected individuals can be either homozygotes or heterozygotes for the underlying mutation FH is a substantially under-diagnosed and undertreated condition 0.0% 0.0% 77.6% All of the above 95.1%

20 Elevated LDL-C levels Elevated HDL-C levels Elevated triglyceride (TG) levels Low HDL-C and raised TG levels 1.7% 3.4% 1.7% 2.4% Elevated lipoprotein (a) [Lp(a)] levels 93.2% 97.6% HMG CoA reductase pathway 1.8% 5.5% 3.6% 2.4% 4.9% LDL receptor pathway Apolipoprotein-B pathway PCSK9 pathway None of the above 89.1% 92.7%

21 a. Tendon xanthomas b. Fulminant hepatic failure secondary to fatty infiltration of the liver 9.1% 1.8% 7.3% 14.6% 2.4% c. Premature cerebrovascular disease d. Premature coronary artery disease e. Both (b) and (d) 81.8% 82.9% 2.4% 4.9% 4.9% mmol/l 5.4% 10.7% 10.7% mmol/l mmol/l mmol/l None of the above 73.2% 87.8%

22 Total cholesterol levels LDL-C levels HDL-C levels TG levels 3.6% 3.6% 1.8% 9.8% Lp(a) levels 91.1% 90.2% 5.4% 8.9% 10.7% 48.2% All subjects with FH must be offered intensive lifestyle modification Lipid-lowering treatment should be commenced immediately after FH diagnosis in adults, regardless of their symptoms Initiation of lipid-lowering treatment should be considered around the age of 8-10 years among children For adults with FH, statin therapy should be commenced at the lowest possible dose and then rapidly increased to the maximum tolerated daily dose 7.3% 14.6% 4.9% 46.3% 26.8% None of the above 26.8%

23 1.8% 5.4% 14.6% 12.2% 30.4% 62.5% 73.2% 2-3 days 7 days 1-4 weeks 4-6 weeks 3 months Cascade screening 5.3% 5.3% 3.5% 2.4% 7.3% 2.4% Opportunistic screening Universal screening Any of the above None of the above 86.0% 87.8%

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