The Euro Headache Index 2012

The Euro Headache Index 2012 Webinar presentation, March 13 2012 Arne Björnberg, PhD Johan Hjertqvist, LLH info@healthpowerhouse.com

HCP USP:s HCP Indexes build on distinctive HCP methods for performance measurement and benchmarking, to support consumer empowerment and influence HCP works together with the European Commission and national governments as well as the medical profession HCP indexes are produced on unconditional development grants The grant from the European Headache Alliance, making possible the Headache Index, is gratefully acknowledged. 2

HCP Indexes Europe: Euro Health Consumer Index 2005, 2006, 2007, 2008, 2009, 2012 Euro Consumer Heart Index 2008 Euro Diabetes Care Index 2008 Euro HIV Index 2009 Nordic COPD Index 2010 Euro Headache Index 2012 Euro Hepatitis Index 2012 Sweden, other: Health Consumer Index 2004, 2005, 2006 Diabetes Care Index 2006, 2007, 2008 Breast Cancer Index 2006 Vaccination Index 2007, 2008 Renal Care Index 2007, 2008 Smoke Cessation Index 2008 COPD Index 2009 Advanced Home Care Index 2010 The Best Hospital in Sweden 2011 Euro-Canada Health Consumer Index Canada 2008, 2009 Provincial Health Consumer Index Canada 2008, 2009 3

HCP Indices Characteristics Euro Headache Index 2012 Overall picture of healthcare systems seen from the customer/patient s point of view (hard and soft data) Concentrates on indicators reflecting properties and performance of healthcare systems not public health Do present a ranking list

Headache in Europe Migraine and Tension Type Headache (TTH) can cause substantial levels of disability, not only to patients and their families but also to society as a whole owing to its high prevalence in the general population. Up to 1 adult in 25 has headache nearly every day 16 % of all women and 8 % of all men have regular migraine attacks Migraine costs alone were estimated in EU-25, Norway, Iceland and Switzerland at EUR 27 billion (2004, European Brain Council) For headache, there is no routinely available diagnostic which gives hard data the main diagnostic tool remains asking questions to the patient

Although headache/migraine can be severely handicapping, the conditions are frequently bagatellised (example from study made for national government body of large EU state) 6

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Sub-discipline Scores No country scores All Green on a sub-discipline (except France on sub-discipline 2.)

Maximum Sub-disciplines Top countries Score score 1. Patient rights and Switzerland, UK 185 200 information & e-health 2. Professional awareness and education 3. Access to healthcare Austria, Bulgaria, Germany, Slovakia 4. Medication /Treatment Denmark, The Netherlands, UK 5. Prevention Austria, The Netherlands France 150 150 204 250 260 300 92 100 10

Headache Index Conclusions Euro Headache Index 2012 The Netherlands and Germany seem to have seriously tackled the issues of headache and migraine in their countries and have worked out the best way to provide care provision to its sufferers. Italy stands out for high number of headache centers. Headache center or headache clinic or headache specialist is defined very differently in and among European countries. In many countries, headache sufferers would normally see a neurologist, who oftentimes is too busy with more serious illnesses or those that bring in money to the hospitals. Access to (subsidy of) headache medication varies greatly, mainly in countries where drug subsidies vary depending on the diagnosis. Countries that score high on the Happy-Life-Years indicator also use less medication(!) 11

Full Headache Index Report available on: www.healthpowerhouse.com/ehi2012 Thank you! 12

METHODOLOGY SLIDES FOR PERSISTENT VIEWERS 13

Sources: "any source that can provide reasonably solid data" Indata not symmetric for all countries multiple data sources on the same indicator frequently used. CUTS: "Comprehensive Uniform Trustworthy Sources" when we find them "Objective hard facts": WHO, OECD or other statistics, decided policies, regulations, legislation Soft data: interviews, patient surveys Expert Reference Panel discussions Survey to Patient Organisations covering 11 indicators commissioned from Patient View: 251 responses 14

Country scores in three grades under each indicator: 3 (green): good (i) 2 (amber): intermediate (l) n.ap. = 2 1 (red): not-so-good (h); "n.a." = 1 Total score calculated as Scoring system % of maximum score under each sub-discipline many indicators in one Sub-discipline does not give added weight! This % multiplied by weight coefficient Weight coefficients set to make total weight = 1000 Max score: 1000 Minimum score: 333

HCP Index projects supported by external expert panels Two core tasks: Assist in the design and selection of indicators Conduct a credibility test of the Index Dr Emile Couturier Mrs Audrey Craven Dr Rigmor Jensen Dr Michel Lanteri-Minet Dr Diana Obelieniene Dr Jes Olesen Dr Koen Paemeleire Dr Cristina Tassorelli Dr Maria Magdalena Wysocka-B kowska Contributors in the Expert Panel work for the Headache Index Headache Specialist, EHF Country Representative European Headache Alliance, Ireland Danish Headache Center, Department of Neurology, Glostrup Hospital, Denmark Département d'evaluation et Traitement de la Douleur,CHU de Nice - Hôpital Pasteur, France Head of Neurological Department of Kaunas Medical University, Lithuania Department of Neurology, University of Copenhagen, Glostrup Hospital, Denmark Headache Specialist, EHF Country Representative National Neurological Institute C. Mondino Foundation, Italy President, Polish Headache Society

Sub-disciplines and Weights Relative weight ( all Sub-discipline Green score contribution to total maximum score of 1000) 1. Patient rights, information and e-health 200 2. Professional awareness and education 150 3. Access to healthcare 250 4. Medication and / or treatment 300 5. Prevention 100 No sub-discipline on Outcomes, as it proved impossible to find any reliable data on treatment results

Trigger factors Reported by 3000 patients at Gothenburg Migraine Clinic Menstruation/ hormones Hunger/ irregular habits Alcohol Weather changes Strong/blinking lights Smells Certain foodstuffs Chocolate Cheese Spices Citrus fruit 18

Euro Headache Index 2012 Indicators 1.1 Existence of a headache* patient organization 1.2 Right of patient organizations co-determination 1.3 Can pharma companies inform direct to patients about Rx drugs 1.4 Patient headache diaries downloadable 1. Patient rights and information & E-Health 1.5 Access to reliable, accurate headache information 1.6 Right to choose among providers in country of residence 1.7 Quality information about headache care providers (hospitals/clinics/centers)? 1.8 Compensation for absenteeism due to headache*? 1.9 Is headache* a recognized condition for getting a disability pension?

Euro Headache Index 2012 Indicators 2.1 Existence of a National Registry for Headache? 2.2 Availability of reliable national epidemiological data on the prevalence of headache disorders* 2.3 Is there a national headache society (for doctors)? 2. PROFESSIONAL AWARENESS AND EDUCATION 2.4 Is there an official set of national guidelines for headache 2.5 Is there a fixed set of diagnostic criteria (IHS) available to healthcare professionals? Is it available in the national language? 2.6 Existence of a module in headache/migraine care in medical school (pregraduate) training curricula (before reaching specialist training) 2.7 Existence of a module in headache/migraine care in neurological specialist training

Euro Headache Index 2012 Indicators 3.1 # of specialized centers for headache p.m.p. 3.2 # of members of national headache society(-ies) p.m.p. 3.3 Neurology specialists p.m.p. 3.4 Modalities of access to a headache specialist (w or w/o referral; "GP gatekeeping") 3. ACCESS TO HEALTHCARE 3.5 Is there a special unit for detoxification? 3.6 Mode of admission for detoxification? 3.7 Emergency room visits for headache* 3.8 Availablility of specialist headache* nurses 3.9 Waiting time for accessing a headache* specialist or neurologist on the secondary level

Euro Headache Index 2012 Indicators 4.1 TRIPTANS (sales per capita) 4.2 Availablity of prophylactic drugs 4. MEDICATION / TREATMENT 4.3 Co-payment for prophylactics? 4.4 Is "medication over-use" an approved indication for referral for detoxification? 4.5 Prevalence of Medication Over-use-induced Headache 5.1 Work-related stress 5. Prevention 5.2 Unemployment rate 5.3 Happy-Life Years 5.4 Hard liquor consumption per capita

Full Headache Index Report available on: www.healthpowerhouse.com/ehi2012 Thank you! 23