Annual report SWEDEHEART 2012



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Annual report SWEDEHEART 1 Published 13 RIKS-HIA presented by Tomas Jernberg, Claes Held and Per Johanson SEPHIA presented by Kristina Hambraeus, Åsa Cider and Lars Svennberg SCAAR presented by Stefan James and Bo Lagerqvist Swedish Heart Surgery Registry presented by Örjan Friberg and Johan Nilsson Percutaneous Valve Registry presented by Johan Nilsson

Annual report 1 RIKS HIA presented by Tomas Jernberg, Claes Held and Per Johanson SCAAR presented by Stefan James and Bo Lagerqvist SEPHIA presented by Kristina Hambraeus, Lars Svennberg and Åsa Cider Swedish Heart Surgery Registry presented by Örjan Friberg and Johan Nilsson Percutaneous Valve Registry presented by Johan Nilsson

Working group RIKS-HIA 1 Chair Tomas Jernberg, Stockholm Olle Bergström, Växjö Lena Forsman, Enköping Claes Held, Karin Hellström-Angerud, Per Johanson, SU Gothenburg Thomas Kellerth, Johan Lugnegård, Ewa Mattson, Lund Anette Sandström, Lycksele Working group SEPHIA 1 Chair Kristina Hambraeus, Gunilla Burell, Åsa Cider, Gothenburg Lars Eurenius, Stockholm Jan-Erik Karlsson, Margrét Leósdóttir, Malmö Lennart Nilsson, Vesna Stefan, Lund Lars Svennberg, -Sandviken Working group SCAAR 1 Chair Stefan James, Deputy Chair Bo Lagerqvist, Oskar Angerås, Gothenburg Jörg Carlsson, Agneta Flink, Gothenburg Ole Fröbert, Matthias Götberg, Lund Robert Kastberg, Johan Nilsson, Göran Olivecrona, Lund Elmir Omerovic, Gothenburg Jonas Persson, Stockholm Nawzad Saleh, Stockholm Working group Swedish Heart Surgery Registry 1 Chair Örjan Friberg, Deputy Chair Johan Nilsson, Lund Gunnar Engström, Stefan Franzén, Wolfgang Freter, Janne Hentschel, Torbjörn Ivert, Stockholm Lisa Ternström, Gothenburg Jan Thorelius, Bengt Åberg, Working group Percutaneous Valve Registry 1 Chair Johan Nilsson, Deputy Chair Jan Harnek, Lund Swedish Society of Thoracic Surgery Peter Holm, Stefan James, Niels Erik Nielsen, Petur Petursson, Gothenburg Andreas Rûck, Stockholm Magnus Settergren, Stockholm Leszek Zagozdzon, Steering committee SWEDEHEART 1 Chair Tomas Jernberg, Stockholm Mona From Attebring, Gothenburg Örjan Friberg, Kristina Hambraeus, Jan Harnek, Lund Stefan James, Johan Nilsson, ISSN: -1843 Publisher responsible under Swedish law: Tomas Jernberg, Karolinska University Hospital, 141 86 Stockholm Editor: Ingrid Mårtensson, UCR. Production: Matador Kommunikation AB, Printing: Exakta AB, 13 The contents of this annual report are protected by copyright Reprinting of the report, in whole or in part, is prohibited without the permission of UCR

Contents SWEDEHEART Annual report 1 Background and aim...5 Summary of target achievement in 1...6 Support and funding:...8 Is SWEDEHEART usable?...8 The SWEDEHEART quality index...1 RIKS-HIA Annual report 1 Participating units, coverage and methodological aspects in comparisons between regions, county councils and hospitals...14 Participating hospitals and description of patient characteristics...16 Reperfusion treatment in ST-elevation myocardial infarction (STEMI) and left bundle branch block (LBBB)... 18 Geographical perspective on reperfusion treatment in ST-elevation myocardial infarction and left bundle branch block...18 Delay times in reperfusion treatment of ST-elevation myocardial infarction and left bundle branch block...1 Heparin, LMW heparin treatment or fondaparinux in non-st-elevation myocardial infarction or left bundle branch block... Intravenous beta blockade and intravenous nitroglycerin in acute myocardial infarction... Coronary angiography in acute non-st-elevation myocardial infarction... Coronary angiography in acute ST-elevation myocardial infarction or left bundle branch block...6 Risk assessment with exercise test, coronary angiography and coronary interventions in acute myocardial infarction...6 Beta blocker treatment in acute myocardial infarction...6 Lipid-lowering treatment in acute myocardial infarction...8 RAS blockers for acute myocardial infarction...8 Antithrombotic treatment in acute myocardial infarction...8 Platelet inhibition and anticoagulation treatment in acute myocardial infarction with atrial fibrillation...3 Length of hospital stay...3 Risk indicators for death from acute myocardial infarction...3 Mortality after 3 days and one year in an age and gender perspective...3 Trend in mortality in hospitals over 3 days and one year in an 18-year perspective...3 Geographical perspective on mortality after 3 days and one year following acute myocardial infarction...34 Comparison of mortality after adjustment for differences in background factors...34 The RIKS-HIA quality index...37 SEPHIA Annual report 1 SEPHIA annual report 1 (introduction)...4 Participating centres, number of patients, coverage, representativeness...43 Participation in disease-prevention programmes...45 Drug treatment...49 Target achievement rates for risk factors...51 Disease burden: symptoms, quality of life, re-admissions, sick leave...53 Summarising measures of quality of care...55 Research and development...57

SCAAR Annual report 1 Introduction...6 PCI...65 ST-elevation myocardial infarction (STEMI)...67 Non-ST-elevation myocardial infarction (NSTEMI)...71 Antithrombotic treatment in PCI...7 Invasive diagnostics and treatment...74 Drug-eluting stents...75 Drug-eluting balloons...77 Fluoroscopy, radiation dose and contrast...78 Puncture site and bleeding complications...79 Complications in coronary angiography and PCI...8 Coronary angiography with computed tomography (CT)...8 Swedish Heart Surgery Registry Annual report 1 Introduction...86 Definitions and classification of procedures...87 Summary of the annual report...87 All heart surgery...88 Demographics and process data...91 Results and outcomes...9 Risk assessment in heart surgery...95 Coronary surgery...11 Valvular surgery...13 Aortic valve surgery...14 Mitral valve surgery...15 Other heart surgery...16 Percutaneous Valve Registry Annual report 1 Summary...11 Background...11 Coverage...11 Purpose...113 Results/method...113 Symptoms...115 Operative variables...115 Complications...116 Survival...119 Follow-up...1 The very old...1 Participating hospitals and persons responsible in 1 in RIKS-HIA, SEPHIA, SCAAR, Swedish Heart Surgery Registry and the Percutaneous Valve Registry...14 Publications from SWEDEHEART 1...16 Personnel 1 13...18 County codes AB Stockholm County AC Västerbotten County BD Norrbotten County C County D Södermanland County E Östergötland County F County G Kronoberg County H County I Gotland County K Blekinge County LM Skåne County N Halland County O Västra Götaland County S Värmland County T County U Västmanland County W Dalarna County X borg County Y Västernorrland County Z Jämtland County Abbreviations UH University hospital CH County hospital DH District hospital

SWEDEHEART Annual report 1 Background and aim According to Swedish National Board of Health and Welfare statistics, a dramatic decrease in both the incidence of and mortality from acute myocardial infarction has been seen in the past two decades. In 1987, 39 individuals were affected by myocardial infarction, of whom 3 were hospitalised. In 1, 3 individuals developed myocardial infarction, of whom 6 were hospitalised. Over this period the one-month mortality after a myocardial infarction fell from 45% to 9% for all patients and from 9% to 13% for those hospitalised. The number with myocardial infarction as an underlying or contributory cause of death decreased from 18 individuals in 1987 to 9 individuals in 1. This decrease is seen in both women and men and in all age groups below 85. Despite this success, cardiovascular disease continues to be the most common cause of death in both men and women. In 1 cardiovascular disease was the underlying cause of death in 4% of cases. Ischaemic heart disease accounted for 4% of cardiovascular causes. The costs to society are difficult to establish. According to calculations from the Institute for Health Economics in Lund, the total economic cost in 1 was SEK 61.5 billion, costs of medical care accounting for 41%, informal care by family and friends for 3% and loss of production for 9%. Diagnostics and treatment of acute and chronic heart disease today is to a great extent based on scientific studies, are most treatments have clearly proven effects in the form of better survival, reduced risk of recurrence and improved quality of life. There have been recommendations for treatment for several years in the national guidelines of the National Board of Health and Welfare. However, there are still variations between different hospitals and healthcare regions with regard to utilisation of diagnostic tests, pharmaceutical treatment, catheter-based and surgical interventions, which has consequences for public health and health economics. The primary purpose of SWEDEHEART is to support evidence-based development of therapy in acute and chronic coronary artery disease and in catheter-based or surgical valve intervention by providing continuous information on care needs, tests, treatments and treatment outcomes. SWEDEHEART also aims to register changes in the quality and content of care over time within a hospital and in comparison with other hospitals, to contribute risk appraisal tools and decision support and to support continuous improvement efforts in all participating units. SWEDEHEART is also intended to form the basis for research on coronary artery disease and valve intervention. The long-term target is to contribute to reduced mortality and morbidity in the patients and to improve the cost-effectiveness of care. In addition, SWEDEHEART is a procedurerelated and surgery-related registry for the purpose of collecting relevant information concerning severity of disease, patients' risk profile, medical and medical-device treatment, outcomes and any complications from the time of intervention for all procedures and surgical interventions performed. Comparisons can be made between hospitals and between regions. The individual operator can also compare his or her results with an average for other operators in the hospital department or in the whole of Sweden. New medical devices can be quickly evaluated, as can different treatment strategies in the short and long-term perspectives. The registry collects information from all hospitals that care for patients with acute coronary artery disease and all patients who undergo coronary angiography, catheter-based intervention or heart surgery, and reflects an unselected population. The possibility of combination with other national registries also offers complete follow-up with regard to myocardial infarction, death and other diseases. The registry also offers the possibility of open randomised registry studies of unselected patients, and a national biobank linked to the registry is under construction. The work of SWEDEHEART therefore represents an important foundation for research on heart disease and has resulted in a number of publications in the most highly ranked medical journals. Its results have consequently influenced care of heart disease throughout the world. RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1 5

Summary of target achievement in 1 Based on the SWEDEHEART annual report for 1, we draw the following conclusions: The proportion of patients with acute myocardial infarction who are included in SWEDEHEART is increasing. Patients with acute myocardial infarction are continuing to change and are characterised by: - increasing proportion who are overweight, have medically treated hypertension and have dyslipidaemia, while the proportion of smokers and the proportion with diabetes or a history of myocardial infarction have stabilised - increasing proportion who have previously undergone revascularisation with PCI, while the proportion who have undergone CABG has stabilised. Treatment of acute myocardial infarction has greatly improved in recent years, and has since remained at a stable and high level. This means that more patients have received: - Aspirin (acetylsalicylic acid), PY1 receptor blockade, beta-blockers and lipid-lowering treatment - Reperfusion treatment in ST-elevation myocardial infarction with left bundle branch block - LMW heparin/fondaparinux and early coronary angiography and revascularisation for non-st-elevation myocardial infarction. - ACE inhibitors/arb treatment in concurrent hypertension, diabetes or heart failure/ left-ventricular dysfunction. As treatment of patients with myocardial infarction has improved, a continued decrease in mortality has been observed over the past 18 years, regardless of gender and age. The decrease is most evident for elderly patients and in long-term follow-up. Treatment after an acute myocardial infarction has also improved in terms of secondary preventive measures and outcomes: - The number of patients undergoing systematic follow-up and registration of secondary preventive treatments and long-term outcomes in SWEDEHEART is increasing - The vast majority of patients are asymptomatic when assessed two months and one year after the infarction - The use of evidence-based drug classes is in very good agreement with current guidelines. - The proportion of patients reaching the target level for cholesterol has increased in comparison with previous years. - The number of patients on sick leave when assessed both two months and one year after the infarction has stabilised at a low level. In coronary angiography and the area of PCI we can note that: - The total number of both angiographies and PCIs is continuing to increase somewhat at the expense of CABG - part of the increase in PCI consists of an increased number of intracoronary pressure measurements classified as diagnostic PCIs - utilisation of coronary angiography and PCI varies between counties by a factor of two to three, largely due to variable cardiovascular morbidity - the proportion of patients over the age of 8 is increasing among those undergoing coronary angiography. - access to PCI in Sweden is good, with no waiting time. In cases of non-st-elevation myocardial infarction PCI is done the same day or the day after admission to hospital in most cases - drug-eluting stents now completely dominate over bare metal stents in PCI - strategies of antithrombotic medication in PCI have changed radically in the past ten years - new effective antithrombotic drugs have been quickly introduced in accordance with general recommendations - the proportion of patients examined via the radial artery has increased dramatically, and this is now the most common approach, resulting in a reduced risk of bleeding - computed tomography is used more often for the diagnosis of coronary artery disease, and the outcome is often normal. In the area of heart surgery it is seen that: - waiting times for heart surgery in Sweden remain short, in several centres very short - the number of heart operations in Sweden fell slightly in comparison with previous years. The decrease is entirely accounted for by fewer pure coronary artery operations - the risk of being affected by a serious complication or dying in a heart operation is gradually declining despite the patients operated on steadily becoming a little older and sicker - the outcome for the whole of Sweden stands comparison with the world's most renowned heart surgery centres - the outcomes at the various Swedish departments are very even, and the small differences appear to be random - risk adjustment of outcomes using a risk score (e.g. Euroscore) is unreliable as there are 6 RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1

probably local differences in the interpretation of certain variables - an ever-increasing proportion of operations are combined procedures in which coronary artery bypass surgery, valve surgery and arrhythmia procedures, for example, are performed simultaneously. Fewer than half are isolated coronary procedures. TAVI activity in Sweden began in 8. It can be noted from this year's report that: - All interventions since the start have been registered, and coverage is thus one hundred per cent - The number of interventions has increased over the past year from 9 implantations in 11 to 79 implantations in 1, without any evident indication drift being observed. - Thirty-day mortality among Swedish patients was around 7% and one-year mortality was around 15%. These are internationally very reasonable figures and suggest that Swedish TAVI activity is maintaining good quality - The risk of complications during the procedure and during the postoperative period also compares well with published data. Despite great improvements and coronary care and intervention activity that is good by international comparison, this report, like previous ones, can highlight several remaining problem areas where there is potential for improvement, for example: There is still great variation with regard to coverage for myocardial infarction. Not measuring quality is the lowest form of quality. Coverage among patients with myocardial infarction as principal diagnosis needs to be further improved at many hospitals in Sweden. Only one county council meets the requirements with regard to time from ECG as basis for reperfusion to reperfusion treatment. Around a third of county councils fail to perform reperfusion treatment within the recommended time for more than a third of STEMI patients. Initiatives are still necessary in this area, and the organisations in the county councils need to be fine-tuned. There is wide variation regarding time to coronary angiography in non-st elevation myocardial infarction. We still need to define different types of myocardial infarctions better so that more relevant comparisons can be made. Patients with other concurrent disease, for example diabetes and renal impairment, receive treatment less often, with regard to both invasive procedures and medication. There are variations in the use of ACE inhibitors/ ARBs after myocardial infarction. There are wide differences between hospitals regarding length of hospital stay for myocardial infarction. There may be significant differences in mortality between hospitals after treatment for myocardial infarctions, including when casemix is taken into account. There is a need for continued studies in this area. The coverage for systematic follow-up of myocardial infarction patients varies across the country. The pharmacological therapy prescribed and the lifestyle changes recommended are not sufficient to attain target values for blood pressure and lipid control during the first year following myocardial infarction for a third of patients. Treatment with physical training after myocardial infarction varies greatly across the country and is clearly under-utilised at most hospitals despite existing evidence of its efficacy and despite recommendations in national guidelines. The possibility of systematically following up patients with myocardial infarction who are over the age of 75 when they fall ill, who undergo heart surgery or elective PCI is little utilised. The use of various techniques and medicines for percutaneous coronary intervention (PCI) varies markedly between different hospitals and between different doctors. Examples of techniques that vary most are the use of drug-eluting stents, aortic balloon pumps, intracoronary pressure measurements and antithrombotic drugs. It should be possible for national guidelines or recommendations to be established to reduce differences in use. There are variations between the counties in the proportion of patients in the population who undergo heart surgery, and the differences are greatest with regard to coronary surgery. There is inexplicably wide variation in Sweden regarding the proportion of patients with coronary artery disease who are treated with PCI or undergo coronary surgery. Follow-up of quality of life after TAVI is important, but encounters certain difficulties. This year s report records good efficacy regarding lowering of NT-pro BNP and improved sixminute walk test even in an early follow-up following the TAVI intervention. Comparisons between different types of prostheses show equivalent data regarding mortality. Some difference can also be seen in the pattern of complications. RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1 7

Support and funding: SWEDEHEART is supported by the Swedish Society of Cardiology, the Swedish Society of Thoracic Radiology, the Swedish Society of Thoracic Surgery and the Swedish Heart Association. The registry is financed by the Swedish Association of Local Authorities and Regions (SALAR). Is SWEDEHEART usable? The year's user survey The user survey for the year, which was sent out to locally responsible individuals and heads of department, produced 143 responses, 4% from doctors, 39% from nurses, 5% from other professional groups and 6% from heads of department. Of these, 75% were working with RIKS-HIA, 38% with SEPHIA, 17% with SCAAR, % with the Swedish Heart Surgery Registry and 3% with the Percutaneous Valve Registry. The statement I regard SWEDEHEART as a valuable tool to improve quality of care in our hospital was agreed with by 89% of all respondents (Figure 1) and 75% of the heads of department. A total of 8% considered that the registry helped the departments to identify areas for improvement to address in their activity and 73% felt that it had contributed to more consistent use of methods of treatment in their units. A somewhat low proportion, 71%, considered that SWEDEHEART had improved their ability to comply with national guidelines and introduce new better working practices (Figure ). Only 63% agreed with the statement that The top management of our hospital supports and shows great interest in our work with quality registries (Figure 3). Some ambivalence was also expressed on whether the outcome of SWEDEHEART s open comparisons had made it easier to justify and implement work on change at the unit (Figure 4). To summarise, it can be said that there is strong support among the users for the work that is carried out in SWEDEHEART and that a large majority consider it to improve quality for our patients. At the same time there is potential for improvement, and the outcome of the survey expresses a need for greater involvement by the top management in some hospitals. Swedish cardiac care is improving In conjunction with the year s survey, users were also asked to describe how the registry is used in improvement efforts. Most report that at hospital or county level they have continuous improvement activity most often based on SWEDEHEART data. Many hospitals and counties have regular meetings at which the results are discussed. The quality indicators are monitored continuously to trigger an alarm if anything is abnormal. Something else that is common is what is known as failure investigations, where cases that have not received the recommended treatment are reviewed. In that way compilations can be made both for common registration errors and for aspects that deviate from national or local guidelines. Other strategies described are to work on various focal areas during particular periods of time. Local improvement projects A large number of local more specific improvement projects are being implemented or were implemented during the year by SWEDEHEART users. In the year s user survey, 15 users state that their hospitals are working, or have worked, on improvement projects regarding delay times for STEMI. Four hospitals stated that they have received support from SWEDEHEART in work on improving patient flow in all myocardial infarctions or among those with NSTEMI, resulting in shorter times to echocardiography, coronary cardiography and discharge. One of the hospitals also reported that it had gained better prioritisation of patients needing coronary angiography in this way. Five hospitals reported that they are working on improvement regarding adherence to guidelines in drug prescribing. This work is being done both with information campaigns aimed at doctors and using checklists. One hospital stated that it had had training for both doctors and nurses regarding drug prescribing to broaden accountability for patients being prescribed correct medication. Six hospitals have used SWEDEHEART to measure the change in complications on the introduction of new drugs. Six hospitals state that they have been working on improvement projects regarding secondary prevention, two hospitals having introduced intermediate checks in order to obtain better outcomes at the 8 RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1

% 7 6 5 4 3 1 % 4 35 3 5 15 1 5 Completely disagree Partially disagree Partially agree Completely agree Completely disagree Partially disagree Partially agree Completely agree % 45 4 35 3 5 15 1 5 Figure 1. Consider SWEDEHEART to be a valuable tool with which to improve quality of care in our hospital. Completely disagree Partially disagree Partially agree Completely agree Figure 3. The top management of our hospital support and show interest in our work on quality registries. Figure. SWEDEHEART has improved our ability to comply with national guidelines and introduce new better ways of working. % 5 45 4 35 3 5 15 1 5 Completely disagree Partially disagree Partially agree Figure 4. The result of SWEDEHEART's open comparisons has made it easier to justify and implement change in our unit. Completely agree 1 14 month check-up. Another hospital stated that it had had a project to improve care for those over the age of 8. There is thus impressive impetus for improvement in Swedish cardiac medicine, with a large number of local improvement projects linked to the registry. The above is just a small selection as the users were asked to give examples, and not all hospitals were represented in the survey. SWEDEHEART is improving Many projects are currently in progress in SWEDE HEART which in the long run will result in further improvement. We are working steadily to develop and, at the same time, fine-tune the registry to minimise problems for users. The level of coverage in SWEDEHEART is high, but should be even higher and preferably encompass all patients whose quality of care we wish to improve. To increase the motivation to register and to support improvement projects, intensive work is now in progress on improved reporting functions towards the users in hospitals. At the same time we need to open up further in order to make relevant and correct information more readily available to both decision-makers and patients. This must be done in close communication with all participating hospitals. SWEDEHEART has a special project group that is working on the development of PROMs (patient-reported outcome measures) and PREMs (patient-reported experience measures) to improve the way we measure the outcomes with the greatest significance for the patient. We also wish to increase the interactivity in this. In the longer term we want the registry to be capable of becoming a tool in care and an aid in managing the patient. There is great impetus for further improvement in Swedish cardiac medicine. The registry wishes to be able to respond to this impetus by being a useful tool in this work. In the longer term there is also a desire for data to a greater extent than today to be taken directly from a patient record to minimise duplication of work. SWEDEHEART also wishes research within the registry to be intensified. To make this easier, there is now a standardised way of applying to have research projects implemented in the registry. We are also in the process of developing routines so that we can continue to be able to perform successful registry-based randomised studies. RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1 9

Quality indicator.5 points 1 point Reperfusion in STEMI/LBBB 8% 85% Reperfusion in STEMI/LBBB within recommended time 75% 9% Coronary angiography in target group in NSTEMI 75% 8% PY1 blockers in NSTEMI 85% 9% ACE inhibitors/arbs in target group for myocardial infarction 85% 9% with myocardial infarction as principal diagnosis (<8 years) included in RISK-HIA 9% 95% of myocardial infarctions < 75 years in RIKS-HIA undergoing follow-up (SEPHIA) 75% 9% of smokers who have stopped after 1 14 months 6% 7% who have taken part in physical training programme after 1 14 months 5% 6% with LDL cholesterol <.5 mmol/l after 1 14 months 6% 7% with systolic blood pressure < 14 mmhg after 1 14 months 7% 75% Table 1. The SWEDEHEART quality index. Katrineholm Norrtälje Lidköping Ljungby Bollnäs Norrköping Eksjö Lindesberg Motala Torsby Värnamo Västervik Växjö Lund Trelleborg Arvika Malmö Mora Nyköping Oskarshamn Hudiksvall Hässleholm SU Mölndal Sollefteå Visby Ängelholm Alingsås Borås Enköping Karolinska Kungälv Köping Trollhättan NU Varberg Örnsköldsvik Östersund Piteå Halmstad Karlskoga Sundsvall Avesta Lycksele Skellefteå Ystad Kiruna Södertälje Kalix Gällivare 1 3 4 5 6 7 8 9 1 11 Quality index 11 Figure 5. The SWEDEHEART quality index in 11 by hospital (with at SWEDEHEARTs kvalitetsindex 11 per sjukhus (med minst least 1 1 patients patienter in the i målgruppen). target group). The SWEDEHEART quality index The RIKS-HIA quality index was introduced in 5 as an attempt at a summarising measure of a unit s quality. There has been great interest in the index from the outset from the profession, decisionmakers, the general public and the media. The open discussion on the differences in care has led to greatly improved compliance with national guidelines. Generally very good compliance with guidelines was noted in the 1 annual report. After around 1 years of registry-supported work on quality development, the scope for improvement in the RIKS-HIA quality index is now limited. It was therefore decided at the 11 annual meeting of SWEDEHEART that in future there would be less focus on the RIKS-HIA quality index and that a new index would be devised. The new index, the SWEDEHEART quality index, focuses more on areas where there is great scope for improvement, e.g. coverage and secondary preventive measures such as smoking cessation, blood pressure monitoring and participation in physical training programmes. In that way we hope to be able to transfer a successful concept to areas with great variation and great scope for improvement. The SWEDEHEART quality index contains 11 indicators and is to be regarded as an attempt at reflecting the quality of the whole care chain (Table 1). Five indicators come from the previous RIKS-HIA quality index. Four indicators come from the SEPHIA summary measure Q4 with certain modifications. Two indicators concern coverage in order to highlight the significance of 1 RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1

Norrtälje Katrineholm Ljungby Piteå Varberg Karolinska Motala Eksjö Karlshamn Trelleborg Värnamo Alingsås Bollnäs Västervik Växjö Örnsköldsvik Hudiksvall Kalix Lidköping Oskarshamn Skåne US Torsby Ängelholm Hässleholm Mora Norrköping Arvika Enköping Nyköping Visby Gällivare Halmstad Kungälv Köping SU Mölndal Sollefteå Östersund Borås Lindesberg Ystad Kiruna Skellefteå Sundsvall Södertälje Trollhättan NU Avesta Lycksele 1 3 4 5 6 7 8 9 1 11 Quality index 1 Figure 6. The SWEDEHEART quality index in 1 by hospital (with at least 1 patients in the target group). SWEDEHEARTs kvalitetsindex 1 per sjukhus (med minst 1 patienter i målgruppen). RIKS HIA SEPHIA SCAAR SWEDISH HEART SURGERY REGISTRY RIKS HIA, SEPHIA, SCAAR & SWEDISH HEART SURGERY REGISTRY RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY RIKS-HIA & SEPHIA RIKS HIA & SCAAR RIKS HIA, SEPHIA & SCAAR Figure 7. Participating hospitals in RIKS-HIA, SEPHIA, SCAAR, Swedish Heart Surgery Registry and Percutaneous Valve Registry in 1. this. The limit for a score of 1 for the first five indicators has been devised by reviewing a large number of patient records. The limit for a score of 1 for the other six indicators has been set where the steering committee and working groups have considered the level to be satisfactory. In comparison with 11 (Figure 5), an improvement in the index occurred in 1 (Figure 6) from a mean value of 4.6 to 5.6. There is still wide spread, from points to 8.5 points. The highest score in 1 was achieved by Norrtälje, followed by Katrineholm and Ljungby. RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1 11

RIKS-HIA Annual report 1

RIKS-HIA Annual report 1 Participating units, coverage and methodological aspects in comparisons between regions, county councils and hospitals As previously, in the annual report for 1 RIKS-HIA makes an open comparison of myocardial infarction care between hospital regions, county councils and hospitals. Comparisons between regions and county councils are conditional on these being organisationally coherent units that are responsible for all cardiac medicine in their own area. In acute cardiac care all areas also manage to deal with all special interventions in their own region that are needed in connection with acute cardiac medicine. Acute cardiac medicine is, however, today based principally on the county council level, and the patient's condition in the ambulance often decides to which hospital in the county council area the patient is taken. All direct comparisons between regions, county councils and hospitals must be interpreted with very great caution as they do not take account of differences in patient characteristics, such as age, gender, risk factors, history of heart disease and other concomitant diseases. The age breakdown is similar between regions and counties. At hospital level, however, the age breakdown is more variable, which may have an impact on care efforts and care outcomes (Figure 1). Despite RIKS-HIA requiring all patients with suspected acute myocardial infarction to be included, many hospitals still only register patients cared for in cardiac intensive care units, and the indication for care of the elderly in these units varies. To avoid the effects of such differences on care outcomes, patients over the age of 8 in many cases have been excluded from comparisons between different units. In addition, there are differences between regions, county councils and hospitals regarding which patients are admitted to cardiac intensive care units and consequently to what extent they are included in the RIKS-HIA registration. Some hospitals may thus have more complete inclusion of all myocardial infarction in their registries while others care for certain patients in other, non-riks-hia-supporting, wards. Measuring quality should be regarded as the basis for good work on quality. RIKS-HIA therefore considers coverage, i.e. the proportion registered out of the patient population, to be an important quality indicator. As in the previous year, coverage has been measured in patients with myocardial infarction (I1) as the principal diagnosis. If a patient has been cared for in more than one unit during a continuous period, this has been counted as one care episode. Patients who have been carried for in more than one hospital during the same episode have been counted for the hospital that finally discharged the patient. There is wide variation in coverage between hospitals. In patients below the age of 8, coverage ranges from 56% to 98%, with the highest coverage in Hässleholm and Ängelholm (Figure ). There is, however, a trend towards increasing coverage from a median (5th to 75th percentile) of 88 (83 93)% in 11 to 9 (84 94)% in 1. Coverage for elderly patients is substantially lower, ranging from 1% to 98%, with the highest coverage in Varberg and Kalix (Figure 3). Here too there is a trend towards an increase, from 6 (4 78)% in 11 to 66 (54 85)% in 1. Coverage both among those who are younger and older than 8 is somewhat lower in women. The proportion of included patients in the registry may have an impact on treatment outcomes, for example mortality. The number of registered myocardial infarction patients at hospital level ranges from 5 up to 1 per year (Figure 4). In a small number of counties and at a relatively large number of hospitals there are thus very small numbers of patients which, due to random variation, leads to uncertainty in comparisons regarding treatments and complications with a low incidence, in particu- 14 RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1

RIKS-HIA Hässleholm Karlskoga SU Mölndal Ängelholm Växjö Bollnäs Lidköping Ljungby Norrtälje Oskarshamn Avesta Karlshamn Varberg Katrineholm Trelleborg Halmstad Torsby Hudiksvall Sollefteå Köping Lindesberg Trollhättan NU Östersund Motala Piteå Alingsås Kalix Gällivare Visby Värnamo Lycksele Skellefteå Västervik Nyköping Norrköping Karolinska Ystad Enköping Örnsköldsvik Sundsvall Arvika Södertälje Kiruna Skåne US Eksjö Borås Kungälv Mora 1 3 4 5 6 7 8 9 1 59 6 69 7 79 8+ Figur Varberg 6d. Relativ fördelning av åldersgrupper per sjukhus vid akut hjärtinfarkt, alla Kalix åldrar, sjukhus med minst 1 patienter i urvalet, 1. Piteå Norrtälje Sollefteå Ljungby Karlskoga Ängelholm Lindesberg Hudiksvall Skellefteå Bollnäs Hässleholm Södersjh Motala Östersund Capio Blekingesjh Katrineholm Gällivare Västervik Karolinska Skaraborg Oskarshamn Sahlgrenska NU-sjukvården Örnsköldsvik Alingsås Halmstad Trelleborg Nyköping Norrköping Visby Kungälv Växjö Avesta Värnamo Skåne US Enköping Södertälje Sundsvall Ystad Köping Eksjö Arvika Lycksele Torsby SÄ-sjukvården Mora Kiruna 1 3 4 5 6 7 8 9 1 Per cent Hässleholm Ängelholm Kalix Bollnäs Ljungby Sollefteå Varberg Alingsås Piteå NU-sjukvården Trelleborg Halmstad Lindesberg Ystad Motala Kungälv Skaraborg Karolinska Södersjh Hudiksvall Värnamo Capio Norrtälje Växjö Köping Oskarshamn Skellefteå Östersund Västervik Nyköping Blekingesjh Katrineholm Skåne US Sahlgrenska Karlskoga Örnsköldsvik Eksjö Södertälje Norrköping Torsby Gällivare Arvika Avesta Visby Mora Enköping Sundsvall Lycksele SÄ-sjukvården Kiruna 1 3 4 5 6 7 8 9 1 Per cent Figur 9a. Täckningsgrad för registrerade hjärtinfarkter i RIKS-HIA, <8, per utskrivande sjukhus 11, jämfört med patientregistret. Skåne US Karolinska Trollhättan NU Östersund Halmstad Norrköping Varberg Växjö Hudiksvall Köping Bollnäs Sundsvall Borås Trelleborg Kungälv Motala Hässleholm Eksjö Nyköping Piteå Örnsköldsvik Karlskoga SU Mölndal Skellefteå Sollefteå Värnamo Visby Kalix Ystad Södertälje Ängelholm Norrtälje Ljungby Lidköping Lindesberg Mora Alingsås Gällivare Oskarshamn Katrineholm Västervik Avesta Torsby Karlshamn Arvika Enköping Lycksele Kiruna Kristinehamn 1 3 4 5 6 7 8 9 1 11 Number 59 6 69 7 79 8+ Figure 1. Relative breakdown of age groups by hospital in acute myocardial infarction, all ages, hospitals with at least 1 patients in the sample, 1. Figure. Coverage for registered myocardial infarctions in RIKS-HIA, age <8, by discharging hospital in 11, compared with patient registry. Figure 3. Coverage for registered myocardial infarctions in RIKS-HIA, age > = 8, by discharging hospital in 11, compared with patient registry. Figure 4. Hospital breakdown of patient numbers and ages for acute myocardial infarction, all ages, 1. Figur 9d. Täckningsgrad för registrerade hjärtinfarkter i RIKS-HIA, >=8, per utskrivande sjukhus 11, jämfört med patientregistret. Figur 6b. Sjukhusfördelning av patientantal och åldrar vid akut hjärtinfarkt, RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART alla åldrar, SURGERY 1. REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1 15

lar mortality. The uncertainty in the comparisons between units with small numbers of patients is also apparent from wide variations in outcomes between years. The report therefore usually presents comparisons at hospital level as diagrams where the hospitals' levels are indicated as outcomes for the year with a 95% confidence interval to indicate the uncertainty in these comparisons. Only units with at least patients in the group concerned have been included in the presentation of results. To reduce sources of error in open comparisons of mortality between units, in some cases patients from two consecutive years (11 1) and only units with at least 8 patients have been included. Despite these measures to reduce sources of error, uncertainty nevertheless remains in comparisons of treatments and complications with low incidences, such as mortality, for units with low patient numbers such as in small counties, as well as for small and medium-sized hospitals. The trend and comparisons between these units and their variations in treatment and complication rate are therefore only amenable to assessment with a detailed knowledge of the internal circumstances and activities of these units. Participating hospitals and description of patient characteristics All patients with suspected acute coronary artery disease, regardless of care in an intensive care unit, cardiac or medical ward for which ECG or measurement of heart damage marker is ordered to rule out/confirm infarction have to be registered in RIKS-HIA. In 1 all 69 hospitals took part and 51 939 care episodes were registered. 58% of all care episodes were caused by acute coronary artery disease. Acute myocardial infarction was present in 39% ( 34), unstable angina in 6% ( 894) and stable angina in 14% (7 6) of patients. A change in the type of myocardial infarction has taken place during the 17 years of registration (Figure 5). The number of registered non-st-elevation myocardial infarction (NSTEMI) cases in particular has increased in number, while the number of cases of ST-elevation myocardial infarction has decreased somewhat. However, stabilisation and unchanged distribution have been seen over the past six years. The proportion of patients with STEMI, due an acute occlusive blood clot in a coronary artery, has fallen from 45% to 9% over the period of 18 years. The proportion of patients with left bundle-branch block (LBBB) has fallen somewhat over the period and was 6% of all myocardial infarctions in 1. In myocardial infarction only a minor proportion of patients, 35%, need immediate anticoagulant treatment with thrombolysis or direct opening of a coronary artery with percutaneous coronary intervention (PCI). However, this group requires rapid management with direct opening of the coronary artery to avoid complications. The number of patients with NSTEMI has increased correspondingly from 46% to 64%. Myocardial infarction care is therefore now dominated by NSTEMI patients and severe angina pectoris, which are usually due to severe coronary artery stenosis and blood clot formation without completely occluding the coronary artery. The most common measures in treatment of NSTEMI are intensive antithrombotic treatment followed by early coronary intervention. Since September 1 myocardial infarctions have been classified by type. Type 1 infarction is a spontaneous myocardial infarction due to ischaemia which is caused by a primary coronary event such as plaque rupture or fissure. Type infarction is a non-thrombotic, secondary myocardial infarction caused by imbalance between need for and access to perfusion, for example spasm, arrhythmia or fall in blood pressure. Type 3 infarction is sudden cardiac death associated with symptoms of ischaemia, new ST elevation or LBBB or verified coronary thrombus but without access to biomarker analysis. Type 4 is associated with PCI and type 5 with bypass surgery. Type classification of myocardial infarction was introduced principally to differentiate between type 1 and type infarctions as the treatment is markedly different. A variation in the proportion of type 1 infarctions was seen in 1 (Figure 6). However, most hospitals had between 85 and 95% type 1 infarctions. Work is in progress on validating this new variable. Around two-thirds of patients with acute myocardial infarction are men and one-third are women. The average age of myocardial infarction patients increased in the 199s but has been stable since between 75 and 76 for women and between 69 and 7 for men. The pattern of risk factors has also changed. As in society in general, an increased proportion of overweight patients is being seen, and in 17 years the proportion of patents with a BMI above 7 has increased from 38% to 5% (Figure 7). Overweight is often associated with reduced glucose tolerance and a tendency to diabetes. A very slow increase in the 16 RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1

RIKS-HIA 1 9 8 7 6 5 4 3 1 1995 1996 1997 1998 1999 1 NSTEMI LBBB STEMI Figur 5b. EKG-kategori enligt ankomst-ekg vid hjärtinfarkt, alla åldrar, 1. 6 5 4 3 1 3 1994 1996 1998 4 6 8 1 1 Statin-treated Diabetes Previous infarction Previous PCI Hypertension Smoker Previous heart surgery BMI over 7 Figur 5d. Utvecklingen av förekomster av bakgrundsfaktorer vid hjärtinfarkt <8 år 1995-1. 4 5 6 7 8 9 1 11 1 Hospital Södertälje Skellefteå Lycksele Eksjö Värnamo Borås Trelleborg Kiruna Sundsvall Skåne US Hudiksvall Alingsås Östersund Ljungby Arvika Kalix Norrköping Torsby Katrineholm Lindesberg Oskarshamn Lidköping Visby Hässleholm Ängelholm Växjö Ystad Kungälv Nyköping Norrtälje Mora SU Mölndal Trollhättan NU Piteå Köping Varberg Halmstad Örnsköldsvik Bollnäs Västervik Karolinska Sollefteå Avesta Karlshamn Motala Enköping Gällivare 1 3 4 5 6 7 8 9 1 Type-1 Type- Type-3 Type-4a Type-4b Type-5 Hospital Figur 31. Fördelning av infarkttyp bland hjärtinfarktspatienter Sollefteå <8 år, per utskrivande sjukhus med minst 1 patienter 1. Västervik Kalix Piteå Gällivare Katrineholm Oskarshamn Lindesberg Norrtälje Varberg SU Mölndal Avesta Mora Alingsås Norrköping Motala Arvika Skellefteå Växjö Köping Torsby Ängelholm Karlskoga Nyköping Kungälv Karolinska Lidköping Bollnäs Ystad Örnsköldsvik Södertälje Hudiksvall Skåne US Trelleborg Halmstad Trollhättan NU Karlshamn Lycksele Värnamo Hässleholm Ljungby Östersund Visby Eksjö Enköping Sundsvall Kiruna 1 3 Cancer Dementia Other Figur 3. Andel patienter med Annan allvarlig sjukdom som medför avsteg från riktlinjer, av hjärtinfarktspatienter <8 år, per utskrivande sjukhus 1 med minst 1 patienter. Figure 5. ECG category according to admission ECG in myocardial infarction, all ages, 1. Figure 6. Breakdown of types of infarction among myocardial infarction patients aged < 8, by discharging hospital with at least ten patients, 1. Figure 7. Trend in incidence of background factors in myocardial infarction aged < 8, 1995 1. Figure 8. of patients with other serious disease leading to deviation from guidelines, out of myocardial infarction patients aged < 8, by discharging hospital in 1 with at least ten patients. RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1 17

proportion of patients with diabetes was seen between 1995 and 1, from % to 5%. The metabolic syndrome with overweight and reduced glucose tolerance is often associated with high blood pressure. An increase in the prevalence of high blood pressure from 33% to 47% can be seen over the 17-year period. We can also observe an increase in the proportion of smokers from 5% to a peak of 8%, but the proportion is now stabilising around 6 7%. The number of patients who have fallen ill during ongoing statin treatment increased during the period from 5% to 33 35%. At the same time, we find that more and more patients have already undergone treatment of coronary artery disease with PCI before their myocardial infarction (up from 4% to 19%) or CABG (up from 5% to 1%) over the period. In an analysis of cardiovascular risk factors, a conti nuous increase is seen in both men and women of all ages. In agreement with previous knowledge, younger myocardial infarction patients have more risk factors than older ones. Our results also show that the increase in the number of risk factors is taking place at roughly the same rate in both women and men in all age groups. There is a trend towards women having more risk factors than men in the equivalent age group. A consistent pattern in recent years is for STEMI to be more common in young people than in older people, and for STEMI to be more common in men than in women up to the age of 74, but then to be equally common in women and men. The hospitals can also register whether patients have a different serious disease that leads to a departure from guidelines (Figure 8). There is, however, continued wide spread between units (.5 3%), which demonstrates a need for continued work on applying this registration in a more homogeneous way. Reperfusion treatment in ST-elevation myocardial infarction (STEMI) and left bundle branch block (LBBB) The most highly prioritised method of opening occluded coronary arteries in acute myocardial infarction since the start of the s has been primary PCI treatment. In 1 this was performed on 9% of reperfusion-treated patients with STEMI or suspected new LBBB, and a further 3% of patients underwent acute coronary angiography without action being taken (Figure 9). The shift to primary PCI in Sweden in recent years has meant that thrombolysis treatment has accounted for around 5% of myocardial infarction patients treated with reperfusion with ST elevation or left bundle branch block, and Metalys or Rapilysin are given almost exclusively in such cases (Figure 1). The proportion of patients with bleeding complications fell further in 1 and is now less than 1% (Figure 11). There is, however, an age-dependent variation, where the risk of severe bleeding is 1.7% in those over the age of 8 and.7% in those below the age of 8. The most severe forms, fatal or cerebral haemorrhaging, which between 1995 and 3 occurred in.5 1%, have only accounted for.% of all myocardial infarctions in recent years. Here too an age difference is observed, with a.1% risk in those below the age of 8 and a.6% risk in those over the age of 8. Geographical perspective on reperfusion treatment in ST-elevation myocardial infarction and left bundle branch block All reperfusion treatment in STEMI reduces mortality. Primary PCI has additionally been shown to reduce the risk of recurrence of myocardial infarction and to result in shorter hospitalisation times. Most county councils have gone over completely to primary PCI. Nationwide, an average of 86% of patients with STEMI receive reperfusion treatment (Figures 1, 1). At hospital level (Figures 13 14) there is still variation in the use of reperfusion treatment for STEMI and LBBB infarction. This variation can probably be explained to some extent by incorrect registrations, but there may also be remaining scope for improvement in several units. Equal reperfusion treatment prevails between the genders. There was previously a wide difference in the proportion treated with reperfusion in relation to age. A difference remains, but since 7 this difference has steadily decreased (Figures 15 16). In order to improve the use of reperfusion treatment, there is still reason to review the routines for utilisation of the methods, particularly among the elderly. 18 RIKS HIA, SEPHIA, SCAAR, SWEDISH HEART SURGERY REGISTRY & PERCUTANEOUS VALVE REGISTRY ANNUAL REPORT 1