Diabetes Research and Clinical Practice 106S2 (2014) S291–S294

Contents available at ScienceDirect

Diabetes Research and Clinical Practice journ al h ome pa ge : www .elsevier.co m/lo cate/diabres

Diabetes care – improvement through measurement ¨ ¨ Bjorn Eliasson*, Soffia Gudbjornsdottir ¨ Institute of Medicine, University of Gothenburg, Sahlgrenska University Hospital, S-413 45 Goteborg, Sweden

ARTICLE INFO

ABSTRACT

Keywords: Diabetes mellitus Quality assurance Health care Epidemiology

The National Diabetes Register (NDR) of Sweden was initiated in response to The Saint Vincent Declaration (published 1990), to provide a tool for continuous quality assurance in diabetes care. The original purpose, to monitor the results of health centres from year to year and to compare these with national and regional means, is still the most important one, while continuous follow-up of guidelines, treatments and complications are as important on a national level. The data reported contain basal clinical characteristics of the patients, as well as measures of risk-factor control and the presence of diabetes complications. Many clinics use templates within the medical record systems to verify that all information relevant to good quality assurance in diabetes care is complete, and thereafter export data to NDR. In order to create extra value, the NDR web interface, online at ndr.nu, offers functions to use when interacting with the individual patient, such as reports of all information reported to NDR, including medications and risk-factor control. The clinical results are thus reported back to the health centres (printed and instantaneously online), but are also used for scientific analyses. Such are required by the funding bodies to develop the analytical methods by quality registers, and to widely spread information, including publishing in scientific journals. Ongoing studies address, e.g., the effects of different glucose-lowering therapies, the role of ethnicity and migration, patientreported outcomes and risks of morbidity and mortality in diabetes mellitus. © 2014 Elsevier Ireland Ltd. All rights reserved.

As a result of this, and in concert with Swedish law which

1. Start of a national diabetes register

states that “the quality of health care should be developed and assured systematically and continually”, the National

In a joint effort to reduce the future burden of diabetes, rep-

Diabetes Register (NDR) was initiated in the beginning of the

resentatives of all European governments, patients, diabetol-

1990s. In 1996 the first patients were reported, on paper forms

ogists and experts convened in Saint Vincent, Italy, on 10–12

or diskettes. The data reported contained basal clinical char-

October 1989 after an initiative by the WHO (World Health Organization) and IDF (International Diabetes Federation).

acteristics of the patients, as well as measures of risk-factor

This conference resulted in The Saint Vincent Declaration [1],

variables was agreed upon after discussions between diabetol-

which lists a number of key measures to be taken by nations

ogists, endocrinologists, general practitioners, diabetes nurses

and organizations. Among them, the declaration expressed

(educators) and representatives of the patients’ organisation,

that there is a need to “Establish monitoring and control

The Swedish Diabetes Association. Since then, the health

systems using state of the art information technology, for

centres inform patients that they are reported to relevant

quality assurance of diabetes health care provision and for

quality registers; there are several in different diagnoses. It is

laboratory and technical procedures in diabetes diagnosis,

however possible for a patient to demand to be excluded from

treatment and self-management.”

a quality register, although this rarely happens.

control and the presence of diabetes complications. This set of

¨ * Corresponding author at: Institute of Medicine, University of Gothenburg, Sahlgrenska University Hospital, S-413 45 Goteborg, Sweden. Tel.: +46706042380. E-mail address: [email protected] (B. Eliasson). 0168-8227© 2014 Elsevier Ireland Ltd. All rights reserved.

S292

¨ B. Eliasson, S. Gudbjornsdottir / Diabetes Research and Clinical Practice 106S2 (2014) S291–S294

No. of paents with diabetes reported

400,000 Hospital clinics Primary care Total 300,000

200,000

100,000

19 96 19 97 19 98 19 99 20 01 20 02 20 03 20 04 20 05 20 06 20 07 20 08 20 09 20 10 20 11 20 12 20 13

0

Year Fig. 1 – Number of patients with diabetes reported to NDR 1996–2013. Number of patients is reported to NDR annually. Number of inhabitants in Sweden 9.5 million (2012), total diabetes prevalence uncertain but probably less than 5% (Jansson et al. Prevalence and incidence rate of diabetes mellitus in a Swedish community during 30 years of follow-up. Diabetologia 2007;50:703–10).

2. Development Initially most patients in the registry had type 1 diabetes and were reported from diabetes outpatient clinics in hospitals. At the turn of the century, a web-based interface was created, allowing any caregiver, in primary care and in hospitals with patients with type 1 or type 2 diabetes, to participate, and the number of patients steadily increased after that (Fig. 1). As computerized medical records systems have developed, the number of patients reported directly from such have markedly increased, reaching around two thirds of all patients in the NDR today, reducing the amount of duplication of work to a minimum. It has been a challenge to offer various modes of reporting patients to NDR, in order to comply with the wishes and demands of caregivers, organisations and experts, since all information must be stored in the same format in a central database. Thus, there is always a need for on-going validation of the imports of data from different sources, due to updates and new functions in medical record systems. Today many clinics use templates within the medical record systems to verify that all information relevant to good quality assurance in diabetes care is complete, and thereafter export these data to NDR. In order to create extra value, the NDR web interface, online at ndr.nu, and some medical records systems offer functions to use when interacting with the individual patient, such as reports of all information reported to NDR, including medications and risk-factor control, as well as other information, e.g., regarding referrals and planned appointments. Today NDR is a part of the Center of Registers (RC) at the Region of Western Sweden, located in Gothenburg. It is funded partly by this local health care provider, and partly by The Swedish Association of Local Authorities and

Regions after applications every third year. RC is staffed by personnel working exclusively with NDR but also by statisticians and engineers involved in the development and maintenance of other national quality registers, such as those for psychiatric and pulmonary diseases as well as the Swedish Hip Arthroplasty Register. NDR has a steering committee consisting of representatives of the bodies that once participated in the launching of it, a scientific advisory board and a working group. The latter takes part in the methodological development, and authoring the annual report as well as many of the scientific publications. Health care in general and diabetes care in particular is almost exclusively publicly funded in Sweden. This is made possible by tax rates that are among the highest in the world, funding a relatively generous social security program as Sweden spends more of its GDP on social services than almost any other country. Health care is therefore, to some extent, supervised by national bodies and the regional health care providers, which also require the health centres to participate in national quality registers. A couple of regions have even used clinical results as a partial basis for reimbursement. These circumstances are likely to contribute to a high degree to the large proportion of patients reported to NDR annually.

3. Reporting of the results The annual report is the most important publication by the NDR. In recent years it is being distributed very rapidly, only months after the last data have been entered (deadline mid January). It contains characteristics of the population of patients with type 1 and type 2 diabetes in Sweden, including national means of risk factors, treatments, complications and procedures such as eye and foot examinations. It also

¨ B. Eliasson, S. Gudbjornsdottir / Diabetes Research and Clinical Practice 106S2 (2014) S291–S294

presents regional results of the hospital-based clinics (mainly type 1 diabetes) and general practice. Clinic-specific results are also presented in the report but not yet results of the individual general practices due to small numbers of patients and possible lack of representativity. In previous years each clinic and practice also got their aggregated results, compared with the years before and with national means of the appropriate care level. Recently, however, the clinics and practices are encouraged to download their results via the web interface, ndr.nu. At that website, which is protected by state of the art security measures, standard statistics are generated in real-time and readily available. It also very easy to generate tailored statistics, e.g., results in specific age groups, gender, or other patient groups, and it is possible to generate lists of individuals fitting such criteria. Results in the various regions of the country are also produced and delivered to regional representatives of the health-care provider and appointed professionals in diabetes care. These reports are usually used to scrutinize regional results to find areas that must be improved. Furthermore, NDR takes a very important part in the follow-up of national guidelines. The National Board of Health and Welfare develops these in many diagnoses in collaboration with experts. The latest version of the national guidelines for diabetes care, which were developed according to GRADE [2], was published in 2010 and is currently being updated. Results from NDR, as well as other official sources (e.g., in-patient register, death register) are used to monitor health care, i.e., clinical results and use of methods, in different diagnoses, including diabetes. Furthermore, NDR has for more than ten years been working with different improvement projects in a large number of diabetes teams in everyday clinical care (both in primary care and in hospital clinics). Findings from these projects suggest that the register-based improvement approach can help closing the gap between clinical practice and evidencebased guidelines in the participating centres (unpublished results).

4. Scientific analyses The first scientific publication from NDR, in 2003, entitled “The National Diabetes Register in Sweden. An implementation of the St. Vincent Declaration for Quality Improvement in Diabetes Care”, was a description of the quality register, the mean characteristics of the patients and development in risk factors between 1996 and 1999 [3]. Thereafter followed publications addressing the prevalence of risk factors, e.g., hypertension, microalbuminuria, smoking, and obesity, mainly in type 2 diabetes but also in type 1 diabetes. A subsequent report focused on the gap in real-life clinical care between treatment guidelines and actual results 1996–2003 [4], but after that a number of studies addressed the associations between risk factors and cardiovascular disease and death. This was made possible through linkage between NDR and the Swedish Cause of Death Register and Hospital Discharge Register (National Board of Health and Welfare, Sweden). After 2005 also complete data regarding all prescriptions filled in all pharmacies are available. Linkage of data from different

S293

sources is relatively easy technically, since all databases and registers use the same 10-digit unique identifier, formatted as 891012–1234 (year/month/day of birth followed by three random digits and a control digit). Recent studies from NDR have shown: • Congestive heart failure is commonly incident in type 1 and type 2 diabetes and related to glycemic control [5,6]. • Blood pressure levels around 130–135/75–79 mmHg are associated with lower risks of cardiovascular disease in patients with type 2 diabetes [7]. • The non-HDL:HDL-cholesterol ratio is a better marker of risk for CHD than LDL-cholesterol in type 2 diabetes [8]. • Metformin treatment lowers risk of cardiovascular disease in type 2 diabetes also in patients with renal impairment (estimated glomerular filtration rate, eGFR, 45–60 ml/min/1.73 m2 ) and is not associated with increased risk in patients with eGFR 30–45 ml/min/1.73 m2 [9]. • Low physical activity leads to a 25% greater risk of coronary and cardiovascular events than high activity, and 70% greater risk of a fatal CV event in type 2 diabetes [10]. There are currently ongoing projects in different areas, such as evaluations of: • The effects of oral hypoglycemic agents and insulins in type 2 diabetes. • The role of ethnicity and migration. • Renal disease in type 2 diabetes. • Cancer in diabetes mellitus. • Patient-reported outcomes in diabetes care. • The incidence of type 1 and type 2 diabetes. Many of these, as well as planned studies, have been conducted in collaboration with scientists in various fields of medicine, increasingly making use of linkage with more official databases and quality registers. Today it is required by the funding bodies to develop the analytical methods by quality registers, and to widely spread information, including publishing in scientific journals. This role also includes mentoring research students.

5. Directions for the future Today NDR is an obvious part of diabetes care in Sweden, serving multiple purposes for the benefit of the patients. The original purpose, to monitor the results of health centres from year to year and to compare these with national and regional means, is still the most important one, while continuous follow-up of guidelines, treatments and complications are as important on a national level. Indeed, a recent report from the National Board of Health and Welfare confirmed that results in diabetes care generally are positive and slowly improving, but that emphasis must be placed on continued improvement in [11]: • The proportion of patients with unsatisfactory glycemic control. • The number of leg amputations. • The proportion of patients checked for microalbuminuria. • The proportion of patients with regular physical activities. • The number of smokers. • Providing patient education in groups. • Providing culturally adjusted patient education. Porter and Teisberg declared “Measurement and public reporting of patient results is the single most important step

S294

¨ B. Eliasson, S. Gudbjornsdottir / Diabetes Research and Clinical Practice 106S2 (2014) S291–S294

in reforming health care systems …” [12]. NDR, which is an emasculation of the Saint Vincent declaration, is proving this statement to be right.

Conflicts of interest The authors have no conflicts of interest to declare.

Acknowledgments The NDR working group (Ann-Marie Svensson, Katarina Eeg¨ Olofsson, Bjorn Zethelius and Jan Cederholm) is gratefully ¨ acknowledged. Bjorn Eliasson is also member of the NDR ¨ working group, Soffia Gudbjornsdottir is register manager.

References 1. Diabetes care and research in Europe: the Saint Vincent declaration. Diabet Med 1990;7:360. 2. Guyatt GH, Oxman AD, Vist GE, Kunz R, Falck-Ytter Y, Alonso-Coello P, et al. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ 2008;336:924–6. ¨ 3. Gudbjornsdottir S, Cederholm J, Nilsson PM, Eliasson B; Steering Committee of the Swedish National Diabetes Register. The National Diabetes Register in Sweden: an implementation of the St. Vincent Declaration for Quality Improvement in Diabetes Care. Diabetes Care 2003;26: 1270–6. ¨ 4. Eliasson B, Cederholm J, Nilsson P, Gudbjornsdottir S; Steering Committee of the Swedish National Diabetes Register. The gap between guidelines and reality: Type 2 diabetes in a National Diabetes Register 1996–2003. Diabet Med 2005;22:1420–6.

5. Lind M, Olsson M, Rosengren A, Svensson AM, Bounias I, ¨ Gudbjornsdottir S. The relationship between glycaemic control and heart failure in 83,021 patients with type 2 diabetes. Diabetologia 2012;55:2946–53. ¨ 6. Lind M, Bounias I, Olsson M, Gudbjornsdottir S, Svensson AM, Rosengren A. Glycaemic control and incidence of heart failure in 20,985 patients with type 1 diabetes: an observational study. Lancet 2011;378:140–6. ¨ 7. Cederholm J, Gudbjornsdottir S, Eliasson B, Zethelius B, Eeg-Olofsson K, Nilsson PM, et al. Blood pressure and risk of cardiovascular diseases in type 2 diabetes: further findings from the Swedish National Diabetes Register (NDR-BP II). J Hypertens 2012;30:2020–30. ¨ 8. Eliasson B, Gudbjornsdottir S, Zethelius B, Eeg-Olofsson K, Cederholm J; on behalf of the NDR. LDL-cholesterol versus non-HDL-to-HDL-cholesterol ratio and risk for coronary heart disease in type 2 diabetes. Eur J Prev Cardiol 2014;21:1420–8. ¨ N, Schioler ¨ 9. Ekstrom L, Svensson AM, Eeg-Olofsson K, Miao Jonasson J, Zethelius B, et al. Effectiveness and safety of metformin in 51 675 patients with type 2 diabetes and different levels of renal function: a cohort study from the Swedish National Diabetes Register. BMJ Open 2012;2. doi: 10.1136/bmjopen-2012-001076. ¨ 10. Zethelius B, Gudbjornsdottir S, Eliasson B, Eeg-Olofsson K, Cederholm J; Swedish National Diabetes Register. Level of physical activity associated with risk of cardiovascular diseases and mortality in patients with type-2 diabetes: report from the Swedish National Diabetes Register. Eur J Prev Cardiol 2014;21:244–51. ¨ 11. Nationell utvardering 2011. Diabetesvård. Landstingens och kommunernas insatser. 2012. 12. Porter ME, Olmsted Teisberg E. Redefining Health Care. Creating Value-Based Competition on Results: Harvard Business School Publishing; 2006. p 432.

Diabetes care--improvement through measurement.

The National Diabetes Register (NDR) of Sweden was initiated in response to The Saint Vincent Declaration (published 1990), to provide a tool for cont...
856KB Sizes 0 Downloads 4 Views