Stroke is one of our most common diseases with very large consequences for the patient, relatives and society. The societal costs have been calculated at 18 billion annually. Even moderate progress in the quality of stroke care brings great benefits to the individual and society.
Riksstroke contributes to maintaining a high and uniform quality of stroke care throughout the country. Riksstroke reports the content and results of stroke care openly to the public, patients, professions and decision-makers and is a follow-up instrument for national guidelines for stroke care. National stroke forms the basis for register-based stroke research and continuous improvement work.
Riksstroke collects, analyzes and follows up data on illness and hospitalization. For acute stroke, it also conducts a questionnaire-based follow-up after three months and after 1 year, which provides valuable additional information about stroke patients’ health and functional capacity. In 2022, no 1-year follow-up was performed. Strokes began to be registered in 1994, and since 1998 all hospitals that care for patients with acute stroke participate, and in 2021 approx. 20,000 cases were registered in the register. TIAs began to be registered in 2010 and in 2021 approximately 9,000 cases were registered. 71 out of 72 hospitals registered TIA in 2021. 2021 was the second year spontaneous SAH was registered in Riksstroke. In 2021, 5 neurosurgery clinics (Akademisk Sjukhuset, Karolinska Sjukhuset, Linköping University Hospital, Norrland University Hospital in Umeå and Skåne University Hospital Lund) registered, as well as a further 37 other hospital patients with spontaneous subarachnoid haemorrhage. From 2016, hospitals can voluntarily register nursing variables in Riksstroke.
In Riksstroke, patients with acute stroke (acute ischemic stroke, intracerebral haemorrhages, stroke with unknown ischemia or haemorrhage, subarachnoid haemorrhage) and TIA (transient ischemic attacks) are registered. The patients are treated in hospital or have sought hospital care. Barnriksstroke will be part of Riksstroke at the end of 2022.
Riksstroke is led by a nationally composed steering group consisting of a chairman (register holder) and an interdisciplinary group, including a representative of the patient organization. The steering group ensures Riksstroke’s operations – which, among other things, a involves development, governance, quality assurance, ensuring that financial frameworks are followed and being helpful in applications (grants). The steering group must also stimulate and/or carry out research based on National Stroke Data. Riksstroke is organized under Registercentrum Norr, Region Västerbotten. Most of Riksstroke’s practical work is carried out by an office located at Norrland University Hospital. The business must be designed to meet the requirements of a national quality register.
Professor Mia Von Euler
Since 1994, the register has been financially supported by the National Board of Health and Welfare and Sweden’s Municipalities and Regions.
Riksstroke is certified as a level 1 quality register.
Diseases of the nervous system.
The development of Riksstroke has taken place in various phases in collaboration with, among others, the Swedish Internal Medicine Association, the Swedish Neurologist Association, the Swedish Nurses’ Association and the Aphasia Association. Through its steering group representatives, the patients’ association STROKE – Riksförbundet has a direct influence on Riksstroke’s operations. For a series of follow-ups, we have collaborated with the National Board of Health and Welfare. For municipal comparisons, Riksstroke has collaborated with the National Association of Medically Responsible Nurses (MAS). Parts of the steering group have led SoS’s work with new national guidelines for stroke care and have very actively participated in SoS’ follow-ups of the national guidelines for stroke care. Several of Riksstroke’s steering group participate in various projects as experts. Participates in various steering and preparation groups, including the National Board of Health and Welfare’s National Guidelines for Stroke Care, the structured and coherent course of care for stroke and National and regional working groups for Stroke. The registry holder represents Sweden in SAP-E (Stroke Action Plan – European Stroke Organization (eso-stroke.org)).
Riksstroke is basically the only data source for monitoring changes in the quality and results of healthcare, and data from Riksstroke has had a strong feedback to healthcare and is one of the best examples of how quality register data has been able to be integrated into the “quality circle”, and within the national knowledge management. Changes in stroke care have been rapid in many areas, and changes have been seen from one year to another. Current examples are the use of thrombectomy and treatment with anticoagulants after ischemic stroke with atrial fibrillation, where we see a dramatic increase. Studies based on National Stroke have also shown that outcomes after stroke have improved regarding, among other things, survival, risk of relapse and functional ability (self-reported ADL). Riksstroke has also been able to show areas where rapid improvements have been more difficult to implement, e.g. direct admission depending on shortage of care places. Riksstroke has also made clear the large differences that exist in the quality of care between different regions, which has received a lot of attention. With regard to the care process, Riksstroke shows:
• Increased percentages of patients receiving stroke unit care, thrombolysis, thrombectomy, anticoagulants as secondary prevention.
• Reduced door-to-needle times in thrombolysis.
• The register has also shown “threatened areas” where improvements are more difficult to implement due to structural problems in healthcare.
In 2021, 20,228 care occasions were registered. From 2010 until 2017/2018, a reduction in the number of stroke cases has been seen, which is perceived to reflect better preventive measures against stroke. During these years, the register has had a stable, high coverage rate. To calculate the coverage rate, coordination between the patient register (PAR) at the National Board of Health and Stroke has been carried out since 2002. First-time stroke cases are compared between the two registers. Riksstroke has chosen to compare first-time admissions instead of all stroke admissions, because the practice for which diagnosis is made in the event of readmission for another reason and in the event of readmission varies between hospitals. Detailed validations carried out by Riksstroke in collaboration with the National Board of Health and Welfare have shown that there is a certain overdiagnosis of acute stroke in routine healthcare (Köster, Johansson, Asplund, Stegmayr: Neuroepidemiology 2013;40:240-46). If you correct for this, the coverage rate in Riksstroke is about 95%.
Analysis and feedback
In a dashboard, users can directly see the indicators online, something that was appreciated according to a user survey. Annual reports with open comparisons and analyzes are published for the acute phase, and for follow-up after 3 and 12 months. They are distributed very widely to relevant stakeholders. Riksstroke organizes annual user meetings. National stroke data are also reported in Open Comparisons, Care in Figures, and in the reports of the National Stroke Council and the National Board of Health and Welfare.
Riksstroke has close contact with the Norwegian stroke register, and a representative of Riksstroke is part of the Norwegian steering group. Riksstroke has started a collaboration with the English quality register for stroke, SNNAP. This register was established a few years ago with Riksstroke as a model. A number of the register’s variables are therefore the same and the data are easily comparable. In 2017–18, the European stroke organization ESO made a compilation of European data on stroke care quality, to which Riksstroke participated. A European initiative to establish permanent European cooperation in quality issues has been started.
Design, measurements and coverage
This section provides a brief description of the Riksstroke methodology. A more detailed description is available.
Information collected in Riksstroke
For each individual patient, a case record is used to collect data from before onset, during the hospital stay and at discharge. A separate record is used for the 3-months and 1 years follow-ups by questionnaire. English versions of the case records are available at https://www.riksstroke.org/forms/
Riksstroke includes information on several dimensions of stroke care:
- The entire chain of stroke care, i.e. primary prevention, acute management, rehabilitation, secondary prevention and family and community support
- Both process and outcome variables
- Five dimensions of healthcare quality as defined by the US Institute of Medicine and the National Board of Health and Welfare are included in Riksstroke: Evidence-based health care, safe, provided in time, distributed fairly and patient-oriented.
To analyse processes and outcomes in relation to case-mix, a number of background variables are recorded.
Examples of information collected
- Living conditions (at home, in institution)
- Marital/cohabitant status
- Primary ADL functions before stroke
- Previous stroke
- Level of consciousness on admission Time to arrival in hospital
- Admission to stroke unit
- Diagnostic procedures
- Oral anticoagulants after cerebral embolism
- Other antithrombotic therapy
- Antihypertensive therapy
- Access to rehabilitation after discharge
- Length of hospital stay
- Medical complications during hospital stay
- Discharge status
- Survival at 3 months
- Living conditions at 3 and 12 months
- ADL dependency at 3 and 12 months
- Support by next-of-kin at 3 and 12 months
- Patient satisfaction with hospital stay and rehabilitation after discharge
- Low mood at 3 and 12 months
- Perceived general health at 3 and 12 months
Information to patients
Quality monitoring is, by law, required in the Swedish healthcare system. As an instrument for quality assessment, Riksstroke is a component of the regular healthcare system rather than a research project but patient information is compulsory and the patient can, after information, choose to refrain participation – an opt-out procedure. Riksstroke have chosen to provide the patient information. Patients are most often informed in writing
- on the purpose of Riksstroke
- on what type of information that is collected during the acute phase
- on the 3-month follow-up questionnaire
- that the register is confidential
- that participation in Riksstroke is voluntary, that every participant has, by law, the right to know what data is being recorded and that it is possible to withdraw participation (opt-out procedure)
- on permit by the Swedish Data Inspection Board
- on contact addresses
If the patient is unable to communicate, a next-of-kin receives this information. A translation into English and other languages of the written information is available http://www.riksstroke.org/patient-information/
Data capture and handling
All acute stroke incidents in hospitals are to be registered. Data is usually collected through completion of printed forms during the hospital stay. At 3 months after stroke, patients are asked to respond to a questionnaire by letter, phone or at a return visit. If the patient is unable to respond, the questionnaire is filled in by a next-of-kin or by healthcare/social service staff.
The recorded data is transferred to the Riksstroke data base managed by Umeå University computer center. Control functions to ensure the accuracy of personal identity number, sex, dates, etc., are embedded in the data entry software and only valid response alternatives are accepted.
Patients who had a stroke in December should be follow-up during April and all incidents from the preceding full year and the associated 3 month follow-ups must be recorded by the participating hospital by 30th April. National data and between-hospital comparisons are processed by the Riksstroke secretariat in April/May.
In a similar way, TIA incidents treated in hospitals are registered through completion of printed forms during the hospital stay. This record shares many of the items from the acute stroke record but is more focused on diagnostics and treatment procedures and does not include a 3- and 12 months follow ups.
In addition to promoting the development of quality of stroke care in Sweden, Riksstroke provides a unique database for research on stroke services in routine clinical practice.
Articles based on Riksstroke data see here. In addition, Riksstroke data (with abstracts) have been presented at numerous national and international meetings.