The Swedish Hernia Register
The Swedish Hernia Register (SHR) contains data on all groin (inguinal and femoral) hernia repairs performed in patients aged 15 years or older. The register was initiated in Motala in 1992 by Professor Erik Nilsson, as a local project including 8 surgical centers, but rapidly grew to become nationwide. Since more than two decades, virtually all Swedish centers (n > 90) performing hernia surgery participate, and almost 100% of all groin hernia repairs performed in Sweden are registered. By December 2023, the SHR database comprises more than 400 000 groin hernia repairs.
The Register Steering Group comprises professionals who represent different parts of hernia patient care, different parts of the country and different types of surgical units.
From 2024 onwards, the SHR incorporates the former Swedish Abdominal Wall Hernia Registry and henceforth also records incisional (including parastomal) and primary ventral hernias.
Purpose and aims
• To survey the development of hernia surgery in Sweden in terms of methods of repair, waiting times, care policies, and results.
• To create a reliable base for local evaluation of treatment outcome
• To enable epidemiological studies and support prospective randomized controlled trials
Financing
The SHR is primarily funded by Swedish taxpayers, through the National Board of Health and Welfare, and the Swedish Association of Local Authorities and Regions. There are no commercial sponsors involved.
Responsibility for personal data
Having one’s hernia repair registered is voluntary; a patient can without explanation either at first refuse to participate, or at any time later exit the register.
Registercentrum Norr, Region Västerbotten, is the personal data controller for SHR.
Registered data and follow-up
The SHR prospectively collects demographic, perioperative, and postoperative data including adverse events and vital status. These data are linked using Swedish personal identity numbers, thereby ensuring comprehensive patient coverage. Reoperations are registered similarly to index repairs.
Follow-up ends at death, emigration, or upon patient request. Deaths and emigrations are weekly updated from the Swedish Population Registry, ensuring complete follow-up.
Data on waiting list times prior to surgery are also recorded. Sweden has an independent website "Väntetider i vården", where estimated waiting times for different procedures in each county are given.
Validation of data
The register annually validates registered data at 7-10 randomly selected centers. An appointed professional, external to the validated unit, compares recorded data with patient notes. Results are reported to the validated center, as well as to the SHR steering group.
Overall, the proportion of correctly registered variables is high at around 98%, as shown in a study by Axman published in Clinical Epidemiology in 2021.
Utilization of SHR data
Quality control of hernia surgery in Sweden is an important objective of the SHR. The primary aim of SHR is to improve hernia care at the participating centers. The reoperation rate can be used as an inverse measure of healthcare quality.
The data also forms the basis for scientific investigations. Research projects aimed at exploring risk factors for complications and long-term pain after hernia surgery, comparing different mesh materials and fixation techniques, assessing methods of repair for recurrence, and repair in women are presently under way.
Responsibilities within SHR
Each unit reporting to the register is responsible for the accuracy of the data recorded.
The Register Steering Group is responsible for processing the data and presenting it adequately.
Participation in the register is voluntary for hospitals and operating units and, of course, for the patient.
The National Board of Health and Welfare, and the Swedish Association of Local Authorities and Regions, have no influence on the information provided at this website.
Annual reports
A report with overall national data is published each year. In tandem, SHR releases specific accounts of each county and for each center, public and private. All reports are downloadable as PDF files (in Swedish) from this website.
Data interpretation
The SHR was not conceived or designed for head-to-head comparison of surgical centers. The data is ideally used for assessing outcomes over time at one center, or for analyzing specific variables at a national level.
Data from the register shows that there are differences between centers. The reasons behind these differences, however, cannot be determined. Differences in outcomes may be due to circumstances that vary between centers. Units that perform more emergency surgery, more reoperations after previous repairs, or more technically demanding repairs may, for example, have more postoperative complications, higher rates of recurrence and longer hospital stay. Comparisons not taking these circumstances into consideration are thus misleading.