Quality measurements for the Colorectal Cancer Registry

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The results from the registry can be used to document treatment and results of treatment at the national level, but can also be useful for assessing practice in individual hospitals.

For the past three years, the Colorectal Cancer Registry and the expert group have presented quality indicators with defined target figures. All indicators have also been reviewed and assessed this year.

The Norwegian Gastrointestinal Cancer Group Colorectal (NGICG-CR), which is the reference group for the National Colorectal Cancer Registry, has been commissioned by the Norwegian Directorate of Health to prepare national guidelines for colorectal cancer. The health care patients receive should follow the recommendations found in the Colorectal Cancer Action Programme.

The Norwegian Directorate of Health has previously defined 5-year relative survival for patients diagnosed with colorectal cancer as national quality indicators. The Cancer Registry of Norway and the Professional Council cooperate with the Norwegian Directorate of Health to give a selection of the professional community's quality objectives the status of national quality indicators. Due to resource limitations in the Norwegian Directorate of Health, no new national quality indicators for colorectal cancer have been established in 2022.

Quality indicators

The quality indicator is an indirect measure and says something about the quality of the area being measured. The quality indicators should be seen in context in order to provide a comprehensive picture of the quality of the health services provided to patients with colorectal cancer. They are also important for assessing whether the recommendations in the «National action programme with guidelines for diagnosis, treatment and follow-up of colon and rectal cancer» are being followed.

Quality indicators colon cancer


Figure 1.1: Colorectal cancer quality indicators - 2023. From Annual report for colon and rectal cancer 2023.

The results for the quality indicators for colorectal cancer show that seven out of nine indicators have good goal attainment and two have moderate goal attainment. The coverage rate for clinical examination reports is 78.9 %, while for surgery reports it is 88.7 %. This is due to the fact that not all patients receive treatment in surgical wards, and there is a need to ensure good local routines for responsibility for the assessment report. 

Relative survival for patients with stage I–III colorectal cancer five years after surgery is 89.6% and remains stable. There are also few patients who die within 100 days after elective surgery and postoperative mortality is 2.3 %. The proportion of patients who do not metastase to other organs is 86.5 %, and has been stable in recent years. The proportion of patients (all stages) who survive five years after diagnosis is 70.6%.

The proportion who undergo laparoscopic surgery is still increasing, and most hospitals have achieved good results. How many people are being examined for MSI or MMR under the age of 60 is a new indicator this year and is shown overall for colorectal cancer. The result shows moderate goal attainment of 76.9%.

 
In 2021-2022, the Colorectal Cancer Registry conducted a quality improvement project to look at the reporting of peritoneal metastases to the registry. See the report form the register for a more detailed description .

Quality improvements

The Norwegian Colorectal Cancer Registry provides updated information on this patient group, which is important when the expert group discusses national guidelines. There are several examples of how results and mapping from the register are useful as a background for the professional discussions in the group. The results from the registry can be used to document treatment and results of treatment at the national level, but can also be useful for assessing practice in individual hospitals.

There is always a balancing act between how much information must be collected to provide answers to desired questions in relation to how much workload the number of information provides for those who are to report. Most of the important recommendations on assessment and surgery in the national guidelines are included as variables in the registry.

The registry collects information on whether the patient undergoes open or laparoscopic (keyhole) surgery. Results in this year's report show that laparoscopic technique has increased steadily for both colorectal cancer, and long-term survival is as good as with open surgery. The national guidelines regard open and laparoscopic surgery as equivalent techniques that complement each other.

The annual report publishes results at institutional level for selected variables reported to the register. This will form the basis for local improvement measures, so that patients can be ensured equal treatment regardless of place of residence.

The following patient-oriented improvement areas are identified in this year's report:

Specified distance from tumor to mesorectal fascia (MRF) – rectal cancer:

The Academic Council wishes that the recommendation on the use of radiology templates is followed, so that the necessary information is available in MDT meetings. The professional council will follow up hospitals with low goal attainment (below 60%) and implement measures to increase the use of structured radiology templates. Based on last year's results report, the registry has applied for funding for a project to map the cause of insufficient reporting of distance from tumor to MRF. The work is still ongoing, and all hospitals that had low target achievement in last year's report have been sent a project description.

Møre and Romsdal Health trusts, Ålesund has given feedback that they receive a structured MRI description for all rectal cancer cases, they had a result for the indicator of 51.5% in 2022. Based on last year's result, they have had an internal meeting with the gastrosurgeons and discussed documentation of the MRF to the registry, they have also given feedback to the radiology department that all cases should be given a target distance to the MRF.

The results for the quality indicator show variation between the hospitals, the national result has moderate target achievement of 66.8% in 2023. For Møre and Romsdal health trust, Ålesund there is a small increase compared to the spring, the results showed 51.5% in 2022 and are 58.3% in 2023, we will have to wait until next year to see the effect of the measures they have implemented.

Proportion operated with laparoscopy (including robotic surgery) 2021-2023

Radiumhospitalet has previously had low target achievement on the proportion operated with laparoscopy (including robotic surgery) for rectal cancer. In the annual report for 2021, Radiumhospitalet had a result of 54.2%. Radiumhospitalet has a selected group of patients with more widespread disease than the other hospitals, all given neoadjuvant treatment, and a large proportion of T4b. In 2021/2022, the surgeons at Radiumhospitalet have introduced a robot-assisted platform to reduce the proportion of operations with open surgery.

Results for Radiumhospitalet in the annual report for 2022 showed high target attainment with 72.7%, The results in this year's report are lower compared to last year, and show moderate target attainment of 69.4%. This is still a higher result than Radiumhospitalet had before the measures were implemented.

Read more about improvement areas and improvement initiatives in the Annual report for colorectal cancer 2023.

Postoperative mortality

Risk of death within 100 days after surgery for colorectal cancer is an indicator of treatment-related risk associated with surgery. Indirectly, this goal will capture serious complications such as anastomosis leaks or organ failure. Modern intensive care means that deaths related to treatment can occur after a longer time interval than 30 or 60 days, and postoperative mortality is increasingly reported internationally for more than 100 days.

The registry does not contain variables that make it possible to correct well for other diseases or risk factors. Such information is registered in the Norwegian Registry for Gastrosurgery (NoRGast) and published in a separate annual report.

In Norway, postoperative mortality in 2023 was on average 1.4%, with only minor variations between hospitals. Hospitals that are above the target figure of 3% should quality-assure their results.

Proms

In order to further strengthen the quality of health services, the Cancer Registry of Norway has in 2019 and 2020 worked on planning and building an infra structure for collecting PROMs (patient-reported outcome and experience measures), including integration with ePROM (Patient Reported Experience Measures), which is the national solution for obtaining PROMs.

The National Colorectal Cancer Registry started with routine collection of PROMs/PREMs in 2021. The registry has been allocated funding from the Professional Centre for Patient-Reported Data to use ePROM. In order to distinguish between common ailments in the population and ailments related to colorectal cancer, a random sample of people without colorectal cancer are also invited to submit a questionnaire. 

Follow-up forms are sent out after one and three years. A selection of people without colorectal cancer, who have the same age, gender and residential composition as the cancer cases in the previous five years, are invited as a control group. The population survey is fully digital, and invitations are received in the inbox at Helsenorge.no or in Digipost/eBoks.

Not everyone is active at Helsenorge.no or has a digital mailbox, and the Cancer Registry reached 85% of colorectal cancer patients and 80% of the control group in 2023, an increase from 72% for both groups in 2021.

The questionnaire covers general and cancer-specific health and quality of life. In addition, participants are asked to answer questions related to specific topics associated with colorectal cancer.

Read more about the population surveys.

Figure 2.53: Health-related quality of life for patients in stage I-IV – colon and rectal cancer diagnosed in 2022 and control group, divided by stage. From the Annual report for colon and rectal cancer 2023.

The figure shows the average score for self-reported health and quality of life in patients with colon and rectal cancer in stages I-IV who have answered a questionnaire at diagnosis and/or one year after diagnosis, and for the control group at the corresponding time. Although there is some overlap, it is not
only the same patients who have answered both questionnaires, so the results cannot say anything specific about improvement in quality of life.

The results among the patients show a higher score on health and quality of life in the group that submitted questionnaire one year after diagnosis, compared to the group who responded at diagnosis. Both with diagnosis and one year after diagnosis, a higher quality of life is reported for stage I and II than patients in stage III and IV. The control group reports significantly better health-related quality of life than the patients at both times.