Quality measurements for the Lung Cancer Registry of Norway
The main objective of the National Quality Registry for Lung Cancer is to contribute to mapping the assessment and treatment given to lung cancer patients to ensure that it is in line with the National Action Programme with guidelines for diagnosis, treatment and follow-up of lung cancer, regardless of place of residence.
The Lung Cancer Registry collects data on the assessment and treatment of this patient group. The purpose is to use the data from the registry to illustrate practice in hospitals and can be helpful in assessing practice in individual hospitals and for the patient group as a whole.
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 a national quality indicator. For lung cancer, curative treatment and five-year relative survival are national quality indicators.
In order to assess the health care provided to patients with lung cancer, the professional council has developed specific quality indicators:
The data quality in the report is dependent on a high enrollment rate for the two clinical reports, examination and surgery. Both are in the green zone again this year. The fact that over 90% of the country's patients are registered with clinical reports for both examination and surgery means that the National Quality Register for Lung Cancer can present representative figures. A high degree of coverage also increases the possibility of doing research on and deep diving into the numbers.
The time elapsed from the completion of the investigation and the surgical intervention to reporting is considered to have an impact on data quality. Therefore, the professional council has decided to introduce the two new indicators "Proportion of investigation reports reported within 7 days after treatment decision" and "Proportion of surgical reports reported on the day of surgery". Both are currently red, but the hope is that these will also eventually turn green.
EBUS is included as a new process indicator as this assessment modality is becoming more and more important in differentiating between operable and non-operable patients, and whether surgery should be carried out first or preceded by drug treatment. The target number here is currently more to be considered a trial balloon. As more experience is gained with the use of EBUS in Norway, the target figure will probably be adjusted.
The indicator for removal of lymph node station 7 during surgery is included because this illustrates the thoroughness of the surgery that is carried out and because the station is considered an important route of spread for lung cancer. The target number here is therefore set high.
The target figure for the proportion that is discussed in interdisciplinary meetings before a decision on curative treatment is set extra high to ensure that all relevant patients are discussed with a thoracic surgeon present. Likewise, the figure for PET/CT is set very high to emphasize the importance of patients with suspected localized disease being examined to ensure that they do not have hidden macroscopic metastases. A good examination is crucial to being able to offer the patient the right treatment.
Quality improvements
Identification of patient-oriented areas for improvement:
- There are healthcare organizations that do not reach the target for the proportion of curatively treated patients of 35%
- There are large differences between the health institutions in the proportion of patients who have an EBUS/EUS examination carried out
- The proportion that is examined with PET/CT in the primary examination is still not above the target that has been set, and several healthcare institutions have large variations from year to year
- Proportion of operations where lymph node station 7 is removed
Regional differences in the proportion treated curatively in Helse Sør-Øst in the period 2016-2020.
In 2022, the National Quality Register for Lung Cancer took the initiative for a quality improvement project in collaboration with Sykehuset Innlandet HF, Sykehuset Telemark HF and OUS HF. Sykehuset Innlandet HF and Sykehuset Telemark HF had already initiated measures on their own initiative based on residual results from the annual reports from the Lung Cancer Register from 2018 and 2019.
Measures taken by Sykehuset Innlandet HF in 2020/2021: The pulmonary section at Elverum Hospital has created a weekly program where all package procedures are discussed. Test answers and examinations are checked and any missing information is pointed out.
It is also investigated whether the patient has been scheduled for an MDT meeting. Gjøvik Hospital has adopted similar measures and Lillehammer Hospital is working on implementing the same. Measures taken by Sykehuset Telemark HF in 2020/2021: Improved routines to ensure that all patients are appointed to the MDT meeting, as well as reviewed the procedure for package progress.
The annual report from the Lung Cancer Register for 2021 showed an increased proportion of curatively treated patients at both Sykehuset Innlandet HF and Sykehuset Telemark HF. Both health institutions were above the stated target of 35%. In 2022, Sykehuset Innlandet HF had 39% curatively treated patients and Sykehuset i Telemark had 35%. This is an improvement from 33 and 30% respectively in 2018.
Curative treatment - Healthcare organizations that still do not reach the target for the proportion of curative treatment of 35%.
In 2023, Helse Førde HF was offered similar analyzes as Helse Sør-Øst. Helse Førde HF has few patients and natural annual variations that can have a big impact. Helse Førde HF has a high proportion of patients in stage IV, but the patient composition is not significantly different from the national average in terms of age distribution and histology.
The lung cancer registry has resumed contact with Helse Førde after the results from 2023 became known. Helse Førde will be sent lists of the patients included in this year's analysis so that they can review the patient history of patients diagnosed in 2023.
There are large differences between healthcare organizations in the proportion of patients who have an EBUS examination carried out.
In recent years, the professional council has focused on the use of EBUS in the investigation of lung cancer with analyzes in the annual reports. Nationally, the proportion of lung cancer patients who are examined with EBUS has increased from 21.3% in 2020 to 44.0% in 2023, but there is still a significant spread between the healthcare institutions.
The professional council decided in the autumn of 2023 to make the proportion of patients examined with EBUS (or EUS) a process indicator where a high target attainment is set at geq 45%. These numbers cannot say anything about the quality of the survey. The professional council is working to find a solution to this, but still believes that the indicator is important to equalize the differences between the health institutions.
The annual reports for 2021 and 2022 showed that, among other things, St. Olav's HF had a share examined with EBUS around 50%. In the annual report for 2023, the proportion has increased to 78% following greater focus on good lymph node diagnostics nationally and locally.
See more results in Annual report 2023 Lung cancer (Norwegian only).
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 the collection of PROM and PREM (patient-reported outcome and experience measures), including integration with ePROM, which is the national solution for obtaining PROMs.
During 2022, all of the Cancer Registry's quality registries will collect PROMs data. There is no legal basis in the Cancer Registry Regulations for collecting PROMs, and the collection therefore has its basis for treatment in the Regulations relating to population-based health surveys. The National Quality Registry for Lung Cancer starts with routine collection of PROMs/PREMs in 2022.
So far, the response rate is low, as has been seen with the introduction of PTOM/PREM for other cancer groups. It is hoped that the response rate will increase as this becomes known in the community, both among patients and health personnel.
See results from the survey in the annual report (Norwegian only)