Quality indicators for the Prostate Cancer Registry
The health care patients receive should follow recommendations found in the National Action Programme with guidelines for diagnosis, treatment and follow-up of prostate cancer.
One goal of establishing a clinical registry is for the data to be used to improve the health service and, among other things, to provide knowledge that contributes to improving the quality of the health service. Improved treatment, prevention, health surveillance and new research are some of the contributions of a clinical registry. If information from the clinical registry shows visible differences in the quality of treatment, this will be a good reason to initiate projects to improve the quality.
The Cancer Registry of Norway, in collaboration with, among others, the pharmaceutical industry and the Norwegian Cancer Society, has joined forces in a project to establish a better overview of current drug cancer treatment, both with the existing and the new cancer drugs. The project has been named INSPIRE and aims to obtain data on drug treatment directly from professional systems in hospitals.
Medical cancer treatment is now reported regularly from the three largest health regions: South-Eastern Norway Regional Health Authority, Western Norway Regional Health Authority and Central Norway Regional Health Authority. For these three regions, data collection is largely complete for all local health authorities from 2019 onwards. Northern Norway Regional Health Authority is not included in the data collection, but will do so as soon as they have introduced a new professional system for drug cancer treatment. Medical cancer treatment that the patient takes at home, and which is prescribed on an H-prescription, is reported from NPR to the Cancer Registry. Here are complete data from 2019 onwards for the entire country.
Radiation data are not dependent on manual reporting, and complete vintages are sent to the Cancer Registry of Norway directly from the country's ten radiation units. The Cancer Registry of Norway has complete information on radiation therapy in Norway up to and including 2022.
The quality indicators in the Prostate Registry are measurable quantities intended to provide indications of the quality of prostate cancer care. When a threshold value for the quality indicators has been defined, this is a quality indicator that the Advisory board has chosen on the basis of international literature and national assessments.
To date, the Advisory board has selected six quality indicators that deal with the treatment of prostate cancer (process indicators). In addition, there are quality measures for clinical coverage for assessment reports, surgery reports and radiation notifications. The quality indicators are evaluated every year and adjusted in accordance with the latest knowledge.
In this year's report, the Advisory board publishes a new quality measure; compliance in clinical and postoperative stage assessment. The comparison of the tumour stage at diagnosis and in the surgical specimen must be made with the proviso that available diagnostic aids have limited sensitivity to the details included in the stage indications. Although a realistic measure of compliance is well away from 100 %, the hope is that this will stimulate higher quality and even more accurate diagnostics.
Based on the quality goals that have been set, there is a basis for saying that Norwegian men generally receive equal and good diagnostics and treatment. This year's report also includes more data on the treatment of patients with advanced metastatic prostate cancer. Obtaining data on medical cancer treatment has long been particularly demanding, but the INSPIRE project has given us a better data basis.
In November 2017, the national quality indicator for prostate cancer was updated from five-year relative survival after prostate cancer to five-year relative survival after high-risk prostate cancer. This is because high-risk prostate cancer often carries a greater risk of premature death from the disease, and 5-year relative survival for this patient group is likely to reflect treatment effort and quality to a greater extent.
Read more about quality indicators in the annual report for the Prostate Cancer Registry (Norwegian only)
Quality improvements
The quality register's annual report publishes results at institutional level for selected variables reported to the registry. This will form the basis for local improvement measures, so that patients can be ensured equal treatment regardless of place of residence. The registry engages in dialogue with departments that have divergent results both to clarify that the data are correct, but also to enter into dialogue about causes and possible measures.
Examples of initiated measures and improvements
The proportion of patients with a free resection margin after pT2 tumour surgery is one of the quality measures, and something that has been followed closely in recent years.
The hospital in Telemark, Skien, has had a negative change in 2022 from 85.3–74.2 % non-free rand. The hospital has reviewed all patients by a non-free margin, and it turned out that almost all of them are in small lengths in apex. They take note of it and will adapt operational techniques accordingly. NB! These are small numbers and it takes little to make a statistical difference.
The results for 2023 show a significant improvement compared to 2022. They went from 74.2 % to 85.7 % free rand. In addition, they have improved their result for free rand - cT3 from 9.1 % in 2022 to 72.7 % in 2023.
Innlandet Hospital, Hamar, has had a negative change from 87.5–82.1 % non-free rand. The surgeon has taken a closer look at the patients and pointed out that the majority have focal non-free rim. They also see that there is variation in pathology assessments (many of which of the patients have focal non-free rim; less than 3 mm.) Surgeons are also considering the use of nerve-sparing techniques to a greater extent. The results for 2023 show an improvement from 82.1 % to 84.3 % free rand.
Comply with ISUP degree in biopsy and prostatectomy
Pathologists at the department of pathology in Ålesund have since 2015 (formally 2017) had the main part of their education at St. Olav's hospital. For 2022, compliance has increased from 44% to 61% and this is considered a direct result of the training.
5-year relative survival high-risk locally advanced prostate cancer.
In the 2021 annual report, Telemark HF had a significantly lower survival rate. The hospital received lists for quality assurance. The hospital went through all the patients belonging to the analysis. The hospital has especially reviewed the patients who died from their prostate cancer diagnosis to look at the different courses of the disease.
About half of the deaths were unrelated to the prostate cancer diagnosis.
PROMs
Active efforts are being made to obtain Patient Reported Outcome Measures (PROMs). Adverse reactions after treatment are a factor of considerable importance when assessing the type of treatment and whether treatment should be initiated for the individual patient.
The National Quality Registry for Prostate Cancer started routinely collecting PROMs/PREMs in 2020. In order to distinguish between common ailments in the population and ailments related to prostate cancer, a random sample of persons without prostate cancer are also invited to submit a questionnaire. Results for urinary continence, bowel function and sexual function immediately after diagnosis and after one year can be found in the Annual Report for Prostate Cancer 2023 (Norwegian only).
