Quality measurements for the Melanoma Register
The primary purpose of the Melanoma Registry is to help ensure that patients receive the same and correct treatment that follows the National Action Programme with guidelines for diagnosis, treatment and follow-up of malignant melanoma.
None of the quality indicators currently have the status of national quality indicators. The Cancer Registry of Norway and the expert group collaborate with the Norwegian Directorate of Health to give a selection of the professional community's quality indicators national status. Due to resource constraints in the Norwegian Directorate of Health, no new national quality indicators for melanoma have been established in 2022.
The recommendations in the Action Programme for Diagnosis, Treatment and Follow-up of Malignant Melanoma form the basis for variables and quality measures in the Melanoma Registry. In cooperation with the Cancer Registry, the Advisory Council has defined quality objectives to be evaluated in the annual report (Norwegian only).
There is an increased proportion of reported Breslow thickness and ulceration among the laboratories in 2022 as well, which is very positive.
On the other quality objectives there are minor changes over time. We hope that detecting a larger proportion in the T1 stage will lead to increased survival and increased relapse-free survival. In addition to early diagnosis, adjuvant therapy of stage IIB and IIC is also likely to increase relapse-free survivors, but this is currently only taking place in a study context.
One of the Melanoma Registry's most important tasks has been, and still is, to ensure high reporting of clinical information so that the data can be used for quality-improving work in hospitals. The registry's data basis can then be used to assess whether all patients receive the best possible treatment, and whether the entire health service complies with the guidelines. Changes in treatment guidelines will also be considered if the measures implemented do not have sufficient effect.
Information from the Cancer Registry of Norway is important for influencing guidelines and for ensuring that they are followed throughout the country. In 2020, the guidelines for when to perform sentinel lymph node surgery were changed based on figures from the Melanoma Registry. This is precisely how we want data from the register to help to continuously improve the guidelines.
The Melanoma Registry contacts individual health enterprises/clinics/departments during the work on the annual reports if there are results that stand out from the rest of the country. This makes it possible for the relevant units to assess what may be the reasons for the results and, if necessary, rectify this or include it as comments in the reports.
The Norwegian Melanoma Group encourages the academic communities to use the report and assess their own results to see to what extent the recommendations in the action programme are complied with.
See results in annual report 2021 Melanoma (Norwegian only)
Areas for improvement
The registry focuses on early diagnosis, which hopefully means that more patients can be cured. This includes both diagnosing melanoma cases early, while they are still thin (T1 tumors), and diagnosing any recurrences as early as possible. Here, of course, it is important to inform both the general population and melanoma patients about symptoms and signs that should prompt them to see a doctor as early as possible.
Particular focus must be placed on Helse Møre og Romsdal and Helse Førde HF, which stand out significantly with a low proportion diagnosed in T1. It is also worth noting Vestfold, Sørlandet and Innlandet HF, which also stand out negatively. Here it is necessary to cooperate with the Norwegian Cancer Society, with its contact with the population, and the Norwegian College of General Practice with its contact with GPs.
It is important to train general practitioners in the primary health service. They must have the knowledge and competence to make the correct assessments and investigations of suspicious lesions so that these are removed and sent for examination early. They must also know how to remove the lesions and focus on removing them with a free margin.
In this year's report , we see that only 73.2 per cent of melanomas have been removed by pathologically free margin, among GPs. It is difficult to provide information to a group of GPs as a whole. We hope that this year's results, where the associated health trusts in the primary health service are presented, can encourage the various health trusts to focus more on this, towards their GPs.
In addition to this, it is important that pathologists follow structured templates for answering melanomas, so that important factors for stage determination, prognosis and recommended treatment regimens are in place. The proportion of pathology results with explicit information about Breslow and ulceration is generally good, but varies somewhat from pathology department to department. Findings of ulceration vary somewhat between pathology departments. This may be an expression of random variations, but we will follow this further.
The time from the patient seeing a doctor until the lesion is removed, examined and extended excision has been performed, there is still room for improvement. However, there is a big difference between the shortest and longest waiting times among hospitals. There are many stages a test must go through from the time the patient seeks medical attention until a diagnosis is made.
The results show that some health trusts stand out, with longer waiting times. It will be important to follow developments further in order to identify unnecessary delays.
The follow-up of melanoma patients is an area we do not have sufficient knowledge about. Results in the annual report show that reporting for the proportion of patients in stages III and IV discussed in melanoma multi-disciplinary teams (MDT) varies between regions.
The discussions in MDT are done in some places before surgery and elsewhere after surgery, which may affect the reporting. All newly diagnosed patients in stages III and IV should be discussed in melanoma MDT. These are results we encourage the health authorities to use in their quality assurance work, and we are monitoring developments.
Another patient-oriented area of improvement is to ensure that all patients receive the most optimal treatment possible. The guidelines for performing lymph node toilets on the basis of positive sentinel lymph nodes have been changed. As a general rule, lymph node dissection should be omitted, as any survival benefit already comes from sentinel lymph node procedure and subsequent lymph node dissection does not affect melanoma-specific survival.
As a general rule, lymph node dispensation should be omitted, as any over-level gain already occurs with sentinel lymph node procedure and subsequent lymph node dissection does not affect melanoma-specific survival. In recent years, we have seen that the guidelines are followed. In 2021, the proportion of lymph node dissections performed on the basis of positive sentinel lymph node was 3.6%, while the results for 2022 show a proportion of 0.6%.
Several drugs and therapies are also moving full speed into the treatment of patients with metastatic melanoma, and we look forward to following the effect of adjuvant therapy in the years to come. This is the first year we can show results on the basis of drug therapy for the whole country (with the exception of Northern Norway Regional Health Authority), and we see that the vast majority of patients start adjuvant therapy within 12 weeks after surgery.
We currently have insufficient information about which patients benefit from which types of treatment. Here, the quality register plays an important role by providing a basis for analysing the effect of different forms of treatment.
The Cancer Registry of Norway is now testing to retrieve information about drug treatment directly from the professional systems in the health trusts. With such information combined with the information in the Melanoma Registry, we are in a good position to follow up the treatment of melanoma patients even better in the future. For example, this can help identify patients who do not benefit from such treatment and why.
See results in Annual Report 2022 Melanoma (Norwegian only)
In order to further strengthen the quality of health care, the Cancer Registry of Norway has in 2019 and 2020 worked on planning and building infrastructure for collecting PROMs (Patient-reported outcome and experience goals), including integration with ePROM, which is the national solution for collecting PROMs.
The Melanoma 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 melanoma, a random sample of people without melanoma will also be invited to submit a questionnaire.
The National Quality Registry for Melanoma started with routine collection of PROMs/PREMs in April 2021 and selected results are presented for the second time in this year's report.
See results of PROMs/PREMs in Annual Report 2022 Melanoma (Norwegian only)