Quality measure for the Norwegian Registry for Lymphoid Malignancies
The data quality for the entire patient group diagnosed with lymphoid malignancies is considered to be very good because the Cancer Registry of Norway makes a specific assessment of all pathology results from the laboratories. This ensures that all patients are allocated to the correct morphology group (subgroup). In cases of lymphoid malignancy, correct diagnosis is more important for the prognosis than if the disease is widespread (with the exception of stage I). Information on incidence, survival and the basis for diagnosis is considered almost complete.
One goal of establishing a quality registry is for the data to be used to improve the health service, including providing 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 quality registry. If information from the quality register 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 and the Professional Council cooperate with the Norwegian Directorate of Health to give a selection of the professional community's quality indicators national status. Due to resource limitations in the Norwegian Directorate of Health, no new national quality indicators for lymphoid malignancies have been established in 2022. None of the quality indicators below have the preliminary status as national quality indicators.
The Quality Registry for Lymphoid Malignancies has 11 quality objectives. All process indicators/targets are directly linked to the action programme for lymphomas, action programme for malignant blood diseases and package pathways for lymphomas.
The report emphasizes the diagnosis of lymphoid malignancies. Histological type of non-Hodgkin lymphoma is of great importance for the prognosis and choice of treatment. In this year's report, we see for the first time that the goal that more than 95 per cent of non-Hodgkin lymphoma diagnoses should be consulted with a university hospital has been achieved. This is in line with the guidelines for consultation in the diagnosis of lymphoma, and goal achievement is a result of systematic work over time. Future reports will therefore focus on sending as many biopsies as possible directly to university hospitals. Other elements of assessment of non-Hodgkin lymphoma, such as indication of stage and use of biopsy are satisfactory.
In terms of survival, it is increasing for all major groups.
Read more about quality measures and results in the Annual Report on Lymphoid Malignancies 2022 (Norwegain only)
Quality improvements
Identified patient-oriented areas for improvement:
• The action programme for chronic lymphocytic leukaemia states that the standard treatment at an early stage of the disease is "watch-and-wait". In the analysis published for the second time this year, we see that the start of treatment varies between the different health authorities. The register will follow up the results in the future.
• The prognosis for mantle cell lymphoma has improved considerably in recent years, but there is no lasting cure effect of current treatment. In case of relapse, the prognosis is still poor.
• The registry wants increased regional cooperation and a greater streamlining of multiple myeloma treatment, both nationally and within regions, and hopes results from the report can help motivate this. The use of FISH analyses, as well as ISS stage reporting, should be at an even higher level.
• Breast implant-associated anaplastic large cell lymphoma is a rare cancer, but much needed information is missing as there is no national registry for breast prostheses.
• For non-Hodgkin lymphoma, we see a greater variation in survival among the oldest patients compared to the younger age groups. That survival is generally lower is natural, but the fact that the variation is so great between the health trusts provides a basis for research projects.
• T-cell lymphomas have a poor prognosis and a low relative survival, with slightly more than 40 percent with this diagnosis still alive after five years. This is an area where more research could be beneficial.
• Somatic hypermutation in the CLL cells' preferred IGHV gene has an impact on the prognosis of patients diagnosed with CLL cells. The Academic Council therefore wants the preferred IGHV gene and mutation degree to be stated when reporting.
• The registry attaches great importance to improving clinical reporting.
Evaluation of measures and changed practice
Lack of consultation of university hospitals
The Quality Registry has been in direct contact with the departments to request reasons and possible changes plans. The annual report has devoted a lot of space to this, and the academic council has contributed generally to the academic community. Lack of consultations has also been a separate news item on the Cancer Registry's website.
Most hospitals have changed their consultation procedures. Akershus University Hospital has acquired the necessary equipment required for precise lightning flood diagnostics and could be excluded from the analysis as of 2022.
Sørlandet Hospital, Kristiansand is increasingly sending all lymph nodes with lymphoproliferative conditions to Oslo University Hospital in the last six months of 2022. It has so far not been as consistent for bone marrow biopsies, but these will also be forwarded in the future.
This year, Ålesund Hospital can show a significantly better result than previous annual reports.
For the first time, the goal of consulting over 95 per cent of non-Hodgkin lymphoma diagnoses with a university hospital has been achieved. This is a result of systematic work over several years.
Use of biopsy in the diagnosis of multiple myeloma
In the annual report for 2017, we presented for the first time the proportion of patients with multiple myeloma who were diagnosed using biopsy/bone marrow smears versus bone marrow smears only. It showed large differences between hospitals, and nationally the proportion of patients diagnosed by biopsy was 81 per cent. At this time, the national guidelines equated bone marrow smears and biopsy as diagnostic methods. The guidelines were amended in 2018/2019 so that it is now recommended that a biopsy should be used in addition to any bone marrow smears. Representatives from the academic council and the action programme group have worked to make the changes known in the academic community, and several departments had to change their practice. Nordland Hospital Trust and Vestfold Hospital Trust in particular have changed their practice considerably.
The 2019 annual report showed that 87.9 percent were diagnosed with biopsy. 2020 was the first vintage in which the goal that 90 per cent (90.3) of multiple myeloma patients should be diagnosed in this way was reached. In 2022, the result is 94 percent.
See more areas for improvement and results in the Annual Report on Lymphoid Malignancies 2022
Proms
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 an infra structure for collecting PROMs (Patient-reported outcome and experience goals), including integration with ePROM, which is the national solution for obtaining PROMs.
The National Quality Registry for Lymphoid Malignancies will start with routine collection of PROMs/PREMs in 2023. In order to distinguish between common ailments in the population and ailments associated with these types of cancer, a random sample of persons without a lymphoid malignancy will also be invited to submit a questionnaire.
The different types of cancer have their own cancer-specific module that will measure late effects/ailments that are particularly associated with each cancer and its treatment(s). It has not been finally decided which type of cancer-specific module will be used in the quality registry. A working group has been established consisting of oncologists/hematologists, representatives from the Lymphatic and Blood Cancer Society and representatives from the Cancer Registry of Norway to work on this.
