Quality indicators
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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 clinical 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 clinical 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 Registry of Lymphoid Malignancies has 11 quality indicators. All process indicators/targets are directly linked to the National treatment guidelines for lymphomas and for malignant blood diseases, and patient pathways for lymphomas. None of the quality indicators below currently have status as national quality indicators.
Quality indicators for the Norwegian Registry for Lymphoid Malignancies in 2023. From fig. 1.1 in Annual report for lymphoid malignancies 2023.
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 % of non-Hodgkin lymphoma diagnoses should be consulted with a university hospital has been achieved. The result is even better for the 2023 cohort.
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 indicators and findings in the Annual Report on Lymphoid Malignancies 2023 (Norwegain only)
National treatment guidelines for diagnosis, treatment and follow-up of malignant lymphomas
National treatment guidelines for diagnosis, treatment and follow-up of haematological malignancies
Quality improvements
Identified patient-oriented areas for improvement:
- Reporting of Binet stage in chronic lymphocytic leukemia should exceed 90 % of the primary investigation reports. With the help of staging, the registry can carry out quality controls on whether patients in Binet stage A have received drug treatment, contrary to the National treatment guidelines. The register will work with information out to reporters and has created this as a separate quality target from 2023 onwards.
- The National treatment guidelines for chronic lymphocytic leukaemia states that the standard treatment at an early stage of the disease is "watch-and-wait". The results shows that the start of treatment varies between the different health authorities.
- The register has a desire for increased regional cooperation and greater streamlining of multiple myeloma treatment, both nationally and within regions. The new analyzes on drug treatment of multiple myeloma should be able to motivate this.
- The use of FISH analyses, as well as ISS stage reporting, should be at an even higher level.
- 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 % with this diagnosis still alive after five years (See figure 2.21). This is an area where more research could be beneficial.
- The prognosis for mantle cell lymphoma has improved considerably in recent years, but there is no lasting curative effect of current treatment. In case of relapse, the prognosis is still poor.
- Breast implant-associated anaplastic large cell lymphoma is a rare form of cancer, but much needed information is lacking as there is no national registry for breast implants.
Evaluation of measures and changed practice
Lack of consultation of university hospitals
The Norwegian Registry for Lymphoid Malignancies 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 advisory board has contributed generally to the academic community. Lack of consultations has also been a separate news item on the Norwegian Cancer Registry's website. Most hospitals have changed their routines for consultation. This is the result of systematic work over several years
The overall target that over 95 % of non-Hodgkin lymphoma diagnoses should be consulted with a university hospital has been reached for the second year in a row. Ålesund and Kristiansand hospitals changed their routines ahead of the 2022 cohort and can show a far better result.
Use of biopsy in the diagnosis of multiple myeloma
The first time the analysis regarding the proportion of patients with multiple myeloma diagnosed by biopsy was presented, it showed large differences between the hospitals. Nationally, the proportion of patients diagnosed by biopsy was 81 %. Representatives from the advisory board and the team of National treatmenet guidelines have worked to make the guidelines known in the professional environment and several departments have changed their practice.
The proportion of patients diagnosed with biopsy has risen from 81 % in 2017 to 96 % in 2023. Molde Hospital has increased the proportion of biopsies from 55 % in 2021 to 90 % in 2023.
See more areas for improvement and results in the Annual Report on Lymphoid Malignancies 2023
Patient reported results
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 Norwegian 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.
In the Annual Report for Lymphoid Malignancies 2023, the first patient-reported data (PROMs) are presented. From the summer of 2023, electronic questionnaires have been sent out to all newly diagnosed lymphoma and multiple myeloma patients who use a public digital mailbox. Currently, the response rate is low, but we believe it will increase as this becomes known. It will be an important contribution to the quality improvement work.