Quality indicators for the Childhood Cancer Registry
The Childhood Cancer Registry shall contribute to strengthening the quality of the health care provided to patients. The health care patients receive should follow the recommendations in the National treatment guidelines for diagnosis, treatment and follow-up of childhood cancer.
For the Registry's advisory board and the professional community, it is important that children who are diagnosed with cancer receive the same services regardless of where they live. It is also a goal of the advisory board that the survival rate for children with a cancer diagnosis in Norway should continue to be among the highest in the world.
With an ever-increasing number of childhood cancer survivors in society, a very important focus area in the future will be the late effects that can occur long after treatment has ended. As of 2019, the Childhood Cancer Registry collects information on late effects. The good cooperation between the medical council and the Cancer Registry of Norway will continue to make the Childhood Cancer Registry of Norway a complete and validated registry for diagnosis, treatment, follow-up and late effects for all Norwegian childhood cancer patients.
Quality measurements
As of 1 January 2019, the main goal is for the entire group of children and adolescents under the age of 18 to be complete in terms of incidence, treatment, survival and follow-up.
However, it has become apparent in recent years that registration of adolescent patients with cancer can be a challenge, as these are partly processed in adult wards and therefore sometimes not reported to the Childhood Cancer Registry. We have gradually established good contact with the relevant departments, which has led to a gradual increase in the coverage of assessment reports. Work continues in 2023 to find contact persons at other departments and other hospitals that have assessment and treatment responsibility for patients under the age of 18.
The advisory board of the Norwegian Childhood Cancer Registry has currently defined three quality indicators; two process indicators and one performance indicator. In addition, quality measures for the degree of coverage of clinical reporting. In recent years, this has led to a gradual increase in the coverage of assessment reports and treatment reports.
The quality objectives are largely based on national and European recommendations/guidelines. The advisory board evaluates the objectives each year and, if necessary, adjusts in accordance with the latest knowledge.
Quality goals for childhood cancer in 2023, from figure 1.1 in the Annual Report for Childhood cancer 2023:
The coverage rate is very good for both assessment reports (94.4 %) and treatment reports (93 %).
The register has retained previous indicators regarding the multidisciplinary team (MDT) and inclusion in the treatment protocol. Both of these indicators achieve good results.
Latest figures show that overall five-year survival for all diagnosis groups, in the last ten-year period 2014-2023, is 89 %. The advisory board considers this to be a very good result, also compared to international figures.
This year, the registry's advisory board has defined two new quality indicators; whether the patient has been treated in accordance with the National treatment guidelines for childhood cancer and how many have had biological material stored in a local/national children's biobank.
Children and young people with cancer treated according to the National treatment guidelines for childhood cancer, 2021-2023. From fig. 2.8 in the Annual report for childhood cancer 2023.
The figure shows that almost all children and young people who receive a cancer diagnosis in Norway are investigated and treated accordingly to the National treatment guidelines for childhood cancer, which we are very pleased with. This is important to ensure that the public provision of cancer care is of good quality, and equal throughout the country. These the guidelines have been drawn up by all the various professions involved in treating children and young people with cancer, and are to be regarded as recommendations and advice based on up-to-date professional knowledge.
Some individual diagnoses will be so rare that they are not mentioned in the National treatment guidelines, therefore there will not always be 100 % target achievement. We strive for updated guidelines at all times, but it will be a few years between each time the professional community has the capacity for a complete update. In the meantime, we will follow international guidelines, if these are more up-to-date than the Norwegian ones.
Read more about quality measures in the annual report for childhood cancer.
Quality improvements
The diagnosis, treatment and follow-up of cancer in children is regionalized and already highly structured. The Norwegian National Advisory Unit on Solid Tumours in Children (KSSB) is a national network of professional groups whose main objective is to ensure equal treatment throughout the country. Representatives in this network have been involved in the preparation of the National treatment guidelines for childhood cancer. The Childhood Cancer Registry is an important source of information on whether the national guidelines are followed and whether the professional community achieves the goal of equal treatment.
Cancer in children is rare, and the Childhood Cancer Registry therefore has relatively few patients per year. National and regional results must be interpreted with great caution as they usually do not show significant differences. For example, it is difficult to demonstrate whether differences in treatment outcomes over time (improved or poorer outcomes) are real or due to random fluctuations due to small numbers or different recording practices.
For the same reason, it will also often be difficult to show that initiated changes or measures lead to an improvement in results. Nevertheless, data from the Childhood Cancer Registry of Norway contribute greatly to identifying potential problem areas and initiating measures.
Measures for patient-oriented quality improvement
- In recent years, the Childhood Cancer Registry has observed a moderately increased incidence of some forms of cancer in Central Norway. This primarily applies to leukaemias, lymphomas and CNS tumours. We have no definite explanation for the reason for this, but the register and the professional council will work to shed light on this going forward.
- In the report for 2021, we commented on a possible difference in survival between the various health regions, in that West Healt trust was somewhat lower. This has been up for discussion repeatedly in the professional council. In the autumn of 2022, a major clean-up of the childhood cancer data was carried out, with an emphasis on correct inclusion and exclusion criteria. Following this, last year we presented completely comparable results across the regions. In this year's report, we can again see a tendency towards lower survival in the West Health trust. The professional council and the Cancer Registry will continue to work more purposefully to uncover whether there is nevertheless a real difference in survival, or whether this is the result of coincidences such as differences in patient composition, or other reasons. This will be commented on in the next annual report.
- The proportion of patients who have had biological material stored in a local/national children's biobank in connection with the investigation varies between the healthcare institutions. The health institutions that do not reach the target of 80 % should review their routines for storage in biobanks. The professional council and the registry will follow up on this work.
Biological material stored in local/national children's biobank, 2021-2023. From fig. 2.6 in Annual Report of Childhood cancer 2023.
The figure shows that the proportion has been increasing over the past three years, but is at national level just below the desired target of 80 %. Oslo University Hospital with the largest patient group was in 2023 at 85.7 %. It requires allocated resources to make the logistics around storage in the biobank work optimally. The hospitals that do not reach the target should look at their routines to increase the proportion of patients who have had biological material stored.
Measures for patient-oriented quality improvement
• Included in the treatment protocol as a study patient
In the report for 2021, the target achievement for this quality indicator was not reached for St. Olav's hospital and UNN. The nurses who register at the hospital and the representatives from the professional council undertook a new review of relevant patients to ensure the quality of the data in the analysis. Also as part of the quality improvement of childhood cancer treatment in Norway, several treatment protocols have been opened for certain diagnoses in recent years.
It was found that all eligible patients at St. Olav and UNN were included, and we concluded that it was the patient composition that year that made the difference. With several treatment protocols open in Norway, we can show for 2023 that the target of 35 % inclusion in the protocol has been reached for all hospitals.
- Treatment results for Ewing sarcoma and osteosarcoma
In the report for 2022, we showed a separate analysis for Ewing sarcoma and osteosarcoma in bone and soft tissue for the age groups 0-9 years and 11-17 years. These diagnoses have significantly lower survival rates than other cancers in children and young people.
Over the last few years, through an European collaboration, efforts have been made to prepare a new treatment protocol for Ewing (INTER-EWING-1). This process has been delayed for various reasons, but it is expected that it will open during 2024. Hopefully, this will eventually lead to increased survival
for this patient group.
The results of the measure will be followed up in later annual reports.
• Information on late effects from patients treated for a CNS tumor
Since 2019, the Norwegian Childhood Cancer Registry has had a separate late effects form, but with a lack of routines for systematic reporting from the hospitals. In the 2022 report, for the first time an analysis of a pilot project was showed, where half of the forms we received contained some results for PedsQL (health-related quality of life).
As a result of the pilot project, the Norwegian Childhood Cancer Registry applied for funds from the Servicemiljøet in the South-East Health trust to work with quality improvement work in practice. The application was granted, and the quality manager have, in collaboration with the neuropsychologists and registration staff at each university hospital, worked to collect information from neuropsychological testing for a group of CNS patients diagnosed 2016-2018, which was initially for control after approximately five years.
The results show that there are several different reasons why not all patients complete this cognitive testing/mapping. Some hospitals also lack good enough medical records, so that the results do not exists even if the testing has been carried out. Significant shortcomings and a great potential for improvement of the late effect form itself have also been uncovered.
The project and subsequent work will continue in 2024/2025, and will be discussed in greater detail in the annual report for 2024.
Read more about quality improvements in the Annual Report 2023 Childhood Cancer (Norwegian only).