Quality objectives for the Childhood Cancer Registry

Last updated: 8/14/2023

The National Quality Registry for Childhood Cancer 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 Action Programme with guidelines for diagnosis, treatment and follow-up of cancer in children.

For the Quality Registry's professional council 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 professional council 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 objectives

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 National Quality Registry for Childhood Cancer 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 Academic Council evaluates the objectives each year and, if necessary, adjusts in accordance with the latest knowledge.

Quality goals for childhood cancer in 2022, from Annual Report 2022 Childhood cancer:

The coverage rate is very good for both assessment reports (88.1 %) and treatment reports (88.1 %).

Discussion about the individual patient in multidisciplinary teams (MDT) is considered important for coordinating cancer treatment, also in childhood cancer care. This is particularly important for solid tumours, where oncologists, neurosurgeons, paediatric surgeons, radiation therapists, pathologists and radiologists all have important roles. 90.7% of patients in 2022 have medical record-documented assessments from MDT meetings.

38% of patients were enrolled in international treatment protocols as study patients in 2022. This is comparable to the reports of recent years.

Our new figures show that five-year survival for the last ten-year period 2013-2022 is 88.9%, which the Academic Council considers to be a very good result, also compared to international figures.

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 action programme 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

• Included in the treatment protocol as a study patient

In the report for 2021, the goal achievement for this quality indicator was not reached for St. Olavs Hospital and UNN, with 24.1 % and 26.7 % inclusion respectively. We examined these figures again retrospectively and found that all eligible patients were indeed included, but that the composition of diagnoses at these two centres in 2021 meant that there were not as many open study protocols.

Opening new protocols for inclusion is considerably time-consuming work for each protocol, with many agencies involved. Nevertheless, it has recently opened several new protocols for CNS tumors, as well as a new one for the Protocol for Rhabdomyosarcoma in 2021 and one for high-risk neuroblastoma in 2022. One will also open for AML in 2023. This work is part of the overall quality improvement for childhood cancer patients in Norway.

For St. Olav's Hospital and UNN in 2022, inclusion in the protocol has increased to 34.5% and 50%, respectively. Nationally, the figure is 38 %, which is a very good result compared to other patient groups in Norway. This is a result of the fact that more protocols are now available, but we cannot exclude the possibility that the increase is also due to the patient composition.

Treatment Results for Ewing's Sarcoma and Osteosarcoma

In this year's report, we present survival for Ewing's sarcoma and osteosarcoma in bone and soft tissue for the younger children (0-9 years) and adolescents/teenagers (10-17 years). These are diagnoses where survival is significantly lower than other tumours in children and adolescents, and for next year's report we wish to study possible causes and improvement potential more closely.

• Five-year overall survival

In the 2021 report, we commented on a possible difference in survival between the various health regions and that we wanted to investigate this further. After cleaning up the data for the Childhood Cancer Registry, with emphasis on correct inclusion and exclusion criteria, this year's report presents completely comparable results on five-year overall survival across health regions.

• Information on late effects from patients treated for a CNS tumor

The late-effect questionnaires have been in operation since 2019, but it is only now that we have systematically collected information on late effects via these forms. In collaboration with the neuropsychologists and registration nurses, we have received late-effect questionnaires for CNS patients who completed their treatment in 2020 and, according to the follow-up plan, underwent neuropsychological follow-up one year later.

Half of the questionnaires we received contained scores for PedsQL (health-related quality of life). The goal is for more patients to undergo a neuropsychological examination, and we must work purposefully to ensure that these examinations are better documented in medical records. We also want better reporting of these forms to the Childhood Cancer Registry. The work will continue in 2023.