Acute lymphoblastic leukemia (ALL) constitutes approximately 25% of pediatric cancers, and with contemporary protocols, the 5-year survival rate is over 90%. Despite improved survival, neurocognitive impairments from treatment raise concerns. This registry study aimed to explore the impact of ALL treatment on educational outcomes from school year nine in Swedish children. A population-based cohort of 503 children diagnosed with ALL from 1990 to 2010 was identified from the Swedish Childhood Cancer Registry and matched with five controls each. Assessed variables were delayed graduation, high school eligibility, total merit value, school grades in Swedish, English, mathematics, and physical education, and results in national tests. Analyses were performed between cases and controls and by sex, age at diagnosis, and risk group. Our results showed that, compared to controls, cases had higher odds for delayed graduation, poorer results in physical education, and higher rates of absence in national tests in English and mathematics. Children in the standard-risk group (treated with first-line chemotherapy only) exhibited similar results to matched controls whereas children in the high-risk group (treated with cranial irradiation, hematological stem cell transplantation, or/and for ALL relapse and thus likely received also radiotherapy) had lower total merit value compared to controls. We conclude that Swedish children diagnosed with ALL between the years 1990–2010 mainly exhibited comparable educational outcomes to controls, although children in the high-risk group had lower results. These findings highlight the importance of evaluating especially children with high-risk ALL in order to identify those requiring educational support and for designing targeted interventions.

Background: Many children treated for cancer experience a negative impact on their academic performance; however, most studies of children treated for sarcomas have not investigated academic performance. Our aim was to explore how Swedish children treated for sarcomas perform academically, as well as how they adjust to life afterwards. Procedure: We compared 167 pediatric sarcoma survivors with 776 matched, non-sibling controls without a history of cancer, in a retrospective cohort study using data from nation wide registries. Primary outcomes were grades at the end of compulsory education, high school eligibility, post-compulsory education (i.e., education after school Year 9), employment, and sickness or activity compensation. Results: Pediatric sarcoma survivors were more likely to be ineligible for high school (odds ratio [OR] 1.76; p = .045) and more likely to fail Swedish (OR 2.12; p = .046), mathematics (OR 2.27; p = .011), and/or physical education (OR 2.24; p = .004), compared with controls. Survivors were less likely to have been employed (OR 0.58; p = .027) and received sickness or activity compensation more often (OR 2.49; p = .008) compared with controls. Conclusions: Pediatric sarcoma survivors have poorer academic performance compared to peers without cancer in multiple school subjects. Survivors seem to catch up during post-compulsory education, but might struggle to find employment.

Purpose This study aimed to explore educational outcomes in individuals diagnosed with lymphoma in childhood concerning school grade year 9 and attendance in high school and post-compulsory education. Whether sex or age at diagnosis affected the assessed variables was also explored.

Methods Data from 174 children born 1988–1996 and diagnosed with lymphoma before age 15 were matched with approximately five controls per patient. The mean time since diagnosis to receiving school year 9 grades was 4.88 years for Hodgkin lymphoma (HL) cases (mean age at diagnosis 10.62, 11.76, and 10.05 years for all, girls, and boys, respectively) and 7.79 years for non-Hodgkin lymphoma (NHL) cases (mean age at diagnosis 7.85, 7.87, and 7.84 years for all, girls, and boys, respectively).

Results We observed statistically significant differences between cases and controls in physical education, both for failing (p = 0.041) and the highest grade (p = 0.015). Compared with controls, HL cases were three times more likely to fail mathematics, and significantly fewer individuals in the whole lymphoma (p = 0.011) and NHL (p = 0.035) groups attended the third year of high school.

Conclusions Educational outcomes are impacted for children treated for lymphoma, especially in physical education. Since patients with HL are treated without central nervous system-directed therapy, other factors, such as absence from school, may affect school results. Physical late complications in lymphoma survivors warrant special attention.

Implications for Cancer Survivors The problems childhood lymphoma survivors face should be known by schools and parents, to enable their management. Children treated for lymphoma should be closely monitored and included in follow-up programs when needed, for example, to support physical activity.

Background: Survivors of pediatric brain tumors are at high risk of late complications that may affect their daily life in both short- and long-term perspectives.

Methods: In this nationwide registry-based study we explored the occupational outcomes, including employment, sickness or activity compensation and parental leave, in 452 individuals in Sweden, born 1988–1996, and diagnosed with a brain tumor before their 15th birthday. Their results were compared with 2188 matched controls.

Results: There were significant differences between cases and controls for all assessed variables. The cases had benefitted from sickness or activity compensation 11 times more often than controls (CI 7.90–15.83; p < 0.001) between 2005 and 2016. Controls were almost three times more likely to have an employment (OR 0.36; CI 0.28–0.47; p < 0.001) and nearly twice as likely to have been on parental leave (OR 0.56; CI 0.39–0.80; p = 0.002). Although cases treated for high-grade tumors typically fared worse than those treated for low-grade tumors, significant differences for all assessed variables were also observed for cases treated for a low-grade tumor compared with controls.

Conclusions: Our findings emphasize the need for follow-up programs for all brain tumor diagnoses, not only those known to be at most risk. This is evident, for example, from the high number of cases who received sickness or activity compensation.

The risk of late complications after a brain tumor in childhood is high. Both the tumor itself and the treatments give rise to sequelae that affect daily life activities. In this registry study, we explored post-compulsory education, i.e., further education following the nine compulsory years in school, in 452 cases born 1988–1996 and diagnosed with a brain tumor before their fifteenth birthday. They were compared with 2188 individual controls who were not treated for cancer. Significantly fewer teenagers and young adults treated for brain tumors in childhood attended high school or university compared with controls, especially individuals treated for embryonal tumors or optic pathway gliomas. A significantly larger proportion of subjects treated for embryonal tumors and craniopharyngiomas attended folk high schools, a type of post-compulsory school with a more accessible learning environment. For both cases and controls, we observed a positive correlation between parental education levels and attendance in high school and university. In our previous studies we have shown that children treated for brain tumors, as a group, tend to perform worse during their last year of compulsory school compared with their peers, and the current study confirms that these differences remain over time.

The overall aim of this thesis was to investigate how children in Sweden treated for brain tumours performed in their ninth year at school compared with matched controls. The studies investigated grades and results from national tests in the theoretical subjects of Swedish, English, and mathematics; grades in the practical and aesthetic subjects of art, crafts, music, home and consumer studies, physical education and health; and the frequency of delayed graduation and qualification for school years 10-12 (corresponding to upper-secondary school or high school).

The results from this thesis demonstrate significant differences in performance between the group of children treated for brain tumours (cases) and their controls, both in the theoretical subjects and in the practical and aesthetic subjects. However, there were larger differences between cases and controls in the theoretical subjects than in the practical and aesthetic subjects. The largest differences were found in the subject of English, and there were also significant differences between cases and controls with regard to delayed graduation and qualification for school years 10-12. Graduation for children treated for brain tumours was delayed more often than for controls, and qualification for school years 10-12 was significantly higher among controls than for children treated for brain tumours. The results also showed different effects based on sex. For example, the gap between the girls treated for brain tumours and their controls was, in most cases, greater than for the boys and their controls. Whether the child had been treated for a high- or low-grade tumour did not have any significant impact on the results in any of the studies. Children treated at ages 0-5 and 6-9 years old were at particular risk of lower average grades in theoretical subjects or not qualifying for school years 10-12, although the latter result was significant only for the girls. Age at diagnosis was another significant factor for national test performance. There was also a positive correlation between the parents’ education levels and qualification for school years 10-12 for children treated for brain tumours.

The implication of the results are that the academic performance of all children treated for brain tumours, regardless of sex, age at diagnosis, tumour grade, or parents’ education should be closely monitored when starting or returning to school after brain tumour treatment. It is also important to have a long-term perspective, as school difficulties do not disappear, but rather may increase over the years. Children treated before starting school should be monitored extra closely as well as children treated at ages 6-9, as a considerable number of basic skills are taught during these first school years. Moreover, it is of particular importance that girls and boys are equally monitored. Yet, the range of difficulties for children treated for brain tumours is wide and extremely heterogeneous. Thus, the type of support or intervention should be adapted to each child’s individual needs.

Syftet med denna avhandling har varit att undersöka hur barn i Sverige som har behandlats för en hjärntumör presterade i skolan under sitt sista obligatoriska skolår, årskurs nio, jämfört med matchade kontroller. Kontrollerna matchades efter födelseår, kön och bostadsområde. Huvudfokus har riktats mot betyg och nationella prov i de teoretiska ämnena svenska, engelska och matematik. Även betygen i de praktiska och estetiska ämnena hemkunskap, idrott, bild, musik och slöjd har undersökts liksom behörighet till gymnasiet och hur många barn som slutade årskurs nio senare än förväntat.

Huvudresultaten från de olika studierna visade att det fanns signifikanta skillnader mellan barn som behandlats för en hjärntumör (fallen) och deras kontroller både för de teoretiska ämnena och de praktiska och estetiska ämnena. Det var dock större skillnader mellan fall och kontroller i de teoretiska ämnena än i de praktiska och estetiska ämnena. De största skillnaderna sågs i ämnet engelska. Det var också signifikanta skillnader mellan fall och kontroller gällande behörighet till gymnasiet och hur många barn som slutade årskurs nio senare än förväntat. Signifikant färre fall än kontroller var behöriga till gymnasiet. Jämfört med kontrollerna var det också vanligare att barn som behandlats för en hjärntumör slutade årskurs nio senare än förväntat.

Alla tre studierna visade också att kön hade en inverkan på resultaten. Till exempel var skillnaden mellan flickor som behandlats för en hjärntumör och deras kontroller större än skillnaden mellan pojkar som behandlats för en hjärntumör och deras kontroller när det gällde betyget icke godkänt i de olika ämnena, särskilt de praktiska och estetiska ämnena. Om barnen hade blivit behandlade för en hög- eller låggradig tumör hade däremot ingen signifikant inverkan på resultaten i någon av studierna. Resultaten visade också att det på fanns en positiv korrelation mellan föräldrarnas utbildning och barnens behörighet till gymnasiet. Vidare var det större risk att barn som behandlats i åldern 0-5 eller 6-9 hade ett lägre genomsnittsbetyg eller inte var behöriga till gymnasiet jämfört med kontrollerna. Skillnaden gällande behörigheten till gymnasiet rörde dock endast flickorna. 

Resultaten från studierna visar att alla barn som behandlats för en hjärntumör, oavsett kön, ålder vid diagnos eller om de haft en hög- eller låggradig tumör bör uppmärksammas när de börjar eller kommer tillbaka till skolan efter en hjärntumörsbehandling. Att göra uppföljningar under hela skolgången är viktigt då svårigheterna inte försvinner utan snarare kan öka med åren. Barn som behandlats innan skolstart och under de första skolåren bör uppmärksammas extra eftersom flera av de grundläggande skolfärdigheterna lärs in under dessa år. Vidare är det viktigt att flickor och pojkar uppmärksammas i lika hög grad och att alla interventioner är individuellt anpassade efter varje barns unika behov då svårigheterna kan se väldigt olika ut.

Children treated for brain tumours often have late-appearing complications that mayaffect their school performance. Uneven skill profiles may help reveal late complications that can becompensated for but otherwise remain undetected. We investigated Swedish national school tests oforal, reading and writing skills in the first foreign language (English), the mother tongue (Swedish)and mathematics. Data were obtained from The Swedish Childhood Cancer Registry and StatisticsSweden. The results from 475 children diagnosed with a brain tumour before their 15th birthdayand 2197 matched controls showed that children treated for brain tumours evinced more difficultieswith national tests than controls in almost all subtests, especially in the subject English, and thatthey may perform better on oral than written tasks. There were larger differences between femalecases and controls than between male cases and controls; age at diagnosis played a significant rolefor some subtests, whereas tumour grade did not. Missing information from national tests provedto be a strong predictor of poor academic performance. Our results show that regular educationalfollow-ups, as a complement to neuropsychological follow-ups, are important for all children treatedfor brain tumours, regardless of sex, age at diagnosis or tumour grade.

Background

As many as 95.7% of children diagnosed with a brain tumor will experience persistent late effects as adults. These include difficulties with general executive functions, lower IQ, and mental fatigue, which may negatively affect school performance.

Methods

Through the Swedish Childhood Cancer Registry, we identified 475 children born between 1988 and 1996, diagnosed with a brain tumor before their 15th birthday. School grades in “Swedish,” “mathematics,” and “English,” if their graduation was delayed, and qualification for school years 10‐12 were compared with 2197 matched controls. Furthermore, we checked for interaction effects between sex and age at diagnosis, and possible effects of tumor grade (high or low) as well as parents’ education.

Results

Children treated for a brain tumor performed worse in the subjects compared to controls and also had delayed graduation to a greater extent. Fewer children treated for a brain tumor than controls qualified for school years 10‐12. Children treated at a young age, especially females, and children whose parents have low education seem to be at particular risk. Unexpectedly, there were no differences in outcomes between survivors with high‐ and low‐grade tumors.

Conclusions

It is important that schools provide regular pedagogical assessment and individualized support to meet the different needs of children treated for a brain tumor. Children treated for low‐grade tumors do not perform better than children treated for high‐grade tumors, despite the lighter treatment, and hence require the same attention and support.

Background Children treated for brain tumour (hereafter termed paediatric brain tumour survivors (PBTS)) often need extra support in school because of late-appearing side effects after their treatment. We explored how this group of children perform in the five practical and aesthetic (PRAEST) subjects: home and consumer studies, physical education and health, art, crafts and music.

Methods In this nationwide population-based study of data from the Swedish Childhood Cancer Registry and Statistics Sweden, we included 475 children born between 1988 and 1996, diagnosed with a brain tumour before their 15th birthday. We compared their grades in PRAEST subjects with those of 2197 matched controls. We also investigated if there were any differences between girls and boys, children diagnosed at different ages, and children with high-grade or low-grade tumours.

Results The odds for failing a subject were two to three times higher for girls treated for a brain tumour compared with their controls in all five PRAEST subjects, whereas there were no significant differences between the boys and their controls in any subject. PBTS had lower average grades from year 9 in all PRAEST subjects, and girls differed from their controls in all five subjects, while boys differed in physical education and health and music. PBTS treated for high-grade tumours neither did have significantly different average grades nor did they fail a subject to a significantly higher extent than PBTS treated for low-grade tumours.

Conclusions Children treated for a brain tumour, especially girls, are at risk of lower average grades or failing PRAEST subjects. All children treated for brain tumour may need extra support as these subjects are important for their well-being and future skills.

Research topic/aim

In Sweden, about 100 children per year are diagnosed with a brain tumor. This group of children are at very high risk of experiencing neurocognitive, physical and psychosocial late effects that can all negatively affect school performance. Yet, our studies are the first larger register studies in Sweden that explore school performance for children treated for a brain tumor, in terms of grades from last year in compulsory school, year nine. In the first, now published study (Lönnerblad, van’t Hooft, Blomgren, & Berglund, 2019), we explored the final grades in the subjects Swedish, Mathematics and English, qualification for upper secondary school (school year 10-12) and if they had a delayed graduation. In the second, on-going study (Lönnerblad, van’t Hooft, Blomgren & Berglund, in progress) we explore the final grades in the practical and aesthetical subjects (PRAEST subjects) Home and consumer studies, Physical education and health, Art, Crafts and Music.

Theoretical framework

The studies were performed within an epidemiological framework using register data, and we compared the grades of children in the study-group to non-affected controls. Effects of sex, age when diagnosed and whether the children had been treated for high- or low-grade tumours were analysed.

Methodology/research design

The nationwide population-based studies with data from the Swedish Childhood Cancer Registry and Statistics Sweden, included 475 children born between 1988 and 1996 and diagnosed with a brain tumour before their 15^th birthday. We compared their grades with 2,197 controls, matched by age, sex and place of living.

Expected results/findings

Lönnerblad et al (2019) showed that only 77.3% of the children treated for a brain tumour qualified for upper secondary school compared to 90.6% in the control group, and 11.4% repeated a grade or started school one year later than expected compared to 2.3% of the controls. Children treated for a brain tumor failed a subject more often and had lower average grades than controls. Female survivors diagnosed at a young age were found to be at particular risk for school failure, yet there were no significant differences between children treated for high- or low-grade tumours. We will present similar analyses for the PREST subjects.

Relevance to Nordic educational research

Comparable registry studies have been performed in Finland and Denmark, but not in Sweden, and in particular, data about the PREST subjects are lacking. Children previously diagnosed with brain tumours are mostly included in Swedish mainstream schools, thus more and broader information about their strength and difficulties is needed to design adequate support. Larger nationwide, population based registry studies can contribute to this knowledge.