Ellen Ruud

• Bratteteig, Mari; Grydeland, May; Anderssen, Sigmund Alfred; Ruud, Ellen; Torsvik, Ingrid Kristin & Thorsen, Lene [Show all 14 contributors for this article] (2026). Weekly physical activity trajectories in short- and long-term survivors of childhood cancer: the PACCS and SURfit studies. Journal of cancer survivorship. ISSN 1932-2259. doi: 10.1007/s11764-026-02086-2. Full text in Research Archive Show summary

  Purpose Identify and describe weekly physical activity (PA) trajectories in adolescent and adult childhood cancer survivors (survivors), describe characteristics of survivors following different PA trajectories, and compare PA trajectories to controls. Methods This study includes adolescent (9–18 years) survivors and controls from the Physical Activity in Childhood Cancer Survivors (PACCS) study and adult (18–49 years) survivors from the survivor fitness (SURfit) study and controls from the Norwegian National Physical Activity Survey 2. Weekly trajectories of accelerometer-measured PA were identified by multivariate latent class mixed models using daily minutes of moderate-to-vigorous and light PA (MVPA, LPA). Survivors’ characteristics related to different PA trajectories were assessed using a descriptive approach, and PA trajectories between survivors and controls were visually compared. Results We identified four PA trajectories among adolescents (Low regular; Medium, drop weekend; Medium, peak Friday; and Medium regular) and four among adult survivors (Medium regular; Medium, drop weekend; Medium regular MVPA, high regular LPA; and High, drop weekend). The main factors related to the different PA trajectories were sex, age at assessment, sleep, and (parental) education, whereas diagnosis seemed important in adolescent survivors only. In adolescents, trajectories were comparable between survivors and controls, while in adults, only three trajectories were comparable. The allocation to the different trajectories was more favorable in adolescent survivors (fewer in the Low trajectory) and adult survivors (no Low regular MVPA trajectory was identified in survivors) compared to controls. Implications for Cancer Survivors Our findings show many different behavioral approaches to accumulate PA over a week. They highlight the need for targeted PA interventions in a subset of survivors (i.e., adolescent, female survivors of CNS tumors). Developing interventions to prevent PA drops on the weekend holds high potential.

• Johansen, Sara Hassing; Edvardsen, Elisabeth; Raastad, Truls; Ruud, Ellen; Deng, Wei Hai & Bratteteig, Mari [Show all 10 contributors for this article] (2026). Associations Between Physical Fitness and Fatigue in Adolescent Childhood Cancer Survivors: The PACCS Study. Pediatric Blood & Cancer. ISSN 1545-5009. doi: 10.1002/1545-5017.70478. Full text in Research Archive
• Franzén, Anna Reinfjell; Stubberud, Jan Egil; Rø, Torstein Baade; Lydersen, Stian; Egset, Kaja Solland & Ruud, Ellen [Show all 11 contributors for this article] (2026). Mental Distress, Fatigue and Executive Function in Adult Survivors of Childhood Leukemia and Non-Hodgkin Lymphoma. Current Oncology. ISSN 1198-0052. 33(7), p. 1–12. doi: 10.3390/curroncol33070397. Full text in Research Archive
• Larsen, Elna Hamilton; Ålykkja, Anette; Mellblom, Anneli; Ruud, Ellen; Wahl, Astrid Klopstad & Lie, Hanne Cathrine (2025). The Development and Feasibility Testing of the Nurse-Led Transitioning Adolescents Off Cancer Treatment (TACT) Intervention. Journal of Advanced Nursing. ISSN 0309-2402. 81(9), p. 6047–6063. doi: 10.1111/jan.16750. Full text in Research Archive Show summary

  Aim To develop and assess the feasibility of a nurse-led intervention aimed at improving the transition from cancer treatment to survivorship for adolescents by providing personalised information and psychosocial and self-management support. Design Intervention development through co-creation with adolescent patients with cancer, their parents and health care professionals, based on the MRC framework and qualitative feasibility testing. Methods The intervention development involved three steps: (a) identifying the problem through interviews with key stakeholders and by reviewing existing evidence on transition tools and practices; (b) designing the intervention through co-creation workshops with stakeholders and (c) assessing feasibility, acceptability and participants' experiences of the intervention through interviews with adolescents, parents, healthcare professionals and teachers. Results The Transitioning Adolescents with Cancer off Treatment (TACT) intervention was developed, and feasibility was tested between October 2021 and October 2022. TACT included two nurse-led consultations addressing transition concerns and a videoconference with local support networks to inform and activate stakeholders. Communication tools were developed and successfully used to address adolescents' needs, tailor information and support self-management. Conclusion The nurse-led TACT intervention appears feasible and acceptable for clinical practice, with no major changes needed. Participants reported that the intervention helped prepare adolescent cancer patients to transition to survivorship by providing tailored information and psychosocial and self-management support. Impact Despite high survival rates of childhood cancers and the growing awareness of the challenges adolescents and their families face when transitioning off treatment to survivorship, few interventions are available. The novel TACT intervention indicates that nurses are well-positioned to provide broad, tailored care addressing survivors' multi-faceted needs and challenges associated with this transition. Report Method Consolidated criteria for reporting qualitative research (COREQ). Patient or Public Contribution Adolescent survivors, their parents, nurses and physicians involved in their care contributed through co-creation groups, contributing feedback that shaped and refined the TACT intervention.

• Edvardsen, Elisabeth; Ruud, Ellen; Rueegg, Corina Silvia; Kvidaland, Haakon Kristian; Torsvik, Ingrid Kristin & Bovim, Lars Peder Vatshelle [Show all 11 contributors for this article] (2025). Physical Fitness and Physical Activity in Adolescent Childhood Cancer Survivors and Controls: The PACCS Study. Medicine & Science in Sports & Exercise. ISSN 0195-9131. 57(10), p. 2286–2293. doi: 10.1249/MSS.0000000000003758. Full text in Research Archive Show summary

  Objectives This study aimed to compare physical fitness, function, and physical activity (PA) in adolescent childhood cancer survivors (CCSs) to age- and sex-matched controls and across different cancer diagnoses. Methods This multicenter cross-sectional study (Physical Activity among Childhood Cancer Survivors) included CCSs aged 9–18 yr (≥1-yr after cancer treatment) and age- and sex-matched controls. Physical fitness tests included cardiorespiratory fitness (V̇O2max) and muscular strength (maximal isometric handgrip, knee extension, and chest press). Physical function tests included a 1-min sit-to-stand test (STS) and countermovement jump (CMJ). PA was measured by accelerometer for 7 d. We used linear mixed-effects models to compare outcomes between CCSs and controls, and across diagnostic groups. Results We included 157 CCSs and 113 controls aged 13.4 ± 2.6 yr (mean ± SD). Cancer types were leukemia (n = 78), central nervous system (CNS) tumors (n = 18), lymphoma (n = 16), and other solid tumors (n = 45). CCSs had lower V̇O2max (marginal mean (95% confidence interval), 41.7 (38.4–45.0) vs 46.4 (42.9–49.8) mL·kg−1·min−1; P < 0.001), knee-extension strength (35.4 (34.1–36.8) vs 38.2 (36.7–39.7) kg, P = 0.003), chest-press strength (30.0 (28.4–31.6) vs 32.8 (31.0–34.7) kg, P = 0.007), STS repetitions (57.5 (55.8–59.3) vs 60.0 (58.0–62.0) P = 0.017), and CMJ height (22.1, (20.5–23.8) vs 24.9 (23.2–26.6) cm, P < 0.001). PA levels and sedentary time were similar in both groups (8513 (7993–9034) vs 9000 (8404–9596) steps per day, P = 0.174, respectively). Survivors of CNS tumors had the lowest values for V̇O2max, muscular strength, physical function, and PA. Conclusions Despite no significant difference in PA levels, adolescent CCSs had 4.2% to 11% lower physical fitness and function compared with controls, where survivors of CNS tumors performed the poorest.

• Deng, Wei Hai; Lie, Hanne Cathrine; Ruud, Ellen; Loge, Jon Håvard; Kiserud, Cecilie E. & Rueegg, Corina Silvia (2024). Profiles of Fatigue and Psychological Symptoms in Long-Term Childhood, Adolescent, and Young Adult Cancer Survivors—The NOR-CAYACS Study. Cancer Medicine. 13(22). doi: 10.1002/cam4.70425. Full text in Research Archive Show summary

  Introduction Long-term childhood, adolescent, and young adult cancer survivors (CAYACS) are at risk of fatigue and psychological problems. However, their interactions remain largely unexplored. Understanding how they cluster can inform treatment and person-centered follow-up care. We aimed to identify and describe profiles of co-occurring fatigue and psychological symptoms and investigate their associations with health-related quality of life (HRQOL) in CAYACS. Methods NOR-CAYACS (The Norwegian Childhood, Adolescents and Young Adult Cancer Survivors study) was a nationwide survey involving adult survivors of any childhood cancer (aged < 19 years at diagnosis) and selected young adult cancers (breast and colorectal cancers, non-Hodgkin lymphoma, leukemias, and malignant melanomas, aged 19–39 years at diagnosis) identified through the Cancer Registry of Norway. We included 1893 survivors aged ≥ 18 years, ≥ 5 years since diagnosis. We performed latent profile analysis with six continuous outcomes: physical and mental fatigue, depression, anxiety, post-traumatic stress symptoms, and fear of recurrence. Results We identified an overall “Low” (64%), a “Moderate fatigue/high anxiety” (18%), a “High fatigue/moderate distress” (13%), and an overall “High” (5%) symptom burden profile. The “High” profile exhibited lowest physical- and mental-HRQOL with T-scores −9.8 (95% confidence interval [95% CI]: −12.5, −7.1) and −25.0 (95% CI: −26.7, −23.3) compared to the “Low” profile. Conclusion We identified four profiles, two characterized by high fatigue and two near normative fatigue levels, each with different psychological symptom burden. Greater symptom burden corresponded to lower HRQOL, with high fatigue profiles showing lower physical HRQOL. These profiles help identify at-risk individuals and allow for targeting interventions and follow-up care to survivors' unique constellation of symptoms.

• Bratteteig, Mari; Rueegg, Corina Silvia; Lie, Hanne Cathrine; Thorsen, Lene; Larsen, Elna Hamilton & Larsen, Marie Hamilton [Show all 14 contributors for this article] (2024). Physical activity behaviors and screen time in young childhood cancer survivors: the Physical Activity in Childhood Cancer Survivors Study. Journal of cancer survivorship. ISSN 1932-2259. doi: 10.1007/s11764-024-01671-7. Full text in Research Archive Show summary

  Purpose: In childhood cancer survivors (CCS), high physical activity (PA) and low sedentary time may reduce risks of late-effects. PA behaviors and screen time, and how they relate to moderate-to-vigorous PA (MVPA) in CCS, are largely unknown. We examined PA behaviors and screen time, and their cross-sectional associations with MVPA. Methods: CCS from any cancer diagnosis (≥ l year post-treatment), aged 9–16 years at study, were eligible in the international Physical Activity in Childhood Cancer Survivors (PACCS) study. PA behaviors (school transport, intensity-effort in physical education (“PE intensity”), leisure-time PA) and screen time were assessed by self-report, and MVPA by accelerometers (ActiGraph GT3X-BT). Multivariable linear regressions were used to assess associations between PA behaviors and screen time with MVPA. Results: We included 481 CCS (48% girls, mean age 12.2 years). Passive school transport (prevalence 42%) was associated with 10% lower MVPA/day (β = 6.6 min, 95% CI 3.3–10.0), low PE

• Egset, Kaja Solland; Stubberud, Jan Egil; Ruud, Ellen; Hjort, Magnus Aasved; Eilertsen, Mary-Elizabeth & Sund, Anne Mari [Show all 9 contributors for this article] (2024). Neurocognitive outcome and associated factors in long-term, adult survivors of childhood acute lymphoblastic leukemia, treated without cranial radiation therapy. Journal of the International Neuropsychological Society. ISSN 1355-6177. 30(6), p. 523–532. doi: 10.1017/S1355617724000080. Full text in Research Archive Show summary

  Objective: There is limited research on neurocognitive outcome and associated risk factors in long-term, adult survivors of childhood acute lymphoblastic leukemia (ALL), without treatment of cranial radiation therapy. Moreover, the impact of fatigue severity and pain interference on neurocognition has received little attention. In this cross-sectional study, we examined neurocognitive outcome and associated factors in this population. Method: Intellectual abilities, verbal learning/memory, processing speed, attention, and executive functions were compared to normative means/medians with one sample t tests or Wilcoxon signed-rank tests. Associations with risk factors, fatigue severity, and pain interference were analyzed with linear regressions. Results: Long-term, adult survivors of childhood ALL (N = 53, 51% females, mean age = 24.4 years, SD = 4.4, mean = 14.7 years post-diagnosis, SD = 3.4) demonstrated above average intellectual abilities, but performed below average in attention, inhibition, processing speed, and shifting (p < 0.001). Executive functioning complaints were significantly higher than normative means, and positively associated with fatigue (p < 0.001). There was no interaction between sex and fatigue and no neurocognitive impairments were associated with pain interference, risk group, age at diagnosis, or sex. Conclusions: Long-term, adult survivors of ALL treated without cranial radiation therapy, demonstrate domain-specific performance-based neurocognitive impairments. However, continued research on the neurocognitive outcome in this population as they age will be important in the coming years. Executive functioning complaints were frequently in the clinical range, and often accompanied by fatigue. This suggests a need for cognitive rehabilitation programs.

• Egset, Kaja Solland; Weider, Siri; Hjemdal, Odin; Ruud, Ellen; Hjort, Magnus Aasved & Eilertsen, Mary-Elizabeth [Show all 9 contributors for this article] (2024). Exploring the Discrepancy Between Subjective and Objective Measures of Executive Functions in Young Adult Survivors of Childhood Acute Lymphoblastic Leukemia. Journal of Adolescent and Young Adult Oncology. ISSN 2156-5333. 0, p. 1–7. doi: 10.1089/jayao.2024.0105. Full text in Research Archive Show summary

  Purpose: Childhood acute lymphoblastic leukemia (ALL) is associated with executive dysfunction in long-term survivorship. This is evidenced by subjective and objective measures of executive functions (EFs). However, the two measures do not always align, and the EF discrepancy in this population is understudied. This cross-sectional study aimed to examine the association between global measures of subjective and objective EF in young adult (YA) survivors of childhood ALL. Second, we aimed to explore how psychological distress, fatigue, self-efficacy, and estimated IQ relate to the discrepancy between these measures. Methods: A total of 53 subjects (age 18–34) participated in a clinical trial baseline assessment (clinicaltrials.gov NCT04541056). The Behavior Rating Inventory of Executive Function for Adults assessed subjective EFs. Results from six neurocognitive tests were combined to represent objective EFs. Discrepancy scores were calculated by subtracting the objective EF composite score from the subjective EF score. Spearman’s correlations and simple and multiple linear regression analyses were performed to explore associations and predictors for the global EF discrepancy. Results: Subjective and objective measures of EF were moderately correlated (rs = 0.407). The regression analyses showed that psychological distress (R2 = 0.44), fatigue (R2 = 0.29), and self-efficacy (R2 = 0.24) significantly predicted the global EF discrepancy (p < .001). Only psychological distress explained unique variation (B = −0.46). Conclusion: Neurocognitive tests and self-reports offer valuable insights into EF assessment for YA survivors. Psychological distress emerged as the most central contributor to the overall EF discrepancy. Consequently, screening for anxiety and depression alongside subjective EF complaints will be of significance.

• Larsen, Elna Hamilton; Wahl, Astrid Klopstad; Ruud, Ellen; Mellblom, Anneli; Ålykkja, Anette & Lie, Hanne Cathrine (2024). Adolescent Cancer Survivors and Their Parents’ Experiences With the Transition Off Treatment to Survivorship: A Qualitative Interview Study. Journal of Pediatric Hematology/Oncology Nursing (JOPHON). ISSN 2752-7530. 41(3), p. 172–187. doi: 10.1177/27527530231214528. Full text in Research Archive
• Richartz, Nina; Pietka, Wojciech; Yadav, Ajay; Bostad, Monica; Bhagwat, Sampada & Naderi, Soheil [Show all 10 contributors for this article] (2023). N-acetyl cysteine turns EPAC activators into potent killers of acute lymphoblastic leukemia cells. Journal of Biological Chemistry. ISSN 0021-9258. 300(1). doi: 10.1016/j.jbc.2023.105509. Full text in Research Archive Show summary

  Today, the majority of patients with pediatric B cell precursor acute lymphoblastic leukemia (BCP-ALL, hereafter ALL) survive their disease, but many of the survivors suffer from life-limiting late effects of the treatment. ALL develops in the bone marrow, where the cells are exposed to cAMP-generating prostaglandin E2. We have previously identified the cAMP signaling pathway as a putative target for improved efficacy of ALL treatment, based on the ability of cAMP signaling to reduce apoptosis induced by DNA damaging agents. In the present study, we have identified the antioxidant N-acetyl cysteine (NAC) as a powerful modifier of critical events downstream of the cell-permeable cAMP analog 8-(4-chlorophenylthio) adenosine-3′, 5′- cyclic monophosphate (8-CPT). Accordingly, we found NAC to turn 8-CPT into a potent killer of ALL cells in vitro both in the presence and absence of DNA damaging treatment. Furthermore, we revealed that NAC in combination with 8-CPT is able to delay the progression of ALL in a xenograft model in NOD-scid IL2Rγnull mice. NAC was shown to rely on the ability of 8-CPT to activate the guanine-nucleotide exchange factor EPAC, and we demonstrated that the ALL cells are killed by apoptosis involving sustained elevated levels of calcium imposed by the combination of the two drugs. Taken together, we propose that 8-CPT in the presence of NAC might be utilized as a novel strategy for treating pediatric ALL patients, and that this powerful combination might be exploited to enhance the therapeutic index of current ALL targeting therapies.

• Bratteteig, Mari; Rüegg, Corina Silvia; Raastad, Truls; Grydeland, May; Torsvik, Ingrid Kristin & Schindera, Christina [Show all 8 contributors for this article] (2023). Physical Activity, Fitness, and Cardiovascular Disease Risk in Adolescent Childhood Cancer Survivors Compared to Controls: The Physical Activity in Childhood Cancer Survivors Study. Journal of Adolescent and Young Adult Oncology. ISSN 2156-5333. p. 1–9. doi: 10.1089/jayao.2023.0063. Full text in Research Archive Show summary

  Purpose: Childhood cancer survivors have increased risk of cardiac late effects that can be potentially mitigated by physical activity and fitness. We aimed to (1) compare cardiovascular disease (CVD) risk between survivors and controls, and (2) examine whether the associations of moderate-to-vigorous physical activity (MVPA), cardiorespiratory fitness (CRF), and musculoskeletal fitness (MSF) with CVD risk factors differed between survivors and controls. Methods: Within the Physical Activity in Childhood Cancer Survivors (PACCS) study, we assessed CVD risk factors (android fat mass, systolic blood pressure [SBP], total cholesterol/high-density lipoprotein [HDL]-cholesterol, and glycosylated hemoglobin) in 157 childhood cancer survivors and 113 age- and sex-matched controls aged 9–18 years. We used multivariable mixed linear regression models to compare CVD risk factors between survivors and controls, and assess associations of MVPA, CRF, and MSF with CVD risk factors. Results: Compared with controls, survivors had more android fat mass (861 vs. 648 g, p = 0.001) and lower SBP (114 vs. 118 mmHg, p = 0.002). MVPA, CRF, and MSF were associated with lower levels of android fat mass and total cholesterol/HDL-cholesterol, and higher SBP in survivors. Associations of MVPA, CRF, and MSF with CVD risk factors were similar in survivors and controls (Pinteraction > 0.05), except the associations of CRF and MSF with android fat mass, which were stronger in survivors than in controls (Pinteraction ≤ 0.001). Conclusion: Owing to higher levels of android fat mass and its stronger association with physical fitness in childhood cancer survivors compared with controls, survivors should get targeted interventions to increase fitness to reduce future risk of CVD.

• Grydeland, May; Bratteteig, Mari; Rüegg, Corina Silvia; Lie, Hanne Cathrine; Thorsen, Lene & Larsen, Elna Hamilton [Show all 14 contributors for this article] (2023). Physical Activity Among Adolescent Cancer Survivors: The PACCS Study. Pediatrics. ISSN 0031-4005. 152(3). doi: 10.1542/peds.2023-061778. Full text in Research Archive Show summary

  OBJECTIVES: Physical activity (PA) may modify risks of late effects after cancer. We aimed to examine levels of PA and sedentary time (ST) in a large, international sample of adolescent childhood cancer survivors in relation to sociodemographic and cancer-related factors and compare levels of PA and ST to reference cohorts. METHODS: Survivors from any cancer diagnosis who had completed cancer treatment ≥1 year ago, aged 9 to 16 years, were eligible for the multicenter Physical Activity in Childhood Cancer Survivors study. PA and ST were measured by ActiGraph GT3X+ accelerometers. We performed linear regression analyses to assess factors associated with moderate-to-vigorous PA (MVPA) and ST, and compared marginal means of total PA, MVPA, and ST in 432 survivors to sex- and age-stratified references (2-year intervals) using immediate t-tests for aggregated data. RESULTS: Among survivors, 34% fulfilled the World Health Organization’s PA recommendation of ≥60 min of daily MVPA on average and their ST was 8.7 hours per day. Being female, older, overweight, a survivor of central nervous system tumor, or having experienced relapse were associated with lower MVPA and/or higher ST. Generally, male survivors spent less time in MVPA compared with references, whereas female survivors had similar levels. Both male and female survivors had higher ST than references in nearly all age groups. CONCLUSIONS: The low PA and high ST in this large sample of adolescent childhood cancer survivors is worrisome. Combined, our results call for targeted interventions addressing both PA and ST in follow-up care after childhood cancer.

• Engan, Britt; Diab, Simone; Brun, Henrik; Raastad, Truls; Torsvik, Ingrid Kristin & Omdal, Tom Roar [Show all 11 contributors for this article] (2023). Systolic myocardial function measured by echocardiographic speckle-tracking and peak oxygen consumption in pediatric childhood cancer survivors—a PACCS study. Frontiers in Cardiovascular Medicine. 10. doi: 10.3389/fcvm.2023.1221787. Full text in Research Archive Show summary

  Background: Cancer therapy-related cardiotoxicity is a major cause of cardiovascular morbidity in childhood cancer survivors. The aims of this study were to investigate systolic myocardial function and its association to cardiorespiratory fitness in pediatric childhood cancer survivors. Methods: In this sub-study of the international study “Physical Activity and fitness in Childhood Cancer Survivors” (PACCS), echocardiographic measures of left ventricular global longitudinal strain (LV-GLS) and right ventricular longitudinal strain (RV-LS) were measured in 128 childhood cancer survivors aged 9–18 years and in 23 age- and sex-matched controls. Cardiorespiratory fitness was measured as peak oxygen consumption achieved on treadmill and correlated to myocardial function. Results: Mean LV-GLS was reduced in the childhood cancer survivors compared to the controls, −19.7% [95% confidence interval (CI) −20.1% to −19.3%] vs. −21.3% (95% CI: −22.2% to −20.3%) (p = 0.004), however, mainly within normal range. Only 13% of the childhood cancer survivors had reduced LV longitudinal strain z-score. Mean RV-LS was similar in the childhood cancer survivors and the controls, −23.2% (95% CI: −23.7% to −22.6%) vs. −23.3% (95% CI: −24.6% to −22.0%) (p = 0.8). In the childhood cancer survivors, lower myocardial function was associated with lower peak oxygen consumption [correlation coefficient (r) = −0.3 for LV-GLS]. Higher doses of anthracyclines (r = 0.5 for LV-GLS and 0.2 for RV-LS) and increasing time after treatment (r = 0.3 for LV-GLS and 0.2 for RV-LS) were associated with lower myocardial function. Conclusions: Left ventricular function, but not right ventricular function, was reduced in pediatric childhood cancer survivors compared to controls, and a lower left ventricular myocardial function was associated with lower peak oxygen consumption. Furthermore, higher anthracycline doses and increasing time after treatment were associated with lower myocardial function, implying that long-term follow-up is important in this population at risk.

• Ålykkja, Anette; Larsen, Elna Hamilton; Larsen, Marie Hamilton; Ruud, Ellen; Puhr, Anita & Lie, Hanne Cathrine (2023). Life after paediatric brain tumour; the perspectives of the survivors and their parents. Journal of Advanced Nursing. ISSN 0309-2402. 80(2), p. 550–565. doi: 10.1111/jan.15812. Full text in Research Archive Show summary

  Aims: To explore how long-term and late effects of paediatric brain tumours influence the everyday lives of survivors at various ages and their parents. Design: A qualitative interview study using reflexive thematic analysis. Methods: We conducted individual interviews and focus groups with 14 paediatric brain tumour survivors aged 9–52 years and 16 parents, which were audiorecorded and transcribed. We inductively analyzed the data using Braun and Clarke's reflexive thematic analysis. Inductively derived themes were then mapped onto the components of the International Classification of Functioning, Disability and Health framework to examine the survivors' everyday functioning. Results: All survivors experienced ongoing long-term and late effects but with considerable variations in how these restricted the survivors' functioning and thus their ability to participate in everyday life activities (e.g. social, educational and work activities). All survivors expressed an explicit focus on and use of different strategies to manage their perceived functional limitations and participation restrictions. Many survivors expressed discrepancies between their own goals, expectations and actual abilities post-cancer; making them very aware of their limitations. In addition, many survivors and parents experienced ongoing concerns about the survivors’ future, including the risk of late effects, relapse or other complications. Conclusion: A wide range of long-term and late effects continue to affect the survivors and their parents' functioning and everyday lives. Their ongoing needs emphasize the importance of comprehensive, life-long follow-up care, as recommended. Implications for the Profession and/or Patient Care: The complex challenges across the biopsychosocial realms faced by the survivors supports the call for multidisciplinary survivorship care. Nurses are well positioned to lead such care, as they are trained to provide holistic care and thereby support survivors' functioning and activity participation in everyday life. Reporting Method: We used the COREQ guidelines when reporting the study. Patient or Public Contribution: Two user representatives (one young adult PBT survivor and one mother of a PBT survivor) ensured the relevance and quality of the semi-structured interview guides prior to the interviews with the survivors and parents. The guides were sent to the user representatives by mail, and they provided their written feedback by mail to the first author.

• Larsen, Marie Hamilton; Larsen, Elna Hamilton; Ålykkja, Anette; Underhaug, Katrine Aass; Ruud, Ellen & Lie, Hanne Cathrine (2023). “The post-it note just said leukemia” - Information exchange challenges of teachers and local stakeholders supporting young childhood cancer survivors at school – A qualitative study from the Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) group. European Journal of Oncology Nursing. ISSN 1462-3889. 68. doi: 10.1016/j.ejon.2023.102464. Full text in Research Archive Show summary

  Purpose: Explore teachers’, school nurses’, cancer coordinators` and other local stakeholders’ experiences providing education and support for young childhood cancer survivors in the years after treatment. Methods: We conducted four focus groups and three individual telephone interviews with 15 teachers, nine nurses and three other stakeholders, using inductive thematic analysis inspired by Braun & Clark. Nvivo v12 was used for data-management. Results: Three main themes were developed; “Perceived parent attitudes and facilitation”, “The missing link –lack of communication and collaboration”, and “Enabling mastery, inclusion and thriving”. Parents were perceived to be the sole managers of providing cancer information and school-related follow-up needs. Teachers and other stakeholders experienced the nonexistence of information from specialist healthcare services and poor communication within the municipality. Teachers went to great lengths to meet survivors’ pedagogical needs and facilitate peer interactions. Teachers voiced a need for more cancer and late effect knowledge, not being dependent solely on parents` for information. Conclusions: Teachers and other stakeholders have essential roles in the continuing school experience for survivors. A more regulated teamwork between the stakeholders in the municipalities and the specialist healthcare system could ensure tailored late effect information at school. Implementing formal support could enable a co-creation of a personalized follow up that could relieve the burden on survivors, parents and teachers.

• Andries, Aristomo; Ørstavik, Kristin; Rueegg, Corina Silvia; Eng, Sindre Rike; Edvardsen, Elisabeth & Allen, Sara Maria [Show all 10 contributors for this article] (2022). Polyneuropathy in Adolescent Childhood Cancer Survivors: The PACCS Study. Pediatric Neurology. ISSN 0887-8994. 140. doi: 10.1016/j.pediatrneurol.2022.11.012. Full text in Research Archive Show summary

  Background: Childhood cancer survivors (CCS) are at risk of polyneuropathy due to chemotherapy, but studies in young survivors are scarce and diagnosis is challenging. We aimed to study the presence of polyneuropathy and the possible effect of cumulative doses of chemotherapeutic agents in a representative group of adolescent survivors. Methods: CCS aged nine to 18 years and age- and sex-matched controls were recruited from the cross-sectional Physical Activity and Fitness among Childhood Cancer Survivors (PACCS) study. CCS with various cancer diagnoses who had ended cancer treatment one year or more before study were included. Polyneuropathy was evaluated clinically and with nerve conduction studies (NCSs) in three motor and five sensory nerves. We used mixed-effects linear regression models to compare CCS and controls, and investigate possible associations between cumulative chemotherapy doses and NCS amplitudes. Results: A total of 127 CCS and 87 controls were included, with 14% CCS having probable or confirmed polyneuropathy. NCS amplitudes were lower in survivors compared with controls in all nerves. The largest mean difference was 3.47 μV (95% confidence interval [CI], 2.18 to 4.75) in the tibial plantar medial sensory and 1.91 mV (95% CI, 0.78 to 3.04) in the tibial motor nerve. The cumulative dose of platinum derivatives was associated with lower tibial motor nerve amplitude (−0.20; 95% CI, −0.35 to −0.04 mV for 100 mg/m2 dose increase) but not in other nerves. We found no significant associations between vinca alkaloids cumulative dose and amplitudes. Conclusions: CCS without clinical signs or symptoms of polyneuropathy may have subtle nerve affection. The clinical long-term impact of this novel observation should be evaluated in larger, longitudinal studies.

• Larsen, Elna Hamilton; Mellblom, Anneli; Ruud, Ellen; Wahl, Astrid Klopstad & Lie, Hanne Cathrine (2022). Prepared for survivorship? Multidisciplinary healthcare professionals' experiences with adolescents’ transition off cancer treatment: A focus group study. European Journal of Oncology Nursing. ISSN 1462-3889. 58, p. 1–10. doi: 10.1016/j.ejon.2022.102150. Full text in Research Archive Show summary

  Purpose Research indicates that re-entering everyday life after completed cancer treatment can be challenging for adolescents, and knowledge about how healthcare professionals prepare them is scarce. This study explored (a) healthcare professionals’ experiences with adolescents with cancer transitioning off active cancer treatment; and (b) what healthcare professionals’ do to prepare adolescents and their families for this transition; and c) their ideas to improve current practice. Methods We conducted 8 focus-group interviews with 56 multidisciplinary healthcare professionals working in paediatric oncology settings across Norway. The sample consisted of nurses, physicians, social workers, psychologists, physiotherapists, a nutritionist, a dentist, a teacher and a music therapist. Inductive thematic analyses was used. Results We identified three main themes: (a) the multifaceted nature of the end of the treatment phase; (b) navigating challenges in providing early survivorship care; and (c) healthcare professionals' views and wishes regarding their role in transition care. The healthcare professionals conveyed uncertainty regarding how and when to talk about survivorship during treatment. Post-treatment, healthcare professionals' challenges included time restrictions, meeting the families’ individual information needs and providing tailored psychosocial care. Suggestions for improvements included checklists, defined roles and dedicated transition consultations. Conclusions Healthcare professionals were aware of the challenges families face during transition, and felt many were not addressed adequately. Although they had similar concrete suggestions for improvements, system barriers and lack of time and focus on survivorship were seen to hamper implementation. Implementing a standardized transition programme with increased nurse involvement could potentially improve the transition phase for everyone involved.

• Przybyla, Weronika; Paulsen, Kirsti; Mishra, Charitra Kumar; Nygård, Ståle; Engebretsen, Solveig & Ruud, Ellen [Show all 9 contributors for this article] (2022). Whole exome sequencing of high-risk neuroblastoma identifies novel non-synonymous variants. PLOS ONE. 17(8), p. 1–24. doi: 10.1371/journal.pone.0273280. Full text in Research Archive Show summary

  Neuroblastoma (NBL), one of the main death-causing cancers in children, is known for its remarkable genetic heterogeneity and varied patient outcome spanning from spontaneous regression to widespread disease. Specific copy number variations and single gene rearrangements have been proven to be associated with biological behavior and prognosis; however, there is still an unmet need to enlarge the existing armamentarium of prognostic and therapeutic targets. We performed whole exome sequencing (WES) of samples from 18 primary tumors and six relapse samples originating from 18 NBL patients. Our cohort consists of 16 high-risk, one intermediate, and one very low risk patient. The obtained results confirmed known mutational hotspots in ALK and revealed other non-synonymous variants of NBL-related genes (TP53, DMD, ROS, LMO3, PRUNE2, ERBB3, and PHOX2B) and of genes cardinal for other cancers (KRAS, PIK3CA, and FLT3). Beyond, GOSeq analysis determined genes involved in biological adhesion, neurological cell-cell adhesion, JNK cascade, and immune response of cell surface signaling pathways. We were able to identify novel coding variants present in more than one patient in nine biologically relevant genes for NBL, including TMEM14B, TTN, FLG, RHBG, SHROOM3, UTRN, HLA-DRB1, OR6C68, and XIRP2. Our results may provide novel information about genes and signaling pathways relevant for the pathogenesis and clinical course in high-risk NBL.

• Mellblom, Anneli; Ruud, Ellen; Loge, Jon Håvard; Lie, Hanne Cathrine & Finset, Arnstein (2022). From Observation to Action: Developing and Pilot-Testing a Communication Tool for Follow-up Consultations with Adolescent Cancer Survivors. Journal of Adolescent and Young Adult Oncology. ISSN 2156-5333. 11(4), p. 419–426. doi: 10.1089/jayao.2021.0123. Full text in Research Archive Show summary

  Purpose: Efficient physician communication with adolescent cancer survivors (ACS) during follow-up consultations is important to enable survivors to take responsibility for their health. The present study had two aims: to develop a communication tool to enhance structured consultations and improve clinician communication in follow-up consultations, and to pilot-test the tool in physicians' consultations with ACS. Methods: Clinicians and communication experts collaborated closely to develop the 7 Memory Hooks (7MH) communication tool and a corresponding coding scheme for scoring communication behavior in consultations. Thirty-seven follow-up consultations between ACS and physicians were video-recorded (22 before intervention and 15 after intervention). The intervention consisted of a didactic lecture, a group workshop, and individual coaching to provide feedback to physicians on the communication skills observed in the pre-intervention videos. We then compared physicians' communication behavior both before and after intervention. Results: Fourteen physicians participated in the 7MH training. The mean total score on the 7MH scheme was significantly higher post-intervention compared with pre-intervention (p = 0.001). Six behaviors changed significantly after the intervention. At a group level, physicians were more likely to be alone with the adolescent (p = 0.004) and to prepare the patient for transition to adult heath care (p = 0.040). They asked more often about the patients' expectations (p = 0.007) and resources ((p = 0.019). And they acknowledged patients' concerns more often (p = 0.016) but talked significantly less about physical activity (p = 0.012). Conclusion: A physician communication tool, designed bottom-up and developed in collaboration with the clinic, shows promising effects on physicians' communication behavior at follow-up consultations with ACS

• Massey, Richard; Myrdal, Ole Henrik; Diep, Phoi Phoi; Dirdal, Marta Maria; Brinch, Lorentz & Gullestad, Lars [Show all 9 contributors for this article] (2022). Reduced exercise capacity is associated with left ventricular systolic dysfunction in long-term survivors of allogeneic hematopoietic stem-cell transplantation. Journal of Clinical Ultrasound. ISSN 0091-2751. 51(1), p. 5–15. doi: 10.1002/jcu.23264. Full text in Research Archive Show summary

  Purpose Exercise intolerance is a common complication in survivors of allogeneic hematopoietic stem-cell transplantation (allo-HSCT). The aim of this study was to determine if cardiac function measured with echocardiography is associated with exercise capacity measured with cardio-pulmonary exercise tests in long-term survivors treated in their youth with allo-HSCT. Methods The study included 96 patients, of which 54.2% were female, aged 34.9 ± 11.6 years and 17.7 ± 9.3 years after allo-HSCT. Reduced exercise capacity was defined as <85% of predicted-peak oxygen uptake (VO2peak). Linear regression was used in the prediction of VO2peak (ml/kg/min). Receiver operating characteristic evaluated the accuracy of predicting reduced exercise capacity. Results VO2peak was 36.2 ± 7.7 ml/kg/min and 43 (44.8%) had reduced exercise capacity. Left ventricular ejection fraction was 55.4 ± 5.9% and global longitudinal strain (GLS) was −17.6% ± 2.0%. Left and right ventricular functions were significantly lower in survivors with reduced exercise capacity. Increased body mass index, lower physical activity score, reduced pulmonary function (by forced expiratory volume in 1-s) and reduced left ventricular systolic function (by GLS) were significant independent predictors for reduced VO2peak. GLS was superior to other echocardiographical indices for identifying reduced exercise capacity (area under curve = 0.64, p = 0.014). Conclusions Left ventricular systolic dysfunction measured by GLS is associated with reduced exercise capacity in long-term allo-HSCT survivors.

• Dahl, Alv A; Kiserud, Cecilie E.; Fosså, Sophie Dorothea; Loge, Jon Håvard; Reinertsen, Kristin Valborg & Ruud, Ellen [Show all 7 contributors for this article] (2022). A study of high neuroticism in long-term survivors of childhood, adolescence, and young adult cancers. Scientific Reports. 12(1). doi: 10.1038/s41598-022-15697-3. Full text in Research Archive Show summary

  Neuroticism is a basic personality trait concerning negative feelings under stressful conditions. Our purpose was to examine the rate of high neuroticism and factors associated with high neuroticism in long-term (≥ 5 years) survivors of childhood, adolescent, and young adult cancer (CAYACSs). Norwegian CAYACSs aged 0–39 years when diagnosed and treated between 1985 and 2009 for cancer in childhood/adolescence (0–18 years), or as young adults (19–39 years) and alive in 2015 were mailed a questionnaire. Data from 1629 CAYACSs (481 children/adolescents and 1148 young adults) were analyzed. High neuroticism was found in 44% of survivors of childhood/adolescent cancers versus 34% in survivors of young adult cancer (p < 0.001). The rate of high neuroticism in female CAYACSs was 40% and in males 30% (p < 0.001). The corresponding difference between male survivor group was non-significant. In multivariable analysis, young age at survey, more adverse effects, poor self-rated health, female sex, chronic fatigue, and increased depression remained significantly associated with high neuroticism. Cancer treatment, comorbidity, and lifestyle were significant in bivariate analyses. Cancer at earlier age could increase the risk of high neuroticism among adult survivors. Screening for neuroticism could identify CAYACSs at risk for experiencing multiple health concerns and needing special follow-up attention.

• Egeland, Steinunn E; Lie, Hanne Cathrine; Woldseth, Ellen Martha; Korsvold, Live; Ruud, Ellen & Larsen, Marie Hamilton [Show all 7 contributors for this article] (2022). Exploring reported distress before and pain during needle insertion into a venous access port in children with cancer. Scandinavian Journal of Caring Sciences. ISSN 0283-9318. 00, p. 1–11. doi: 10.1111/scs.13067. Full text in Research Archive Show summary

  Background Venous access port is commonly used during cancer treatment in children, yet little is known about how children experience such needle insertion procedures. Aim To study distress before and pain after venous access port needle insertion among children and adolescents with cancer. A second aim was to explore associations between their self-report of procedure-related distress and pain with proxy reports by parents and nurses. Method The sample included 43 children/adolescents, aged 1–16 years with cancer, treated at two Norwegian university hospitals. The patient, parent(s), and the nurse performing the procedure completed developmentally appropriate 11-point distress and pain scales before and immediately after the venous access port procedure. Data were analysed using descriptive statistics and non-parametric correlations. Ethical issues The ethical code of conduct was followed and conformed to the ethical guidelines adopted by the Regional Committee for Medicine and Health Research and the data protector officer at the hospitals. Results For the youngest children (1–5 years), the median distress proxy score was 8 (range 0–9) and pain proxy score 4 (range 0–10). Median distress and pain scores for children aged 6–12 years were 3 (range 0–9) and 1 (range 0–10), respectively, and for the adolescents (age 13–16) 0 (range 0–6) and 1 (range 0–5), respectively. Patients’ self-reported distress and pain correlated highly with parents’ (distress: rho = 0.83, p < 0.001, pain: rho = 0.92, p < 0.001) and with nurses’ proxy ratings (distress: rho = 0.89, p < 0.001, pain: rho = 0.88, p < 0.001). Conclusion There were individual age differences in experienced distress/pain associated with venous access port needle insertion, with a trend for younger children to experience higher levels of distress/ pain than the older children. Children's self-report of distress/ pain concurred with both parental and nurse proxy reports.

• Bratteteig, Mari; Anderssen, Sigmund Alfred; Rueegg, Corina Silvia; Ruud, Ellen; Torsvik, Ingrid Kristin & Kriemler, Susi [Show all 7 contributors for this article] (2022). Device-measured physical activity and cardiovascular disease risk in adolescent childhood cancer survivors. A physical activity in childhood cancer survivors (PACCS) study. Frontiers in Pediatrics. 10. doi: 10.3389/fped.2022.977365. Full text in Research Archive Show summary

  Objectives: We aimed to compare cardiovascular disease (CVD) risk factors in childhood cancer survivors (CCS) with age- and sex-stratified reference material and examine the association between physical activity (PA) intensities and CVD risk factors in CCS. Materials and methods: Within the cross-sectional, multicenter Physical Activity in Childhood Cancer Survivors (PACCS) study, we collected data on CVD risk factors [VO2–peak (mL⋅kg–1⋅min–1), body mass index (BMI, kg/m2), systolic blood pressure (SBP, mmHg), and total-cholesterol/HDL-cholesterol (Total/HDL)] among CCS aged 9–18 years. CVD risk factors were compared to references with immediate t-tests. We transformed CVD risk factors into z-scores based on international references and generated an individual CVD risk score: [inverse ZVO2–peak + ZBMI + ZSBP + ZTotal/HDL)/4]. Multivariable mixed linear regression models were used to analyze the associations between device-measured PA intensities and CVD risk factors. Results: We included 157 CCS aged on average 13.4 years at inclusion and 8.2 years from diagnosis. Male CCS had lower VO2–peak compared to references (45.4 vs. 49.4 mL⋅kg–1⋅min–1, P = 0.001), higher diastolic BP (67 vs. 63 mmHg, P < 0.001), lower HDL (1.35 vs. 1.44 mmol/L, P = 0.012), as well as a tendency to higher CVD risk score (z-score=0.14 vs. 0.00, P = .075). Female CCS’ CVD risk factors were comparable to references. Vigorous-intensity PA (VPA) was associated with CVD risk factors. A 10-min increase in VPA was associated with higher VO2–peak (β = 4.9, 95% CI, 2.1–7.7), lower Total/HDL (β = −0.3, 95% CI, −0.6 to −0.1) and a lower CVD risk score (β = −0.4, 95% CI, −0.6 to −0.2). Conclusion: Male adolescent CCS had less favorable values of CVD risk factors compared to references. VPA in adolescent CCS is associated with clinically meaningful favorable values of CVD risk factors.

• Tanem, Kristine Eidal; Wilberg, Petter; Diep, Phoi Phoi; Ruud, Ellen; Skaare, Anne B & Brinch, Lorentz [Show all 7 contributors for this article] (2022). Oral chronic GVHD after allogeneic stem cell transplantation without total body irradiation performed at a young age. Supportive Care in Cancer. ISSN 0941-4355. 30(5), p. 4121–4128. doi: 10.1007/s00520-022-06836-7. Full text in Research Archive Show summary

  Abstract Purpose Long-term survivors (LTSs) of allogeneic hematopoietic stem cell transplantation (allo-HCT) may experience oral long-term effects like chronic graft-versus-host disease (oral cGVHD). The aim of this study was to investigate oral cGVHD in patients treated at a young age (&lt; 30 years) more than 5 years after allo-HCT without total body irradiation (TBI). Methods All 94 participants went through a semi-structured interview, and an oral examination. Diagnosis of oral cGVHD was based on the “National Institutes of Health (NIH) cGVHD diagnosis and staging consensus criteria” from 2014. Results Mean age at transplantation was 17.5 years (range 0.4–29.9 years), and mean time since transplantation was 16.7 years (range 6–26 years). Oral cGVHD was diagnosed in 26 (28%) of 94 LTSs. Of which 20 (21.5%) showed lichen planus-like (LPL) changes, and additionally six (6.5%) also fulfilled the diagnostic criteria of oral cGVHD since they had one or more distinctive signs and symptoms of oral cGVHD combined with definite cGVHD in another organ. No LTSs reported oral cGVHD (NIH) grade 3. There was a significant association between cGVHD in the oral cavity and cGVHD in another organ (77% vs 29%, p  &lt; 0.001). Out of 72 LTSs, who answered the questions regarding taste disturbances, 16 (22%) reported dysgeusia. No LTSs developed secondary malignancies in the oral cavity during follow-up time. Conclusion Oral long-term effects, such as oral cGVHD, may persist for many years after allo-HCT without TBI-conditioning in patients treated at a young age.

• Gianinazzi, Micol Eva; Kiserud, Cecilie E.; Ruud, Ellen & Lie, Hanne Cathrine (2022). Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer Survivors. Cancers. 14(6), p. 1–14. doi: 10.3390/cancers14061534. Full text in Research Archive Show summary

  Simple Summary With the growing population of cancer survivors, survivorship management has become central for both medical professionals and patients. This entails, among other factors, empowering survivors with the necessary knowledge about their medical history and their risk for late effects, because informed patients make better lifestyle and health choices. Although a lack of information and low satisfaction with information received are fairly well-documented phenomena among childhood cancer survivors, less is known about survivors of young adult cancer and populations of long-term survivors no longer engaged in follow-up care. This paper aims to fill this gap by investigating information provision in childhood, adolescent and young adult cancer survivors. Abstract Background: Knowledge of medical history and late effects is central in modern survivorship management, especially for long-term childhood, adolescent and young adult cancer survivors’ (CAYACS) with long life expectancy rates and high risks of late effects. Identifying information and knowledge gaps is, therefore, important. As part of the population-based NOR-CAYACS study, we investigated the following: (1) written information received about their disease and treatment, and any information about late effects; (2) satisfaction with this information and associated factors; (3) knowledge about late effects and factors associated with low knowledge of specific late effects. Material and methods: A questionnaire-based survey (Nor-CAYACS) was mailed to 5361 CAYACS (childhood cancers, breast and colorectal cancer, acute lymphatic leukemia, non-Hodgkin lymphoma and malignant melanoma) identified by the Cancer Registry of Norway (CRN). Of these, 2018 answered questions about disease and late effects information and knowledge. Exposure variables were extracted from the questionnaire and CRN. Unfortunately, it was not possible to stratify by treatment in the analyses. We ran descriptive statistics for comparisons and logistic regressions to identify factors associated with outcomes of interest. Results: Overall, 50% to 60% of survivors reported not having received written information about their disease and treatment, or any information about late effects. There was a large variation in reported knowledge across 17 late effects. Lower levels of knowledge were associated with male sex, lower education and poorer health literacy in multivariable regression models. Conclusions: Knowledge of cancer history and risks of late effects is essential for effective self-management, yet significant information and knowledge gaps were reported in this population-based sample of long-term CAYACS. Systematic approaches to making (up-to-date) information available to long-term survivors are needed to ensure that information does not get lost in medical and life transitions. Keywords: CCS; YACS; information provision; late effects; follow-up care; cancer survivorship

• Larsen, Marie Hamilton; Hansson, Kjersti Enger; Larsen, Elna Hamilton; Fridh, Martin Kaj; Petersen, Natasha Nybro & Mellblom, Anneli [Show all 9 contributors for this article] (2022). The gap between expectations and reality: A qualitative study of psychosocial challenges of young childhood cancer survivors from the PACCS study. European Journal of Cancer Care. ISSN 0961-5423. 31(6), p. 1–11. doi: 10.1111/ecc.13696. Full text in Research Archive Show summary

  Objective: In this sub-study from the ‘PACCS’ study, we explored the psychosocial experiences of children and adolescents in everyday life post-cancer treatment and the possible factors that can moderate these experiences. Methods: This is a qualitative explorative study using semi-structured interviews with 43 childhood cancer survivors between the ages of nine and 18 from Norway and Denmark. We conducted a secondary thematic analysis using Malterud's systematic text condensation. Results: Two main themes were identified: ‘The post-treatment gap between expectations and reality’ comprised two subthemes: (1) lack of mastery and feeling different and (2) lack of understanding and acceptance. The second main theme, ‘Managing the gap’, comprised three subthemes: (1) information and knowledge, (2) adjustments and adaptions and (3) social support and openness. The findings reveal that the psychosocial challenges resulted from the remaining ability gap(s). Measures such as tailored information, school adjustments and social support were potential dynamic factors affecting the gap(s) positively or negatively. Psychosocial challenges post-treatment are experiences of lack of acceptance and understanding from others. Conclusion: To safeguard a positive transition back to everyday life, health care providers should support the survivors' psychosocial care, including getting back to school and re-entering social interactions.

• Diep, Phoi Phoi; Rüegg, Corina Silvia; Dirdal, Marta Maria; Brinch, Lorentz; BØ, KRISTINE & Fosså, Kristian [Show all 17 contributors for this article] (2022). Graft-Versus-Host-Disease and Health-Related Quality of Life in Young Long-term Survivors of Cancer and Allogeneic Hematopoietic Stem Cell Transplantation. Journal of Adolescent and Young Adult Oncology. ISSN 2156-5333. 12(1), p. 66–75. doi: 10.1089/jayao.2021.0196. Full text in Research Archive
• Larsen, Elna Hamilton; Mellblom, Anneli; Larsen, Marie Hamilton; Ruud, Ellen; Thorsen, Lene & Petersen, Natasha Nybro [Show all 9 contributors for this article] (2022). Perceived barriers and facilitators to physical activity in childhood cancer survivors and their parents: A large-scale interview study from the International PACCS Study. Pediatric Blood & Cancer. ISSN 1545-5009. 70(1), p. 1–11. doi: 10.1002/pbc.30056. Full text in Research Archive Show summary

  Background Physical activity (PA) may reduce risks of late effects in childhood cancer survivors, yet many have low activity levels. Using the WHO's International Classification of Functioning, Disability, and Health for Children and Youths (ICF-CY) as a conceptual framework, we aimed to identify perceived barriers and facilitators to PA in young survivors and their parents. Design/methods We conducted individual, semi-structured interviews with 63 survivors, aged 9–18 years, ≥1-year off treatment, and 68 parents, recruited from three pediatric oncology departments in Norway and Denmark. Interviews were analyzed inductively using thematic analysis to identify barriers and facilitators to PA, which were mapped onto the ICF-CY model components; body function/structures, activities, participation, and environmental and personal factors. Results Two-thirds of the survivors described how treatment-related impairments of bodily functions (e.g., fatigue, physical weakness, reduced lung capacity) caused physical limitations, reducing opportunities to participate in PA, especially team sports and school physical education. This resulted in a perceived ability gap between survivors and peers, reducing motivation for PA. These PA barriers were moderated by environmental factors that facilitated or further hindered PA participation (family, peer, and school support). Similarily, personal factors also facilitated (acceptance, motivation, goal setting) or hindered (anxiety, low motivation, and lack of trust) PA participation. Conclusion Treatment-related long-term or late effects represented significant barriers to PA as their functional consequences reduced survivors’ capacities and capabilities to be active. Environmental and personal factors acting as facilitators or further barriers to PA were identified. Applying the ICF-CY framework in clinical practice could help to enable PA participation.

• Larsen, Marie Hamilton; Larsen, Elna Hamilton; Ruud, Ellen; Mellblom, Anneli; Helland, Sunniva & Lie, Hanne Cathrine (2021). “I have to do things differently now, but I make it work”—young childhood cancer survivors’ experiences of self-management in everyday living. Journal of cancer survivorship. ISSN 1932-2259. doi: 10.1007/s11764-021-01066-y. Full text in Research Archive Show summary

  Abstract Purpose Living with late effects can affect young childhood cancer survivors’ (CCSs) self-management (SM) abilities. In this study, we explored different approaches to SM of everyday life by young CCS. Methods This is a sub-study of a larger study on Physical Activity among Childhood Cancer Survivors (the PACCS study). We conducted individual interviews with 22 CCS aged 9 to 18 years who were at least 1 year off-treatment. An hybrid inductive-decductive thematic analysis was used. Results Three main themes were identified: (1) managing everyday life with fatigue, (2) building self-management competence, and (3) cancer survivor as part of identity. Late effects, especially fatigue, contributed to a perceived ability gap compared to peers, limiting participation in everyday activities. CCS developed new SM skills to overcome such challenges and pushed themselves physically and mentally to master and balance activities and rest to regain energy. CCS changed activities, adapted their expectations, or legitimized their apparent lack of SM skills to regain a sense of self-efficacy. Managing the impact of cancer on relationships with family and friends also required use of SM strategies. Conclusions The findings expand our currently limited knowledge of young CCS and SM skills they develop to manage everyday life after treatment completion. These, combined with ongoing support from family and peers, “make it work”. Implications for Cancer Survivors The perspectives of young CCS illustrate their SM skills and support needs beyond transitioning off-treatment. Conceptualizing this within follow-up care may contribute to a feeling of mastery and increased satisfaction among CCS.

• Egset, Kaja Solland; Weider, Siri; Stubberud, Jan Egil; Hjemdal, Odin; Ruud, Ellen & Hjort, Magnus Aassved [Show all 10 contributors for this article] (2021). Cognitive Rehabilitation for Neurocognitive Late Effects in Adult Survivors of Childhood Acute Lymphoblastic Leukemia: A Feasibility and Case-Series Study. Frontiers in Psychology. 12. doi: 10.3389/fpsyg.2021.724960. Full text in Research Archive Show summary

  Neurocognitive late effects following the diagnosis and treatment of childhood acute lymphoblastic leukemia (ALL) commonly include impaired executive functions (EFs), with negative consequences for one’s health-related quality of life and mental health. However, interventions for EF impairments are scarce. Thus, the aims of this study were to (1) explore the feasibility and acceptability of the cognitive rehabilitation program Goal Management Training (GMT) and (2) examine whether GMT is associated with positive outcomes across cases of ALL survivors with EF complaints. Four participants (median age 31.5 years) underwent nine GMT modules in a total of five group sessions. Rehabilitation was focused on compensatory strategies to improve real-life EFs. Participants were evaluated at 2-week and 6-month follow-ups. Evaluation of feasibility and acceptability included adherence, a semi structured interview, self-reports, and safety. Additionally, therapists’ experience with implementation was evaluated. Outcome measures included self-reports and neurocognitive tests of attention, EF, and processing speed. All participants completed GMT and rated the intervention as useful, suitable, and satisfactory. The reliable change index showed improved daily life EFs (two participants) and neurocognitive performance (three participants) at 6-month follow-up. Additionally, all participants improved on a “real-life” task involving EF. A future randomized controlled trial is recommended.

• Dahl, Alv A; Kiserud, Cecilie E.; Fosså, Sophie Dorothea; Loge, Jon Håvard; Reinertsen, Kristin Valborg & Ruud, Ellen [Show all 7 contributors for this article] (2021). A controlled study of major depressive episodes in long‐term childhood, adolescence, and young adult cancer survivors (The nor‐cayacs study). Cancers. 13:5800(22), p. 1–13. doi: 10.3390/cancers13225800. Full text in Research Archive Show summary

  Background: A major depressive episode (MDE) is typically self-rated by screening forms identifying probable MDE (pMDE). This population-based cross-sectional questionnaire study examined the prevalence rates of pMDE identified by the PHQ-9 screener in long-term survivors of childhood and adolescence (CACSs) and young adult cancer (YACSs) and a normative sample (NORMs). Methods: Data from 488 CACSs, 1202 YACSs, and 1453 NORMs were analyzed, and pMDE was defined both by cut-off ≥10 on the total PHQ-9 score and by an algorithm. Results: The prevalence rates of pMDE among CACSs were 21.5%, 16.6% in YACSs, and 9.2% among NORMs using the cut-off definition. With the algorithm, the prevalence rates of pMDE were 8.0% among CACSs, 8.1% among YACSs, and 3.9% among NORMs. Independent of definition, CACSs and YACSs had significantly increased prevalence rates of pMDE compared to NORMs. Psychosocial factors and self-rated health were significantly associated with both definitions of pMDE in multivariable analyses, while survivor groups, cancer types, and adverse events were not. Conclusion: Since pMDE has negative health consequences and is amenable to treatment, healthcare providers should be attentive and screen for pMDE in young cancer survivors. For PHQ-9, the preferred type of definition of pMDE should be determined.

• Massey, Richard; Diep, Phoi Phoi; Dirdal, Marta Maria; Kvaslerud, Anette Borger; Brinch, Lorentz & Aakhus, Svend [Show all 9 contributors for this article] (2021). Impaired right ventricular function in long-term survivors of allogeneic haematopoietic stem-cell transplantation. Open heart. 8(2), p. 1–11. doi: 10.1136/openhrt-2021-001768. Full text in Research Archive Show summary

  Aims Survivors of allogeneic haematopoietic stem-cell transplantation (allo-HSCT) are at higher risk of cardiovascular disease. We aimed to describe right ventricular (RV) systolic function and risk factors for RV dysfunction in long-term survivors of allo-HSCT performed in their youth. Methods and results This cohort included 103 survivors (53% female), aged (mean±SD) 17.6±9.5 years at allo-HSCT, with a follow-up time of 17.2±5.5 years. Anthracyclines were used as first-line therapy for 44.7% of the survivors. The RV was evaluated with echocardiography, and found survivors to have reduced RV function in comparison to a group of healthy control subjects: Tricuspid annular plane systolic excursion, (TAPSE, 20.8±3.7 mm vs 24.6±3.8 mm, p<0.001), RV peak systolic velocity (RV-s’, 11.2±2.3 cm/s vs 12.3±2.3 cm/s, p=0.001), fractional area change (FAC, 41.0±5.2% vs 42.2±5.1%, p=0.047) and RV free-wall strain (RVFWS, −27.1±4.2% vs −28.5±3.3%, p=0.043). RV systolic dysfunction (RVSD) was diagnosed in 14 (13.6%), and was strongly associated with progressive left ventricular systolic dysfunction (LVSD). High dosages of anthracyclines were associated with greater reductions in RV and LV function. Multivariable linear regressions confirmed global longitudinal strain to be a significant independent predictor for reduced RV function. Conclusion Impaired RV function was found in long-term survivors of allo-HSCT who were treated in their youth. This was associated with progressive left ventricle dysfunction, and pretransplant therapies with anthracyclines. The occurrence of RVSD was less frequent and was milder than coexisting LVSD in this cohort.

• Richartz, Nina; Pietka, Wojciech; Gilljam, Karin Margaretha; Skah, Seham; Skålhegg, Bjørn Steen & Bhagwat, Sampada [Show all 9 contributors for this article] (2021). cAMP-Mediated Autophagy Promotes Cell Survival via ROS-Induced Activation of PARP1: Implications for Treatment of Acute Lymphoblastic Leukemia. Molecular Cancer Research. ISSN 1541-7786. doi: 10.1158/1541-7786.MCR-21-0652. Full text in Research Archive
• Puhr, Anita; Ruud, Ellen; Anderson, Vivki; Due-Tønnessen, Bernt Johan; Skarbø, Anne-Britt & Finset, Arnstein [Show all 7 contributors for this article] (2021). Executive Function and Psychosocial Adjustment in Adolescent Survivors of Pediatric Brain Tumor. Developmental Neuropsychology. ISSN 8756-5641. 46(2), p. 149–168. doi: 10.1080/87565641.2021.1900191. Full text in Research Archive Show summary

  Adolescent survivors of pediatric brain tumor (PBT) are a sparsely studied subset of childhood cancer survivors. Sustaining a PBT may complicate the development of executive functions (EFs), which play a vital role in long-term psychosocial adjustment. In this study, 48 adolescent survivors and their parents completed questionnaires assessing EF, psychological symptoms, fatigue, and adaptive functioning, and 26 survivors underwent neuropsychological assessment. Survivors reported significantly more problems with adaptive functioning than a healthy control group, and this was most strongly associated to executive dysfunction, compared to psychological symptoms and fatigue. The findings have important implications for long-term follow-ups.

• Myrdal, Ole Henrik; Aaløkken, Trond Mogens; Diep, Phoi Phoi; Ruud, Ellen; Brinch, Lorentz & Fosså, Kristian [Show all 10 contributors for this article] (2021). Late-Onset, Noninfectious Pulmonary Complications following Allogeneic Hematopoietic Stem Cell Transplantation: A Nationwide Cohort Study of Long-Term Survivors. Respiration. ISSN 0025-7931. p. 1–9. doi: 10.1159/000520824. Full text in Research Archive Show summary

  Background: Survivors of allogeneic hematopoietic stem cell transplantation (allo-HSCT) are at risk for pulmonary adverse events. Data on late-onset noninfectious pulmonary complications in long-term adult survivors of allo-HSCT are limited and incomplete. Objectives: This study aimed (1) to determine occurrence and degree of pulmonary sequelae in adult survivors of allo-HSCT and (2) to identify associations between pulmonary function, high-resolution CT (HRCT), and clinical characteristics. Method: In a nationwide, single-center cross-sectional study, 103 survivors (aged median [range] 35 [17–58] years, 53% females) were examined 17 (6–32) years after allo-HSCT and compared with healthy controls (n = 105). Methods included pulmonary function tests and HRCT. Results: Chronic graft-versus-host disease was diagnosed in 33% of survivors, including 12% with bronchiolitis obliterans syndrome (BOS). Mean lung volumes (TLC, FVC, and FEV1) and gas diffusing capacity were &gt;80% of predicted for the survivors as a group, but significantly lower than in healthy controls. Pathological HRCT findings were detected in 48% of the survivors (71% airways disease, 35% interstitial lung disease, and 24% apical subpleural interstitial thickening). Air trapping (%) on HRCT correlated with % predicted FEV1, p &lt; 0.001. In a multiple logistic regression model, both BOS and pathological findings on HRCT were associated with chemotherapy prior to allo-HSCT, p &lt; 0.05. Conclusions: Long-term allo-HSCT survivors had significantly lower pulmonary function than age- and gender-matched healthy controls and nearly half had pathological findings on HRCT. Longitudinal data will determine if pulmonary sequelae will remain stable or progress. We recommend lifelong monitoring of pulmonary function in allo-HSCT survivors. HRCT provides additional information, but is not suited for surveillance.

• Mellblom, Anneli; Kiserud, Cecilie E.; Rueegg, Corina Silvia; Ruud, Ellen; Loge, Jon Håvard & Fosså, Sophie Dorothea [Show all 7 contributors for this article] (2020). Self-reported late effects and long-term follow-up care among 1889 long-term Norwegian Childhood, Adolescent, and Young Adult Cancer Survivors (the NOR-CAYACS study). Supportive Care in Cancer. ISSN 0941-4355. p. 1–11. doi: 10.1007/s00520-020-05790-6. Full text in Research Archive Show summary

  Abstract Purpose The majority of childhood, adolescent, and young adult cancer survivors (CAYACS) are at risk of late effects but may not receive long-term follow-up care for these. Here, we investigated (1) self-reported late effects, (2) long-term follow-up care, and (3) factors associated with receiving follow-up care in a population-based sample of Norwegian long-term CAYACS. Methods Survivors were identified by the Cancer Registry of Norway. All &gt; 5-year survivors diagnosed between 1985 and 2009 with childhood cancer (CCS, 0–18 years old, excluding CNS), breast cancer (BC, stages I–III), colorectal cancer (CRC), leukemias (LEUK), non-Hodgkin lymphoma (NHL), or malignant melanoma (MM) at age 19–39 years were mailed a questionnaire (NOR-CAYACS study). Descriptive statistics and logistic regression models were used to analyze occurrence of late effects, long-term follow-up care for these, and associated factors. Results Of 2104 responding survivors, 1889 were eligible for analyses. Of these, 68% were females, with a mean age of 43 years at survey, on average 17 years since diagnosis, and diagnosed with CCS (31%), BC (26%), CRC (8%), NHL (12%), LEUK (7%), and MM (16%). Overall, 61.5% reported the experience of at least one late effect, the most common being concentration/memory problems (28.1%) and fatigue (25.2%). Sixty-nine percent reported not having received long-term follow-up care focusing on late effects. Lower age at survey ( p = 0.001), higher education ( p = 0.012), and increasing number of late effects ( p = &lt; 0.001) were associated with increased likelihood of follow-up care in the multivariate model. Conclusions The majority of survivors reported at least one late effect, but not receiving specific follow-up care for these. This indicates a need for structured models of long-term follow-up to ensure adequate access to care.

• Berlanga, P.; Pasqualini, C; Pötschger, Ulrike; Sangüesa, C.; Castellani, Maria Rita & Cañete, A [Show all 23 contributors for this article] (2020). Central nervous system relapse in high-risk stage 4 neuroblastoma: The HR-NBL1/SIOPEN trial experience. European Journal of Cancer. ISSN 0959-8049. 144, p. 1–8. doi: 10.1016/j.ejca.2020.10.020. Full text in Research Archive
• Massey, Richard J; Diep, Phoi Phoi; Ruud, Ellen; Dirdal, Marta Maria; Kvaslerud, Anette Borger & Brinch, Lorentz [Show all 9 contributors for this article] (2020). Left Ventricular Systolic Function in Long-Term Survivors of Allogeneic Hematopoietic Stem Cell Transplantation. JACC: CardioOncology. 2(3), p. 460–471. doi: 10.1016/j.jaccao.2020.06.011. Full text in Research Archive Show summary

  Background Allogeneic hematopoietic stem cell transplantation (allo-HSCT), a potentially curative therapy for malignant and nonmalignant diseases, is being increasingly used in younger patients. Although allo-HSCT survivors have an established increased risk of cardiovascular disease, there is limited knowledge of the long-term effects on cardiac function in survivors. Objectives The purpose of this study was to describe left ventricular (LV) systolic function in long-term allo-HSCT survivors treated in childhood, adolescence, or early adulthood. Methods Our cross-sectional cohort study included 104 patients (56% women), age 18 ± 10 years at time allo-HSCT with 17 ± 6 years of follow-up. Echocardiography included 2-dimensional (2D) and 3-dimensional (3D) analyses and speckle tracking imaging. In total, 55 healthy control subjects with a similar age, sex, and body mass index were used for comparison. Left ventricular systolic dysfunction (LVSD) was defined as reduced 2D left ventricular ejection fraction (LVEF) of <52% in men and <54% in women, and/or a reduced global longitudinal strain (GLS) of ≥−17%. Multivariable linear regression was used to determine independent predictors of 2D-LVEF and GLS. Results Allo-HSCT survivors had significantly reduced LV systolic function compared with control subjects: 2D-LVEF (55.2 ± 5.8% vs. 59.0 ± 2.9%; p < 0.001), 3D LVEF (54.0 ± 5.1% vs. 57.6 ± 2.7%; p < 0.001), and GLS (−17.5 ± 2.2% vs. −19.8 ± 1.4%; p < 0.001). LVSD was found in 44.2%, of whom 28.3% were symptomatic. Clinical factors independently associated with 2D-LVEF and/or GLS included age, anthracyclines, graft versus host disease (GVHD), heart rate, and hypertension. In the 45% of survivors pre-treated with anthracyclines, the effect of anthracyclines on 2D-LVEF and GLS was dose-dependent. Conclusions LVSD is common in long-term survivors of allo-HSCT treated in their youth. Pre-HSCT therapies with anthracyclines, age, heart rate, hypertension, and graft versus host disease are associated with measures of LV function.

• Ladenstein, Ruth; Pötschger, Ulrike; Valteau-Couanet, Dominique; Luksch, Roberto; Castel, Victoria & Ash, Shifra [Show all 24 contributors for this article] (2020). Investigation of the role of dinutuximab beta-based immunotherapy in the siopen high-risk neuroblastoma 1 trial (HR-NBL1). Cancers. 12(2), p. 1–19. doi: 10.3390/cancers12020309. Full text in Research Archive
• Mateos, Marion K.; Tulstrup, Morten; Quinn, Michael C.J.; Tuckuviene, Ruta; Marshall, Glenn M. & Gupta, Ramneek [Show all 28 contributors for this article] (2020). Genome-wide association meta-analysis of single-nucleotide polymorphisms and symptomatic venous thromboembolism during therapy for acute lymphoblastic leukemia and lymphoma in caucasian children. Cancers. 12:1285(5), p. 1–15. doi: 10.3390/cancers12051285. Full text in Research Archive
• Holmes, Keith; Pötschger, Ulrike; Pearson, Andrew D.J.; Sarnacki, Sabine; Cecchetto, Giovanni & Gomez-Chacon, Javier [Show all 39 contributors for this article] (2020). Influence of surgical excision on the survival of patients with stage 4 high-risk neuroblastoma: A report from the HR-NBL1/SIOPEN study. Journal of Clinical Oncology. ISSN 0732-183X. 38(25), p. 2902–2915. doi: 10.1200/JCO.19.03117. Full text in Research Archive Show summary

  PURPOSE To evaluate the impact of surgeon-assessed extent of primary tumor resection on local progression and survival in patients in the International Society of Pediatric Oncology Europe Neuroblastoma Group High-Risk Neuroblastoma 1 trial. PATIENTS AND METHODS Patients recruited between 2002 and 2015 with stage 4 disease &gt; 1 year or stage 4/4S with MYCN amplification &lt; 1 year who had completed induction without progression, achieved response criteria for high-dose therapy (HDT), and had no resection before induction were included. Data were collected on the extent of primary tumor excision, severe operative complications, and outcome. RESULTS A total of 1,531 patients were included (median observation time, 6.1 years). Surgeon-assessed extent of resection included complete macroscopic excision (CME) in 1,172 patients (77%) and incomplete macroscopic resection (IME) in 359 (23%). Surgical mortality was 7 (0.46%) of 1,531. Severe operative complications occurred in 142 patients (9.7%), and nephrectomy was performed in 124 (8.8%). Five-year event-free survival (EFS) ± SE (0.40 ± 0.01) and overall survival (OS; 0.45 ± 0.02) were significantly higher with CME compared with IME (5-year EFS, 0.33 ± 0.03; 5-year OS, 0.37 ± 0.03; P &lt; .001 and P = .004). The cumulative incidence of local progression (CILP) was significantly lower after CME (0.17 ± 0.01) compared with IME (0.30 ± 0.02; P &lt; .001). With immunotherapy, outcomes were still superior with CME versus IME (5-year EFS, 0.47 ± 0.02 v 0.39 ± 0.04; P = .038); CILP was 0.14 ± 0.01 after CME and 0.27 ± 0.03 after IME ( P &lt; .002). A hazard ratio of 1.3 for EFS associated with IME compared with CME was observed before and after the introduction of immunotherapy ( P = .030 and P = .038). CONCLUSION In patients with stage 4 high-risk neuroblastoma who have responded to induction therapy, CME of the primary tumor is associated with improved survival and local control after HDT, local radiotherapy (21 Gy), and immunotherapy.

• Tuckuviene, Ruta; Bjerg, Cecilie Lundgaard; Jónsson, Ólafur Gísli; Langstrom, Satu; Rank, Cecilie Utke & Ranta, Susanna [Show all 9 contributors for this article] (2020). Pulmonary embolism in acute lymphoblastic leukemia - An observational study of 1685 patients treated according to the NOPHO ALL2008 protocol. Research and Practice in Thrombosis and Haemostasis (RPTH). 4(5), p. 866–871. doi: 10.1002/rth2.12356. Full text in Research Archive
• Myrdal, Ole Henrik; Diep, Phoi Phoi; Ruud, Ellen; Brinch, Lorentz; Massey, Richard J & Edvardsen, Elisabeth [Show all 9 contributors for this article] (2020). Determinants of cardiorespiratory fitness in very long-term survivors of allogeneic hematopoietic stem cell transplantation: a national cohort study. Supportive Care in Cancer. ISSN 0941-4355. 29(4). doi: 10.1007/s00520-020-05644-1. Full text in Research Archive Show summary

  Purpose: Survivors of allogeneic hematopoietic stem cell transplantation (allo-HSCT) are at risk for cardiopulmonary adverse events. Data on long-term effects on cardiorespiratory fitness are limited. To address the gap in knowledge, we aimed to determine peak oxygen uptake (V̇O2peak) and identify associations between cardiorespiratory fitness and clinical characteristics, self-reported physical activity, cardiac, and pulmonary function. Methods: In a nationwide, single-center cross-sectional study, 90 survivors [aged median (range) 35 (17–54) years, 56% females] were examined, 17 (6–26) years after allo-HSCT. Myeloablative conditioning comprised busulfan/cyclophosphamide or cyclophosphamide only. Methods included pulmonary function tests, echocardiography, and cardiopulmonary exercise test. Results: Chronic graft-versus-host disease (cGVHD) was found in 31% of the subjects, of whom 40% had bronchiolitis obliterans syndrome (BOS). Seventy-one percent of the survivors did not meet WHO recommendations for physical activity and 42% were overweight. Reduced gas diffusion (DLCO) and systolic ventricular dysfunction (LVEF) were found in 44% and 31%, respectively. For the group, mean (95% CI), V̇O2peak was 36.4 (34.7–38.0) mL/min/kg [89 (85–93)% of predicted]. V̇O2peak was low at 43%. Cardiopulmonary factors and deconditioning were equally common limitations for exercise. In a multiple linear regression model, low V̇O2peak was associated with low DLCO, low LVEF, BOS, overweight, and inactivity. Conclusion: Half of the survivors had reduced cardiorespiratory fitness median 17 years after allo-HSCT. Cardiopulmonary factors and deconditioning were equally common limitations to exercise. We encourage long-term cardiopulmonary monitoring of allo-HSCT survivors and targeted advice on modifiable lifestyle factors.

• Jarvis, Kirsten Brunsvig; Nielsen, Rikke Linnemann; Gupta, Ramneek; Hede, Freja Dahl; Huttunen, Pasi & Jónsson, Ólafur G. [Show all 15 contributors for this article] (2020). Polygenic risk score-analysis of thromboembolism in patients with acute lymphoblastic leukemia. Thrombosis Research. ISSN 0049-3848. 196, p. 15–20. doi: 10.1016/j.thromres.2020.08.015. Full text in Research Archive Show summary

  Introduction Thromboembolism (TE) is a common and serious toxicity of acute lymphoblastic leukemia (ALL) treatment, but studies of genetic predisposition have been underpowered with conflicting results. We tested whether TE in ALL and TE in the general adult population have a shared genetic etiology. Materials and methods We prospectively registered TE events and collected germline DNA in patients 1.0–45.9 years in the Nordic Society of Pediatric Hematology and Oncology (NOPHO) ALL2008 study (7/2008–7/2016). Based on summary statistics from two large genome-wide association studies (GWAS) on venous TE in adults (the International Network of VENous Thromboembolism Clinical Research Networks (INVENT) consortium and the UK Biobank), we performed polygenic risk score (PRS) analysis on TE development in the NOPHO cohort, progressively expanding the PRS by increasing the p-value threshold of single nucleotide polymorphism (SNP) inclusion. Results and conclusion Eighty-nine of 1252 patients with ALL developed TE, 2.5 year cumulative incidence 7.2%. PRS of genome-wide significant SNPs from the INVENT and UK Biobank data were not significantly associated with TE, HR 1.16 (p 0.14) and 1.02 (p 0.86), respectively. Expanding PRS by increasing p-value threshold did not reveal polygenic overlap. However, subgroup analysis of adolescents 10.0–17.9 years (n = 231), revealed significant polygenic overlap with the INVENT GWAS. The best fit PRS, including 16,144 SNPs, was associated with TE with HR 1.76 (95% CI 1.23–2.52, empirical p-value 0.02). Our results support an underlying genetic predisposition for TE in adolescents with ALL and should be explored further in future TE risk prediction models.

• Ålykkja, Anette; Ruud, Ellen; Larsen, Marie Hamilton; Vatne, Torun & Lie, Hanne Cathrine (2020). Available, but not always accessible: A nationwide, qualitative study of multidisciplinary healthcare providers’ experiences with follow-up care after paediatric brain tumour. European Journal of Cancer Care. ISSN 0961-5423. doi: 10.1111/ecc.13375. Full text in Research Archive Show summary

  Objective Paediatric brain tumour (PBT) survivors face high risks of disabling long‐term and late effects. Whether survivors’ needs are met in a system with publicly funded services, but in the absence of a formal long‐term follow‐up model, is uncertain. Empirically based recommendations for a national model are needed. We explored multidisciplinary healthcare providers’ (HCP) experiences with providing such care. Methods We conducted five focus‐group interviews and five individual interviews with a nationally representative sample of 33 Norwegian HCPs. Focus‐group interviews and individual interviews were analysed using systematic text condensation. Results Three main themes were identified: (a) ‘Providing care above and beyond system constraints’, describing a perceived discrepancy between HCPs’ knowledge of, and their ability to meet, the survivors’ needs. (b) ‘System barriers to providing optimal follow‐up care’, describing a perceived lack of routines for communication and coordination between the HCPs and existing care services. (c) ‘Nurses and shared‐care to improve care’, including empowering nurses and establishing routines for collaborations and areas of responsibilities. Conclusion The current healthcare system was perceived not to fully meet the survivors’ needs. Nurse‐led care models, including standardised patient‐care pathways, were suggested to increase the accessibility of already‐existing services and thus to improve long‐term follow‐up care.

• Kollerud, Ruby Del Risco; Cannon-Albright, LA; Haugnes, Hege Sagstuen; Ruud, Ellen; Thoresen, Magne & Nafstad, Per [Show all 9 contributors for this article] (2020). Childhood central nervous system tumors and leukemia: Incidence and familial risk. A comparative population-based study in Utah and Norway. Pediatric Blood & Cancer. ISSN 1545-5009. Aug;67(8):e28408. doi: 10.1002/pbc.28408. Full text in Research Archive Show summary

  Background In this study, we aimed to evaluate incidence rates and family risk of the most common childhood cancers, tumors in the central nervous system (CNS), and leukemia among individuals from Norway and individuals with Scandinavian ancestry living in Utah. Methods We used the Utah Population Database and the Norwegian National Population Register linked to Cancer registries to identify cancers in children born between 1966 and 2015 and their first‐degree relatives. We calculated incidence rates and hazards ratios. Results The overall incidence of CNS tumors increased with consecutive birth cohorts similarly in Utah and Norway (both P < 0.001). Incidence rates of leukemia were more stable and similar in both Utah and in Norway with 4.6/100 000 person‐years among children (<15 years) born in the last cohort. A family history of CNS tumors was significantly associated with risk of childhood CNS tumors in Utah HR = 3.05 (95% CI 1.80‐5.16) and Norway HR = 2.87 (95% CI 2.20‐3.74). In Norway, children with a first‐degree relative diagnosed with leukemia had high risk of leukemia (HR = 2.39, 95% CI 1.61‐3.55). Conclusion Despite geographical distance and assumed large lifestyle differences, two genetically linked pediatric populations show similar incidences of CNS tumors and leukemia in the period 1966–2015. CNS tumors and leukemia aggregated in families in both countries.

• Dahl, Alv A; Fosså, Sophie Dorothea; Lie, Hanne Cathrine; Loge, Jon Håvard; Reinertsen, Kristin Valborg & Ruud, Ellen [Show all 7 contributors for this article] (2019). Employment Status and Work Ability in Long-Term Young Adult Cancer Survivors. Journal of Adolescent and Young Adult Oncology. ISSN 2156-5333. 8(3), p. 304–311. doi: 10.1089/jayao.2018.0109. Full text in Research Archive Show summary

  Purpose: In young adult cancer survivors (YACSs) to explore the rate of being nonemployed and having low work ability, and to identify factors associated with these two outcomes. Methods: All Norwegian YACSs (N = 3558) diagnosed at ages 19–39 years and treated between 1985 and 2009 for breast or colorectal cancer, leukemia, non-Hodgkin lymphoma, or melanoma, and alive in 2015, were mailed a questionnaire. The response rate was 42%. For treatment, a minimal surgery-only group (N = 198) was defined as reference group, and 1000 YACSs represented the local, systemic, and systemic plus other treatment groups. Work status was compared with normative data. Results: The sample included 63% females. Median age at survey was 49 years (range 27–65), and median time since first cancer diagnosis was 16 years (range 6–31). At survey, 25% (95% confidence interval [CI]: 22–27) of YACSs were nonemployed, and 38% (95% CI: 35–41) reported low work ability. The rate of being nonemployed was similar to normative data. More female YACSs held disability pension compared with normative data. In multivariable analyses, an increasing number of adverse effects (AEs), cardiovascular diseases, lower basic education, reduced level of self-rated health, and increased level of depression were significantly associated with both being nonemployed and having low work ability. Conclusions: In YACSs surveyed at median 49 years of age, 25% were nonemployed and 38% had low current work ability. An increased mean number of long-term AEs and several other health-related factors were significantly associated with both these outcomes. Health care providers responsible for YACSs should be attentive to such factors and work ability.

• Puhr, Anita; Ruud, Ellen; Anderson, Vicki; Due-Tønnessen, Bernt Johan; Skarbø, Anne-Britt & Finset, Arnstein [Show all 7 contributors for this article] (2019). Social attainment in physically well-functioning long-term survivors of pediatric brain tumour; the role of executive dysfunction, fatigue, and psychological and emotional symptoms. Neuropsychological Rehabilitation. ISSN 0960-2011. p. 1–26. doi: 10.1080/09602011.2019.1677480. Full text in Research Archive Show summary

  The purpose of this cross-sectional study was to investigate long-term social attainment in physically well-functioning adult survivors of pediatric brain tumour (PBT) and identify demographic, medical, and psychological factors related to poor social outcomes, with a special focus on the significance of executive dysfunction. One hundred and fourteen PBT survivors and a healthy control group provided personal data on social outcomes, i.e., education, work, and government benefits, and completed questionnaires on executive function (EF), psychological and emotional difficulties, and fatigue. A significantly higher number of survivors compared to healthy controls reported having received educational adjustments and substantial government benefits, and significantly more survivors than controls were currently not engaged in regular employment/training. PBT survivors and healthy controls did not differ on educational level or living situation. The factors most strongly associated with poor social outcomes were self-reported executive dysfunction, difficulties with adaptive functioning, and fatigue. The findings show that physically well-functioning PBT survivors are at risk of poorer social outcomes and financial dependence in adulthood compared to their healthy peers, and underline the importance of investigating EF in short- and long-term follow-ups. Future rehabilitation efforts should focus more on compensatory strategies for executive dysfunction and improving EF skills.

• Jarvis, Kirsten Brunsvig; Tveiterås, Målfrid; Lange, Charlotte de & Ruud, Ellen (2019). Central Venous Line-Related Thromboembolism in Children with Non-High Risk Acute Lymphoblastic Leukemia. Acta Paediatrica. ISSN 0803-5253. 108(6), p. 1167–1168. doi: 10.1111/apa.14757. Full text in Research Archive
• Lie, Hanne Cathrine; Rueegg, Corina Silvia; Fosså, Sophie Dorothea; Loge, Jon Håvard; Ruud, Ellen & Kiserud, Cecilie E. (2019). Limited evidence of non-response bias despite modest response rate in a nationwide survey of long-term cancer survivors?results from the NOR-CAYACS study. Journal of cancer survivorship. ISSN 1932-2259. 13(3), p. 353–363. doi: 10.1007/s11764-019-00757-x. Full text in Research Archive Show summary

  Purpose Declining response rates threaten the generalizability of health surveys. We investigate (1) the effect of item order on response rate; (2) characteristics of early , late and non-responders; and (3) potential non-response bias in a population-based health survey of childhood, adolescent and young adult cancer survivors (CAYACS). Methods We mailed a questionnaire survey to 5361 eligible CAYACS identified by the Cancer Registry of Norway (CRN), representing a range of cancer diagnoses. The 302-item questionnaire included a range of survivorship-related questions and validated patient-reported outcome measures. To investigate item-order effects on response rates, we constructed two versions of the questionnaire presenting cancer-related or socio-demographic items first. The CRN provided demographic and clinical information for the total population. Risk of non-response bias was estimated by (1) comparing outcomes between early and late responders (answered after a reminder), and (2) by applying inverse probability of participation weights to construct a total population (with 100% response) and then compare 21 a priori selected outcomes between early responders, all responders (early + late) and the total population (all eligible). Results Survey item order did not affect response rates (cancer first 49.8% vs socio-demographic first 50.2%). Shorter time since diagnosis, male gender and a malignant melanoma diagnosis remained significant predictors of non-response in a multivariable multinomial regression model. There were no significant differences on 16/21 survey outcomes between early and late responders, and 18/21 survey outcomes between early responders, all responders and the total population. Conclusion Despite a modest response rate, we found little evidence for a response bias in our study. Implications for Cancer Survivors Surveys of survivor-reported outcomes with low response rates may still be valuable and generalizable to the total survivor population.

• Richartz, Nina; Duthil, Eva; Ford, Anthony; Naderi, Elin Hallan; Bhagwat, Sampada & Gilljam, Karin Margaretha [Show all 10 contributors for this article] (2019). Targeting cyclooxygenase by indomethacin decelerates progression of acute lymphoblastic leukemia in a xenograft model. Blood Advances. ISSN 2473-9529. 3(21), p. 3181–3190. doi: 10.1182/bloodadvances.2019000473. Full text in Research Archive
• Kollerud, Ruby Del Risco; Ruud, Ellen; Haugnes, Hege Sagstuen; Cannon-Albright, Lisa A.; Thoresen, Magne & Nafstad, Per [Show all 10 contributors for this article] (2019). Family history of cancer and risk of paediatric and young adult’s testicular cancer: A Norwegian cohort study. British Journal of Cancer. ISSN 0007-0920. 120, p. 1007–1014. doi: 10.1038/s41416-019-0445-2. Full text in Research Archive Show summary

  <i>Background</i> - The aim of this study was to examine the association of a family history of cancer with the risk of testicular cancer in young adults.<p><p> <i>Methods</i> - This is a prospective cohort study including 1,974,287 males born 1951–2015, of whom 2686 were diagnosed with TC before the age of 30.<p><p> <i>Results</i> - A history of TC in male relatives was significantly associated with a diagnosis of TC among children and young adults, including brothers (6.3-fold), sons (4.7-fold), fathers (4.4-fold), paternal uncles (2.0-fold) and maternal uncles (1.9-fold). Individuals with a father diagnosed with a carcinoma or sarcoma showed an elevated risk (1.1-fold and 1.8-fold, respectively). A family history of mesothelioma was positively associated with a risk of TC [(father (2.8-fold), mother (4.6-fold) and maternal uncles and aunt (4.4-fold)]. Elevated risks were also observed when siblings were diagnosed with malignant melanoma (1.4-fold). The risk of TC was also increased when fathers (11.1-fold), paternal (4.9-fold) and maternal uncles and aunts (4.6-fold) were diagnosed with malignant neuroepithelial-tumours.<p><p> <i>Conclusion</i> - We found an increased risk of TC among children and young adults with a family history of TC, carcinoma, mesothelioma, sarcoma, malignant melanoma and malignant neuroepithelial tumours. Hereditary cancer syndromes might underlie some of the associations reported in this study.

• Jarvis, Kirsten Brunsvig; LeBlanc, Marissa Erin; Tulstrup, Morten; Nielsen, Rikke Linnemann; Albertsen, Birgitte Klug & Gupta, Ramneek [Show all 15 contributors for this article] (2019). Candidate single nucleotide polymorphisms and thromboembolism in acute lymphoblastic leukemia - A NOPHO ALL2008 study. Thrombosis Research. ISSN 0049-3848. 184, p. 92–98. doi: 10.1016/j.thromres.2019.11.002. Full text in Research Archive
• Pathak, Meeta; Diep, Phoi Phoi; Lai, Xiaoran; Brinch, Lorentz; Ruud, Ellen & Drolsum, Liv (2018). Ocular findings and ocular graft-versus-host disease after allogeneic stem cell transplantation without total body irradiation. Bone Marrow Transplantation. ISSN 0268-3369. 53, p. 863–872. doi: 10.1038/s41409-018-0090-z. Full text in Research Archive Show summary

  Patients treated with allogeneic stem cell transplantation (allo-SCT) often develop ocular complications. To investigate the ocular findings in young long-term survivors after allo-SCT without TBI, we examined 96 patients more than 5 years after transplantation. All patients were under 30 years of age at transplantation. The mean follow-up time was 16.8 years (range 6.0–26.1 years). The study was a part of the Norwegian Allo Survivorship Study investigating health impairments in young survivors after allo-SCT. Ophthalmological examination included visual acuity, tear break-up time, corneal fluorescein staining, Schirmer I test, tear film osmolarity, biomicroscopy and dilated ophthalmoscopy. In patients with known systemic chronic GVHD (cGVHD), ocular GVHD (oGVHD) diagnosed by clinical examination was compared with diagnosis using National Institutes of Health (NIH) or International Chronic Ocular Graft-vs-Host-Disease (ICCGVHD) Consensus Group criteria. We diagnosed dry eye disease (DED) in 52 patients (54%), cataract in 3 patients (3%) and retinopathy in 1 patient (1%). Systemic cGVHD was a risk factor for DED (OR 4.40, CI 1.33–14.56, p = 0.02). Comparison of diagnostic criteria suggests that the more stringent ICCGVHD criteria can better differentiate DED from oGVHD after allo-SCT as compared with the NIH criteria.

• Skah, Seham; Richartz, Nina; Duthil, Eva; Gilljam, Karin Margaretha; Bindesbøll, Christian & Naderi, Elin Hallan [Show all 11 contributors for this article] (2018). cAMP-mediated autophagy inhibits DNA damage-induced death of leukemia cells independent of p53. OncoTarget. 9(54), p. 30434–30449. doi: 10.18632/oncotarget.25758. Full text in Research Archive Show summary

  Autophagy is important in regulating the balance between cell death and survival, with the tumor suppressor p53 as one of the key components in this interplay. We have previously utilized an in vitro model of the most common form of childhood cancer, B cell precursor acute lymphoblastic leukemia (BCP-ALL), to show that activation of the cAMP signaling pathway inhibits p53-mediated apoptosis in response to DNA damage in both cell lines and primary leukemic cells. The present study reveals that cAMP-mediated survival of BCP-ALL cells exposed to DNA damaging agents, involves a critical and p53-independent enhancement of autophagy. Although autophagy generally is regarded as a survival mechanism, DNA damage-induced apoptosis has been linked both to enhanced and reduced levels of autophagy. Here we show that exposure of BCP-ALL cells to irradiation or cytotoxic drugs triggers autophagy and cell death in a p53-dependent manner. Stimulation of the cAMP signaling pathway further augments autophagy and inhibits the DNA damage-induced cell death concomitant with reduced nuclear levels of p53. Knocking-down the levels of p53 reduced the irradiation-induced autophagy and cell death, but had no effect on the cAMP-mediated autophagy. Moreover, prevention of autophagy by bafilomycin A1 or by the ULK-inhibitor MRT68921, diminished the protecting effect of cAMP signaling on DNA damage-induced cell death. Having previously proposed a role of the cAMP signaling pathway in development and treatment of BCP-ALLs, we here suggest that inhibitors of autophagy may improve current DNA damage-based therapy of BCP-ALL - independent of p53.

• Berbegall, Ana P.; Bogen, Dominik; Pötschger, Ulrike; Beiske, Klaus; Bown, Nick & Combaret, Valerie [Show all 24 contributors for this article] (2018). Heterogeneous MYCN amplification in neuroblastoma: A SIOP Europe Neuroblastoma Study. British Journal of Cancer. ISSN 0007-0920. 118(11), p. 1502–1512. doi: 10.1038/s41416-018-0098-6. Full text in Research Archive Show summary

  Background In neuroblastoma (NB), the most powerful prognostic marker, the MYCN amplification (MNA), occasionally shows intratumoural heterogeneity (ITH), i.e. coexistence of MYCN-amplified and non-MYCN-amplified tumour cell clones, called heterogeneous MNA (hetMNA). Prognostication and therapy allocation are still unsolved issues. Methods The SIOPEN Biology group analysed 99 hetMNA NBs focussing on the prognostic significance of MYCN ITH. Results Patients <18 months (18 m) showed a better outcome in all stages as compared to older patients (5-year OS in localised stages: <18 m: 0.95 ± 0.04, >18 m: 0.67 ± 0.14, p = 0.011; metastatic: <18 m: 0.76 ± 0.15, >18 m: 0.28 ± 0.09, p = 0.084). The genomic 'background’, but not MNA clone sizes, correlated significantly with relapse frequency and OS. No relapses occurred in cases of only numerical chromosomal aberrations. Infiltrated bone marrows and relapse tumour cells mostly displayed no MNA. However, one stage 4s tumour with segmental chromosomal aberrations showed a homogeneous MNA in the relapse. Conclusions This study provides a rationale for the necessary distinction between heterogeneous and homogeneous MNA. HetMNA tumours have to be evaluated individually, taking age, stage and, most importantly, genomic background into account to avoid unnecessary upgrading of risk/overtreatment, especially in infants, as well as in order to identify tumours prone to developing homogeneous MNA.

• Ladenstein, Ruth; Pötschger, Ulrike; Valteau-Couanet, Dominique; Luksch, Roberto; Castel, Victoria & Yaniv, Isaac [Show all 24 contributors for this article] (2018). Interleukin 2 with anti-GD2 antibody ch14.18/CHO (dinutuximab beta) in patients with high-risk neuroblastoma (HR-NBL1/SIOPEN): a multicentre, randomised, phase 3 trial. The Lancet Oncology. ISSN 1470-2045. 19(12), p. 1617–1629. doi: 10.1016/S1470-2045(18)30578-3. Full text in Research Archive
• Rank, Cecilie Utke; Toft, Nina; Tuckuviene, Ruta; Grell, Kathrine; Nielsen, Ove Juul & Frandsen, Thomas Leth [Show all 21 contributors for this article] (2018). Thromboembolism in acute lymphoblastic leukemia: Results of nopho all2008 protocol treatment in patients aged 1 to 45 years. Blood. ISSN 0006-4971. 131(22), p. 2475–2484. doi: 10.1182/blood-2018-01-827949. Full text in Research Archive
• Myrdal, Ole Henrik; Kanellopoulos, Adriani; Christiansen, Jon Runar; Ruud, Ellen; Edvardsen, Elisabeth & Kongerud, Johny [Show all 8 contributors for this article] (2018). Risk factors for impaired pulmonary function and cardiorespiratory fitness in very long-term adult survivors of childhood acute lymphoblastic leukemia after treatment with chemotherapy only*. Acta Oncologica. ISSN 0284-186X. 57(5), p. 658–664. doi: 10.1080/0284186X.2017.1423177. Full text in Research Archive Show summary

  Background: Survivors of childhood acute lymphoblastic leukemia (ALL) are at risk of late treatment-related side-effects. Data regarding prevalence and risk factors for impairments in pulmonary function and cardiorespiratory fitness are limited, and reported findings are inconsistent and inconclusive. Material and methods: In a cross-sectional study, 116 ALL survivors (median 5 years at diagnosis, 29 years at follow-up, 53% females) were examined, median 23 years after treatment with chemotherapy only. Individual cumulative doses of cytostatic agents were calculated. Methods included blood tests, echocardiography, pulmonary function tests and cardiorespiratory exercise test. Results: Females had lower % predicted gas diffusing capacity (DLCO) than males (mean [SD] 84 [13] versus 97 [14], p < .001). Impairment in DLCO was found in 34% females versus 7% males, p < .001. In a multiple linear regression model, female gender, body mass index (BMI) and smoking were risk factors for reduced % predicted DLCO, with a borderline significant effect of left ventricular ejection fraction (LVEF). Impaired cardiorespiratory fitness was found in 42% of the survivors, with a borderline increased risk in females, p = .06. Smoking and BMI were risk factors for reduced % predicted VO2peak. Subjects exposed to anthracyclines had lower LVEF% and % predicted VO2peak than those not exposed, (mean [SD] 56.2 [4.3] versus 59.2 [5.2], p = .01 and 86.9 [18.4] versus 92.8 [18.4], p = .03, respectively). Conclusions: Impairments in pulmonary function and cardiorespiratory fitness are common in very long-term survivors of childhood ALL. Risk factors are female gender, BMI and smoking. In order to preserve pulmonary function and cardiorespiratory fitness, we suggest increased attention and targeted advice on modifiable lifestyle factors such as smoking, inactivity and overweight.

• Kollerud, Ruby Del Risco; Blaasaas, Karl Gerhard; Claussen, Bjørgulf; Nafstad, Per; Cannon-Albright, Lisa A. & Ruud, Ellen [Show all 8 contributors for this article] (2018). Family history of cancer and the risk of childhood solid tumours: A Norwegian nationwide register-based cohort study. British Journal of Cancer. ISSN 0007-0920. 118(6), p. 905–912. doi: 10.1038/bjc.2017.493. Full text in Research Archive
• Byrne, Julianne; Grabow, Desiree; Campbell, Helen; O'Brien, Kylie; Bielack, Stefan & Zehnhoff-Dinnesen, Antoinette am [Show all 63 contributors for this article] (2018). PanCareLIFE: The scientific basis for a European project to improve long-term care regarding fertility, ototoxicity and health-related quality of life after cancer occurring among children and adolescents. European Journal of Cancer. ISSN 0959-8049. 103, p. 227–237. doi: 10.1016/j.ejca.2018.08.007. Full text in Research Archive
• Puhr, Anita; Ruud, Ellen; Anderson, Vicki; Due-Tønnessen, Bernt Johan; Skarbø, Anne-Britt & Finset, Arnstein [Show all 7 contributors for this article] (2018). Self-reported executive dysfunction, fatigue, and psychological and emotional symptoms in physically well-functioning long-term survivors of pediatric brain tumor. Developmental Neuropsychology. ISSN 8756-5641. p. 1–17. doi: 10.1080/87565641.2018.1540007. Full text in Research Archive
• Wolthers, Benjamin Ole; Mogensen, Pernille Rudebeck; Frandsen, Thomas L.; Abrahamsson, Jonas; Behrendtz, Mikael & Heyman, Mats [Show all 10 contributors for this article] (2018). Insulin‐dependent diabetes: A chronic complication to acute pancreatitis in childhood acute lymphoblastic leukemia. Pediatric Blood & Cancer. ISSN 1545-5009. 66(1), p. 1–4. doi: 10.1002/pbc.27437. Full text in Research Archive
• Morgenstern, Daniel A.; Pötschger, Ulrike; Moreno, Lucas; Papadakis, Vassilios; Owens, Cormac & Ash, Shifra [Show all 20 contributors for this article] (2018). Risk stratification of high-risk metastatic neuroblastoma: A report from the HR-NBL-1/SIOPEN study. Pediatric Blood & Cancer. ISSN 1545-5009. 65:e27363(11), p. 1–9. doi: 10.1002/pbc.27363. Full text in Research Archive
• Lie, Hanne Cathrine; Mellblom, Anneli; Brekke, Mette; Finset, Arnstein; Fosså, Sophie Dorothea & Kiserud, Cecilie E. [Show all 8 contributors for this article] (2017). Experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood lymphoma. Supportive Care in Cancer. ISSN 0941-4355. 25(8), p. 2445–2454. doi: 10.1007/s00520-017-3651-6. Full text in Research Archive
• Ladenstein, Ruth; Pötschger, Ulrike; Pearson, Andrew D. J.; Brock, Penelope; Luksch, Roberto & Castel, Victoria [Show all 28 contributors for this article] (2017). Busulfan and melphalan versus carboplatin, etoposide, and melphalan as high-dose chemotherapy for high-risk neuroblastoma (HR-NBL1/SIOPEN): an international, randomised, multi-arm, open-label, phase 3 trial. The Lancet Oncology. ISSN 1470-2045. 18(4), p. 500–514. doi: 10.1016/S1470-2045(17)30070-0. Full text in Research Archive
• Mellblom, Anneli; Ruud, Ellen; Loge, Jon Håvard & Lie, Hanne Cathrine (2017). Do negative emotions expressed during follow-up consultations with adolescent survivors of childhood cancer reflect late effects? Patient Education and Counseling. ISSN 0738-3991. 100(11), p. 2098–2101. doi: 10.1016/j.pec.2017.06.008. Full text in Research Archive Show summary

  Objective: To explore whether negative emotions expressed by adolescent cancer survivors during follow-up consultations were associated with potential late effects (persisting disease or treatment-related health problems). Methods: We video-recorded 66 follow-up consultations between 10 pediatricians and 66 adolescent survivors of leukemia, lymphoma or stem-cell transplantations. In transcripts of the recordings, we identified utterances coded as both 1) expressions of negative emotions (VR-CoDES), and 2) late effect-related discussions. Principles of thematic content analysis were used to investigate associations between the two. Results: Of the 66 video-recorded consultations, 22 consultations contained 56 (49%) utterances coded as both emotional concerns and discussions of potential late effects. Negative emotions were most commonly associated with late effects such as fatigue (“I’m struggling with not having energy”), psychosocial distress (“When I touch this (scar) I become nauseous”), pain (“I’m wondering how long I am going to have this pain?”), and treatment-related effects on physical appearance (“Am I growing?”). Conclusions: Negative emotions expressed by adolescent cancer survivors during follow-up consultations were frequently associated with potential late effects. These late effects were not the medically most serious ones, but reflected issues affecting the adolescents’ daily life. Practice implication: Eliciting and exploring patients’ emotional concerns serve as means to obtain clinically relevant information regarding potential late effect and to provide emotional support.

• Gunnes, Maria Winther; Lie, Rolv T.; Bjørge, Tone; Ghaderi, Sara; Syse, Astri & Ruud, Ellen [Show all 8 contributors for this article] (2017). Suicide and violent deaths in survivors of cancer in childhood, adolescence and young adulthood-a national cohort study. International Journal of Cancer. ISSN 0020-7136. 140(3), p. 575–580. doi: 10.1002/ijc.30474. Full text in Research Archive
• Korsvold, Live; Mellblom, Anneli; Finset, Arnstein; Ruud, Ellen & Lie, Hanne Cathrine (2017). A content analysis of emotional concerns expressed at the time of receiving a cancer diagnosis: An observational study of consultations with adolescent and young adult patients and their family members. European Journal of Oncology Nursing. ISSN 1462-3889. 26, p. 1–8. doi: 10.1016/j.ejon.2016.10.005. Full text in Research Archive
• Gunnes, Maria Winther; Lie, Rolv T.; Bjørge, Tone; Ghaderi, Sara; Ruud, Ellen & Syse, Astri [Show all 7 contributors for this article] (2016). Reproduction and marriage among male survivors of cancer in childhood, adolescence and young adulthood: a national cohort study. British Journal of Cancer. ISSN 0007-0920. 114, p. 348–356. doi: 10.1038/bjc.2015.455. Full text in Research Archive Show summary

  Background: Increased survival after cancer in young age has made long-term follow-up studies of high external validity important. In this national cohort study, we explored the impact of cancer in young age on reproduction and marital status in male survivors. Methods: Hazard ratios (HRs) and relative risks (RRs) of reproductive and marital outcomes were studied for male survivors of cancer in young age (<25 years) and cancer-free male comparisons, born during 1965–1985, by linking compulsory national registries in Norway. Results: Male cancer survivors (n=2687) had reduced paternity (HR: 0.72, 95% confidence interval (CI): 0.68–0.76). This was most apparent in survivors of testicular cancer, brain tumours, lymphoma, leukemia and bone tumours, and when diagnosed with cancer before 15 years of age. Male cancer survivors were more likely to avail of assisted reproduction (RR: 3.32, 95% CI: 2.68–4.11). There was no increased risk of perinatal death, congenital malformations, being small for gestational age, of low birth weight or preterm birth in their first offspring. Male cancer survivors were less likely to marry (HR: 0.93, 95% CI: 0.86–1.00), in particular brain tumour survivors. Conclusions: In this national cohort study, we demonstrated reduced paternity and increased use of assisted reproduction among male cancer survivors, but no adverse outcome for their first offspring at birth.

• Christiansen, Jon Runar; Massey, Richard; Dalen, Håvard; Kanellopoulos, Adriani; Hamre, Hanne Mari & Fosså, Sophie Dorothea [Show all 9 contributors for this article] (2016). Utility of Global Longitudinal Strain by Echocardiography to Detect Left Ventricular Dysfunction in Long-Term Adult Survivors of Childhood Lymphoma and Acute Lymphoblastic Leukemia. American Journal of Cardiology. ISSN 0002-9149. 118(3), p. 446–452. doi: 10.1016/j.amjcard.2016.05.021. Full text in Research Archive Show summary

  Measuring left ventricular (LV) global longitudinal strain (GLS) is recommended in screening of long-term cancer survivors for cardiotoxicity. However, there are limited data on GLS in this setting, in particular in survivors with apparently normal LV function without risk factors of impaired GLS. In the present study, we measured GLS in 191 adult survivors of childhood lymphoma or acute lymphoblastic leukemia, with normal LV ejection fraction and fractional shortening (FS) and without known hypertension, diabetes mellitus, myocardial infarction, or stroke. We compared GLS in the survivors with 180 controls. Mean GLS was -19.0 ± 2.2% in the survivor group and -21.4 ± 2.0% in the controls (p <0.001). Impaired GLS, defined as mean - 1.96 SDs in the control group, occurred in 53 of 191 survivors (28%). We included survivors with impaired LV ejection fraction and/or FS or traditional risk factors (n = 231 in all) in multiple regression analyses to explore associations with previous cancer treatment. Survivors treated with mediastinal radiotherapy had an odds ratio of impaired GLS of 5.2 (95% confidence interval 2.2 to 12) compared with other survivors. Survivors treated with cumulative anthracycline doses >300 mg/m(2) had an odds ratio of 4.8 (95% confidence interval 1.7 to 14) of impaired GLS. In conclusion, this study demonstrates a high proportion of LV dysfunction assessed by GLS in apparently healthy adult survivors of childhood cancer. Impaired GLS was associated with previous exposure to mediastinal radiotherapy and high doses of anthracyclines. The prognostic role of measuring GLS in this specific patient population should be examined in prospective studies.

• Mellblom, Anneli; Korsvold, Live; Ruud, Ellen; Lie, Hanne Cathrine; Loge, Jon Håvard & Finset, Arnstein (2016). Sequences of talk about emotional concerns in follow-up consultations with adolescent childhood cancer survivors. Patient Education and Counseling. ISSN 0738-3991. 99(1), p. 77–84. doi: 10.1016/j.pec.2015.07.021. Full text in Research Archive
• Korsvold, Live; Lie, Hanne Cathrine; Mellblom, Anneli; Ruud, Ellen; Loge, Jon Håvard & Finset, Arnstein (2016). Tailoring the delivery of cancer diagnosis to adolescent and young adult patients displaying strong emotions: An observational study of two cases. International Journal of Qualitative Studies on Health and Well-being. ISSN 1748-2623. 11. doi: 10.3402/qhw.v11.30763. Full text in Research Archive Show summary

  Delivering the bad news of a cancer diagnosis to adolescent and young adult (AYA) patients who display strong emotions is particularly challenging not the least because AYAs are at a vulnerable developmental stage. Due to the lack of research on how to personalize the delivery of bad news to AYA patients’ emotions we report a case study of the communicative behavior of oncologists in two such consultations to describe the complexity of the phenomena at study. We audio-recorded and transcribed consultations where oncologists delivered cancer diagnoses to nine AYAs aged 12–25 years. Two of these patients displayed particularly strong emotional behavior (anger, fear, and sadness) and were chosen as cases. An interpretative analysis in three steps was applied to investigate the oncologists’ communicative behavior when delivering bad news. The focus was on how the oncologists responded to the strong but different emotional behaviors of the AYAs. We also related the oncologists’ communicative behavior to elements from a widely used protocol for delivering bad news. We found that the oncologists applied five communication strategies: elicit patient perspective, provide information, respond to patient’s expression of emotion (acknowledging and containing emotions), encourage commitment to treatment, and provide hope. The findings illustrate how oncologists’ communicative behavior may be tailored to individual expressions of emotions in AYA cancer patients.

• Christiansen, Jon Runar; Massey, Richard; Dalen, Håvard; Kanellopoulos, Adriani; Hamre, Hanne Mari & Ruud, Ellen [Show all 9 contributors for this article] (2016). Right ventricular function in long-term adult survivors of childhood lymphoma and acute lymphoblastic leukaemia. European Heart Journal-Cardiovascular Imaging. ISSN 2047-2404. 17(7), p. 735–741. doi: 10.1093/ehjci/jew018. Full text in Research Archive
• Korsvold, Live; Mellblom, Anneli; Lie, Hanne Cathrine; Ruud, Ellen; Loge, Jon Håvard & Finset, Arnstein (2016). Patient-provider communication about the emotional cues and concerns of adolescent and young adult patients and their family members when receiving a diagnosis of cancer. Patient Education and Counseling. ISSN 0738-3991. 99(10), p. 1576–1583. doi: 10.1016/j.pec.2016.03.028. Full text in Research Archive
• Gunnes, Maria Winther; Lie, Rolv T.; Bjørge, Tone; Syse, Astri; Ruud, Ellen & Wesenberg, Finn [Show all 7 contributors for this article] (2016). Economic independence in survivors of cancer diagnosed at a young age: A Norwegian national cohort study. Cancer. ISSN 0008-543X. 122(24), p. 3873–3882. doi: 10.1002/cncr.30253. Full text in Research Archive Show summary

  BACKGROUND: The impact of cancer on socioeconomic outcomes is attracting attention as the number of survivors of cancer in young age continues to rise. This study examines economic independence in a national cohort of survivors of cancer at a young age in Norway. METHODS: Through the linkage of several national registries, the study cohort comprised 1,212,013 individuals born in Norway during 1965 through 1985, of which 5440 had received a cancer diagnosis before age 25 years. Follow-up was through 2007, and the main outcomes were receipt of governmental financial assistance, employment, income, and occupation. Analytic methods included Cox proportional hazard regression, log-binomial regression, and quantile regression models. RESULTS: Individuals in the cancer survivor group had an increased probability of receiving governmental financial assistance (men: hazard ratio [HR], 1.4; 95% confidence interval [CI], 1.3-1.5; women: HR, 1.5; 95% CI, 1.3-1.6) and of not being employed (men: HR, 1.4; 95% CI, 1.2-1.7; women: HR, 1.4; 95% CI, 1.2-1.6) compared with those in the noncancer group. Income discrepancies were particularly pronounced for survivors of central nervous system tumors. There was no difference in representation in higher skilled occupations. CONCLUSIONS: Survivors of cancer at a young age in Norway had an increased risk of being economically dependent and unemployed. This was evident in several tumor groups and was most pronounced in female survivors. There were only small differences in income or representation in higher skilled occupations for most employed survivors compared with the noncancer group. The current results are important for understanding the impact of a cancer diagnosis at a young age on subsequent job market outcomes.

• Tuckuviene, Ruta; Ranta, Susanna; Albertsen, Birgitte Klug; Andersson, Nadine Gretenkort; Bendtsen, Mette Dahl & Frisk, Tony [Show all 15 contributors for this article] (2016). Prospective study of thromboembolism in 1038 children with acute lymphoblastic leukemia: A Nordic Society of Pediatric Hematology and Oncology (NOPHO) study. Journal of Thrombosis and Haemostasis. ISSN 1538-7933. 14(3), p. 485–494. doi: 10.1111/jth.13236. Full text in Research Archive
• Ghaderi, Sara; Engeland, Anders; Gunnes, Maria Winther; Moster, Dag; Ruud, Ellen & Syse, Astri [Show all 8 contributors for this article] (2016). Educational attainment among long-term survivors of cancer in childhood and adolescence: a Norwegian population-based cohort study. Journal of cancer survivorship. ISSN 1932-2259. 10(1), p. 87–95. doi: 10.1007/s11764-015-0453-z. Full text in Research Archive
• Ranta, Susanna; Tuckuviene, Ruta; Mäkipernaa, Anne; Albertsen, Birgitte K.; Frisk, Tony & Tedgård, Ulf [Show all 15 contributors for this article] (2015). Cerebral sinus venous thromboses in children with acute lymphoblastic leukaemia – a multicentre study from the Nordic Society of Paediatric Haematology and Oncology. British Journal of Haematology. ISSN 0007-1048. 168(4), p. 547–552. doi: 10.1111/bjh.13162. Full text in Research Archive
• Kanellopoulos, Adriani; Andersson, Stein; Zeller, Bernward; Tamnes, Christian Krog; Fjell, Anders Martin & Walhovd, Kristine B [Show all 9 contributors for this article] (2015). Neurocognitive Outcome in Very Long-Term Survivors of Childhood Acute Lymphoblastic Leukemia After Treatment with Chemotherapy Only. Pediatric Blood & Cancer. ISSN 1545-5009. 63(1), p. 133–138. doi: 10.1002/pbc.25690. Full text in Research Archive

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• Ålykkja, Anette; Mellblom, Anneli; Ruud, Ellen; Wahl, Astrid Klopstad & Lie, Hanne Cathrine (2025). Abstract title Feasibility Testing of the Nurse-Led Transitioning Adolescents Off Cancer Treatment (TACT) Intervention. Full text in Research Archive
• Wahl, Astrid Klopstad; Mellblom, Anneli; Ruud, Ellen; Ålykkja, Anette & Lie, Hanne Cathrine (2024). Transition from active treatment to follow-up for adolescent survivors and their parents. Full text in Research Archive
• Ålykkja, Anette; Larsen, Marie Hamilton; Ruud, Ellen; Puhr, Anita & Lie, Hanne Cathrine (2024). The consequences of long-term and late effects on pediatric brain tumor survivors` everyday functioning. Full text in Research Archive
• Egset, Kaja Solland; Weider, Siri; Hjemdal, Odin; Ruud, Ellen; Hjort, Magnus Aassved & Eilertsen, Mary-Elizabeth Bradley [Show all 9 contributors for this article] (2024). Exploring the discrepancy between subjective and objective measures of executive functions in long-term, adult survivors of childhood acute lymphoblastic leukemia. Full text in Research Archive
• Larsen, Elna Hamilton; Wahl, Astrid Klopstad; Ruud, Ellen; Mellblom, Anneli; Ålykkja, Anette & Lie, Hanne Cathrine (2023). Adolescent cancer survivors and their parents’ experiences with the transition off-treatment to survivorship – A qualitative interview study. Full text in Research Archive
• Larsen, Marie Hamilton; Larsen, Elna Hamilton; Ålykkja, Anette; Underhaug, Katrine Aass; Ruud, Ellen & Lie, Hanne Cathrine (2023). The Post-it note just said leukaemia -experiences of teachers and local stakeholders supporting young childhood cancer survivors at school: A qualitative study. Full text in Research Archive
• Larsen, Marie Hamilton; Larsen, Elna Hamilton; Ålykkja, Anette; Underhaug, Katrine Aass; Ruud, Ellen & Lie, Hanne Cathrine (2022). "The post-it note just said leukemia” - experiences of teachers and local stakeholders of young childhood cancer survivors attending school – a qualitative study from the PACCS group. Full text in Research Archive
• Lie, Hanne Cathrine; Anderssen, Sigmund Alfred; Rueegg, Corina Silvia; Raastad, Truls; Grydeland, May & Thorsen, Lene [Show all 21 contributors for this article] (2022). The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) Study: Protocol for an International Mixed Methods Study. JMIR Research Protocols. 11(3). doi: 10.2196/35838. Full text in Research Archive Show summary

  Methods Results Discussion References Abbreviations Copyright Abstract Background: Survivors of childhood cancer represent a growing population with a long life expectancy but high risks of treatment-induced morbidity and premature mortality. Regular physical activity (PA) may improve their long-term health; however, high-quality empirical knowledge is sparse. Objective: The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) study comprises 4 work packages (WPs) aiming for the objective determination of PA and self-reported health behavior, fatigue, and quality of life (WP 1); physical fitness determination (WP 2); the evaluation of barriers to and facilitators of PA (WP 1 and 3); and the feasibility testing of an intervention to increase PA and physical fitness (WP 4). Methods: The PACCS study will use a mixed methods design, combining patient-reported outcome measures and objective clinical and physiological assessments with qualitative data gathering methods. A total of 500 survivors of childhood cancer aged 9 to 18 years with ≥1 year after treatment completion will be recruited in follow-up care clinics in Norway, Denmark, Finland, Germany, and Switzerland. All participants will participate in WP 1, of which approximately 150, 40, and 30 will be recruited to WP 2, WP3, and WP 4, respectively. The reference material for WP 1 is available from existing studies, whereas WP 2 will recruit healthy controls. PA levels will be measured using ActiGraph accelerometers and self-reports. Validated questionnaires will be used to assess health behaviors, fatigue, and quality of life. Physical fitness will be measured by a cardiopulmonary exercise test, isometric muscle strength tests, and muscle power and endurance tests. Limiting factors will be identified via neurological, pulmonary, and cardiac evaluations and the assessment of body composition and muscle size. Semistructured, qualitative interviews, analyzed using systematic text condensation, will identify the perceived barriers to and facilitators of PA for survivors of childhood cancer. In WP 4, we will evaluate the feasibility of a 6-month personalized PA intervention with the involvement of local structures. Results: Ethical approvals have been secured at all participating sites (Norwegian Regional Committee for Medical Research Ethics [2016/953 and 2018/739]; the Oslo University Hospital Data Protection Officer; equivalent institutions in Finland, Denmark [file H-19032270], Germany, and Switzerland [Ethics Committee of Northwestern and Central Switzerland, project ID: 2019-00410]). Data collection for WP 1 to 3 is complete. This will be completed by July 2022 for WP 4. Several publications are already in preparation, and 2 have been published. Conclusions: The PACCS study will generate high-quality knowledge that will contribute to the development of an evidence-based PA intervention for young survivors of childhood cancer to improve their long-term care and health. We will identify physiological, psychological, and social barriers to PA that can be targeted in interventions with immediate benefits for young survivors of childhood cancer in need of rehabilitation.

• Egset, Kaja Solland; Stubberud, Jan Egil; Weider, Siri; Ruud, Ellen; Hjort, Magnus Aassved & Eilertsen, Mary-Elizabeth B [Show all 9 contributors for this article] (2022). Neurocognitive outcome in long-term, adult survivors of childhood acute lymphoblastic leukemia treated with chemotherapy only. Full text in Research Archive
• Egset, Kaja Solland; Stubberud, Jan Egil; Weider, Siri; Ruud, Ellen; Hjort, Magnus Aassved & Eilertsen, Mary-Elizabeth B [Show all 9 contributors for this article] (2022). Neurocognitive outcome in long-term, adult survivors of childhood acute lymphoblastic leukemia treated with chemotherapy only. Pediatric Blood & Cancer. ISSN 1545-5009. Full text in Research Archive
• Andries, Aristomo; Ørstavik, Kristin; Rueegg, Corina Silvia; Eng, Sindre; Edvardsen, Elisabeth & Allen, Sara-Maria [Show all 10 contributors for this article] (2022). Polynevropati hos barnekreftoverlevere. Full text in Research Archive
• Larsen, Elna Hamilton; Wahl, Astrid Klopstad; Ruud, Ellen; Mellblom, Anneli & Lie, Hanne Cathrine (2022). Adolescents transition experiences when active treatment ends - Results from a qualitative interview study. Full text in Research Archive
• Jarvis, Kirsten Brunsvig; Lind, Andreas; LeBlanc, Marissa Erin & Ruud, Ellen (2021). Observed reduction in the diagnosis of acute lymphoblastic leukaemia in children during the COVID-19 pandemic. Acta Paediatrica. ISSN 0803-5253. 110(2), p. 596–597. doi: 10.1111/apa.15576. Full text in Research Archive
• Larsen, Elna Hamilton; Mellblom, Anneli; Wahl, Astrid Klopstad; Ruud, Ellen & Lie, Hanne Cathrine (2021). Transitioning to survivorship - Healthcare Professionals views on the off- treatment transition for adolescents with cancer. Full text in Research Archive
• Larsen, Marie Hamilton; Larsen, Elna Hamilton; Ruud, Ellen; Mellblom, Anneli; Helland, Sunniva & Lie, Hanne Cathrine (2021). I have to do things different, but make it work - childhood cancer survivors experience of self management in daily living. Full text in Research Archive
• Ålykkja, Anette; Ruud, Ellen; Larsen, Marie Hamilton; Vatne, Torun Marie & Lie, Hanne Cathrine (2019). Available, but not always accessible: A nationwide, qualitative study of multidisciplinary healthcare providers' experiences with follow-up care after paediatric brain tumour. Full text in Research Archive
• Diep, Phoi Phoi; Melberg, Hans Olav; Brinch, Lorentz; Buechner, Jochen; Fløisand, Yngvar & Gedde-Dahl, Thobias [Show all 9 contributors for this article] (2018). Cost-utility of allogeneic hematopoietic stem cell transplantation in Norway. Bone Marrow Transplantation. ISSN 0268-3369. 53(5), p. 657–660. doi: 10.1038/s41409-018-0091-y. Full text in Research Archive
• Diep, Phoi Phoi; Melberg, Hans Olav; Brinch, Lorentz; Buechner, Jochen; Fløisand, Yngvar & Gedde-Dahl, Thobias [Show all 8 contributors for this article] (2017). Allogeneic hematopoietic stem cell transplantation in Norway 1974-2009: Cost-utility and survival in children and young adults. Full text in Research Archive
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