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Prof. Paul Nathan
The Hospital for Sick Children

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Special articles
Published: 01 August 2021 in JCO Clinical Cancer Informatics
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Cancer Informatics for Cancer Centers (CI4CC) is a grassroots, nonprofit 501c3 organization intended to provide a focused national forum for engagement of senior cancer informatics leaders, primarily aimed at academic cancer centers anywhere in the world but with a special emphasis on the 70 National Cancer Institute–funded cancer centers. This consortium has regularly held topic-focused biannual face-to-face symposiums. These meetings are a place to review cancer informatics and data science priorities and initiatives, providing a forum for discussion of the strategic and pragmatic issues that we faced at our respective institutions and cancer centers. Here, we provide meeting highlights from the latest CI4CC Symposium, which was delayed from its original April 2020 schedule because of the COVID-19 pandemic and held virtually over three days (September 24, October 1, and October 8) in the fall of 2020. In addition to the content presented, we found that holding this event virtually once a week for 6 hours was a great way to keep the kind of deep engagement that a face-to-face meeting engenders. This is the second such publication of CI4CC Symposium highlights, the first covering the meeting that took place in Napa, California, from October 14-16, 2019. We conclude with some thoughts about using data science to learn from every child with cancer, focusing on emerging activities of the National Cancer Institute's Childhood Cancer Data Initiative.

ACS Style

Anthony R. Kerlavage; Anne C. Kirchhoff; Jaime M. Guidry Auvil; Norman E. Sharpless; Kara L. Davis; Karlyne Reilly; Gregory Reaman; Lynne Penberthy; Dennis Deapen; Amie Hwang; Eric B. Durbin; Sara L. Gallotto; Richard Aplenc; Samuel L. Volchenboum; Allison P. Heath; Bruce J. Aronow; Jinghui Zhang; Olena Vaske; Todd A. Alonzo; Paul C. Nathan; Jenny N. Poynter; Greg Armstrong; Erin E. Hahn; Karen J. Wernli; Casey Greene; Jack DiGiovanna; Adam C. Resnick; Eve R. Shalley; Sorena Nadaf; Warren A. Kibbe. Cancer Informatics for Cancer Centers: Scientific Drivers for Informatics, Data Science, and Care in Pediatric, Adolescent, and Young Adult Cancer. JCO Clinical Cancer Informatics 2021, 881 -896.

AMA Style

Anthony R. Kerlavage, Anne C. Kirchhoff, Jaime M. Guidry Auvil, Norman E. Sharpless, Kara L. Davis, Karlyne Reilly, Gregory Reaman, Lynne Penberthy, Dennis Deapen, Amie Hwang, Eric B. Durbin, Sara L. Gallotto, Richard Aplenc, Samuel L. Volchenboum, Allison P. Heath, Bruce J. Aronow, Jinghui Zhang, Olena Vaske, Todd A. Alonzo, Paul C. Nathan, Jenny N. Poynter, Greg Armstrong, Erin E. Hahn, Karen J. Wernli, Casey Greene, Jack DiGiovanna, Adam C. Resnick, Eve R. Shalley, Sorena Nadaf, Warren A. Kibbe. Cancer Informatics for Cancer Centers: Scientific Drivers for Informatics, Data Science, and Care in Pediatric, Adolescent, and Young Adult Cancer. JCO Clinical Cancer Informatics. 2021; (5):881-896.

Chicago/Turabian Style

Anthony R. Kerlavage; Anne C. Kirchhoff; Jaime M. Guidry Auvil; Norman E. Sharpless; Kara L. Davis; Karlyne Reilly; Gregory Reaman; Lynne Penberthy; Dennis Deapen; Amie Hwang; Eric B. Durbin; Sara L. Gallotto; Richard Aplenc; Samuel L. Volchenboum; Allison P. Heath; Bruce J. Aronow; Jinghui Zhang; Olena Vaske; Todd A. Alonzo; Paul C. Nathan; Jenny N. Poynter; Greg Armstrong; Erin E. Hahn; Karen J. Wernli; Casey Greene; Jack DiGiovanna; Adam C. Resnick; Eve R. Shalley; Sorena Nadaf; Warren A. Kibbe. 2021. "Cancer Informatics for Cancer Centers: Scientific Drivers for Informatics, Data Science, and Care in Pediatric, Adolescent, and Young Adult Cancer." JCO Clinical Cancer Informatics , no. 5: 881-896.

Original reports
Published: 10 July 2021 in Journal of Clinical Oncology
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PURPOSE To determine the incidence of serious chronic health conditions among survivors of pediatric Hodgkin lymphoma (HL), compare by era of therapy and by selected cancer therapies, and provide estimates of risks associated with contemporary therapy. METHODS Assessing 2,996 5-year HL survivors in the Childhood Cancer Survivor Study diagnosed from 1970 to 1999, we examined the cumulative incidence of severe to fatal chronic conditions (grades 3-5) using self-report conditions, medically confirmed subsequent malignant neoplasms, and cause of death based on the National Death Index. We used multivariable regression models to estimate hazard ratios (HRs) per decade and by key treatment exposures. RESULTS HL survivors were of a mean age of 35.6 years (range, 12-58 years). The cumulative incidence of any grade 3-5 condition by 35 years of age was 31.4% (95% CI, 29.2 to 33.5). Females were twice as likely (HR, 2.1; 95% CI, 1.8 to 2.4) to have a grade 3-5 condition compared with males. From the 1970s to the 1990s, there was a 20% reduction (HR, 0.8; 95% CI, 0.7 to 0.9) in decade-specific risk of a grade 3-5 condition ( P trend = .002). In survivors who had a recurrence and/or hematopoietic cell transplant, the risk of a grade 3-5 condition was substantially elevated, similar to that of survivors treated with high-dose, extended-field radiotherapy (HR, 1.2; 95% CI, 0.9 to 1.5). Compared with survivors treated with chest radiotherapy ≥ 35 Gy in combination with an anthracycline or alkylator, a contemporary regimen for low-intermediate risk HL was estimated to lead to a 40% reduction in risk of a grade 3-5 condition (HR, 0.6; 95% CI, 0.4 to 0.8). CONCLUSION This study demonstrates that risk-adapted therapy for pediatric HL has resulted in a significant reduction in serious long-term outcomes.

ACS Style

Kevin C. Oeffinger; Kayla L. Stratton; Melissa M. Hudson; Wendy M. Leisenring; Tara O. Henderson; Rebecca M. Howell; Suzanne L. Wolden; Louis S. Constine; Lisa R. Diller; Charles A. Sklar; Paul C. Nathan; Sharon M. Castellino; Dana Barnea; Susan A. Smith; Raymond J. Hutchinson; Gregory T. Armstrong; Leslie L. Robison. Impact of Risk-Adapted Therapy for Pediatric Hodgkin Lymphoma on Risk of Long-Term Morbidity: A Report From the Childhood Cancer Survivor Study. Journal of Clinical Oncology 2021, 39, 2266 -2275.

AMA Style

Kevin C. Oeffinger, Kayla L. Stratton, Melissa M. Hudson, Wendy M. Leisenring, Tara O. Henderson, Rebecca M. Howell, Suzanne L. Wolden, Louis S. Constine, Lisa R. Diller, Charles A. Sklar, Paul C. Nathan, Sharon M. Castellino, Dana Barnea, Susan A. Smith, Raymond J. Hutchinson, Gregory T. Armstrong, Leslie L. Robison. Impact of Risk-Adapted Therapy for Pediatric Hodgkin Lymphoma on Risk of Long-Term Morbidity: A Report From the Childhood Cancer Survivor Study. Journal of Clinical Oncology. 2021; 39 (20):2266-2275.

Chicago/Turabian Style

Kevin C. Oeffinger; Kayla L. Stratton; Melissa M. Hudson; Wendy M. Leisenring; Tara O. Henderson; Rebecca M. Howell; Suzanne L. Wolden; Louis S. Constine; Lisa R. Diller; Charles A. Sklar; Paul C. Nathan; Sharon M. Castellino; Dana Barnea; Susan A. Smith; Raymond J. Hutchinson; Gregory T. Armstrong; Leslie L. Robison. 2021. "Impact of Risk-Adapted Therapy for Pediatric Hodgkin Lymphoma on Risk of Long-Term Morbidity: A Report From the Childhood Cancer Survivor Study." Journal of Clinical Oncology 39, no. 20: 2266-2275.

Original article
Published: 01 June 2021 in Cancer
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Background Medical financial burden includes material, behavioral, and psychological hardship and has been underinvestigated among adult survivors of childhood cancer. Methods A survey from 698 survivors and 210 siblings from the Childhood Cancer Survivor Study was analyzed. The intensity of financial hardship was estimated across 3 domains: 1) material, including conditions that arise from medical expenses; 2) behavioral, including coping behaviors to manage medical expenses; and 3) psychological hardship resulting from worries about medical expenses and insurance, as measured by the number of instances of each type of financial hardship (0, 1-2, and ≥3 instances). Multivariable logistic regressions were conducted to examine the clinical and sociodemographic predictors of experiencing financial hardship (0-2 vs ≥3 instances). Results The intensity of financial hardship did not significantly differ between survivors and siblings. Survivors reported more instances of material hardship than siblings (1-2 instances: 27.2% of survivors vs 22.6% of siblings; ≥3 instances: 15.9% of survivors vs 11.4% siblings; overall P = .03). In multivariable regressions, insurance was protective against all domains of financial hardship (behavioral odds ratio [OR], 0.12; 95% confidence interval [CI], 0.06-0.22; material OR, 0.37; 95% CI, 0.19-0.71; psychological OR, 0.10; 95% CI, 0.05-0.21). Survivors who were older at diagnosis, female, and with chronic health conditions generally had higher levels of hardship. Brain radiation and alkylating agents were associated with higher levels of hardship. Conclusions Material, behavioral, and psychological financial burden among survivors of childhood cancer is common.

ACS Style

Douglas Fair; Elyse R. Park; Ryan D. Nipp; Julia Rabin; Kelly Hyland; Karen Kuhlthau; Giselle K. Perez; Paul C. Nathan; Gregory T. Armstrong; Kevin C. Oeffinger; Leslie L. Robison; Wendy Leisenring; Anne C. Kirchhoff. Material, behavioral, and psychological financial hardship among survivors of childhood cancer in the Childhood Cancer Survivor Study. Cancer 2021, 127, 3214 -3222.

AMA Style

Douglas Fair, Elyse R. Park, Ryan D. Nipp, Julia Rabin, Kelly Hyland, Karen Kuhlthau, Giselle K. Perez, Paul C. Nathan, Gregory T. Armstrong, Kevin C. Oeffinger, Leslie L. Robison, Wendy Leisenring, Anne C. Kirchhoff. Material, behavioral, and psychological financial hardship among survivors of childhood cancer in the Childhood Cancer Survivor Study. Cancer. 2021; 127 (17):3214-3222.

Chicago/Turabian Style

Douglas Fair; Elyse R. Park; Ryan D. Nipp; Julia Rabin; Kelly Hyland; Karen Kuhlthau; Giselle K. Perez; Paul C. Nathan; Gregory T. Armstrong; Kevin C. Oeffinger; Leslie L. Robison; Wendy Leisenring; Anne C. Kirchhoff. 2021. "Material, behavioral, and psychological financial hardship among survivors of childhood cancer in the Childhood Cancer Survivor Study." Cancer 127, no. 17: 3214-3222.

Journal article
Published: 12 April 2021 in JNCI: Journal of the National Cancer Institute
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Background Cancer and its treatment can result in lifelong medical financial hardship, which we aimed to describe among adult survivors of adolescent and young adult (AYA) cancers in the United States. Methods We identified adult (aged ≥18 years) survivors of AYA cancers (diagnosed ages 15-39 years) and adults without a cancer history from the 2010-2018 National Health Interview Surveys. Proportions of respondents reporting measures in different hardship domains (material [eg, problems paying bills], psychological [eg, distress], and behavioral [eg, forgoing care due to cost]) were compared between groups using multivariable logistic regression models and hardship intensity (cooccurrence of hardship domains) using ordinal logistic regression. Cost-related changes in prescription medication use were assessed separately. Results A total of 2588 AYA cancer survivors (median = 31 [interquartile range = 26-35] years at diagnosis; 75.0% more than 6 years and 50.0% more than 16 years since diagnosis) and 256 964 adults without a cancer history were identified. Survivors were more likely to report at least 1 hardship measure in material (36.7% vs 27.7%, P < .001) and behavioral (28.4% vs 21.2%, P < .001) domains, hardship in all 3 domains (13.1% vs 8.7%, P < .001), and at least 1 cost-related prescription medication nonadherence (13.7% vs 10.3%, P = .001) behavior. Conclusions Adult survivors of AYA cancers are more likely to experience medical financial hardship across multiple domains compared with adults without a cancer history. Health-care providers must recognize this inequity and its impact on survivors’ health, and multifaceted interventions are necessary to address underlying causes.

ACS Style

Amy D Lu; Zhiyuan Zheng; Xuesong Han; Ruowen Qi; Jingxuan Zhao; K Robin Yabroff; Paul C Nathan. Medical Financial Hardship in Survivors of Adolescent and Young Adult Cancer in the United States. JNCI: Journal of the National Cancer Institute 2021, 113, 997 -1004.

AMA Style

Amy D Lu, Zhiyuan Zheng, Xuesong Han, Ruowen Qi, Jingxuan Zhao, K Robin Yabroff, Paul C Nathan. Medical Financial Hardship in Survivors of Adolescent and Young Adult Cancer in the United States. JNCI: Journal of the National Cancer Institute. 2021; 113 (8):997-1004.

Chicago/Turabian Style

Amy D Lu; Zhiyuan Zheng; Xuesong Han; Ruowen Qi; Jingxuan Zhao; K Robin Yabroff; Paul C Nathan. 2021. "Medical Financial Hardship in Survivors of Adolescent and Young Adult Cancer in the United States." JNCI: Journal of the National Cancer Institute 113, no. 8: 997-1004.

Original reports
Published: 20 March 2021 in Journal of Clinical Oncology
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PURPOSE Risk and predictors of long-term mental health outcomes in survivors of adolescent and young adult (AYA) cancers are poorly characterized. Mental health is consequently neglected in long-term follow-up. METHODS We identified all AYA in Ontario, Canada age 15-21 years when diagnosed with one of six common cancers between 1992-2012 using a population-based database, and compared them with matched controls. Linkage to provincial healthcare data allowed analysis of rates of outpatient (family physician and psychiatrist) visits for psychiatric indications and time to severe psychiatric events (emergency room visit, hospitalization, and suicide). Demographic-, disease-, and treatment-related predictors of adverse outcomes, including treatment setting (adult v pediatric), were examined. RESULTS Among 2,208 survivors and 10,457 matched controls, 5-year survivors experienced higher rates of outpatient mental health visits than controls (671 visits per 1,000 person-years v 506; adjusted rate ratio [RR] 1.3; 95% CI, 1.1 to 1.5; P = .006). Risk of a severe psychiatric episode was also increased among survivors (adjusted hazard ratio [HR], 1.2; 95% CI, 1.1 to 1.4, P = .008). Risk of a psychotic disorder–associated severe event was doubled in survivors (HR, 2.0, 95% CI, 1.3 to 2.4; P = .007) although absolute risk remained low (15-year cumulative incidence 1.7%; 95% CI, 1.0 to 2.7). In multivariable analysis, survivors treated in adult centers experienced substantially higher outpatient visit rates compared with those treated in pediatric settings (RR 1.8; 95% CI, 1.0 to 3.1; P = .04). CONCLUSION Survivors of AYA cancer are at substantially increased risk of adverse mental health outcomes, with those treated in adult centers at particular risk. Although absolute incidence was low, survivors were at increased risk of psychotic disorder–associated severe events. Long-term mental health surveillance is warranted, as is research into effective interventions during or after cancer treatment.

ACS Style

Riddhita De; Rinku Sutradhar; Paul Kurdyak; Suriya Aktar; Jason D. Pole; Nancy Baxter; Paul C. Nathan; Sumit Gupta. Incidence and Predictors of Mental Health Outcomes Among Survivors of Adolescent and Young Adult Cancer: A Population-Based Study Using the IMPACT Cohort. Journal of Clinical Oncology 2021, 39, 1010 -1019.

AMA Style

Riddhita De, Rinku Sutradhar, Paul Kurdyak, Suriya Aktar, Jason D. Pole, Nancy Baxter, Paul C. Nathan, Sumit Gupta. Incidence and Predictors of Mental Health Outcomes Among Survivors of Adolescent and Young Adult Cancer: A Population-Based Study Using the IMPACT Cohort. Journal of Clinical Oncology. 2021; 39 (9):1010-1019.

Chicago/Turabian Style

Riddhita De; Rinku Sutradhar; Paul Kurdyak; Suriya Aktar; Jason D. Pole; Nancy Baxter; Paul C. Nathan; Sumit Gupta. 2021. "Incidence and Predictors of Mental Health Outcomes Among Survivors of Adolescent and Young Adult Cancer: A Population-Based Study Using the IMPACT Cohort." Journal of Clinical Oncology 39, no. 9: 1010-1019.

Journal article
Published: 08 February 2021 in Pediatric Blood & Cancer
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Background Adolescents and young adult (AYA) acute myeloid leukemia (AML) outcomes remain poor. The impact of locus of care (LOC; adult vs pediatric) in this population is unknown. Procedure The IMPACT cohort comprises detailed data for all Ontario, Canada, AYA aged 15‐21 years diagnosed with AML between 1992 and 2012, linked to population‐based health administrative data. We determined the impact of LOC on event‐free survival (EFS) and overall survival (OS), treatment‐related mortality (TRM), and relapse/progression. Results Among 140 AYA, 51 (36.4%) received therapy at pediatric centers. The five‐year EFS and OS for the whole cohort were 35.0% ± 4.0% and 53.6% ± 4.2%. Cumulative doses of anthracycline were higher among pediatric center AYA [median 355 mg/m2, interquartile range (IQR) 135‐492 vs 202 mg/m2, IQR 140‐364; P = 0.003]. In multivariable analyses, LOC was not predictive of either EFS [adult vs pediatric center hazard ratio (HR) 1.3, 95% confidence interval (CI) 0.8‐2.2, P = 0.27] or OS (HR 1.0, CI 0.6‐1.6, P = 0.97). However, patterns of treatment failure varied; higher two‐year incidence of TRM in pediatric centers (23.5% ± 6.0% vs.10.1% ± 3.2%; P = 0.046) was balanced by lower five‐year incidence of relapse/progression (33.3% ± 6.7% vs 56.2% ± 5.3%; P = 0.002). Conclusions AYA AML survival outcomes did not vary between pediatric and adult settings. Causes of treatment failure were different, with higher intensity pediatric protocols associated with higher TRM but lower relapse/progression. Careful risk stratification and enhanced supportive care may be of substantial benefit to AYA with AML by allocating maximal treatment intensity to patients who most benefit while minimizing the risk of TRM.

ACS Style

Sumit Gupta; Nancy N. Baxter; Rinku Sutradhar; Jason D. Pole; Chenthila Nagamuthu; Cindy Lau; Paul C. Nathan. Adolescents and young adult acute myeloid leukemia outcomes at pediatric versus adult centers: A population‐based study. Pediatric Blood & Cancer 2021, 68, e28939 .

AMA Style

Sumit Gupta, Nancy N. Baxter, Rinku Sutradhar, Jason D. Pole, Chenthila Nagamuthu, Cindy Lau, Paul C. Nathan. Adolescents and young adult acute myeloid leukemia outcomes at pediatric versus adult centers: A population‐based study. Pediatric Blood & Cancer. 2021; 68 (8):e28939.

Chicago/Turabian Style

Sumit Gupta; Nancy N. Baxter; Rinku Sutradhar; Jason D. Pole; Chenthila Nagamuthu; Cindy Lau; Paul C. Nathan. 2021. "Adolescents and young adult acute myeloid leukemia outcomes at pediatric versus adult centers: A population‐based study." Pediatric Blood & Cancer 68, no. 8: e28939.

Original article
Published: 19 January 2021 in Cancer
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Background Individuals diagnosed with acute lymphoblastic leukemia (ALL) between the ages of 22 and 39 years experience worse outcomes than those diagnosed when they are 21 years old or younger. Treatment at National Cancer Institute–designated Comprehensive Cancer Centers (CCC) mitigates these disparities but may be associated with higher expenditures. Methods Using deidentified administrative claims data (OptumLabs Data Warehouse), the cancer‐related expenditures were examined among patients with ALL diagnosed between 2001 and 2014. Multivariable generalized linear model with log‐link modeled average monthly health‐plan–paid (HPP) expenditures and amount owed by the patient (out‐of‐pocket [OOP]). Cost ratios were used to calculate excess expenditures (CCC vs non‐CCC). Incidence rate ratios (IRRs) compared CCC and non‐CCC monthly visit rates. Models adjusted for sociodemographics, comorbidities, adverse events, and months enrolled. Results Clinical and sociodemographic characteristics were comparable between CCC (n = 160) and non‐CCC (n = 139) patients. Higher monthly outpatient expenditures in CCC patients ($15,792 vs $6404; P < .001) were driven by outpatient hospital HPP expenditures. Monthly visit rates and per visit expenditures for nonchemotherapy visits (IRR = 1.6; P = .001; CCC = $8247, non‐CCC = $1191) drove higher outpatient hospital expenditures among CCCs. Monthly OOP expenditures were higher at CCCs for outpatient care (P = .02). Inpatient HPP expenditures were significantly higher at CCCs ($25,918 vs $13,881; ꞵ = 0.9; P < .001) before accounting for adverse events but were no longer significant after adjusting for adverse events (ꞵ = 0.4; P = .1). Hospitalizations and length of stay were comparable. Conclusions Young adults with ALL at CCCs have higher expenditures, likely reflecting differences in facility structure, billing practices, and comprehensive patient care. It would be reasonable to consider CCCs comparable to the oncology care model and incentivize the framework to achieve superior outcomes and long‐term cost savings. Lay Summary Health care expenditures in young adults (aged 22‐39 years) with acute lymphoblastic leukemia (ALL) are higher among patients at National Cancer Institute‐designated Comprehensive Cancer Centers (CCC) than those at non‐CCCs. The CCC/non‐CCC differences are significant among outpatient expenditures, which are driven by higher rates of outpatient hospital visits and outpatient hospital expenditures per visit at CCCs. Higher expenditures and visit rates of outpatient hospital visits among CCCs may also reflect how facility structure and billing patterns influence spending or comprehensive care. Young adults at CCCs face higher inpatient HPP expenditures; these are driven by serious adverse events.

ACS Style

Julie A. Wolfson; Smita Bhatia; Jill Ginsberg; Laura K. Becker Ms; David Bernstein; Henry J. Henk; Gary H. Lyman; Paul C. Nathan; Diane Puccetti; Jennifer J. Wilkes; Lena E. Winestone; Kelly M. Kenzik. Expenditures among young adults with acute lymphoblastic leukemia by site of care. Cancer 2021, 127, 1901 -1911.

AMA Style

Julie A. Wolfson, Smita Bhatia, Jill Ginsberg, Laura K. Becker Ms, David Bernstein, Henry J. Henk, Gary H. Lyman, Paul C. Nathan, Diane Puccetti, Jennifer J. Wilkes, Lena E. Winestone, Kelly M. Kenzik. Expenditures among young adults with acute lymphoblastic leukemia by site of care. Cancer. 2021; 127 (11):1901-1911.

Chicago/Turabian Style

Julie A. Wolfson; Smita Bhatia; Jill Ginsberg; Laura K. Becker Ms; David Bernstein; Henry J. Henk; Gary H. Lyman; Paul C. Nathan; Diane Puccetti; Jennifer J. Wilkes; Lena E. Winestone; Kelly M. Kenzik. 2021. "Expenditures among young adults with acute lymphoblastic leukemia by site of care." Cancer 127, no. 11: 1901-1911.

Special report
Published: 23 September 2020 in Pediatric Blood & Cancer
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Childhood, adolescent, and young adult (CAYA) cancer survivors may be at risk for a severe course of COVID‐19. Little is known about the clinical course of COVID‐19 in CAYA cancer survivors, or if additional preventive measures are warranted. We established a working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) to summarize existing evidence and worldwide recommendations regarding evidence about factors/conditions associated with risk for a severe course of COVID‐19 in CAYA cancer survivors, and to develop a consensus statement to provide guidance for healthcare practitioners and CAYA cancer survivors regarding COVID‐19.

ACS Style

Lisanne C. Verbruggen; Yuehan Wang; Saro H. Armenian; Matthew J. Ehrhardt; Helena J.H. Van Der Pal; Elvira C. Van Dalen; Jorrit W. Van As; Edit Bardi; Katja Baust; Claire Berger; Elio Castagnola; Katie A. Devine; Judith Gebauer; Jordan Gilleland Marchak; Adam W. Glaser; Andreas H. Groll; Gabrielle M. Haeusler; Jaap Den Hartogh; Riccardo Haupt; Lars Hjorth; Miho Kato; Tomáš Kepák; Maria M.W. (Rianne) Koopman; Thorsten Langer; Miho Maeda; Gisela Michel; Monica Muraca; Paul C. Nathan; Selina R. Van Den Oever; Vesna Pavasovic; Satomi Sato; Fiona Schulte; Lillian Sung; Wim Tissing; Anne Uyttebroeck; Renée L. Mulder; Claudia Kuehni; Roderick Skinner; Melissa M. Hudson; Leontien C.M. Kremer. Guidance regarding COVID‐19 for survivors of childhood, adolescent, and young adult cancer: A statement from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Pediatric Blood & Cancer 2020, 67, 1 .

AMA Style

Lisanne C. Verbruggen, Yuehan Wang, Saro H. Armenian, Matthew J. Ehrhardt, Helena J.H. Van Der Pal, Elvira C. Van Dalen, Jorrit W. Van As, Edit Bardi, Katja Baust, Claire Berger, Elio Castagnola, Katie A. Devine, Judith Gebauer, Jordan Gilleland Marchak, Adam W. Glaser, Andreas H. Groll, Gabrielle M. Haeusler, Jaap Den Hartogh, Riccardo Haupt, Lars Hjorth, Miho Kato, Tomáš Kepák, Maria M.W. (Rianne) Koopman, Thorsten Langer, Miho Maeda, Gisela Michel, Monica Muraca, Paul C. Nathan, Selina R. Van Den Oever, Vesna Pavasovic, Satomi Sato, Fiona Schulte, Lillian Sung, Wim Tissing, Anne Uyttebroeck, Renée L. Mulder, Claudia Kuehni, Roderick Skinner, Melissa M. Hudson, Leontien C.M. Kremer. Guidance regarding COVID‐19 for survivors of childhood, adolescent, and young adult cancer: A statement from the International Late Effects of Childhood Cancer Guideline Harmonization Group. Pediatric Blood & Cancer. 2020; 67 (12):1.

Chicago/Turabian Style

Lisanne C. Verbruggen; Yuehan Wang; Saro H. Armenian; Matthew J. Ehrhardt; Helena J.H. Van Der Pal; Elvira C. Van Dalen; Jorrit W. Van As; Edit Bardi; Katja Baust; Claire Berger; Elio Castagnola; Katie A. Devine; Judith Gebauer; Jordan Gilleland Marchak; Adam W. Glaser; Andreas H. Groll; Gabrielle M. Haeusler; Jaap Den Hartogh; Riccardo Haupt; Lars Hjorth; Miho Kato; Tomáš Kepák; Maria M.W. (Rianne) Koopman; Thorsten Langer; Miho Maeda; Gisela Michel; Monica Muraca; Paul C. Nathan; Selina R. Van Den Oever; Vesna Pavasovic; Satomi Sato; Fiona Schulte; Lillian Sung; Wim Tissing; Anne Uyttebroeck; Renée L. Mulder; Claudia Kuehni; Roderick Skinner; Melissa M. Hudson; Leontien C.M. Kremer. 2020. "Guidance regarding COVID‐19 for survivors of childhood, adolescent, and young adult cancer: A statement from the International Late Effects of Childhood Cancer Guideline Harmonization Group." Pediatric Blood & Cancer 67, no. 12: 1.

Review
Published: 01 February 2020 in Seminars in Oncology
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With the widespread adoption of multimodality treatment, 5-year survival of children diagnosed with cancer has improved dramatically in the past several decades from approximately 60% in 1970 to greater than 85% currently. As a result, there are an estimated nearly half a million long-term survivors of childhood cancer living in the United States today. However, survivors have, on average, significantly greater serious medical and psychosocial late effects compared with the general population. In this review, we will discuss the current epidemiology of childhood cancer survivorship, including new methods to estimate the burden of late effects and genetic susceptibility toward late effects. We will also review the development of surveillance guidelines for childhood cancer survivors and early toxicity signals from novel agents now being tested and used increasingly to treat pediatric and adult cancers. We conclude with an overview of current models of survivorship care and areas for future research.

ACS Style

Eric J. Chow; Kirsten K. Ness; Gregory T. Armstrong; Nickhill Bhakta; Jennifer M. Yeh; Smita Bhatia; Wendy Landier; Louis S. Constine; Melissa M. Hudson; Paul C. Nathan. Current and coming challenges in the management of the survivorship population. Seminars in Oncology 2020, 47, 23 -39.

AMA Style

Eric J. Chow, Kirsten K. Ness, Gregory T. Armstrong, Nickhill Bhakta, Jennifer M. Yeh, Smita Bhatia, Wendy Landier, Louis S. Constine, Melissa M. Hudson, Paul C. Nathan. Current and coming challenges in the management of the survivorship population. Seminars in Oncology. 2020; 47 (1):23-39.

Chicago/Turabian Style

Eric J. Chow; Kirsten K. Ness; Gregory T. Armstrong; Nickhill Bhakta; Jennifer M. Yeh; Smita Bhatia; Wendy Landier; Louis S. Constine; Melissa M. Hudson; Paul C. Nathan. 2020. "Current and coming challenges in the management of the survivorship population." Seminars in Oncology 47, no. 1: 23-39.

Article
Published: 05 November 2019 in Journal of Cancer Survivorship
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To examine the association between posttraumatic stress symptoms (PTSS), neurocognitive and psychosocial late-effects, health behaviors, and healthcare utilization in long-term survivors of childhood cancer. Participants included individuals (N = 6844; 52.5% female; mean [SD] age at diagnosis = 7.6 [5.8], at follow-up = 34.9 [7.5]) in the Childhood Cancer Survivor Study (CCSS). Follow-up included the Posttraumatic Stress Scale, Brief Symptom Inventory-18, Short-form 36 Health-related quality of life (HRQOL) survey, CCSS Neurocognitive Questionnaire, and questions about sociodemographics, physical health, health behaviors, and healthcare utilization. Modified Poisson regression and multinomial logistic regression models examined associations between posttraumatic stress symptoms (PTSS) and neurocognitive, HRQOL, health behavior, and healthcare outcomes when adjusting for sociodemographics, disease, and treatment. Long-term survivors with PTSS (N = 995, 14.5%) reported more impairment in mental (relative risk [RR] 3.42, 95% confidence interval [CI] 3.05–3.85), and physical (RR = 2.26, CI = 1.96–2.61) HRQOL. PTSS was also associated with increased impairment in task efficiency (RR = 3.09, CI = 2.72–3.51), working memory (RR = 2.55, CI = 2.30–2.83), organization (RR = 2.11, CI = 1.78–2.50), and emotional regulation (RR = 3.67, CI = 3.30–4.09). Survivors with PTSS were significantly more likely to attend cancer-specific health visits in the past 2 years (OR = 1.89, CI = 1.50–2.39), and showed greater likelihood of either high frequency (OR = 1.89, CI = 1.50–2.39) or complete lack of (OR = 1.63, CI = 1.32–2.01) primary care visits compared to survivors without PTSS. Survivors with PTSS reported significantly more psychosocial and neurocognitive late effects, and were more likely to engage in variable use of healthcare. PTSS is associated with additional challenges for a population vulnerable to adverse late effects. Inclusion of integrative services during follow-up visits may benefit functional outcomes.

ACS Style

Emily Crochet; Vida L. Tyc; Mingjuan Wang; Deo Kumar Srivastava; Kristi Van Sickle; Paul C. Nathan; Wendy Leisenring; Todd M. Gibson; Gregory T. Armstrong; Kevin Krull. Posttraumatic stress as a contributor to behavioral health outcomes and healthcare utilization in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Journal of Cancer Survivorship 2019, 13, 981 -992.

AMA Style

Emily Crochet, Vida L. Tyc, Mingjuan Wang, Deo Kumar Srivastava, Kristi Van Sickle, Paul C. Nathan, Wendy Leisenring, Todd M. Gibson, Gregory T. Armstrong, Kevin Krull. Posttraumatic stress as a contributor to behavioral health outcomes and healthcare utilization in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. Journal of Cancer Survivorship. 2019; 13 (6):981-992.

Chicago/Turabian Style

Emily Crochet; Vida L. Tyc; Mingjuan Wang; Deo Kumar Srivastava; Kristi Van Sickle; Paul C. Nathan; Wendy Leisenring; Todd M. Gibson; Gregory T. Armstrong; Kevin Krull. 2019. "Posttraumatic stress as a contributor to behavioral health outcomes and healthcare utilization in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study." Journal of Cancer Survivorship 13, no. 6: 981-992.

Review
Published: 24 July 2019 in Journal of Cancer Survivorship
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Many survivors of childhood cancer are at high risk of late effects of their cancer therapy, including cardiac toxicity and subsequent malignant neoplasms (SMN). Current North American guidelines recommend periodic surveillance for these late effects. We conducted a systematic review of the literature to estimate rates of adherence to recommended surveillance and summarize studies evaluating interventions intended to increase adherence. We searched MEDLINE, Embase, Web of Science, and the Cumulative Index of Nursing and Allied Health Literature (CINAHL) for articles published between January 2000 and September 2018 that reported adherence to surveillance for cardiac toxicity and SMN (breast and colorectal cancer) and interventions implemented to improve completion of recommended testing. Risk of bias was assessed using relevant Cochrane checklists. Due to heterogeneity and overlapping study populations, we used narrative synthesis to summarize the findings. This review was registered in PROSPERO: CRD42018098878. Thirteen studies met our inclusion criteria for assessing adherence to surveillance, while five assessed interventions to improve rates of surveillance. No studies met criteria for low risk of bias. Completion of recommended surveillance was lowest for colorectal cancer screening (11.5–30.0%) followed by cardiomyopathy (22.3–48.1%) and breast cancer (37.0–56.5%). Factors such as patient-provider communication, engagement with the health care system, and receipt of information were consistently reported to be associated with higher rates of surveillance. Of five randomized controlled trials aimed at improving surveillance, only two significantly increase completion of recommended testing—one for echocardiography and one for mammography. Both involved telephone outreach to encourage and facilitate these tests. The majority of childhood cancer survivors at high risk of cardiac toxicity or SMN do not receive evidence-based surveillance. There is paucity of rigorous studies evaluating interventions to increase surveillance in this population. Robust trials are needed to assess whether tailored interventions, designed based on unique characteristics and needs of each survivor population, could improve adherence.

ACS Style

Veda Zabih; Alyssa Kahane; Natalya E. O’Neill; Noah Ivers; Paul C. Nathan. Interventions to improve adherence to surveillance guidelines in survivors of childhood cancer: a systematic review. Journal of Cancer Survivorship 2019, 13, 713 -729.

AMA Style

Veda Zabih, Alyssa Kahane, Natalya E. O’Neill, Noah Ivers, Paul C. Nathan. Interventions to improve adherence to surveillance guidelines in survivors of childhood cancer: a systematic review. Journal of Cancer Survivorship. 2019; 13 (5):713-729.

Chicago/Turabian Style

Veda Zabih; Alyssa Kahane; Natalya E. O’Neill; Noah Ivers; Paul C. Nathan. 2019. "Interventions to improve adherence to surveillance guidelines in survivors of childhood cancer: a systematic review." Journal of Cancer Survivorship 13, no. 5: 713-729.

Research article
Published: 16 July 2019 in Pediatric Blood & Cancer
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Background Identification and development of young investigators (YI) is critical to the long‐term success of research organizations. In 2004, the Children's Oncology Group (COG) created a mentorship program to foster the career development of YIs (faculty <10 years from initial appointment). This study sought to assess mentors’ long‐term assessment of this program. Procedure In 2018, 101 past or current mentors in the COG YI mentorship program completed an online survey. Statistical comparisons were made with the Kruskal‐Walis test. Results The response rate was 74.2%. As some mentors had multiple mentees, we report on 138 total mentee‐mentor pairs. Mentors were 57.4% male, and mentees were 39.1% male. Mentors rated being mentored as a YI as important with a median rating of 90 on a scale of 1‐100, interquartile range (IQR) 80‐100. Most mentors reported that being mentored themselves helped their own success within COG (78.2%) and with their overall career development (92.1%). Most mentors enjoyed serving in the program (72.3%) and the median success rating (on a scale of 1‐100) across the mentor‐mentee pairings was 75, IQR 39‐90. Success ratings did not differ by mentor/mentee gender, but improved with increased frequency of mentor‐mentee interactions (P < .001). Mentor‐mentee pairs who set initial goals reported higher success ratings than those who did not (P < .001). Tangible successes included current mentee COG committee involvement (45.7%), ongoing mentor‐mentee collaboration (53.6%), and co‐authored manuscript publication (38.4%). Conclusion These data indicate that mentorship is important for successful professional development. Long‐term mentoring success improves when mentors and mentees set goals upfront and meet frequently.

ACS Style

Adam J. Esbenshade; Lisa S. Kahalley; Reto Baertschiger; Roshni Dasgupta; Kelly C. Goldsmith; Paul C. Nathan; Paul Harker‐Murray; Carrie L. Kitko; Edward Anders Kolb; Erin S. Murphy; Jodi A. Muscal; Christopher R. Pierson; Damon Reed; Reuven Schore; Yoram Unguru; Rajkumar Venkatramani; Birte Wistinghausen; Girish Dhall. Mentors’ perspectives on the successes and challenges of mentoring in the COG Young Investigator mentorship program: A report from the Children's Oncology Group. Pediatric Blood & Cancer 2019, 66, e27920 -e27920.

AMA Style

Adam J. Esbenshade, Lisa S. Kahalley, Reto Baertschiger, Roshni Dasgupta, Kelly C. Goldsmith, Paul C. Nathan, Paul Harker‐Murray, Carrie L. Kitko, Edward Anders Kolb, Erin S. Murphy, Jodi A. Muscal, Christopher R. Pierson, Damon Reed, Reuven Schore, Yoram Unguru, Rajkumar Venkatramani, Birte Wistinghausen, Girish Dhall. Mentors’ perspectives on the successes and challenges of mentoring in the COG Young Investigator mentorship program: A report from the Children's Oncology Group. Pediatric Blood & Cancer. 2019; 66 (10):e27920-e27920.

Chicago/Turabian Style

Adam J. Esbenshade; Lisa S. Kahalley; Reto Baertschiger; Roshni Dasgupta; Kelly C. Goldsmith; Paul C. Nathan; Paul Harker‐Murray; Carrie L. Kitko; Edward Anders Kolb; Erin S. Murphy; Jodi A. Muscal; Christopher R. Pierson; Damon Reed; Reuven Schore; Yoram Unguru; Rajkumar Venkatramani; Birte Wistinghausen; Girish Dhall. 2019. "Mentors’ perspectives on the successes and challenges of mentoring in the COG Young Investigator mentorship program: A report from the Children's Oncology Group." Pediatric Blood & Cancer 66, no. 10: e27920-e27920.

Journal article
Published: 09 May 2019 in Journal of the National Cancer Institute
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Background Adolescent women treated for Hodgkin lymphoma (HL) are at increased risk of breast cancer (BC). We evaluate the cost-utility of eight high-risk BC surveillance strategies for this population, including the Children’s Oncology Group guideline of same-day annual mammography and magnetic resonance imaging (MRI) beginning at age 25 years. Methods A discrete event simulation model was used to simulate the life histories of a cohort of 500 000 25-year-old women treated for HL at age 15 years. We estimated BC incidence and mortality, life expectancy, quality-adjusted life-years (QALYs), health-care costs, and the relative cost-utility (incremental cost-utility ratio [ICUR]) under the eight assessed surveillance strategies. One-way sensitivity analysis enabled modeling of uncertainty evaluation. A publicly funded health-care payer perspective was adopted. Results Costs across the eight screening strategies ranged from $32 643 to $43 739, whereas QALYs ranged from 24.419 to 24.480. In an incremental cost-effectiveness analysis, annual mammography beginning at age 25 years was associated with an ICUR of $43 000/QALY gained, annual MRI beginning at age 25 years with a switch to annual mammography at age 50 years had an ICUR of $148 000/QALY, and annual MRI beginning at age 25 years had an ICUR of $227 222/QALY. Among all assessed surveillance strategies, the differences in life expectancy were small. Conclusions Current high-risk BC surveillance guidelines do not reflect the most cost-effective strategy in survivors of adolescent HL. The results suggest that groups at high risk of BC may require high-risk surveillance guidelines that reflect their specific risk profile.

ACS Style

Jill Furzer; Lauren Tessier; David Hodgson; Cecilia Cotton; Paul C Nathan; Sumit Gupta; Petros Pechlivanoglou. Cost-Utility of Early Breast Cancer Surveillance in Survivors of Thoracic Radiation-Treated Adolescent Hodgkin Lymphoma. Journal of the National Cancer Institute 2019, 112, 63 -70.

AMA Style

Jill Furzer, Lauren Tessier, David Hodgson, Cecilia Cotton, Paul C Nathan, Sumit Gupta, Petros Pechlivanoglou. Cost-Utility of Early Breast Cancer Surveillance in Survivors of Thoracic Radiation-Treated Adolescent Hodgkin Lymphoma. Journal of the National Cancer Institute. 2019; 112 (1):63-70.

Chicago/Turabian Style

Jill Furzer; Lauren Tessier; David Hodgson; Cecilia Cotton; Paul C Nathan; Sumit Gupta; Petros Pechlivanoglou. 2019. "Cost-Utility of Early Breast Cancer Surveillance in Survivors of Thoracic Radiation-Treated Adolescent Hodgkin Lymphoma." Journal of the National Cancer Institute 112, no. 1: 63-70.

Original article
Published: 08 May 2019 in Cancer
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Background Childhood cancer survivors are at risk for adverse psychological outcomes. Whether exercise can attenuate this risk is unknown. Methods In total, 6199 participants in the Childhood Cancer Survivor Study (median age, 34.3 years [range, 22.0‐54.0 years]; median age at diagnosis, 10.0 years [range, 0‐21.0 years]) completed a questionnaire assessing vigorous exercise and medical/psychological conditions. Outcomes were evaluated a median of 7.8 years (range, 0.1‐10.0 years) later and were defined as: symptom level above the 90th percentile of population norms for depression, anxiety, or somatization on the Brief Symptom Inventory‐18; cancer‐related pain; cognitive impairment using a validated self‐report neurocognitive questionnaire; or poor health‐related quality of life. Log‐binomial regression estimated associations between exercise (metabolic equivalent [MET]‐hours per week−1) and outcomes adjusting for cancer diagnosis, treatment, demographics, and baseline conditions. Results The prevalence of depression at follow‐up was 11.4% (95% CI, 10.6%‐12.3%), anxiety 7.4% (95% CI, 6.7%‐8.2%) and somatization 13.9% (95% CI, 13.0%‐14.9%). Vigorous exercise was associated with lower prevalence of depression and somatization. The adjusted prevalence ratio for depression was 0.87 (95% CI, 0.72‐1.05) for 3 to 6 MET hours per week−1, 0.76 (95% CI, 0.62‐0.94) for 9 to 12 MET‐hours per week−1, and 0.74 (95% CI, 0.58‐0.95) for 15 to 21 MET‐hours per week−1. Compared with 0 MET hours per week−1, 15 to 21 MET‐hours per week−1 were associated with an adjusted prevalence ratio of 0.79 (95% CI, 0.62‐1.00) for somatization. Vigorous exercise also was associated with less impairment in the physical functioning, general health and vitality (Ptrend < .001), emotional role limitations (Ptrend = .02), and mental health (Ptrend = .02) domains as well as higher cognitive function in the domains of task completion, organization, and working memory (P < .05 for all), but not in the domain of cancer pain. Conclusions Vigorous exercise is associated with less psychological burden and cognitive impairment in childhood cancer survivors.

ACS Style

Emily S. Tonorezos; Jennifer S. Ford; Linwei Wang; Kirsten K. Ness Pt; Yutaka Yasui; Wendy Leisenring; Charles A. Sklar; Leslie L. Robison; Kevin C. Oeffinger; Paul C. Nathan; Gregory T. Armstrong; Kevin Krull; Lee W. Jones. Impact of exercise on psychological burden in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. Cancer 2019, 125, 3059 -3067.

AMA Style

Emily S. Tonorezos, Jennifer S. Ford, Linwei Wang, Kirsten K. Ness Pt, Yutaka Yasui, Wendy Leisenring, Charles A. Sklar, Leslie L. Robison, Kevin C. Oeffinger, Paul C. Nathan, Gregory T. Armstrong, Kevin Krull, Lee W. Jones. Impact of exercise on psychological burden in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. Cancer. 2019; 125 (17):3059-3067.

Chicago/Turabian Style

Emily S. Tonorezos; Jennifer S. Ford; Linwei Wang; Kirsten K. Ness Pt; Yutaka Yasui; Wendy Leisenring; Charles A. Sklar; Leslie L. Robison; Kevin C. Oeffinger; Paul C. Nathan; Gregory T. Armstrong; Kevin Krull; Lee W. Jones. 2019. "Impact of exercise on psychological burden in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study." Cancer 125, no. 17: 3059-3067.

Journal article
Published: 08 May 2019 in International Journal of Environmental Research and Public Health
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Haematopoietic stem cell transplant (HSCT) is an intensive therapy for some pediatric hematological illnesses. Survivors are at risk for adverse effects including exercise intolerance. Peripheral tissue dysfunction may contribute to exercise intolerance; therefore, we examined the feasibility of a magnetic resonance spectroscopy (MRS) protocol to evaluate skeletal muscle metabolism in children post-HSCT. We measured demographic characteristics, aerobic exercise capacity (YMCA protocol), and skeletal muscle function in response to exercise (MRS; Siemens 3T MRI) in five children post-allogeneic HSCT and five age/body mass index-matched healthy controls (HCs). The mean age (± standard deviation) of the HSCT group and HC group were 11 ± 1.2 and 12.8 ± 2.4 years, respectively. Children post-HSCT had a lower peak aerobic exercise capacity compared to HCs (27.8 ± 3.4 vs. 40.3 ± 8.1 mL kg-1 min-1, respectively; p = 0.015). Exercise MRS testing protocols were successfully completed by all HSCT and HC participants; however, MRS-derived skeletal muscle metabolism variables were not different between the two groups. In conclusion, the use of exercise protocols in conjunction with MRS to assess peripheral skeletal muscle metabolism was achievable in children post-HSCT. In the future, larger studies should determine if skeletal muscle function is associated with exercise capacity in children post-HSCT.

ACS Style

Sarah L. West; Gillian White; Jessica E. Caterini; Tammy Rayner; Tal Schechter; Paul C. Nathan; Greg D. Wells. Skeletal Muscle Dysfunction and Exercise Intolerance in Children Treated with Haematopoietic Stem Cell Transplant-A Pilot Feasibility Study. International Journal of Environmental Research and Public Health 2019, 16, 1608 .

AMA Style

Sarah L. West, Gillian White, Jessica E. Caterini, Tammy Rayner, Tal Schechter, Paul C. Nathan, Greg D. Wells. Skeletal Muscle Dysfunction and Exercise Intolerance in Children Treated with Haematopoietic Stem Cell Transplant-A Pilot Feasibility Study. International Journal of Environmental Research and Public Health. 2019; 16 (9):1608.

Chicago/Turabian Style

Sarah L. West; Gillian White; Jessica E. Caterini; Tammy Rayner; Tal Schechter; Paul C. Nathan; Greg D. Wells. 2019. "Skeletal Muscle Dysfunction and Exercise Intolerance in Children Treated with Haematopoietic Stem Cell Transplant-A Pilot Feasibility Study." International Journal of Environmental Research and Public Health 16, no. 9: 1608.

Chapter
Published: 10 April 2019 in Non-Hodgkin's Lymphoma in Childhood and Adolescence
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Excellent survival outcomes in children and adolescents with non-Hodgkin lymphoma (NHL) have led to an increased focus on long-term outcomes in survivors. The evolution of NHL treatment strategies has been guided by efforts to reduce exposure to treatment modalities associated with risk for late effects, such as cranial radiation and higher doses of anthracyclines and alkylating agents, while maintaining or improving survival outcomes. Despite these efforts, many survivors of NHL will suffer long-term physical, psychological, neurocognitive, or psychosocial impacts of their cancer and its treatment or will die prematurely. Specific late effects of therapy include subsequent cancers, cardiac disease, and impaired fertility. As a consequence, all survivors of NHL require lifelong care adapted to their specific risks. This includes provision of a treatment summary and survivor care plan, regular surveillance for late effects, and access to appropriate medical and psychological services, with the goal of maximizing both health and health-related quality of life.

ACS Style

Paul C. Nathan; Karin P. S. Langenberg-Ververgaert; Noelle Cullinan. Long-Term Outcomes in Survivors of Childhood and Adolescent Non-Hodgkin Lymphoma. Non-Hodgkin's Lymphoma in Childhood and Adolescence 2019, 353 -366.

AMA Style

Paul C. Nathan, Karin P. S. Langenberg-Ververgaert, Noelle Cullinan. Long-Term Outcomes in Survivors of Childhood and Adolescent Non-Hodgkin Lymphoma. Non-Hodgkin's Lymphoma in Childhood and Adolescence. 2019; ():353-366.

Chicago/Turabian Style

Paul C. Nathan; Karin P. S. Langenberg-Ververgaert; Noelle Cullinan. 2019. "Long-Term Outcomes in Survivors of Childhood and Adolescent Non-Hodgkin Lymphoma." Non-Hodgkin's Lymphoma in Childhood and Adolescence , no. : 353-366.

Meta analysis
Published: 28 February 2019 in Pediatric Blood & Cancer
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Background For parents, a diagnosis of cancer in their child is a traumatic experience. However, there is conflicting evidence about the risk of developing mental illness among parents following diagnosis. Our objective was to conduct a meta‐analysis to determine the prevalence of mental illness in parents of children with cancer. Methods Four databases were searched to identify articles describing the prevalence of anxiety, depression, or posttraumatic stress disorder (PTSD) in parents of pediatric cancer patients. Two reviewers independently screened and extracted data. Subgroup analyses by gender and phase of cancer experience were selected a priori. Studies were reviewed in accordance with PRISMA guidelines. Results Of 11 394 articles identified, 58 met inclusion criteria. Reported prevalence was highly heterogeneous, ranging from 5% to 65% for anxiety (pooled prevalence 21% [95% CI, 13%–35%]), 7% to 91% for depression (pooled prevalence 28% [95% CI, 23%–35%]), and 4% to 75% for PTSD (pooled prevalence 26% [95% CI, 22%–32%]). Prevalence was consistently higher than noncancer parental controls. Heterogeneity was not explained by parental gender or child's cancer phase and was instead likely due to significant methodological differences in measurement tools and defined thresholds. Conclusions Parents of children with cancer have a higher prevalence of anxiety, depression, and PTSD compared with population controls. Yet, the reported prevalence of mental illness was highly variable, hampering any conclusive findings on absolute prevalence. To better understand the risk of long‐term mental illness in this population and target interventions, future studies must adhere to standardized reporting and methods.

ACS Style

Jacqui van Warmerdam; Veda Zabih; Paul Kurdyak; Rinku Sutradhar; Paul C. Nathan; Sumit Gupta. Prevalence of anxiety, depression, and posttraumatic stress disorder in parents of children with cancer: A meta‐analysis. Pediatric Blood & Cancer 2019, 66, e27677 .

AMA Style

Jacqui van Warmerdam, Veda Zabih, Paul Kurdyak, Rinku Sutradhar, Paul C. Nathan, Sumit Gupta. Prevalence of anxiety, depression, and posttraumatic stress disorder in parents of children with cancer: A meta‐analysis. Pediatric Blood & Cancer. 2019; 66 (6):e27677.

Chicago/Turabian Style

Jacqui van Warmerdam; Veda Zabih; Paul Kurdyak; Rinku Sutradhar; Paul C. Nathan; Sumit Gupta. 2019. "Prevalence of anxiety, depression, and posttraumatic stress disorder in parents of children with cancer: A meta‐analysis." Pediatric Blood & Cancer 66, no. 6: e27677.

Review
Published: 28 February 2019 in Pediatric Blood & Cancer
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Adolescents and young adults (AYA) with cancer are an understudied group. Much of what is known about long‐term outcomes after AYA cancer has been derived from cohorts of childhood cancer survivors, which seldom include patients at the older end of the AYA age spectrum. In general, AYA cancer survivors have a lower risk for premature mortality, subsequent primary neoplasms and chronic health conditions than childhood cancer survivors. However, AYA cancer survivors are vulnerable to psychosocial challenges, concerns about fertility and relationships and financial toxicity. No single model is optimal for the care of these survivors, but it is generally agreed that all survivors require a survivor care plan that promotes their adherence to evidence‐based surveillance guidelines. There is a need to create survivor cohorts that include the full range of AYA ages and diagnoses to be able to address the many pressing questions that remain unanswered in this vulnerable population.

ACS Style

Miranda M. Fidler; Clare Frobisher; Michael M. Hawkins; Paul C. Nathan. Challenges and opportunities in the care of survivors of adolescent and young adult cancers. Pediatric Blood & Cancer 2019, 66, e27668 .

AMA Style

Miranda M. Fidler, Clare Frobisher, Michael M. Hawkins, Paul C. Nathan. Challenges and opportunities in the care of survivors of adolescent and young adult cancers. Pediatric Blood & Cancer. 2019; 66 (6):e27668.

Chicago/Turabian Style

Miranda M. Fidler; Clare Frobisher; Michael M. Hawkins; Paul C. Nathan. 2019. "Challenges and opportunities in the care of survivors of adolescent and young adult cancers." Pediatric Blood & Cancer 66, no. 6: e27668.

Multicenter study
Published: 01 January 2019 in European Journal of Cancer
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Although paediatric astrocytoma has an excellent 5-year survival rate, survivors remain at risk for morbidity and late mortality. This study aimed to estimate the risk of late mortality, chronic conditions, poor health status and social impairment in ageing paediatric astrocytoma survivors. We longitudinally evaluated 1182 5-year astrocytoma survivors diagnosed between 1970 and 1986 and 4023 siblings enrolled in a retrospective cohort study. Kaplan–Meier estimates of late mortality and cumulative incidence of serious chronic conditions were estimated. Cox regression models provided hazard ratios (HRs) with 95% confidence intervals (CIs) for development of chronic conditions, and generalised linear models provided relative risks (RRs) of the poor health status and social outcomes. At 30 years from diagnosis, cumulative late mortality was 22.1% (CI 20.0–24.3%), primarily due to disease progression or recurrence. Compared with siblings, survivors were at increased risk of serious chronic conditions (HR 4.6, CI 3.8–5.5). Survivors reported higher rates of poor general health (RR 3.3, CI 2.8–3.8), poor mental health (RR 1.9, CI 1.7–2.1), functional impairment (RR 9.0, CI 7.7–10.5) and activity limitation (RR 3.6, CI 3.1–4.2) and lower rates of college graduation (RR 0.75, CI 0.69–0.82), marriage (RR 0.62, CI 0.58–0.66), employment (RR 0.75, CI 0.72–0.79) and household income ≥$40,000 (RR 0.68, CI 0.64–0.73). Even survivors without radiation exposure had elevated risk of chronic conditions, poor health status and social impairment compared with siblings. Survivors of paediatric astrocytoma are at high risk for long-term complications of their disease and its treatment. They require lifelong monitoring for late effects.

ACS Style

Karen E. Effinger; Kayla L. Stratton; Paul Graham Fisher; Kirsten K. Ness; Kevin R. Krull; Kevin C. Oeffinger; Gregory T. Armstrong; Leslie L. Robison; Melissa M. Hudson; Wendy M. Leisenring; Paul C. Nathan. Long-term health and social function in adult survivors of paediatric astrocytoma: A report from the Childhood Cancer Survivor Study. European Journal of Cancer 2019, 106, 171 -180.

AMA Style

Karen E. Effinger, Kayla L. Stratton, Paul Graham Fisher, Kirsten K. Ness, Kevin R. Krull, Kevin C. Oeffinger, Gregory T. Armstrong, Leslie L. Robison, Melissa M. Hudson, Wendy M. Leisenring, Paul C. Nathan. Long-term health and social function in adult survivors of paediatric astrocytoma: A report from the Childhood Cancer Survivor Study. European Journal of Cancer. 2019; 106 ():171-180.

Chicago/Turabian Style

Karen E. Effinger; Kayla L. Stratton; Paul Graham Fisher; Kirsten K. Ness; Kevin R. Krull; Kevin C. Oeffinger; Gregory T. Armstrong; Leslie L. Robison; Melissa M. Hudson; Wendy M. Leisenring; Paul C. Nathan. 2019. "Long-term health and social function in adult survivors of paediatric astrocytoma: A report from the Childhood Cancer Survivor Study." European Journal of Cancer 106, no. : 171-180.

Journal article
Published: 21 December 2018 in JMIR Cancer
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Pain Squad is an evidence-based, freely available iOS app designed to assess pain in children with cancer. Once research-based technologies such as Pain Squad are validated, it is important to evaluate their performance in natural settings to optimize their real-world clinical use. The objective of this study was to evaluate the implementation effectiveness of Pain Squad in a natural setting. Parents of 149 children with cancer (aged 8-18 years) were contacted to invite their child to participate. Participating children downloaded Pain Squad on their own iOS devices from the Apple App Store and reported their pain using the app twice daily for 1 week. Participants then emailed their pain reports from the app to the research team and completed an online survey on their experiences. Key implementation outcomes included acceptability, appropriateness, cost, feasibility, fidelity, penetration, and sustainability. Of the 149 parents contacted, 16 of their children agreed to participate. More than a third (6/16, 37.5%) of participating children returned their pain reports to the research team. Adherence to the pain assessments was 62.1% (mean 8.7/14 assessments). The 6 children who returned reports rated the app as highly feasible to download and use and rated their overall experience as acceptable. They also reported that they would be willing to sustain their Pain Squad use over several weeks and that they would recommend it to other children with cancer, which suggests that it may have potential for penetration. While Pain Squad was well received by the small number of children who completed the study, user uptake, engagement, and adherence were significant barriers to the implementation of Pain Squad in a natural setting. Implementation studies such as this highlight important challenges and opportunities for promoting the use and uptake of evidence-based technologies by the intended end-users.

ACS Style

Perri R Tutelman; Christine T Chambers; Jennifer N Stinson; Jennifer A Parker; Melanie Barwick; Holly O Witteman; Lindsay Jibb; Hayley C Stinson; Conrad V Fernandez; Paul C Nathan; Fiona Campbell; Karen Irwin; DuWayne Willett; Talya Miron-Shatz; Chirk Jenn Ng. The Implementation Effectiveness of a Freely Available Pediatric Cancer Pain Assessment App: A Pilot Implementation Study. JMIR Cancer 2018, 4, e10280 .

AMA Style

Perri R Tutelman, Christine T Chambers, Jennifer N Stinson, Jennifer A Parker, Melanie Barwick, Holly O Witteman, Lindsay Jibb, Hayley C Stinson, Conrad V Fernandez, Paul C Nathan, Fiona Campbell, Karen Irwin, DuWayne Willett, Talya Miron-Shatz, Chirk Jenn Ng. The Implementation Effectiveness of a Freely Available Pediatric Cancer Pain Assessment App: A Pilot Implementation Study. JMIR Cancer. 2018; 4 (2):e10280.

Chicago/Turabian Style

Perri R Tutelman; Christine T Chambers; Jennifer N Stinson; Jennifer A Parker; Melanie Barwick; Holly O Witteman; Lindsay Jibb; Hayley C Stinson; Conrad V Fernandez; Paul C Nathan; Fiona Campbell; Karen Irwin; DuWayne Willett; Talya Miron-Shatz; Chirk Jenn Ng. 2018. "The Implementation Effectiveness of a Freely Available Pediatric Cancer Pain Assessment App: A Pilot Implementation Study." JMIR Cancer 4, no. 2: e10280.