64 results on '"Mulder, Renée L"'
Search Results
2. Less restrictions in daily life: a clinical practice guideline for children with cancer.
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Stavleu DC, Mulder RL, Kruimer DM, Kremer LCM, Tissing WJE, and Loeffen EAH
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- Humans, Child, Activities of Daily Living, Netherlands, Neoplasms therapy, Quality of Life
- Abstract
Purpose: In current clinical practice, recommendations regarding restrictions in daily life for children with cancer are often lacking or not evidence-based. Critically reviewing the evidence and formulating recommendations are therefore of great importance as social restrictions (e.g., swimming, school attendance, sports) can impair the quality of life of these children severely. Therefore, our aim was to develop a clinical practice guideline for clinicians, children, and their parents regarding social restrictions in children with cancer., Methods: A comprehensive multidisciplinary panel was assembled, comprising 21 professionals and patient representatives. A systematic literature review was performed, including dual appraisal of all citations. The GRADE methodology was used to extract, summarize, and assess the evidence. Multiple in-person meetings were held to rank outcomes, discuss evidence, complete evidence-to-decision frameworks, and formulate recommendations. Final recommendations were unanimously supported by all panel members., Results: Six studies, including 758 children, formed the evidence base for the recommendations. Given the scarcity of the available evidence and various designs of studies in children with cancer, additional evidence was extracted from adult oncology guidelines, and shared expert opinions were utilized. In total, 14 recommendations were formulated of which multiple result in changes in current policy and standard of practice in the Netherlands. Topics covered in this guideline are swimming, having pets, visiting the zoo or farm, performing sports or high-velocity events, attending school or kindergarten, and use of public transport. This guideline is not intended to provide recommendations for patients after end of treatment, for palliative care settings, or for children undergoing a stem cell transplantation., Conclusions: In this clinical practice guideline, we provide recommendations regarding restrictions in daily life in children with cancer. These include evidence-based recommendations and, in the absence of sufficient evidence, recommendations based on expert evidence. With these recommendations, we provide guidance for clinicians, children, and parents and contribute to improving quality of life for children with cancer., (© 2024. The Author(s).)
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- 2024
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3. Barriers, facilitators, and other factors associated with health behaviors in childhood, adolescent, and young adult cancer survivors: A systematic review.
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de Beijer IAE, Bouwman E, Mulder RL, Steensma P, Brown MC, Araújo-Soares V, Balcerek M, Bardi E, Falck Winther J, Frederiksen LE, van Gorp M, Oberti S, van Kalsbeek RJ, Kepak T, Kepakova K, Gsell H, Kienesberger A, van Litsenburg R, Mader L, Michel G, Muraca M, van den Oever SR, van der Pal HJH, Roser K, Skinner R, Stolman I, Uyttebroeck A, Kremer LCM, Loonen J, van Dalen EC, and Pluijm SMF
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- Humans, Adolescent, Young Adult, Adult, Male, Alcohol Drinking epidemiology, Female, Neoplasms psychology, Neoplasms epidemiology, Smoking epidemiology, Smoking adverse effects, Diet, Middle Aged, Child, Cancer Survivors psychology, Health Behavior, Exercise
- Abstract
Background: Healthy behaviors are paramount in preventing long-term adverse health outcomes in childhood, adolescent, and young adult (CAYA) cancer survivors. We systematically reviewed and synthesized existing literature on barriers, facilitators, and other factors associated with health behaviors in this population., Methods: MEDLINE and PsycInfo were searched for qualitative and quantitative studies including survivors aged 16-50 years at study, a cancer diagnosis ≤25 years and ≥2 years post diagnosis. Health behaviors included physical activity, smoking, diet, alcohol consumption, sun exposure, and a combination of these behaviors (defined as health behaviors in general)., Results: Barriers, facilitators, and other factors reported in ≥2 two studies were considered relevant. Out of 4529 studies, 27 were included (n = 31,905 participants). Physical activity was the most frequently examined behavior (n = 12 studies), followed by smoking (n = 7), diet (n = 7), alcohol (n = 4), sun exposure (n = 4), and health behavior in general (n = 4). Relevant barriers to physical activity were fatigue, lack of motivation, time constraints, and current smoking. Relevant facilitators were perceived health benefits and motivation. Influence of the social environment and poor mental health were associated with more smoking, while increased energy was associated with less smoking. No relevant barriers and facilitators were identified for diet, alcohol consumption, and sun exposure. Barriers to healthy behavior in general were unmet information needs and time constraints whereas lifestyle advice, information, and discussions with a healthcare professional facilitated healthy behavior in general. Concerning other factors, women were more likely to be physically inactive, but less likely to drink alcohol and more likely to comply with sun protection recommendations than men. Higher education was associated with more physical activity, and lower education with more smoking., Conclusion: This knowledge can be used as a starting point to develop health behavior interventions, inform lifestyle coaches, and increase awareness among healthcare providers regarding which survivors are most at risk of unhealthy behaviors., (© 2024 The Author(s). Cancer Medicine published by John Wiley & Sons Ltd.)
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- 2024
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4. A Dutch paediatric palliative care guideline: a systematic review and evidence-based recommendations for symptom treatment.
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van Teunenbroek KC, Mulder RL, Ahout IML, Bindels-de Heus KGCB, Delsman-van Gelder CM, Galimont-Collen AFS, de Groot MAR, Heitink-Polle KMJ, Looijestijn J, Mensink MO, Mulder S, Schieving JH, Schouten-van Meeteren AYN, Verheijden JMA, Rippen H, Borggreve BCM, Kremer LCM, Verhagen AAE, and Michiels EMC
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- Humans, Netherlands, Child, Evidence-Based Medicine methods, Evidence-Based Medicine standards, Palliative Care methods, Palliative Care standards, Pediatrics methods, Pediatrics standards
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Background: Children with life-threatening and life-limiting conditions can experience high levels of suffering due to multiple distressing symptoms that result in poor quality of life and increase risk of long-term distress in their family members. High quality symptom treatment is needed for all these children and their families, even more so at the end-of-life. In this paper, we provide evidence-based recommendations for symptom treatment in paediatric palliative patients to optimize care., Methods: A multidisciplinary panel of 56 experts in paediatric palliative care and nine (bereaved) parents was established to develop recommendations on symptom treatment in paediatric palliative care including anxiety and depression, delirium, dyspnoea, haematological symptoms, coughing, skin complaints, nausea and vomiting, neurological symptoms, pain, death rattle, fatigue, paediatric palliative sedation and forgoing hydration and nutrition. Recommendations were based on evidence from a systematic literature search, additional literature sources (such as guidelines), clinical expertise, and patient and family values. We used the GRADE methodology for appraisal of evidence. Parents were included in the guideline panel to ensure the representation of patient and family values., Results: We included a total of 18 studies that reported on the effects of specific (non) pharmacological interventions to treat symptoms in paediatric palliative care. A few of these interventions showed significant improvement in symptom relief. This evidence could only (partly) answer eight out of 27 clinical questions. We included 29 guidelines and two textbooks as additional literature to deal with lack of evidence. In total, we formulated 221 recommendations on symptom treatment in paediatric palliative care based on evidence, additional literature, clinical expertise, and patient and family values., Conclusion: Even though available evidence on symptom-related paediatric palliative care interventions has increased, there still is a paucity of evidence in paediatric palliative care. We urge for international multidisciplinary multi-institutional collaboration to perform high-quality research and contribute to the optimization of symptom relief in palliative care for all children worldwide., (© 2024. The Author(s).)
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- 2024
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5. Recommendations for surveillance of pulmonary dysfunction among childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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Otth M, Kasteler R, Mulder RL, Agrusa J, Armenian SH, Barnea D, Bergeron A, Bhatt NS, Bourke SJ, Constine LS, Goutaki M, Green DM, Hennewig U, Houdouin V, Hudson MM, Kremer L, Latzin P, Ng A, Oeffinger KC, Schindera C, Skinner R, Sommer G, Srinivasan S, Stokes DC, Versluys B, Waespe N, Weiner DJ, Dietz AC, and Kuehni CE
- Abstract
Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of pulmonary dysfunction. Current follow-up care guidelines are discordant. Therefore, the International Late Effects of Childhood Cancer Guideline Harmonization Group established and convened a panel of 33 experts to develop evidence-based surveillance guidelines. We critically reviewed available evidence regarding risk factors for pulmonary dysfunction, types of pulmonary function testing, and timings of surveillance, then we formulated our recommendations. We recommend that CAYA cancer survivors and healthcare providers are aware of reduced pulmonary function risks and pay vigilant attention to potential symptoms of pulmonary dysfunction, especially among survivors treated with allogeneic haematopoietic stem cell transplantation, thoracic radiotherapy, and thoracic surgery. Based on existing limited evidence and current lack of interventions, our panel recommends pulmonary function testing only for symptomatic survivors. Since scarce existing evidence informs our recommendation, we highlight the need for prospective collaborative studies to address pulmonary function knowledge gaps among CAYA cancer survivors., Competing Interests: -AC Dietz is employed by and has equity in Shape Therapeutics, Inc. and was employed by and has equity in bluebird bio, Inc., neither of which provided financial support or oversight of this work.-AB received fees for lectures and/or boards from Astra-Zeneca, Novartis, Enanta paid to her institution as well as travel grants from Boehringer and Astra-Zeneca.-CEK received grants from the Swiss National Science Foundation-MO received research support from the Swiss Pediatric Oncology Society (SPOG)-DJW received grants/contracts from Vertex pharmaceuticals, Cystic Fibrosis Foundation Therapeutic Development Network, payment or honoraria for lectures/presentations by Cystic Fibrosis Foundation and American Board of Pediatrics-GS and RK received support for the present manuscript by Bernische Krebsliga and Lungenliga Bern-LSC received support from University of Alabama for COG Survivorship guidelines, royalties or licenses from Springer and Wolters Kluwer, payment or honoraria for lectures/presentations from the American Society for Hematology and the University of Miami, travel support from the First International Pediatric Cardio-oncology meeting, and participates on the Data Safety Monitoring Board or Advisory Board of the NCI PDQ-MG received a grant from the Swiss National Science Foundation, support for attending meetings and/or travel from the European Respiratory Society, has a leadership role in the BEAT-PCD ERS clinical research collaboration-NW received general research support from CANSEARCH Research Foundation, payment/honoraria and support to attend an international meeting from Swedish Orphan Biovitrum (SOBI), participates on a Data Safety Monitoring Board or Advisory Board from SOBI-PL received grants/contracts from Vertex and OM Pharma, payments or honoraria for lectures/presentations by Vertex, Vifor and OM Pharma, participates on a Data Safety Monitoring Board or Advisory Board from Polyphor, Santhera, Vertex, OM Pharma, Vifor, Sanofi Aventis-UH received a grant and support for attending meetings from the German Childhood Cancer Foundation,, (© 2024 Published by Elsevier Ltd.)
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- 2024
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6. Author Correction: A joint international consensus statement for measuring quality of survival for patients with childhood cancer.
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van Kalsbeek RJ, Hudson MM, Mulder RL, Ehrhardt M, Green DM, Mulrooney DA, Hakkert J, den Hartogh J, Nijenhuis A, van Santen HM, Schouten-van Meeteren AYN, van Tinteren H, Verbruggen LC, Conklin HM, Jacola LM, Webster RT, Partanen M, Kollen WJW, Grootenhuis MA, Pieters R, and Kremer LCM
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- 2024
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7. Author Correction: A joint international consensus statement for measuring quality of survival for patients with childhood cancer.
- Author
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van Kalsbeek RJ, Hudson MM, Mulder RL, Ehrhardt M, Green DM, Mulrooney DA, Hakkert J, den Hartogh J, Nijenhuis A, van Santen HM, Schouten-van Meeteren AYN, van Tinteren H, Verbruggen LC, Conklin HM, Jacola LM, Webster RT, Partanen M, Kollen WJW, Grootenhuis MA, Pieters R, and Kremer LCM
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- 2024
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8. European recommendations for short-term surveillance of health problems in childhood, adolescent and young adult cancer survivors from the end of treatment to 5 years after diagnosis: a PanCare guideline.
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de Beijer IAE, Skinner R, Haupt R, Grabow D, Bardi E, Beccaria A, Nieto AC, Essiaf S, Filbert AL, Gsell H, Kienesberger A, Langer T, McColgan P, Muraca M, Rascon J, Tallone R, Tomasikova Z, Uyttebroeck A, Kremer LCM, van der Pal HJH, and Mulder RL
- Abstract
Purpose: Childhood, adolescent and young adult (CAYA) cancer survivors require ongoing surveillance for health problems from the end of cancer treatment throughout their lives. There is a lack of evidence-based guidelines on optimal surveillance strategies for the period from the end of treatment to 5 years after diagnosis. We aimed to address this gap by developing recommendations for short-term surveillance of health problems based on existing long-term follow-up (LTFU) care guidelines., Methods: The guideline working group, consisting of healthcare professionals, parents and survivor representatives from 10 countries, worked together to identify relevant health problems that may occur in survivors between the end of treatment and 5 years after diagnosis and to develop recommendations for short-term surveillance of health problems. The recommendations were drawn from existing LTFU guidelines and adapted where necessary based on clinical expertise., Results: The working group developed 44 recommendations for short-term surveillance of health problems, which were divided into four categories based on the level of surveillance required: awareness only (n = 11), awareness, history and/or physical examination without surveillance test (n = 15), awareness, history and/or physical examination with potential surveillance test (n = 1) and awareness, history and/or physical examination with surveillance test (n = 17)., Conclusion: The development of a guideline for short-term surveillance of health problems fills a critical gap in survivorship care for CAYA cancer survivors, providing much-needed support immediately after treatment up to 5 years after diagnosis., Implications for Cancer Survivors: This guideline will support healthcare professionals to provide appropriate follow-up care and improve the quality of life of CAYA cancer survivors., (© 2023. The Author(s).)
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- 2023
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9. Palliative care for children: methodology for the development of a national clinical practice guideline.
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van Teunenbroek KC, Kremer LCM, Verhagen AAE, Verheijden JMA, Rippen H, Borggreve BCM, Michiels EMC, and Mulder RL
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- Child, Humans, Decision Making, Shared, Parents psychology, Practice Guidelines as Topic, Advance Care Planning, Palliative Care methods
- Abstract
Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence., Methods: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence., Results: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence., Conclusions: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations., (© 2023. The Author(s).)
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- 2023
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10. A joint international consensus statement for measuring quality of survival for patients with childhood cancer.
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van Kalsbeek RJ, Hudson MM, Mulder RL, Ehrhardt M, Green DM, Mulrooney DA, Hakkert J, den Hartogh J, Nijenhuis A, van Santen HM, Schouten-van Meeteren AYN, van Tinteren H, Verbruggen LC, Conklin HM, Jacola LM, Webster RT, Partanen M, Kollen WJW, Grootenhuis MA, Pieters R, and Kremer LCM
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- Humans, Child, Quality of Life, Delphi Technique, Outcome Assessment, Health Care, Health Personnel, Neoplasms therapy
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The aim of treating childhood cancer remains to cure all. As survival rates improve, long-term health outcomes increasingly define quality of care. The International Childhood Cancer Outcome Project developed a set of core outcomes for most types of childhood cancers involving relevant international stakeholders (survivors; pediatric oncologists; other medical, nursing or paramedical care providers; and psychosocial or neurocognitive care providers) to allow outcome-based evaluation of childhood cancer care. A survey among healthcare providers (n = 87) and online focus groups of survivors (n = 22) resulted in unique candidate outcome lists for 17 types of childhood cancer (five hematological malignancies, four central nervous system tumors and eight solid tumors). In a two-round Delphi survey, 435 healthcare providers from 68 institutions internationally (response rates for round 1, 70-97%; round 2, 65-92%) contributed to the selection of four to eight physical core outcomes (for example, heart failure, subfertility and subsequent neoplasms) and three aspects of quality of life (physical, psychosocial and neurocognitive) per pediatric cancer subtype. Measurement instruments for the core outcomes consist of medical record abstraction, questionnaires and linkage with existing registries. This International Childhood Cancer Core Outcome Set represents outcomes of value to patients, survivors and healthcare providers and can be used to measure institutional progress and benchmark against peers., (© 2023. The Author(s), under exclusive licence to Springer Nature America, Inc.)
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- 2023
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11. Systematic review and updated recommendations for cardiomyopathy surveillance for survivors of childhood, adolescent, and young adult cancer from the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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Ehrhardt MJ, Leerink JM, Mulder RL, Mavinkurve-Groothuis A, Kok W, Nohria A, Nathan PC, Merkx R, de Baat E, Asogwa OA, Skinner R, Wallace H, Lieke Feijen EAM, de Ville de Goyet M, Prasad M, Bárdi E, Pavasovic V, van der Pal H, Fresneau B, Demoor-Goldschmidt C, Hennewig U, Steinberger J, Plummer C, Chen MH, Teske AJ, Haddy N, van Dalen EC, Constine LS, Chow EJ, Levitt G, Hudson MM, Kremer LCM, and Armenian SH
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- Child, Humans, Adolescent, Young Adult, Survivors, Antibiotics, Antineoplastic adverse effects, Mitoxantrone, Neoplasms drug therapy, Neoplasms radiotherapy, Cardiomyopathies chemically induced, Cardiomyopathies diagnosis
- Abstract
Survivors of childhood, adolescent, and young adult cancer, previously treated with anthracycline chemotherapy (including mitoxantrone) or radiotherapy in which the heart was exposed, are at increased risk of cardiomyopathy. Symptomatic cardiomyopathy is typically preceded by a series of gradually progressive, asymptomatic changes in structure and function of the heart that can be ameliorated with treatment, prompting specialist organisations to endorse guidelines on cardiac surveillance in at-risk survivors of cancer. In 2015, the International Late Effects of Childhood Cancer Guideline Harmonization Group compiled these guidelines into a uniform set of recommendations applicable to a broad spectrum of clinical environments with varying resource availabilities. Since then, additional studies have provided insight into dose thresholds associated with a risk of asymptomatic and symptomatic cardiomyopathy, have characterised risk over time, and have established the cost-effectiveness of different surveillance strategies. This systematic Review and guideline provides updated recommendations based on the evidence published up to September, 2020., Competing Interests: Declaration of interests AN reports research support from Amgen; a research contract with Bristol Myers Squibb; consulting fees from AstraZeneca, Boehringer Ingelheim, and Bantam Pharmaceuticals; and participation on a data safety monitoring board for Takeda Oncology. CP reports personal honoraria and expenses for presentation at education meetings from Amgen, Incyte, Ipsen, Novartis, and Servier. LSC reports grant funding from the University of Alabama for the Children's Oncology Group Guidelines, payment or honoraria for lectures or presentations from the American Society of Hematology and the University of Miami, and participation in the National Cancer Institute PDQ Pediatric Oncology Board. EJC is the Principal Investigator on a research grant to his institution from Abbott Laboratories. All other authors declare no competing interests., (Copyright © 2023 Elsevier Ltd. All rights reserved.)
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- 2023
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12. Primary cardioprotection with dexrazoxane in patients with childhood cancer who are expected to receive anthracyclines: recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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de Baat EC, van Dalen EC, Mulder RL, Hudson MM, Ehrhardt MJ, Engels FK, Feijen EAM, Grotenhuis HB, Leerink JM, Kapusta L, Kaspers GJL, Merkx R, Mertens L, Skinner R, Tissing WJE, de Vathaire F, Nathan PC, Kremer LCM, Mavinkurve-Groothuis AMC, and Armenian S
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- Humans, Child, Anthracyclines adverse effects, Cardiotoxicity etiology, Cardiotoxicity prevention & control, Doxorubicin adverse effects, Dexrazoxane therapeutic use, Neoplasms drug therapy, Antineoplastic Agents therapeutic use, Polyketides therapeutic use
- Abstract
Survivors of childhood cancer are at risk of anthracycline-induced cardiotoxicity, which might be prevented by dexrazoxane. However, concerns exist about the safety of dexrazoxane, and little guidance is available on its use in children. To facilitate global consensus, a working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group reviewed the existing literature and used evidence-based methodology to develop a guideline for dexrazoxane administration in children with cancer who are expected to receive anthracyclines. Recommendations were made in consideration of evidence supporting the balance of potential benefits and harms, and clinical judgement by the expert panel. Given the dose-dependent risk of anthracycline-induced cardiotoxicity, we concluded that the benefits of dexrazoxane probably outweigh the risk of subsequent neoplasms when the cumulative doxorubicin or equivalent dose is at least 250 mg/m
2 (moderate recommendation). No recommendation could be formulated for cumulative doxorubicin or equivalent doses of lower than 250 mg/m2 , due to insufficient evidence to determine whether the risk of cardiotoxicity outweighs the possible risk of subsequent neoplasms. Further research is encouraged to determine the long-term efficacy and safety of dexrazoxane in children with cancer., Competing Interests: Declaration of interests We declare no competing interests., (Copyright © 2022 Elsevier Ltd. All rights reserved.)- Published
- 2022
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13. Childhood cancer survivorship care during the COVID-19 pandemic: an international report of practice implications and provider concerns.
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van den Oever SR, Pluijm SMF, Skinner R, Glaser A, Mulder RL, Armenian S, Bardi E, Berger C, Ehrhardt MJ, Gilleland Marchak J, Haeusler GM, Hartogh JD, Hjorth L, Kepak T, Kriviene I, Langer T, Maeda M, Márquez-Vega C, Michel G, Muraca M, Najib M, Nathan PC, Panasiuk A, Prasad M, Roganovic J, Uyttebroeck A, Winther JF, Zadravec Zaletel L, van Dalen EC, van der Pal HJH, Hudson MM, and Kremer LCM
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- Child, Humans, Pandemics, Survivors, Cancer Survivors psychology, Neoplasms psychology, COVID-19 epidemiology
- Abstract
Purpose: Long-term follow-up (LTFU) care is essential to optimise health outcomes in childhood cancer survivors (CCS). We aimed to assess the impact of the COVID-19 pandemic on LTFU services and providers., Methods: A COVID-19 working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) distributed a questionnaire to LTFU service providers in 37 countries across Europe, Asia, North America, Central/South America, and Australia. The questionnaire assessed how care delivery methods changed during the pandemic and respondents' level of worry about the pandemic's impact on LTFU care delivery, their finances, their health, and that of their family and friends., Results: Among 226 institutions, providers from 178 (79%) responded. Shortly after the initial outbreak, 42% of LTFU clinics closed. Restrictions during the pandemic resulted in fewer in-person consultations and an increased use of telemedicine, telephone, and email consultations. The use of a risk assessment to prioritise the method of LTFU consultation for individual CCS increased from 12 to 47%. While respondents anticipated in-person consultations to remain the primary method for LTFU service delivery, they expected significantly increased use of telemedicine and telephone consultations after the pandemic. On average, respondents reported highest levels of worry about psychosocial well-being of survivors., Conclusions: The pandemic necessitated changes in LTFU service delivery, including greater use of virtual LTFU care and risk-stratification to identify CCS that need in-person evaluations., Implications for Cancer Survivors: Increased utilisation of virtual LTFU care and risk stratification is likely to persist post-pandemic., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)
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- 2022
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14. Evaluating the feasibility, effectiveness and costs of implementing person-centred follow-up care for childhood cancer survivors in four European countries: the PanCareFollowUp Care prospective cohort study protocol.
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van Kalsbeek RJ, Korevaar JC, Rijken M, Haupt R, Muraca M, Kepák T, Kepakova K, Blondeel A, Boes S, Frederiksen LE, Essiaf S, Winther JF, Hermens RPMG, Kienesberger A, Loonen JJ, Michel G, Mulder RL, O'Brien KB, van der Pal HJH, Pluijm SMF, Roser K, Skinner R, Renard M, Uyttebroeck A, Follin C, Hjorth L, and Kremer LCM
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- Adult, Child, Humans, Aftercare, Prospective Studies, Feasibility Studies, Longitudinal Studies, Europe, Cancer Survivors, Neoplasms therapy
- Abstract
Introduction: Long-term survival after childhood cancer often comes at the expense of late, adverse health conditions. However, survivorship care is frequently not available for adult survivors in Europe. The PanCareFollowUp Consortium therefore developed the PanCareFollowUp Care Intervention, an innovative person-centred survivorship care model based on experiences in the Netherlands. This paper describes the protocol of the prospective cohort study (Care Study) to evaluate the feasibility and the health economic, clinical and patient-reported outcomes of implementing PanCareFollowUp Care as usual care in four European countries., Methods and Analysis: In this prospective, longitudinal cohort study with at least 6 months of follow-up, 800 childhood cancer survivors will receive the PanCareFollowUp Care Intervention across four study sites in Belgium, Czech Republic, Italy and Sweden, representing different healthcare systems. The PanCareFollowUp Care Intervention will be evaluated according to the Reach, Effectiveness, Adoption, Implementation and Maintenance framework. Clinical and research data are collected through questionnaires, a clinic visit for multiple medical assessments and a follow-up call. The primary outcome is empowerment, assessed with the Health Education Impact Questionnaire. A central data centre will perform quality checks, data cleaning and data validation, and provide support in data analysis. Multilevel models will be used for repeated outcome measures, with subgroup analysis, for example, by study site, attained age, sex or diagnosis., Ethics and Dissemination: This study will be conducted in accordance with the guidelines of Good Clinical Practice and the Declaration of Helsinki. The study protocol has been reviewed and approved by all relevant ethics committees. The evidence and insights gained by this study will be summarised in a Replication Manual, also including the tools required to implement the PanCareFollowUp Care Intervention in other countries. This Replication Manual will become freely available through PanCare and will be disseminated through policy and press releases., Trial Registration Number: Netherlands Trial Register (NL8918; https://www.trialregister.nl/trial/8918)., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY. Published by BMJ.)
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- 2022
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15. Dexrazoxane for preventing or reducing cardiotoxicity in adults and children with cancer receiving anthracyclines.
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de Baat EC, Mulder RL, Armenian S, Feijen EA, Grotenhuis H, Hudson MM, Mavinkurve-Groothuis AM, Kremer LC, and van Dalen EC
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- Adult, Anthracyclines adverse effects, Antibiotics, Antineoplastic adverse effects, Cardiotonic Agents therapeutic use, Cardiotoxicity drug therapy, Cardiotoxicity etiology, Cardiotoxicity prevention & control, Child, Humans, Systematic Reviews as Topic, Dexrazoxane therapeutic use, Heart Failure drug therapy, Leukemia, Myeloid, Acute drug therapy, Polyketides therapeutic use
- Abstract
Background: This review is the third update of a previously published Cochrane Review. The original review, looking at all possible cardioprotective agents, was split and this part now focuses on dexrazoxane only. Anthracyclines are effective chemotherapeutic agents in the treatment of numerous malignancies. Unfortunately, their use is limited by a dose-dependent cardiotoxicity. In an effort to prevent or reduce this cardiotoxicity, different cardioprotective agents have been studied, including dexrazoxane., Objectives: To assess the efficacy of dexrazoxane to prevent or reduce cardiotoxicity and determine possible effects of dexrazoxane on antitumour efficacy, quality of life and toxicities other than cardiac damage in adults and children with cancer receiving anthracyclines when compared to placebo or no additional treatment., Search Methods: We searched CENTRAL, MEDLINE and Embase to May 2021. We also handsearched reference lists, the proceedings of relevant conferences and ongoing trials registers., Selection Criteria: Randomised controlled trials (RCTs) in which dexrazoxane was compared to no additional therapy or placebo in adults and children with cancer receiving anthracyclines., Data Collection and Analysis: Two review authors independently performed study selection, data extraction, risk of bias and GRADE assessment of included studies. We analysed results in adults and children separately. We performed analyses according to the Cochrane Handbook for Systematic Reviews of Interventions., Main Results: For this update, we identified 548 unique records. We included three additional RCTs: two paediatric and one adult. Therefore, we included a total of 13 eligible RCTs (five paediatric and eight adult). The studies enrolled 1252 children with leukaemia, lymphoma or a solid tumour and 1269 participants, who were mostly diagnosed with breast cancer. In adults, moderate-quality evidence showed that there was less clinical heart failure with the use of dexrazoxane (risk ratio (RR) 0.22, 95% confidence interval (CI) 0.11 to 0.43; 7 studies, 1221 adults). In children, we identified no difference in clinical heart failure risk between treatment groups (RR 0.20, 95% CI 0.01 to 4.19; 3 studies, 885 children; low-quality evidence). In three paediatric studies assessing cardiomyopathy/heart failure as the primary cause of death, none of the children had this outcome (1008 children, low-quality evidence). In the adult studies, different definitions for subclinical myocardial dysfunction and clinical heart failure combined were used, but pooled analyses were possible: there was a benefit in favour of the use of dexrazoxane (RR 0.37, 95% CI 0.24 to 0.56; 3 studies, 417 adults and RR 0.46, 95% CI 0.33 to 0.66; 2 studies, 534 adults, respectively, moderate-quality evidence). In the paediatric studies, definitions of subclinical myocardial dysfunction and clinical heart failure combined were incomparable, making pooling impossible. One paediatric study showed a benefit in favour of dexrazoxane (RR 0.33, 95% CI 0.13 to 0.85; 33 children; low-quality evidence), whereas another study showed no difference between treatment groups (Fischer exact P = 0.12; 537 children; very low-quality evidence). Overall survival (OS) was reported in adults and overall mortality in children. The meta-analyses of both outcomes showed no difference between treatment groups (hazard ratio (HR) 1.04, 95% 0.88 to 1.23; 4 studies; moderate-quality evidence; and HR 1.01, 95% CI 0.72 to 1.42; 3 studies, 1008 children; low-quality evidence, respectively). Progression-free survival (PFS) was only reported in adults. We subdivided PFS into three analyses based on the comparability of definitions, and identified a longer PFS in favour of dexrazoxane in one study (HR 0.62, 95% CI 0.43 to 0.90; 164 adults; low-quality evidence). There was no difference between treatment groups in the other two analyses (HR 0.95, 95% CI 0.64 to 1.40; 1 study; low-quality evidence; and HR 1.18, 95% CI 0.97 to 1.43; 2 studies; moderate-quality evidence, respectively). In adults, there was no difference in tumour response rate between treatment groups (RR 0.91, 95% CI 0.79 to 1.04; 6 studies, 956 adults; moderate-quality evidence). We subdivided tumour response rate in children into two analyses based on the comparability of definitions, and identified no difference between treatment groups (RR 1.01, 95% CI 0.95 to 1.07; 1 study, 206 children; very low-quality evidence; and RR 0.92, 95% CI 0.84 to 1.01; 1 study, 200 children; low-quality evidence, respectively). The occurrence of secondary malignant neoplasms (SMN) was only assessed in children. The available and worst-case analyses were identical and showed a difference in favour of the control group (RR 3.08, 95% CI 1.13 to 8.38; 3 studies, 1015 children; low-quality evidence). In the best-case analysis, the direction of effect was the same, but there was no difference between treatment groups (RR 2.51, 95% CI 0.96 to 6.53; 4 studies, 1220 children; low-quality evidence). For other adverse effects, results also varied. None of the studies evaluated quality of life. If not reported, the number of participants for an analysis was unclear., Authors' Conclusions: Our meta-analyses showed the efficacy of dexrazoxane in preventing or reducing cardiotoxicity in adults treated with anthracyclines. In children, there was a difference between treatment groups for one cardiac outcome (i.e. for one of the definitions used for clinical heart failure and subclinical myocardial dysfunction combined) in favour of dexrazoxane. In adults, no evidence of a negative effect on tumour response rate, OS and PFS was identified; and in children, no evidence of a negative effect on tumour response rate and overall mortality was identified. The results for adverse effects varied. In children, dexrazoxane may be associated with a higher risk of SMN; in adults this was not addressed. In adults, the quality of the evidence ranged between moderate and low; in children, it ranged between low and very low. Before definitive conclusions on the use of dexrazoxane can be made, especially in children, more high-quality research is needed. We conclude that if the risk of cardiac damage is expected to be high, it might be justified to use dexrazoxane in children and adults with cancer who are treated with anthracyclines. However, clinicians and patients should weigh the cardioprotective effect of dexrazoxane against the possible risk of adverse effects, including SMN, for each individual. For children, the International Late Effects of Childhood Cancer Guideline Harmonization Group has developed a clinical practice guideline., (Copyright © 2022 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.)
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16. Recommendations for the surveillance of education and employment outcomes in survivors of childhood, adolescent, and young adult cancer: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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Devine KA, Christen S, Mulder RL, Brown MC, Ingerski LM, Mader L, Potter EJ, Sleurs C, Viola AS, Waern S, Constine LS, Hudson MM, Kremer LCM, Skinner R, Michel G, Gilleland Marchak J, and Schulte FSM
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- Adolescent, Adult, Child, Disease Progression, Educational Status, Employment, Humans, Practice Guidelines as Topic, Quality of Life, Survivors, Young Adult, Central Nervous System Neoplasms, Neoplasms epidemiology, Neoplasms therapy
- Abstract
Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult (CAYA) cancer. This review is aimed at providing an evidence-based clinical practice guideline (CPG) with internationally harmonized recommendations for the surveillance of education and employment outcomes in survivors of CAYA cancer diagnosed before the age of 30 years. The CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of 4 existing CPGs, the authors performed a systematic literature search through February 2021. They screened articles for eligibility, assessed quality, and extracted and summarized the data from included articles. The authors formulated recommendations based on the evidence and clinical judgment. There were 3930 articles identified, and 83 of them, originating from 17 countries, were included. On a group level, survivors were more likely to have lower educational achievement and more likely to be unemployed than comparisons. Key risk factors for poor outcomes included receiving a primary diagnosis of a central nervous system tumor and experiencing late effects. The authors recommend that health care providers be aware of the risk of educational and employment problems, implement regular surveillance, and refer survivors to specialists if problems are identified. In conclusion, this review presents a harmonized CPG that aims to facilitate evidence-based care, positively influence education and employment outcomes, and ultimately minimize the burden of disease and treatment-related late adverse effects for survivors of CAYA cancers. LAY SUMMARY: A multidisciplinary panel has developed guidelines for the surveillance of education and employment outcomes among survivors of childhood, adolescent, and young adult cancer. On the basis of evidence showing that survivors are at risk for lower educational achievement and unemployment, it is recommended that all survivors receive regular screening for educational and employment outcomes., (© 2022 The Authors. Cancer published by Wiley Periodicals LLC on behalf of American Cancer Society.)
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- 2022
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17. Recommendations for the surveillance of mental health problems in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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Marchak JG, Christen S, Mulder RL, Baust K, Blom JMC, Brinkman TM, Elens I, Harju E, Kadan-Lottick NS, Khor JWT, Lemiere J, Recklitis CJ, Wakefield CE, Wiener L, Constine LS, Hudson MM, Kremer LCM, Skinner R, Vetsch J, Lee JL, and Michel G
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- Adolescent, Child, Disease Progression, Humans, Mental Health, Survivors psychology, Young Adult, Cancer Survivors, Neoplasms diagnosis, Neoplasms epidemiology, Neoplasms therapy
- Abstract
Survivors of childhood, adolescent, and young adult (diagnosed when <25 years of age) cancer are at risk of mental health problems. The aim of this clinical practice guideline is to harmonise international recommendations for mental health surveillance in survivors of childhood, adolescent, and young adult cancer. This guideline was developed by a multidisciplinary panel of experts under the sponsorship of the International Guideline Harmonization Group. We evaluated concordance among existing survivorship clinical practice guidelines and conducted a systematic review following evidence-based methods. Of 7249 studies identified, 76 articles from 12 countries met the inclusion criteria. Recommendations were formulated on the basis of identified evidence in combination with clinical considerations. This international clinical practice guideline strongly recommends mental health surveillance for all survivors of childhood, adolescent, and young adult cancers at every follow-up visit and prompt referral to mental health specialists when problems are identified. Overall, the recommendations reflect the necessity of mental health surveillance as part of comprehensive survivor-focused health care., Competing Interests: Declaration of interests We declare no competing interests., (Copyright © 2022 Elsevier Ltd. All rights reserved.)
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- 2022
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18. The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer.
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van Kalsbeek RJ, Mulder RL, Haupt R, Muraca M, Hjorth L, Follin C, Kepak T, Kepakova K, Uyttebroeck A, Mangelschots M, Winther JF, Loonen JJ, Michel G, Bardi E, Elmerdahl Frederiksen L, den Hartogh J, Mader L, Roser K, Schneider C, Brown MC, Brunhofer M, Göttgens I, Hermens RPMG, Kienesberger A, Korevaar JC, Skinner R, van der Pal HJH, and Kremer LCM
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- Adolescent, Humans, Quality of Life, Survivors, Survivorship, Young Adult, Cancer Survivors, Neoplasms therapy
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Background: Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society. The European Union-funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe., Patients and Methods: The PanCareFollowUp Care Intervention was co-developed with survivors as part of the PanCareFollowUp project. It is a person-centred approach to survivorship care, supported by guidelines and with flexibility to adapt to local health care settings. The Care Intervention consists of three steps: (1) previsit completion of a Survivor Questionnaire (by the survivor) and Treatment Summary (by the health care provider [HCP]), (2) a clinic visit including shared decision-making, and (3) a follow-up call to finalise the individualised Survivorship Care Plan., Results: We developed the key components of the PanCareFollowUp Care Intervention: a PanCareFollowUp Survivor Questionnaire, Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the PanCareFollowUp Care Intervention will be supported with a freely distributed Replication Manual on completion of the PanCareFollowUp project., Conclusions: The PanCareFollowUp Care Intervention will support the implementation of person-centred, guideline-based LTFU care in different health care settings across Europe to improve survivors' health and well-being., Competing Interests: Conflict of interest statement The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2021 The Authors. Published by Elsevier Ltd.. All rights reserved.)
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- 2022
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19. Late hepatic toxicity surveillance for survivors of childhood, adolescent and young adult cancer: Recommendations from the international late effects of childhood cancer guideline harmonization group.
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Bardi E, Mulder RL, van Dalen EC, Bhatt NS, Ruble KA, Burgis J, Castellino SM, Constine LS, den Hoed CM, Green DM, Koot BGP, Levitt G, Szonyi L, Wallace WH, Skinner R, Hudson MM, Kremer LCM, Effinger KE, and Bresters D
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- Chemical and Drug Induced Liver Injury diagnosis, Humans, Mass Screening methods, Neoplasms mortality, Radiation Injuries etiology, Cancer Survivors, Liver Diseases diagnosis, Liver Diseases etiology, Neoplasms therapy, Radiation Injuries diagnosis
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Background: Survivors of childhood, adolescent and young adult (CAYA) cancer may develop treatment-induced chronic liver disease. Surveillance guidelines can improve survivors' health outcomes. However, current recommendations vary, leading to uncertainty about optimal screening. The International Late Effects of Childhood Cancer Guideline Harmonization Group has developed recommendations for the surveillance of late hepatotoxicity after CAYA cancer., Methods: Evidence-based methods based on the GRADE framework were used in guideline development. A multidisciplinary guideline panel performed systematic literature reviews, developed evidence summaries, appraised the evidence, and formulated recommendations on the basis of evidence, clinical judgement, and consideration of benefits versus the harms of the surveillance while allowing for flexibility in implementation across different health care systems., Results: The guideline strongly recommends a physical examination and measurement of serum liver enzyme concentrations (ALT, AST, gGT, ALP) once at entry into long-term follow-up for survivors treated with radiotherapy potentially exposing the liver (moderate- to high-quality evidence). For survivors treated with busulfan, thioguanine, mercaptopurine, methotrexate, dactinomycin, hematopoietic stem cell transplantation (HSCT), or hepatic surgery, or with a history of chronic viral hepatitis or sinusoidal obstruction syndrome, similar surveillance for late hepatotoxicity once at entry into LTFU is reasonable (low-quality evidence/expert opinion, moderate recommendation). For survivors who have undergone HSCT and/or received multiple red blood cell transfusions, surveillance for iron overload with serum ferritin is strongly recommended once at long-term follow-up entry., Conclusions: These evidence-based, internationally-harmonized recommendations for the surveillance of late hepatic toxicity in cancer survivors can inform clinical care and guide future research of health outcomes for CAYA cancer survivors., (Copyright © 2021. Published by Elsevier Ltd.)
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- 2021
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20. Coronary artery disease surveillance among childhood, adolescent and young adult cancer survivors: A systematic review and recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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van Dalen EC, Mulder RL, Suh E, Ehrhardt MJ, Aune GJ, Bardi E, Benson BJ, Bergler-Klein J, Chen MH, Frey E, Hennewig U, Lockwood L, Martinsson U, Muraca M, van der Pal H, Plummer C, Scheinemann K, Schindera C, Tonorezos ES, Wallace WH, Constine LS, Skinner R, Hudson MM, Kremer LCM, Levitt G, and Mulrooney DA
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- Adolescent, Adult, Age of Onset, Cardiotoxicity, Child, Child, Preschool, Coronary Artery Disease diagnostic imaging, Female, Humans, Incidence, Male, Middle Aged, Neoplasms epidemiology, Predictive Value of Tests, Prevalence, Prognosis, Radiation Injuries diagnostic imaging, Radiotherapy adverse effects, Risk Assessment, Risk Factors, Time Factors, Young Adult, Antineoplastic Agents adverse effects, Cancer Survivors, Coronary Artery Disease epidemiology, Diagnostic Screening Programs standards, Neoplasms therapy, Radiation Injuries epidemiology
- Abstract
Background: Coronary artery disease (CAD) is a concerning late outcome for cancer survivors. However, uniform surveillance guidelines are lacking., Aim: To harmonise international recommendations for CAD surveillance for survivors of childhood, adolescent and young adult (CAYA) cancers., Methods: A systematic literature review was performed and evidence graded using the Grading of Recommendations, Assessment, Development and Evaluation criteria. Eligibility included English language studies, a minimum of 20 off-therapy cancer survivors assessed for CAD, and 75% diagnosed prior to age 35 years. All study designs were included, and a multidisciplinary guideline panel formulated and graded recommendations., Results: 32 of 522 identified articles met eligibility criteria. The prevalence of CAD ranged from 0 to 72% and was significantly increased compared to control populations. The risk of CAD was increased among survivors who received radiotherapy exposing the heart, especially at doses ≥15 Gy (moderate-quality evidence). The guideline panel agreed that healthcare providers and CAYA cancer survivors treated with radiotherapy exposing the heart should be counselled about the increased risk for premature CAD. While the evidence is insufficient to support primary screening, monitoring and early management of modifiable cardiovascular risk factors are recommended. Initiation and frequency of surveillance should be based on the intensity of treatment exposures, family history, and presence of co-morbidities but at least by age 40 years and at a minimum of every 5 years. All were strong recommendations., Conclusion: These systematically assessed and harmonised recommendations for CAD surveillance will inform care and guide research concerning this critical outcome for CAYA cancer survivors., Competing Interests: Conflict of interest statement None declared., (Copyright © 2021 Elsevier Ltd. All rights reserved.)
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- 2021
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21. Bone mineral density surveillance for childhood, adolescent, and young adult cancer survivors: evidence-based recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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van Atteveld JE, Mulder RL, van den Heuvel-Eibrink MM, Hudson MM, Kremer LCM, Skinner R, Wallace WH, Constine LS, Higham CE, Kaste SC, Niinimäki R, Mostoufi-Moab S, Alos N, Fintini D, Templeton KJ, Ward LM, Frey E, Franceschi R, Pavasovic V, Karol SE, Amin NL, Vrooman LM, Harila-Saari A, Demoor-Goldschmidt C, Murray RD, Bardi E, Lequin MH, Faienza MF, Zaikova O, Berger C, Mora S, Ness KK, Neggers SJCMM, Pluijm SMF, Simmons JH, and Di Iorgi N
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- Adolescent, Adult, Bone Diseases, Metabolic complications, Child, Humans, Risk Factors, Young Adult, Bone Density, Cancer Survivors statistics & numerical data, Epidemiological Monitoring
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Childhood, adolescent, and young adult cancer survivors are at increased risk of reduced bone mineral density. Clinical practice surveillance guidelines are important for timely diagnosis and treatment of these survivors, which could improve bone mineral density parameters and prevent fragility fractures. Discordances across current late effects guidelines necessitated international harmonisation of recommendations for bone mineral density surveillance. The International Late Effects of Childhood Cancer Guideline Harmonization Group therefore established a panel of 36 experts from ten countries, representing a range of relevant medical specialties. The evidence of risk factors for very low and low bone mineral density and fractures, surveillance modality, timing of bone mineral density surveillance, and treatment of very low and low bone mineral density were evaluated and critically appraised, and harmonised recommendations for childhood, adolescent, and young adult cancer survivors were formulated. We graded the recommendations based on the quality of evidence and balance between potential benefits and harms. Bone mineral density surveillance is recommended for survivors treated with cranial or craniospinal radiotherapy and is reasonable for survivors treated with total body irradiation. Due to insufficient evidence, no recommendation can be formulated for or against bone mineral density surveillance for survivors treated with corticosteroids. This surveillance decision should be made by the survivor and health-care provider together, after careful consideration of the potential harms and benefits and additional risk factors. We recommend to carry out bone mineral density surveillance using dual-energy x-ray absorptiometry at entry into long-term follow-up, and if normal (Z-score > -1), repeat when the survivor is aged 25 years. Between these measurements and thereafter, surveillance should be done as clinically indicated. These recommendations facilitate evidence-based care for childhood, adolescent, and young adult cancer survivors internationally., Competing Interests: Declaration of interests LMW received grants and personal fees from Novartis and Amgen (with funds to the Children's Hospital of Eastern Ontario Research Institute). KKN received grants from the National Institutes of Health and the American Lebanese Syrian Associated Charities. All other authors declare no competing interests., (Copyright © 2021 Elsevier Ltd. All rights reserved.)
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- 2021
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22. European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer.
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van Kalsbeek RJ, van der Pal HJH, Kremer LCM, Bardi E, Brown MC, Effeney R, Winther JF, Follin C, den Hartogh J, Haupt R, Hjorth L, Kepak T, Kepakova K, Levitt G, Loonen JJ, Mangelschots M, Muraca M, Renard M, Sabic H, Schneider CU, Uyttebroeck A, Skinner R, and Mulder RL
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- Adolescent, Humans, Quality of Life, Young Adult, Cancer Survivors psychology, Neoplasms therapy, Practice Guidelines as Topic
- Abstract
Background: Long-term follow-up (LTFU) care for childhood, adolescent, and young adult (CAYA) cancer survivors is essential to preserve health and quality of life (QoL). Evidence-based guidelines are needed to inform optimal surveillance strategies, but many topics are yet to be addressed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG). Therefore, the PanCareFollowUp Recommendations Working Group collaborated with stakeholders to develop European harmonised recommendations in anticipation of evidence-based IGHG guidelines., Methods: The PanCareFollowUp Recommendations Working Group, consisting of 23 late effects specialists, researchers, and survivor representatives from nine countries, collaborated in the first Europe-wide effort to provide unified recommendations in anticipation of evidence-based guidelines. A pragmatic methodology was used to define recommendations for topics where no evidence-based IGHG recommendations exist. The objective was to describe the surveillance requirements for high-quality care while balancing the different infrastructures and resources across European health care systems. The process included two face-to-face meetings and an external consultation round involving 18 experts from 14 countries., Results: Twenty-five harmonised recommendations for LTFU care were developed collaboratively and address topics requiring awareness only (n = 6), awareness, history and/or physical examination (n = 9), or additional surveillance tests (n = 10)., Conclusions: The PanCareFollowUp Recommendations, representing a unique agreement across European stakeholders, emphasise awareness among survivors and health care providers in addition to tailored clinical evaluation and/or surveillance tests. They include existing IGHG guidelines and additional recommendations developed by a pragmatic methodology and will be used in the Horizon 2020-funded PanCareFollowUp project to improve health and QoL of CAYA cancer survivors., Competing Interests: Conflict of interest statement The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2021 The Authors. Published by Elsevier Ltd.. All rights reserved.)
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- 2021
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23. The European multistakeholder PanCareFollowUp project: novel, person-centred survivorship care to improve care quality, effectiveness, cost-effectiveness and accessibility for cancer survivors and caregivers.
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van Kalsbeek RJ, van der Pal HJH, Hjorth L, Winther JF, Michel G, Haupt R, Uyttebroeck A, O'Brien K, Kepakova K, Follin C, Muraca M, Kepak T, Araujo-Soares V, Bardi E, Blondeel A, Bouwman E, Brown MC, Frederiksen LE, Essiaf S, Hermens RPMG, Kienesberger A, Korevaar JC, Mader L, Mangelschots M, Mulder RL, van den Oever S, Rijken M, Roser K, Skinner R, Pluijm SMF, Loonen JJ, and Kremer LCM
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- Europe, Humans, Quality of Health Care, Cancer Survivors statistics & numerical data, Caregivers economics, Caregivers psychology, Survivorship
- Abstract
Background: The majority of childhood cancer survivors are at risk of treatment-related adverse health outcomes. Survivorship care to mitigate these late effects is endorsed, but it is not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp project was initiated to improve their health and quality of life (QoL) by facilitating person-centred survivorship care., Methods: The PanCareFollowUp consortium was established in 2018, consisting of 14 project partners from ten European countries, including survivor representatives. The consortium will develop two PanCareFollowUp Interventions, including a person-centred guideline-based model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention). Their development will be informed by several qualitative studies and systematic reviews on barriers and facilitators for implementation and needs and preferences of healthcare providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions, satisfaction among survivors and HCPs, cost-effectiveness and feasibility. The feasibility of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands among 60 survivors., Results: Replication manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle Intervention, will be published and made freely available after the project. Moreover, results of the corresponding studies are expected within the next five years., Conclusions: The PanCareFollowUp project is a novel European collaboration aiming to improve the health and QoL of all survivors across Europe by developing and prospectively evaluating the person-centred PanCareFollowUp Care and Lifestyle Interventions., Competing Interests: Conflict of interest statement The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2021 Elsevier Ltd. All rights reserved.)
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- 2021
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24. Surveillance for subsequent neoplasms of the CNS for childhood, adolescent, and young adult cancer survivors: a systematic review and recommendations from the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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Bowers DC, Verbruggen LC, Kremer LCM, Hudson MM, Skinner R, Constine LS, Sabin ND, Bhangoo R, Haupt R, Hawkins MM, Jenkinson H, Khan RB, Klimo P Jr, Pretorius P, Ng A, Reulen RC, Ronckers CM, Sadighi Z, Scheinemann K, Schouten-van Meeteren N, Sugden E, Teepen JC, Ullrich NJ, Walter A, Wallace WH, Oeffinger KC, Armstrong GT, van der Pal HJH, and Mulder RL
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- Adolescent, Central Nervous System Neoplasms diagnosis, Child, Early Detection of Cancer, Humans, Young Adult, Cancer Survivors, Central Nervous System Neoplasms etiology, Practice Guidelines as Topic
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Exposure to cranial radiotherapy is associated with an increased risk of subsequent CNS neoplasms among childhood, adolescent, and young adult (CAYA) cancer survivors. Surveillance for subsequent neoplasms can translate into early diagnoses and interventions that could improve cancer survivors' health and quality of life. The practice guideline presented here by the International Late Effects of Childhood Cancer Guideline Harmonization Group was developed with an evidence-based method that entailed the gathering and appraisal of published evidence associated with subsequent CNS neoplasms among CAYA cancer survivors. The preparation of these guidelines showed a paucity of high-quality evidence and highlighted the need for additional research to inform survivorship care. The recommendations are based on careful consideration of the evidence supporting the benefits, risks, and harms of the surveillance interventions, clinical judgment regarding individual patient circumstances, and the need to maintain flexibility of application across different health-care systems. Currently, there is insufficient evidence to establish whether early detection of subsequent CNS neoplasms reduces morbidity and mortality, and therefore no recommendation can be formulated for or against routine MRI surveillance. The decision to start surveillance should be made by the CAYA cancer survivor and health-care provider after careful consideration of the potential harms and benefits of surveillance for CNS neoplasms, including meningioma., Competing Interests: Declaration of interests We declare no competing interests., (Copyright © 2021 Elsevier Ltd. All rights reserved.)
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- 2021
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25. Communication and ethical considerations for fertility preservation for patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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Mulder RL, Font-Gonzalez A, van Dulmen-den Broeder E, Quinn GP, Ginsberg JP, Loeffen EAH, Hudson MM, Burns KC, van Santen HM, Berger C, Diesch T, Dirksen U, Giwercman A, Gracia C, Hunter SE, Kelvin JF, Klosky JL, Laven JSE, Lockart BA, Neggers SJCMM, Peate M, Phillips B, Reed DR, Tinner EME, Byrne J, Veening M, van de Berg M, Verhaak CM, Anazodo A, Rodriguez-Wallberg K, van den Heuvel-Eibrink MM, Asogwa OA, Brownsdon A, Wallace WH, Green DM, Skinner R, Haupt R, Kenney LB, Levine J, van de Wetering MD, Tissing WJE, Paul NW, Kremer LCM, and Inthorn J
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- Adolescent, Adult, Child, Disease Progression, Female, Fertility Preservation trends, Humans, Male, Neoplasms complications, Neoplasms pathology, Neoplasms therapy, Young Adult, Cancer Survivors, Fertility Preservation ethics, Guidelines as Topic, Neoplasms epidemiology
- Abstract
Patients with childhood, adolescent, and young adult cancer who will be treated with gonadotoxic therapies are at increased risk for infertility. Many patients and their families desire biological children but effective communication about treatment-related infertility risk and procedures for fertility preservation does not always happen. The PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group reviewed the literature and developed a clinical practice guideline that provides recommendations for ongoing communication methods for fertility preservation for patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger and their families. Moreover, the guideline panel formulated considerations of the ethical implications that are associated with these procedures. Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the evidence and recommendations. In this clinical practice guideline, existing evidence and international expertise are combined to develop transparent recommendations that are easy to use to facilitate ongoing communication between health-care providers and patients with childhood, adolescent, and young adult cancer who might be at high risk for fertility impairment and their families., (Copyright © 2021 Elsevier Ltd. All rights reserved.)
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- 2021
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26. Fertility preservation for female patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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Mulder RL, Font-Gonzalez A, Hudson MM, van Santen HM, Loeffen EAH, Burns KC, Quinn GP, van Dulmen-den Broeder E, Byrne J, Haupt R, Wallace WH, van den Heuvel-Eibrink MM, Anazodo A, Anderson RA, Barnbrock A, Beck JD, Bos AME, Demeestere I, Denzer C, Di Iorgi N, Hoefgen HR, Kebudi R, Lambalk C, Langer T, Meacham LR, Rodriguez-Wallberg K, Stern C, Stutz-Grunder E, van Dorp W, Veening M, Veldkamp S, van der Meulen E, Constine LS, Kenney LB, van de Wetering MD, Kremer LCM, Levine J, and Tissing WJE
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- Adolescent, Adult, Child, Female, Guidelines as Topic, Humans, Neoplasms complications, Neoplasms pathology, Risk Assessment, Young Adult, Cancer Survivors, Fertility Preservation trends, Neoplasms epidemiology, Neoplasms therapy
- Abstract
Female patients with childhood, adolescent, and young adult cancer are at increased risk for fertility impairment when treatment adversely affects the function of reproductive organs. Patients and their families desire biological children but substantial variations in clinical practice guidelines reduce consistent and timely implementation of effective interventions for fertility preservation across institutions. As part of the PanCareLIFE Consortium, and in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group, we reviewed the current literature and developed a clinical practice guideline for fertility preservation in female patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger, including guidance on risk assessment and available methods for fertility preservation. The Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the available evidence and to form the recommendations. This clinical practice guideline leverages existing evidence and international expertise to develop transparent recommendations that are easy to use to facilitate the care of female patients with childhood, adolescent, and young adult cancer who are at high risk for fertility impairment. A complete review of the existing evidence, including a quality assessment, transparent reporting of the guideline panel's decisions, and achievement of global interdisciplinary consensus, is an important result of this intensive collaboration., (Copyright © 2021 Elsevier Ltd. All rights reserved.)
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- 2021
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27. Fertility preservation for male patients with childhood, adolescent, and young adult cancer: recommendations from the PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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Mulder RL, Font-Gonzalez A, Green DM, Loeffen EAH, Hudson MM, Loonen J, Yu R, Ginsberg JP, Mitchell RT, Byrne J, Skinner R, Anazodo A, Constine LS, de Vries A, Jahnukainen K, Lorenzo A, Meissner A, Nahata L, Dinkelman-Smit M, Tournaye H, Haupt R, van den Heuvel-Eibrink MM, van Santen HM, van Pelt AMM, Dirksen U, den Hartogh J, van Dulmen-den Broeder E, Wallace WH, Levine J, Tissing WJE, Kremer LCM, Kenney LB, and van de Wetering MD
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- Adolescent, Adult, Cancer Survivors, Child, Guidelines as Topic, Humans, Male, Neoplasms complications, Neoplasms pathology, Risk Assessment, Young Adult, Fertility Preservation trends, Neoplasms epidemiology, Neoplasms therapy
- Abstract
Male patients with childhood, adolescent, and young adult cancer are at an increased risk for infertility if their treatment adversely affects reproductive organ function. Future fertility is a primary concern of patients and their families. Variations in clinical practice are barriers to the timely implementation of interventions that preserve fertility. As part of the PanCareLIFE Consortium, in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group, we reviewed the current literature and developed a clinical practice guideline for fertility preservation in male patients who are diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger, including guidance on risk assessment and available methods for fertility preservation. The Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the available evidence and to form the recommendations. Recognising the need for global consensus, this clinical practice guideline used existing evidence and international expertise to rigorously develop transparent recommendations that are easy to use to facilitate the care of male patients with childhood, adolescent, and young adult cancer who are at high risk of fertility impairment and to enhance their quality of life., (Copyright © 2021 Elsevier Ltd. All rights reserved.)
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- 2021
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28. The Concept of Cancer Survivorship and Models for Long-Term Follow-Up.
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van Kalsbeek RJ, Mulder RL, Skinner R, and Kremer LCM
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- Adolescent, Female, Follow-Up Studies, Humans, Male, Quality of Life, Young Adult, Bone Diseases, Metabolic, Cancer Survivors psychology, Neoplasms
- Abstract
With improved survival of childhood, adolescent, and young adult (CAYA) cancer, the European survivor population of 300,000-500,000 continues to expand. Most survivors will experience at least one and often multiple cancer- and treatment-related late effects throughout their lives, including endocrine toxicities. Besides affecting their physical and psychosocial health status, these might reduce life expectancy and quality of life. Prevalent endocrine complications include hypothalamic-pituitary dysfunction, central precocious puberty, primary thyroid, male or female gonadal dysfunction, metabolic syndrome, and low bone mineral density. Long-term follow-up (LTFU) care, including education, risk-based prevention, and surveillance strategies, is essential to reduce the burden of endocrine complications and to allow for timely interventions. To integrate scientific expert knowledge, evidence-based clinical practice guidelines have been developed by the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) and PanCare. These guide LTFU care by describing risk populations and preferred surveillance modalities. Moreover, consensus-based recommendations have been developed by PanCareFollowUp where evidence-based guidance is still awaited. The PanCareSurFup models of care guidelines recommend multidisciplinary team care at or under guidance of a cancer survivorship expert center, so CAYA cancer survivors receive appropriate care and support to optimize health., (© 2021 S. Karger AG, Basel.)
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- 2021
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29. Updated Breast Cancer Surveillance Recommendations for Female Survivors of Childhood, Adolescent, and Young Adult Cancer From the International Guideline Harmonization Group.
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Mulder RL, Hudson MM, Bhatia S, Landier W, Levitt G, Constine LS, Wallace WH, van Leeuwen FE, Ronckers CM, Henderson TO, Moskowitz CS, Friedman DN, Ng AK, Jenkinson HC, Demoor-Goldschmidt C, Skinner R, Kremer LCM, and Oeffinger KC
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- Early Detection of Cancer methods, Female, Humans, Population Surveillance methods, Practice Guidelines as Topic, Systematic Reviews as Topic, Breast Neoplasms diagnosis, Cancer Survivors
- Abstract
Purpose: As new evidence is available, the International Late Effects of Childhood Cancer Guideline Harmonization Group has updated breast cancer surveillance recommendations for female survivors of childhood, adolescent, and young adult cancer., Methods: We used evidence-based methods to apply new knowledge in refining the international harmonized recommendations developed in 2013. The guideline panel updated the systematic literature review, developed evidence summaries, appraised the evidence, and updated recommendations on the basis of evidence, clinical judgement, and consideration of benefits versus the harms of the surveillance interventions while attaining flexibility in implementation across different health care systems. The GRADE Evidence-to-Decision framework was used to translate evidence to recommendations. A survivor information form was developed to counsel survivors about the potential harms and benefits of surveillance., Results: The literature update identified new study findings related to the effects of prescribed moderate-dose chest radiation (10 to 19 Gy), radiation dose-volume, anthracyclines and alkylating agents in non-chest irradiated survivors, and the effects of ovarian function on breast cancer risk. Moreover, new data from prospective investigations were available regarding the performance metrics of mammography and magnetic resonance imaging among survivors of Hodgkin lymphoma. Modified recommendations include the performance of mammography and breast magnetic resonance imaging for survivors treated with 10 Gy or greater chest radiation (strong recommendation) and upper abdominal radiation exposing breast tissue at a young age (moderate recommendation) at least annually up to age 60 years. As a result of inconsistent evidence, no recommendation could be formulated for routine breast cancer surveillance for survivors treated with any type of anthracyclines in the absence of chest radiation., Conclusion: The newly identified evidence prompted significant change to the recommendations formulated in 2013 related to moderate-dose chest radiation and anthracycline exposure as well as breast cancer surveillance modality.
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- 2020
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30. 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.
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Verbruggen LC, Wang Y, Armenian SH, Ehrhardt MJ, van der Pal HJH, van Dalen EC, van As JW, Bardi E, Baust K, Berger C, Castagnola E, Devine KA, Gebauer J, Marchak JG, Glaser AW, Groll AH, Haeusler GM, den Hartogh J, Haupt R, Hjorth L, Kato M, Kepák T, Koopman MMWR, Langer T, Maeda M, Michel G, Muraca M, Nathan PC, van den Oever SR, Pavasovic V, Sato S, Schulte F, Sung L, Tissing W, Uyttebroeck A, Mulder RL, Kuehni C, Skinner R, Hudson MM, and Kremer LCM
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- Adolescent, Adult, COVID-19, Child, Child, Preschool, Coronavirus Infections epidemiology, Coronavirus Infections transmission, Female, Humans, Male, Neoplasms epidemiology, Pneumonia, Viral epidemiology, Pneumonia, Viral transmission, Practice Guidelines as Topic, SARS-CoV-2, Young Adult, Betacoronavirus, Cancer Survivors, Coronavirus Infections prevention & control, Coronavirus Infections therapy, Neoplasms therapy, Pandemics prevention & control, Pneumonia, Viral prevention & control, Pneumonia, Viral therapy
- Abstract
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., (© 2020 Wiley Periodicals LLC.)
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- 2020
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31. Recommendations for the surveillance of cancer-related fatigue in childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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Christen S, Roser K, Mulder RL, Ilic A, Lie HC, Loonen JJ, Mellblom AV, Kremer LCM, Hudson MM, Constine LS, Skinner R, Scheinemann K, Gilleland Marchak J, and Michel G
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- Adolescent, Adult, Cancer Survivors, Child, Disease Progression, Fatigue etiology, Female, Humans, Male, Meta-Analysis as Topic, Population Surveillance, Quality of Life, Young Adult, Delivery of Health Care standards, Fatigue diagnosis, Mass Screening standards, Neoplasms complications, Practice Guidelines as Topic standards, Practice Patterns, Physicians' standards
- Abstract
Purpose: Cancer-related fatigue (CRF) negatively affects the lives of childhood, adolescent, and young adult (CAYA) cancer survivors. We aimed to provide an evidence-based clinical practice guideline (CPG) with internationally harmonized CRF surveillance recommendations for CAYA cancer survivors diagnosed < 30 years., Methods: This CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of four existing CPGs, we performed systematic literature searches. We screened articles for eligibility, assessed quality, extracted, and summarized the data from included articles. We formulated recommendations based on the evidence and clinical judgment., Results: Of 3647 articles identified, 70 articles from 14 countries were included. The prevalence of CRF in CAYA cancer survivors ranged from 10-85%. We recommend that healthcare providers are aware of the risk of CRF, implement regular screening with validated measures, and recommend effective interventions to fatigued survivors., Conclusions: A considerable proportion of CAYA cancer survivors suffers from CRF even years after the end of treatment., Implications for Cancer Survivors: We recommend that healthcare providers adopt regular screening to detect and treat CRF early and positively influence survivors' health and quality of life.
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- 2020
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32. The Critical Role of Clinical Practice Guidelines and Indicators in High-Quality Survivorship After Childhood Cancer.
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Mulder RL, van Kalsbeek RJ, Hudson MM, Skinner R, and Kremer LCM
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- Evidence-Based Medicine, Humans, Population Surveillance, Quality of Health Care, Cancer Survivors, Continuity of Patient Care standards, Neoplasms therapy, Practice Guidelines as Topic
- Abstract
Childhood cancer survivors are at significant risk for late cancer treatment-related morbidity and mortality. Physicians involved in the care of childhood cancer survivors should be aware of these specific health problems and provide high-quality, long-term follow-up care to preserve and improve survivors' health. The steps required to achieve high-quality care include synthesizing evidence (systematic reviews are helpful in this regard), developing clinical policy from evidence into evidence-based clinical practice guidelines, disseminating and implementing clinical practice guidelines, and evaluating their impact on quality of care and survivor health outcomes with quality indicators. This article describes these cornerstones of evidence-based medicine., Competing Interests: Disclosure The authors have no conflicts of interest relevant to this article to disclose., (Copyright © 2020 Elsevier Inc. All rights reserved.)
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- 2020
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33. Large variation in assessment and outcome definitions to describe the burden of long-term morbidity in childhood cancer survivors: A systematic review.
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Streefkerk N, Fioole LCE, Beijer JGM, Feijen ELAM, Teepen JC, Winther JF, Ronckers CM, Loonen JJ, van Dulmen-den Broeder E, Skinner R, Hudson MM, Tissing WJE, Korevaar JC, Mulder RL, and Kremer LCM
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- Child, Humans, Morbidity, Neoplasms epidemiology, Cancer Survivors statistics & numerical data, Cost of Illness, Neoplasms therapy, Outcome Assessment, Health Care statistics & numerical data
- Abstract
We systematically reviewed outcome assessment methods, outcome classification, and severity grading of reported outcomes in studies investigating the burden of physical long-term morbidity in childhood cancer survivors (CCS). A MEDLINE and EMBASE search identified 56 studies reporting on three or more types of health conditions in 5-year CCS, for which information was extracted on outcome types and classification, methods of outcome ascertainment, and severity grading. There was substantial variability in classification and types of health conditions reported and in methods of outcome ascertainment. Only 59% of the included studies applied severity grading, mainly the common terminology criteria of adverse events. This large variation in assessment and definition of the burden of physical long-term morbidity in CCS challenges interpretation, comparison, and pooling data across studies. Global collaboration is needed to standardize assessments and harmonize definitions of long-term physical morbidity and associated outcomes in childhood cancer survivorship research., (© 2020 Wiley Periodicals LLC.)
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- 2020
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34. The Dutch LATER physical outcomes set for self-reported data in survivors of childhood cancer.
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Streefkerk N, Tissing WJE, van der Heiden-van der Loo M, Lieke Feijen EAM, van Dulmen-den Broeder E, Loonen JJ, van der Pal HJH, Ronckers CM, van Santen HM, van den Berg MH, Mulder RL, Korevaar JC, and Kremer LCM
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- Child, Humans, Morbidity, Surveys and Questionnaires, Cancer Survivors statistics & numerical data, Neoplasms therapy, Patient Reported Outcome Measures, Self Report
- Abstract
Purposes: Studies investigating self-reported long-term morbidity in childhood cancer survivors (CCS) are using heterogeneous outcome definitions, which compromises comparability and include (un)treated asymptomatic and symptomatic outcomes. We generated a Dutch LATER core set of clinically relevant physical outcomes, based on self-reported data. Clinically relevant outcomes were defined as outcomes associated with clinical symptoms or requiring medical treatment., Methods: First, we generated a draft outcome set based on existing questionnaires embedded in the Childhood Cancer Survivor Study, British Childhood Cancer Survivor Study, and Dutch LATER study. We added specific outcomes reported by survivors in the Dutch LATER questionnaire. Second, we selected a list of clinical relevant outcomes by agreement among a Dutch LATER experts team. Third, we compared the proposed clinically relevant outcomes to the severity grading of the Common Terminology Criteria for Adverse Events (CTCAE)., Results: A core set of 74 self-reported long-term clinically relevant physical morbidity outcomes was established. Comparison to the CTCAE showed that 36% of these clinically relevant outcomes were missing in the CTCAE., Implications for Cancer Survivors: This proposed core outcome set of clinical relevant outcomes for self-reported data will be used to investigate the self-reported morbidity in the Dutch LATER study. Furthermore, this Dutch LATER outcome set can be used as a starting point for international harmonization for long-term outcomes in survivors of childhood cancer.
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- 2020
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35. Reducing pain and distress related to needle procedures in children with cancer: A clinical practice guideline.
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Loeffen EAH, Mulder RL, Font-Gonzalez A, Leroy PLJM, Dick BD, Taddio A, Ljungman G, Jibb LA, Tutelman PR, Liossi C, Twycross A, Positano K, Knops RR, Wijnen M, van de Wetering MD, Kremer LCM, Dupuis LL, Campbell F, and Tissing WJE
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- Age Factors, Child, Evidence-Based Medicine methods, Evidence-Based Medicine standards, Humans, Injections adverse effects, Injections psychology, Medical Oncology methods, Medical Oncology standards, Neoplasms psychology, Pain, Procedural etiology, Pain, Procedural psychology, Quality of Life, Randomized Controlled Trials as Topic, Stress, Psychological etiology, Antineoplastic Agents administration & dosage, Needles adverse effects, Neoplasms drug therapy, Pain, Procedural prevention & control, Stress, Psychological prevention & control
- Abstract
Background: Children with cancer often undergo long treatment trajectories involving repeated needle procedures that potentially cause pain and distress. As part of a comprehensive effort to develop clinical practice guidelines (CPGs) to address pain prevention and management in children with cancer, we aimed to provide recommendations on the pharmacological and psychological management of procedure-related pain and distress., Methods: Of the international inter-disciplinary CPG development panel (44 individuals), two working groups including 13 healthcare professionals focused on procedural pain and distress. Grading of Recommendations Assessment, Development and Evaluation methodology was used, including the use of systematic literature reviews to inform recommendations and the use of evidence to decision frameworks. At an in-person meeting in February 2018, the guideline panel discussed these frameworks and formulated recommendations which were then discussed with a patient-parent panel consisting of 4 survivors and 5 parents., Results: The systematic reviews led to the inclusion of 48 randomised controlled trials (total number of participants = 2271). Quality of evidence supporting the recommendations ranged from very low to moderate. Strong recommendations were made for the use of topical anesthetics in all needle procedures, for offering deep sedation (DS)/general anesthesia (GA) to all children undergoing lumbar puncture, for the use of DS/ GA in major procedures in children of all ages, for the use of hypnosis in all needle procedures and for the use of active distraction in all needle procedures., Conclusion: In this CPG, an evidence-based approach to manage procedure-related pain and distress in children with cancer is presented. As children with cancer often undergo repeated needle procedures during treatment, prevention and alleviation of procedure-related pain and distress is of the utmost importance to increase quality of life in these children and their families., Competing Interests: Conflict of interest statement The authors have no conflicts of interest relevant to this article to disclose., (Copyright © 2020 The Authors. Published by Elsevier Ltd.. All rights reserved.)
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- 2020
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36. Variations in screening and management practices for subsequent asymptomatic meningiomas in childhood, adolescent and young adult cancer survivors.
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Verbruggen LC, Hudson MM, Bowers DC, Ronckers CM, Armstrong GT, Skinner R, Hoving EW, Janssens GO, van der Pal HJH, Kremer LCM, and Mulder RL
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- Adolescent, Adult, Child, Disease Management, Female, Follow-Up Studies, Humans, Male, Meningeal Neoplasms pathology, Meningioma pathology, Prognosis, Survival Rate, Young Adult, Cancer Survivors statistics & numerical data, Delivery of Health Care statistics & numerical data, Early Detection of Cancer statistics & numerical data, Meningeal Neoplasms diagnosis, Meningeal Neoplasms therapy, Meningioma diagnosis, Meningioma therapy
- Abstract
Introduction: Childhood, adolescent and young adult (CAYA) cancer survivors treated with cranial radiotherapy are at risk for developing subsequent meningiomas. There is insufficient evidence concerning the benefits and harms of screening for subsequent meningiomas, and uncertainty about the most appropriate clinical management of asymptomatic meningiomas. Data describing current clinical decision-making is essential to formulate surveillance recommendations., Methods: We created an online survey to identify the current international clinical practice regarding screening for and management of subsequent asymptomatic meningiomas among CAYA cancer survivors. Fifty-nine physicians from North America and Europe with expertise relevant to meningiomas were invited to participate., Results: Thirty-four physicians (58%) completed the survey. The reported number of CAYA cancer survivors that physicians are willing to screen to detect one meningioma varied widely from 0 to 750 (median 50). Physicians expressed concerns regarding harms from MRI screening, including risks of unnecessary interventions (n = 25, 73%) and overdiagnosis (n = 19, 56%). Growth pattern (n = 33, 97%), location (n = 31, 91%) and size (n = 29, 85%) were endorsed as the most important factors influencing the decision to treat asymptomatic meningiomas. A challenging location (n = 14, 52%), indolent tumor growth pattern (n = 13, 48%), and absence of symptoms (n = 12, 44%) were endorsed as the main reasons to monitor without intervention., Conclusions: There is international variation in opinions and clinical practice regarding screening for subsequent asymptomatic meningiomas among at risk CAYA cancer survivors. Decision-making regarding interventions of asymptomatic meningiomas are largely driven by clinical characteristics. These valuable insights into current clinical practice will inform surveillance guidelines for CAYA cancer survivors.
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- 2020
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37. Evidence-based recommendations for the organization of long-term follow-up care for childhood and adolescent cancer survivors: a report from the PanCareSurFup Guidelines Working Group.
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Michel G, Mulder RL, van der Pal HJH, Skinner R, Bárdi E, Brown MC, Vetsch J, Frey E, Windsor R, Kremer LCM, and Levitt G
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- Adolescent, Age of Onset, Child, Disease Progression, Follow-Up Studies, Humans, Neoplasms epidemiology, Neoplasms psychology, Palliative Care methods, Practice Guidelines as Topic, Societies, Medical standards, Young Adult, Cancer Survivors psychology, Long-Term Care methods, Long-Term Care standards, Neoplasms therapy, Palliative Care standards
- Abstract
Purpose: To facilitate the implementation of long-term follow-up (LTFU) care and improve equality of care for childhood, adolescent, and young adult (CAYA) cancer survivors, the PanCareSurFup Guidelines Working Group developed evidence-based recommendations for the organization of LTFU., Methods: We established an international multidisciplinary guideline panel. A systematic review of the literature published from 1999 to 2017 was completed to answer six clinical questions. The guideline panel reviewed the identified studies, developed evidence summaries, appraised the quality of the body of evidence, and formulated recommendations based on the evidence, expert opinions, and the need to maintain flexibility of application across different healthcare systems., Results: We provide strong recommendations based on low level evidence and expert opinions, regarding organization of LTFU care, personnel involved in LTFU care, components of LTFU care and start of LTFU care. We recommend that risk-adapted LTFU care provided under the guidance of a cancer survivorship expert service or cancer centre should be available and accessible for all CAYA cancer survivors throughout their lifespan., Conclusion: Despite the weak levels of evidence, successful and effective implementation of these recommendations should improve LTFU, thereby leading to better access to appropriate healthcare services and an improvement in health outcomes for CAYA cancer survivors., Implications for Cancer Survivors: To improve health outcomes and quality of survivorship of current and future survivors, continued age-adapted education of survivors about the cancer, its treatment, risk of late effects, importance of health behaviours, and necessity of LTFU is important along the cancer and survivorship trajectory.
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- 2019
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38. Reducing pain in children with cancer: Methodology for the development of a clinical practice guideline.
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Loeffen EAH, Kremer LCM, van de Wetering MD, Mulder RL, Font-Gonzalez A, Dupuis LL, Campbell F, and Tissing WJE
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- Child, Humans, Pain etiology, Prognosis, Evidence-Based Medicine, Neoplasms complications, Pain prevention & control, Pain Management methods, Practice Guidelines as Topic standards
- Abstract
Although pain is one of the most prevalent and bothersome symptoms children with cancer experience, evidence-based guidance regarding assessment and management is lacking. With 44 international, multidisciplinary healthcare professionals and nine patient representatives, we aimed to develop a clinical practice guideline (following GRADE methodology), addressing assessment and pharmacological, psychological, and physical management of tumor-, treatment-, and procedure-related pain in children with cancer. In this paper, we present our thorough methodology for this development, including the challenges we faced and how we approached these. This lays the foundation for our clinical practice guideline, for which there is a high clinical demand., (© 2019 The Authors. Pediatric Blood & Cancer Published by Wiley Periodicals, Inc.)
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- 2019
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39. Hepatic late adverse effects after antineoplastic treatment for childhood cancer.
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Mulder RL, Bresters D, Van den Hof M, Koot BG, Castellino SM, Loke YKK, Post PN, Postma A, Szőnyi LP, Levitt GA, Bardi E, Skinner R, and van Dalen EC
- Subjects
- Adolescent, Alanine Transaminase metabolism, Antineoplastic Agents therapeutic use, Child, Child, Preschool, Humans, Infant, Liver Diseases, gamma-Glutamyltransferase metabolism, Antineoplastic Agents adverse effects, Chemical and Drug Induced Liver Injury, Neoplasms drug therapy, Neoplasms radiotherapy, Radiotherapy adverse effects
- Abstract
Background: Survival rates have greatly improved as a result of more effective treatments for childhood cancer. Unfortunately, the improved prognosis has been accompanied by the occurrence of late, treatment-related complications. Liver complications are common during and soon after treatment for childhood cancer. However, among long-term childhood cancer survivors, the risk of hepatic late adverse effects is largely unknown. To make informed decisions about future cancer treatment and follow-up policies, it is important to know the risk of, and associated risk factors for, hepatic late adverse effects. This review is an update of a previously published Cochrane review., Objectives: To evaluate all the existing evidence on the association between antineoplastic treatment (that is, chemotherapy, radiotherapy involving the liver, surgery involving the liver and BMT) for childhood cancer and hepatic late adverse effects., Search Methods: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (The Cochrane Library 2018, Issue 1), MEDLINE (1966 to January 2018) and Embase (1980 to January 2018). In addition, we searched reference lists of relevant articles and scanned the conference proceedings of the International Society of Paediatric Oncology (SIOP) (from 2005 to 2017) and American Society of Pediatric Hematology/Oncology (ASPHO) (from 2013 to 2018) electronically., Selection Criteria: All studies, except case reports, case series, and studies including fewer than 10 patients that examined the association between antineoplastic treatment for childhood cancer (aged 18 years or less at diagnosis) and hepatic late adverse effects (one year or more after the end of treatment)., Data Collection and Analysis: Two review authors independently performed the study selection and 'risk of bias' assessment. The 'risk of bias' assessment was based on earlier checklists for observational studies. For the original version of the review, two review authors independently performed data extraction. For the update of the review, the data extraction was performed by one reviewer and checked by another reviewer., Main Results: Thirteen new studies were identified for the update of this review. In total, we included 33 cohort studies including 7876 participants investigating hepatic late adverse effects after antineoplastic treatment (especially chemotherapy and radiotherapy) for different types of childhood cancer, both haematological and solid malignancies. All studies had methodological limitations. The prevalence of hepatic late adverse effects, all defined in a biochemical way, varied widely, between 0% and 84.2%. Selecting studies where the outcome of hepatic late adverse effects was well-defined as alanine aminotransferase (ALT) above the upper limit of normal, indicating cellular liver injury, resulted in eight studies. In this subgroup, the prevalence of hepatic late adverse effects ranged from 5.8% to 52.8%, with median follow-up durations varying from three to 23 years since cancer diagnosis in studies that reported the median follow-up duration. A more stringent selection process using the outcome definition of ALT as above twice the upper limit of normal, resulted in five studies, with a prevalence ranging from 0.9% to 44.8%. One study investigated biliary tract injury, defined as gamma-glutamyltransferase (γGT) above the upper limit of normal and above twice the upper limit of normal and reported a prevalence of 5.3% and 0.9%, respectively. Three studies investigated disturbance in biliary function, defined as bilirubin above the upper limit of normal and reported prevalences ranging from 0% to 8.7%. Two studies showed that treatment with radiotherapy involving the liver (especially after a high percentage of the liver irradiated), higher BMI, and longer follow-up time or older age at evaluation increased the risk of cellular liver injury in multivariable analyses. In addition, there was some suggestion that busulfan, thioguanine, hepatic surgery, chronic viral hepatitis C, metabolic syndrome, use of statins, non-Hispanic white ethnicity, and higher alcohol intake (> 14 units per week) increase the risk of cellular liver injury in multivariable analyses. Chronic viral hepatitis was shown to increase the risk of cellular liver injury in six univariable analyses as well. Moreover, one study showed that treatment with radiotherapy involving the liver, higher BMI, higher alcohol intake (> 14 units per week), longer follow-up time, and older age at cancer diagnosis increased the risk of biliary tract injury in a multivariable analysis., Authors' Conclusions: The prevalence of hepatic late adverse effects among studies with an adequate outcome definition varied considerably from 1% to 53%. Evidence suggests that radiotherapy involving the liver, higher BMI, chronic viral hepatitis and longer follow-up time or older age at follow-up increase the risk of hepatic late adverse effects. In addition, there may be a suggestion that busulfan, thioguanine, hepatic surgery, higher alcohol intake (>14 units per week), metabolic syndrome, use of statins, non-Hispanic white ethnicity, and older age at cancer diagnosis increase the risk of hepatic late adverse effects. High-quality studies are needed to evaluate the effects of different therapy doses, time trends, and associated risk factors after antineoplastic treatment for childhood cancer.
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- 2019
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40. Measurement properties of instruments to assess pain in children and adolescents with cancer: a systematic review protocol.
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Loeffen EAH, Stinson JN, Birnie KA, van Dijk M, Kulkarni K, Rijsdijk M, Font-Gonzalez A, Dupuis LL, van Dalen EC, Mulder RL, Campbell F, Tissing WJE, van de Wetering MD, and Gibson F
- Subjects
- Adolescent, Child, Child, Preschool, Humans, Infant, Infant, Newborn, Pain Measurement methods, Research Design, Cancer Pain diagnosis, Neoplasms physiopathology, Systematic Reviews as Topic
- Abstract
Background: Pain in children and adolescents with cancer has been identified as an area where many healthcare professionals seek guidance. This protocol details a systematic review whose aim is to explore current knowledge regarding measurement instruments to assess pain (and pain-related distress) in children and adolescents with cancer. After completion of the review, the information will be used in the development of a clinical practice guideline., Methods: We will search four electronic databases (MEDLINE via PubMed, CINAHL, PsycINFO and HaPI). Additional relevant studies will be identified by reference checking and expert consultation. All citations will be screened independently by two reviewers in a three-step approach: first selection based on title, second selection based on abstract, third selection based on full-text. Studies in children and adolescents with cancer that aimed to evaluate the clinimetric properties of an existing pain measurement instrument or to develop a new pain measurement instrument and that include at least one relevant outcome (reliability, validity, responsiveness, interpretability, clinical utility) are eligible for inclusion. For all steps of evidence selection, a detailed list with eligibility criteria will be determined a priori. Data extraction and quality assessment of included studies (according to the COnsensus-based Standards for the selection of health Measurement INstruments, COSMIN criteria) will be conducted independently by two authors., Discussion: This systematic review will provide an overview of the current literature regarding measurement instruments to assess pain in children and adolescents with cancer. This knowledge synthesis will be used to formulate recommendations for clinical practice. Also, by synthesizing existing evidence, knowledge gaps will be identified., Systematic Review Registration: PROSPERO CRD42017072879.
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- 2019
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41. Recommendations for ototoxicity surveillance for childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group in collaboration with the PanCare Consortium.
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Clemens E, van den Heuvel-Eibrink MM, Mulder RL, Kremer LCM, Hudson MM, Skinner R, Constine LS, Bass JK, Kuehni CE, Langer T, van Dalen EC, Bardi E, Bonne NX, Brock PR, Brooks B, Carleton B, Caron E, Chang KW, Johnston K, Knight K, Nathan PC, Orgel E, Prasad PK, Rottenberg J, Scheinemann K, de Vries ACH, Walwyn T, Weiss A, Am Zehnhoff-Dinnesen A, Cohn RJ, and Landier W
- Subjects
- Adolescent, Antineoplastic Agents therapeutic use, Child, Cranial Irradiation adverse effects, Evidence-Based Medicine, Humans, Neoplasms radiotherapy, Ototoxicity etiology, Ototoxicity therapy, Platinum Compounds adverse effects, Population Surveillance, Young Adult, Antineoplastic Agents adverse effects, Cancer Survivors statistics & numerical data, Delivery of Health Care standards, Neoplasms drug therapy, Ototoxicity diagnosis, Ototoxicity prevention & control
- Abstract
Childhood, adolescent, and young adult (CAYA) cancer survivors treated with platinum-based drugs, head or brain radiotherapy, or both have an increased risk of ototoxicity (hearing loss, tinnitus, or both). To ensure optimal care and reduce consequent problems-such as speech and language, social-emotional development, and learning difficulties-for these CAYA cancer survivors, clinical practice guidelines for monitoring ototoxicity are essential. The implementation of surveillance across clinical settings is hindered by differences in definitions of hearing loss, recommendations for surveillance modalities, and remediation. To address these deficiencies, the International Guideline Harmonization Group organised an international multidisciplinary panel, including 32 experts from ten countries, to evaluate the quality of evidence for ototoxicity following platinum-based chemotherapy and head or brain radiotherapy, and formulate and harmonise ototoxicity surveillance recommendations for CAYA cancer survivors., (Copyright © 2019 Elsevier Ltd. All rights reserved.)
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- 2019
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42. Surveillance for Late Effects in Childhood Cancer Survivors.
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Landier W, Skinner R, Wallace WH, Hjorth L, Mulder RL, Wong FL, Yasui Y, Bhakta N, Constine LS, Bhatia S, Kremer LC, and Hudson MM
- Subjects
- Child, Humans, Mass Screening methods, Morbidity, Neoplasms mortality, Neoplasms therapy, Practice Guidelines as Topic, Quality of Life, Cancer Survivors, Neoplasms complications
- Abstract
Many childhood cancer survivors carry a significant risk for late morbidity and mortality, a consequence of the numerous therapeutic exposures that contribute to their cure. Focused surveillance for late therapy-related complications provides opportunities for early detection and implementation of health-preserving interventions. The substantial body of research that links therapeutic exposures used during treatment of childhood cancer to adverse outcomes among survivors enables the characterization of groups at the highest risk for developing complications related to specific therapies; however, methods available to optimize screening strategies to detect these therapy-related complications are limited. Moreover, the feasibility of conducting clinical trials to test screening recommendations for childhood cancer survivors is limited by requirements for large sample sizes, lengthy study periods, prohibitive costs, and ethical concerns. In addition, the harms of screening should be considered, including overdiagnosis and psychological distress. Experts in several countries have developed guideline recommendations for late effects surveillance and have collaborated to harmonize these recommendations internationally to enhance long-term follow-up care and quality of life for childhood cancer survivors. Methods used in these international efforts include systematic literature searches, development of evidence-based summaries, rigorous evaluation of the evidence, and formulation of consensus-based surveillance recommendations for each late complication. Alternate methods to refine recommendations, such as cumulative burden assessment and risk prediction and cost-effectiveness modeling, may provide novel approaches to guide survivorship care in this vulnerable population and, thus, represents a worthy objective for future international survivorship collaborations.
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- 2018
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43. The duration of anthracycline infusion should be at least one hour in children with cancer: A clinical practice guideline.
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Loeffen EAH, van Dalen EC, Mulder RL, van de Wetering MD, Kremer LCM, and Tissing WJE
- Subjects
- Adolescent, Anthracyclines adverse effects, Child, Child, Preschool, Female, Humans, Infant, Male, Time Factors, Anthracyclines administration & dosage, Neoplasms drug therapy
- Abstract
We aimed to provide recommendations on the infusion duration of anthracycline chemotherapy agents in children with cancer. This study also serves as a practice example of the essential steps that need to be taken when using a previously published systematic review to develop a high-quality clinical practice guideline. Although evidence was scarce and included adult studies, the panel was able (using the Grading of Recommendations Assessment, Development and Evaluation evidence-to-decision framework) to recommend in favor of an anthracycline infusion duration of at least 1 hr (strong recommendation, very low to moderate quality of evidence). Recommending a precise optimal prolonged infusion duration was currently not possible., (© 2017 Wiley Periodicals, Inc.)
- Published
- 2018
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44. Recommendations for Premature Ovarian Insufficiency Surveillance for Female Survivors of Childhood, Adolescent, and Young Adult Cancer: A Report From the International Late Effects of Childhood Cancer Guideline Harmonization Group in Collaboration With the PanCareSurFup Consortium.
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van Dorp W, Mulder RL, Kremer LC, Hudson MM, van den Heuvel-Eibrink MM, van den Berg MH, Levine JM, van Dulmen-den Broeder E, di Iorgi N, Albanese A, Armenian SH, Bhatia S, Constine LS, Corrias A, Deans R, Dirksen U, Gracia CR, Hjorth L, Kroon L, Lambalk CB, Landier W, Levitt G, Leiper A, Meacham L, Mussa A, Neggers SJ, Oeffinger KC, Revelli A, van Santen HM, Skinner R, Toogood A, Wallace WH, and Haupt R
- Subjects
- Adolescent, Adult, Antineoplastic Agents, Alkylating administration & dosage, Antineoplastic Agents, Alkylating adverse effects, Child, Female, Humans, Neoplasms drug therapy, Neoplasms radiotherapy, Young Adult, Primary Ovarian Insufficiency diagnosis, Primary Ovarian Insufficiency etiology, Survivors
- Abstract
Purpose: Female survivors of childhood, adolescent, and young adult (CAYA) cancer who were treated with alkylating agents and/or radiation, with potential exposure of the ovaries, have an increased risk of premature ovarian insufficiency (POI). Clinical practice guidelines can facilitate these survivors' access to optimal treatment of late effects that may improve health and quality of survival; however, surveillance recommendations vary among the existing long-term follow-up guidelines, which impedes the implementation of screening., Patients and Methods: The present guideline was developed by using an evidence-based approach and summarizes harmonized POI surveillance recommendations for female survivors of CAYA cancer who were diagnosed at age < 25 years. The recommendations were formulated by an international multidisciplinary panel and graded according to the strength of the evidence and the potential benefit gained from early detection and intervention. The harmonized POI surveillance recommendations were developed by using a transparent process and are intended to facilitate care for survivors of CAYA cancer., Results and Conclusion: The harmonized set of POI surveillance recommendations is intended to be scientifically rigorous, to positively influence health outcomes, and to facilitate the care for female survivors of CAYA cancer., (© 2016 by American Society of Clinical Oncology.)
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- 2016
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45. Fertility preservation in children, adolescents, and young adults with cancer: Quality of clinical practice guidelines and variations in recommendations.
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Font-Gonzalez A, Mulder RL, Loeffen EA, Byrne J, van Dulmen-den Broeder E, van den Heuvel-Eibrink MM, Hudson MM, Kenney LB, Levine JM, Tissing WJ, van de Wetering MD, and Kremer LC
- Subjects
- Adolescent, Child, Clinical Decision-Making, Disease Management, Female, Humans, Male, Neoplasms diagnosis, Neoplasms therapy, Practice Guidelines as Topic, Quality of Health Care, Sex Factors, Young Adult, Fertility Preservation, Neoplasms epidemiology
- Abstract
Background: Fertility preservation care for children, adolescents, and young adults (CAYAs) with cancer is not uniform among practitioners. To ensure high-quality care, evidence-based clinical practice guidelines (CPGs) are essential. The authors identified existing CPGs for fertility preservation in CAYAs with cancer, evaluated their quality, and explored differences in recommendations., Methods: A systematic search in PubMed (January 2000-October 2014); guideline databases; and Web sites of oncology, pediatric, and fertility organizations was performed. Two reviewers evaluated the quality of the identified CPGs using the Appraisal of Guidelines for Research and Evaluation II Instrument (AGREE II). From high-quality CPGs, the authors evaluated concordant and discordant areas among the recommendations., Results: A total of 25 CPGs regarding fertility preservation were identified. The average AGREE II domain scores (scale of 0%-100%) varied from 15% on applicability to 100% on clarity of presentation. The authors considered 8 CPGs (32%) to be of high quality, which was defined as scores ≥60% in any 4 domains. Large variations in the recommendations of the high-quality CPGs were observed, with 87.2% and 88.6%, respectively, of discordant guideline areas among the fertility preservation recommendations for female and male patients with cancer., Conclusions: Only approximately one-third of the identified CPGs were found to be of sufficient quality. Of these CPGs, the fertility preservation recommendations varied substantially, which can be a reflection of inadequate evidence for specific recommendations, thereby hindering the ability of providers to deliver high-quality care. CPGs including a transparent decision process for fertility preservation can help health care providers to deliver optimal and uniform care, thus improving the quality of life of CAYAs with cancer and cancer survivors. Cancer 2016;122:2216-23. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society., (© 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.)
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- 2016
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46. Low bacterial diet versus control diet to prevent infection in cancer patients treated with chemotherapy causing episodes of neutropenia.
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van Dalen EC, Mank A, Leclercq E, Mulder RL, Davies M, Kersten MJ, and van de Wetering MD
- Subjects
- Anti-Bacterial Agents therapeutic use, Antifungal Agents therapeutic use, Fever diet therapy, Humans, Neutropenia chemically induced, Randomized Controlled Trials as Topic, Antineoplastic Agents adverse effects, Bacterial Infections prevention & control, Mycoses prevention & control, Neoplasms drug therapy, Neutropenia diet therapy
- Abstract
Background: Neutropenia is a potentially serious side effect of chemotherapy and a major risk factor for infection, which can be life-threatening. It has been hypothesised that a low bacterial diet (LBD) can prevent infection and (infection-related) mortality in cancer patients receiving chemotherapy that causes episodes of neutropenia, but much remains unclear. This review is an update of a previously published Cochrane review., Objectives: The primary objective of this review was to determine the efficacy of an LBD versus a control diet in preventing infection and in decreasing (infection-related) mortality in adult and paediatric cancer patients receiving chemotherapy that causes episodes of neutropenia. Secondary objectives were to assess time to first febrile episode, need for empirical antibiotic therapy, diet acceptability and quality of life., Search Methods: We searched the following electronic databases: the Cochrane Central Register of Controlled Trials (CENTRAL) (2015, Issue 4), the Database of Abstracts of Reviews of Effects (DARE) (2015, Issue 4), PubMed (from 1946 to 4 May 2015), EMBASE (from 1980 to 4 May 2015) and the Cumulative Index to Nursing and Allied Health Literature (CINAHL) (from 1981 to 4 May 2015).In addition, we searched the reference lists of relevant articles and conference proceedings of American Society of Hematology (ASH; from 2000 to 2015), European Bone Marrow Transplantation (EBMT; from 2000 to 2015), Oncology Nurses Society (ONS; from 2000 to 2015), International Society for Paediatric Oncology (SIOP; from 2000 to 2014), Multinational Association of Supportive Care in Cancer (MASCC; from 2000 to 2015), American Society of Clinical Oncology (ASCO; from 2000 to 2015), Interscience Conference of Antimicrobial Agents and Chemotherapy (ICAAC; from 2000 to 2015), European Society for Clinical Nutrition and Metabolism (ESPEN; from 2000 to 2015), American Society for Parenteral and Enteral Nutrition (ASPEN; from 2000 to 2015) and European Hematology Association (EHA; from 2000 to 2015). In May 2015, we scanned the National Institutes of Health Register via clinicaltrials.gov and the International Standard Randomised Controlled Trial Number (ISRCTN) Register (www.controlled-trials.com)., Selection Criteria: Randomised controlled trials (RCTs) comparing use of an LBD versus a control diet with regard to infection rate, (infection-related) mortality, time to first febrile episode, need for empirical antibiotic therapy, diet acceptability and quality of life in adult and paediatric cancer patients receiving chemotherapy causing episodes of neutropenia., Data Collection and Analysis: Two review authors independently performed study selection, 'Risk of bias' assessment and data extraction. We performed analyses according to the guidelines of the Cochrane Handbook for Systematic Reviews of Interventions., Main Results: In the original version of this review, we identified three RCTs that assessed different intervention and control diets in 192 participants (97 randomised to intervention diet; 95 to control diet) with different types of malignancies. For the update, we identified no eligible new studies. Co-interventions (e.g. protective environment, antimicrobial prophylaxis, central venous catheter care, oral care, hygiene practices, colony-stimulating factors) and outcome definitions also differed between studies. In all included studies, it was standard policy to give empirical antibiotics (and sometimes also antimycotics) to (some of) the participants diagnosed with an infection. Two studies included adults and one study included children. In all studies, only a scant description of treatment regimens was provided. All studies had methodological limitations. Pooling of results of included studies was not possible. In two individual studies, no statistically significant differences in infection rate were identified between intervention and control diets; another study showed no significant differences between treatment groups in the number of chemotherapy cycles with an infection. None of the studies mentioned infection-related mortality, but in one study, no significant difference in overall survival was observed between treatment groups. Time from onset of neutropenia to fever, duration of empirical antibiotics and antimycotics, diet acceptability (i.e. following the diet easily and following the diet throughout all chemotherapy cycles) and quality of life were all evaluated by only one study; for all outcomes, no statistically significant differences between treatment arms were identified., Authors' Conclusions: At the moment, no evidence from individual RCTs in children and adults with different malignancies underscores use of an LBD for prevention of infection and related outcomes. All studies differed with regard to co-interventions, outcome definitions and intervention and control diets. As pooling of results was not possible, and as all studies had serious methodological limitations, we could reach no definitive conclusions. It should be noted that 'no evidence of effect', as identified in this review, is not the same as 'evidence of no effect'. On the basis of currently available evidence, we are not able to provide recommendations for clinical practice. Additional high-quality research is needed.
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- 2016
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47. Current variations in childhood cancer supportive care in the Netherlands.
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Loeffen EA, Mulder RL, van de Wetering MD, Font-Gonzalez A, Abbink FC, Ball LM, Loeffen JL, Michiels EM, Segers H, Kremer LC, and Tissing WJ
- Subjects
- Child, Drug-Related Side Effects and Adverse Reactions diagnosis, Drug-Related Side Effects and Adverse Reactions therapy, Evidence-Based Medicine, Humans, Netherlands, Practice Guidelines as Topic, Radiation Injuries diagnosis, Radiation Injuries therapy, Surveys and Questionnaires, Antineoplastic Agents adverse effects, Drug-Related Side Effects and Adverse Reactions prevention & control, Medical Oncology, Neoplasms therapy, Pain Management methods, Palliative Care methods, Practice Patterns, Physicians', Radiation Injuries prevention & control, Radiotherapy adverse effects
- Abstract
Background: Current treatment strategies in pediatric oncology are intensive and lead to high survival rates but also to treatment-related complications. Therefore, supportive care plays an increasingly important role. This study was designed to evaluate variations in supportive care practice in children with cancer in the Netherlands and adherence to selected existing international guidelines through an in-depth review of local guidelines and protocols at all 6 Dutch pediatric cancer centers., Methods: Based on shared expert opinion, a questionnaire regarding current supportive care practice was compiled. For each center, the required information was extracted from local supportive care guidelines, and the list was sent to a pediatric oncologist of that center to verify its correspondence with local daily practice. Subsequently, it was determined whether clinical practice was concordant (same in ≥ 5 of 6 centers), partly concordant (highly overlapping in ≥ 5 of 6 centers), or discordant (same in < 5 of 6 centers). Local practices were compared with strong recommendations from high-quality, evidence-based guidelines., Results: The questionnaire comprised 67 questions regarding supportive care practice. Concordance was observed for 11 of 67 practice items (16%), partial concordance was observed for 6 of 67 practice items (9%), and discordance was observed for 50 of 67 practice items (75%). Adherence to strong recommendations of 4 high-quality, evidence-based guidelines varied but was generally low., Conclusions: Large variations exist in pediatric oncology supportive care practice, and this could negatively influence care. Adherence to existing evidence-based guidelines and the development and implementation of new clinical practice guidelines have the potential of standardizing supportive care practice and thereby improving outcomes for children with cancer., (© 2015 American Cancer Society.)
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- 2016
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48. Cyclophosphamide versus ifosfamide for paediatric and young adult bone and soft tissue sarcoma patients.
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Mulder RL, Paulides M, Langer T, Kremer LC, and van Dalen EC
- Subjects
- Adult, Child, Humans, Young Adult, Antineoplastic Agents, Alkylating therapeutic use, Bone Neoplasms drug therapy, Cyclophosphamide therapeutic use, Ifosfamide therapeutic use, Sarcoma drug therapy, Soft Tissue Neoplasms drug therapy
- Abstract
Background: Alkylating agents, such as cyclophosphamide and ifosfamide, play a major role in the improved survival of children and young adults with bone and soft tissue sarcoma. However, there is still controversy as to their comparative anti-tumour efficacy and possible adverse effects. This is the second update of the first systematic review evaluating the state of evidence on the effectiveness of cyclophosphamide as compared to ifosfamide for paediatric and young adult patients with sarcoma., Objectives: The primary obective was to compare the effectiveness, that is response rate, event-free survival and overall survival, of cyclophosphamide with that of ifosfamide for paediatric and young adult patients with sarcoma. Secondary objectives were to determine effects of these agents on toxicities (including late effects) and quality of life., Search Methods: We searched CENTRAL (The Cochrane Library 2015, issue 2), MEDLINE/PubMed (from 1966 to March 2015) and EMBASE/Ovid (from 1980 to March 2015) with prespecified terms. In addition, we searched reference lists of relevant articles, conference proceedings and ongoing trial databases (www.controlled-trials.com; searched June 2015)., Selection Criteria: Randomised controlled trials (RCTs) or controlled clinical trials (CCTs) comparing cyclophosphamide and ifosfamide for the treatment of different types of sarcoma in paediatric and young adult patients (aged less than 30 years at diagnosis). Chemotherapy other than either cyclophosphamide or ifosfamide should have been the same in both treatment groups., Data Collection and Analysis: Two authors independently performed the study selection., Main Results: No studies meeting the inclusion criteria of the review were identified., Authors' Conclusions: No RCTs or CCTs comparing the effectiveness of cyclophosphamide and ifosfamide in the treatment of bone and soft tissue sarcoma in children and young adults were identified. Therefore no definitive conclusions can be made about the effects of cyclophosphamide and ifosfamide in these patients. Based on the currently available evidence, we are not able to give recommendations for clinical practice. More high-quality research is needed.
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- 2015
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49. The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors.
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Brown MC, Levitt GA, Frey E, Bárdi E, Haupt R, Hjorth L, Kremer L, Kuehni CE, Lettner C, Mulder RL, Michel G, and Skinner R
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- Child, Child, Preschool, Europe, Guidelines as Topic, Humans, Neoplasms therapy, Surveys and Questionnaires, Attitude of Health Personnel, Delivery of Health Care statistics & numerical data, Guideline Adherence statistics & numerical data, Medical Staff psychology
- Abstract
Background: Evidence-based guidelines are needed to guide effective long-term follow-up (LTFU) of childhood cancer survivors (CCS) at risk of late adverse effects (LAEs). We aimed to ascertain the use of LTFU guidelines throughout Europe, and seek views on the need for pan-European LTFU guidelines., Procedures: One expert clinician from each of 44 European countries was invited to participate in an online survey. Information was sought regarding the use and content of LTFU guidelines in the respondent's centre and country, and their views about developing pan-European LTFU guidelines., Results: Thirty-one countries (70%) responded, including 24 of 26 full EU countries (92%). LTFU guidelines were implemented nationally in 17 countries (55%). All guidelines included recommendations about physical LAEs, specific risk groups and frequency of surveillance, and the majority about psychosocial LAEs (70%), and healthy lifestyle promotion (65%). A minority of guidelines described recommendations about transition to age-appropriate LTFU services (22%), where LTFU should be performed (22%) and by whom (30%). Most respondents (94%) agreed on the need for pan-European LTFU guidelines, specifically including recommendations about surveillance for specific physical LAEs (97%), action to be taken if a specific LAE is detected (90%), minimum requirements for LTFU (93%), transition and health promotion (both 87%)., Conclusions: Guidelines are not universally used throughout Europe. However, there is strong support for developing pan-European LTFU guidelines for CCS. PanCareSurFup (www.pancare.eu) will collaborate with partners to develop such guidelines, including recommendations for hitherto relatively neglected topics, such as minimum LTFU requirements, transition and health promotion. Pediatr Blood Cancer 2015;62:322-328. © 2014 Wiley Periodicals, Inc., (© 2014 Wiley Periodicals, Inc.)
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- 2015
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50. Recommendations for breast cancer surveillance for female survivors of childhood, adolescent, and young adult cancer given chest radiation: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group.
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Mulder RL, Kremer LC, Hudson MM, Bhatia S, Landier W, Levitt G, Constine LS, Wallace WH, van Leeuwen FE, Ronckers CM, Henderson TO, Dwyer M, Skinner R, and Oeffinger KC
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- Adolescent, Age Factors, Breast Neoplasms etiology, Child, Evidence-Based Medicine, Female, Humans, Interdisciplinary Communication, International Cooperation, Magnetic Resonance Imaging, Mammography, Radiotherapy adverse effects, Risk Assessment, Time Factors, Young Adult, Breast Neoplasms diagnosis, Breast Neoplasms prevention & control, Early Detection of Cancer adverse effects, Early Detection of Cancer methods, Early Detection of Cancer standards, Mass Screening adverse effects, Mass Screening methods, Mass Screening standards, Neoplasms radiotherapy, Population Surveillance methods, Survivors
- Abstract
Female survivors of childhood, adolescent, and young adult (CAYA) cancer who were given radiation to fields that include breast tissue (ie, chest radiation) have an increased risk of breast cancer. Clinical practice guidelines are essential to ensure that these individuals receive optimum care and to reduce the detrimental consequences of cancer treatment; however, surveillance recommendations vary among the existing long-term follow-up guidelines. We applied evidence-based methods to develop international, harmonised recommendations for breast cancer surveillance among female survivors of CAYA cancer who were given chest radiation before age 30 years. The recommendations were formulated by an international, multidisciplinary panel and are graded according to the strength of the underlying evidence., (Copyright © 2013 Elsevier Ltd. All rights reserved.)
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- 2013
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