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1. 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

Author

Christen, Salome, Mulder, Renée L., Brown, Morven C., Ingerski, Lisa M., Mader, Luzius Adrian, Potter, Emma J., Sleurs, Charlotte, Viola, Adrienne S., Waern, Susanna, Constine, Louis S., Hudson, Melissa M., Kremer, Leontien C. M., Skinner, Roderick, Michel, Gisela, Gilleland Marchak, Jordan, and Schulte, Fiona S. M.

Subjects
Late effects, employment, childhood, adolescent, and young adult cancer, Survivorship, evidence-based guidelines
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., + ID der Publikation: unilu_58956 + Sprache: Englisch + Letzte Aktualisierung: 2022-05-04 16:54:38

Published
2022
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2. Childhood cancer survivorship care during the COVID-19 pandemic: an international report of practice implications and provider concerns

Author

Van den Oever, Selina R., Pluijm, Saskia M. F., Skinner, Rod, Glaser, Adam, Mulder, Renée L., Armenian, Saro, Bardi, Edit, Berger, Claire, Erhardt, Matthew J., Gilleland Marchak, Jordan, Haeusler, Gabrielle M., den Hartogh, Jaap, Hjorth, Lars, Kepak, Tomas, Kriviene, Izolda, Langer, Thorsten, Maeda, Miho, Márquez-Vega, Catalina, Michel, Gisela, Muraca, Monica, Najib MU, Mohamed, Nathan, Paul C., Panasiuk, Anna, Prasad, Maya, Roganovic, Jelena, Uyttebroeck, Anne, Winther, Jeannette F., Zodravec Zaletel, Lorna, van Dalen, Elvira C., van der Pal, Helena, Hudson, Melissa M., Kremer, Leontien C. M., Van den Oever, Selina R., Pluijm, Saskia M. F., Skinner, Rod, Glaser, Adam, Mulder, Renée L., Armenian, Saro, Bardi, Edit, Berger, Claire, Erhardt, Matthew J., Gilleland Marchak, Jordan, Haeusler, Gabrielle M., den Hartogh, Jaap, Hjorth, Lars, Kepak, Tomas, Kriviene, Izolda, Langer, Thorsten, Maeda, Miho, Márquez-Vega, Catalina, Michel, Gisela, Muraca, Monica, Najib MU, Mohamed, Nathan, Paul C., Panasiuk, Anna, Prasad, Maya, Roganovic, Jelena, Uyttebroeck, Anne, Winther, Jeannette F., Zodravec Zaletel, Lorna, van Dalen, Elvira C., van der Pal, Helena, Hudson, Melissa M., and Kremer, Leontien C. M.

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., + ID der Publikation: unilu_56897 + Sprache: Englisch + Letzte Aktualisierung: 2022-01-24 15:04:24

Published
2022

3. 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

Author

Gilleland Marchak, Jordan, Christen, Salome, Mulder, Renée L., Baust, Katja, Blom, Johanna M. C., Brinakman, Tara M., Elens, Iris, Harju, Erika, Kadan-Lottick, Nina S., Khor, Joel W. T., Lemiere, Jurgen, Recklitis, Christopher J., Wakefield, Claire E., Kremer, Leontien C. M., Skinner, Roderick, Vetsch, Janine, Lee, Jennifer L., Michel, Gisela, Gilleland Marchak, Jordan, Christen, Salome, Mulder, Renée L., Baust, Katja, Blom, Johanna M. C., Brinakman, Tara M., Elens, Iris, Harju, Erika, Kadan-Lottick, Nina S., Khor, Joel W. T., Lemiere, Jurgen, Recklitis, Christopher J., Wakefield, Claire E., Kremer, Leontien C. M., Skinner, Roderick, Vetsch, Janine, Lee, Jennifer L., and Michel, Gisela

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., + ID der Publikation: unilu_58818 + Sprache: Englisch + Letzte Aktualisierung: 2022-05-06 10:03:47

Published
2022

4. 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

Author

Von Kalsbeek, Rebecca J., Korevaar, Joke C., Rijken, Mieke, Haupt, Riccardo, Muraca, Monica, Kepák, Tomáš, Kepakova, Katerina, Blondeel, Anne, Boes, Stefan, Frederiksen, Line E, Essiaf, Samira, Winther, Jeanette F, Hermens, Rosella P M G, Kienesberger, Anita, Loonen, Jacqueline J, Michel, Gisela, Mulder, Renée L, O'Brien, Kylie B, van der Pal, Helena J H, Pluijm, Saskia M F, Roser, Katharina, Skinner, Roderick, Renard, Marleen, Uyttebroeck, Anne, Follin, Cecilia, Hjorth, Lars, Kremer, Leontien C M, Von Kalsbeek, Rebecca J., Korevaar, Joke C., Rijken, Mieke, Haupt, Riccardo, Muraca, Monica, Kepák, Tomáš, Kepakova, Katerina, Blondeel, Anne, Boes, Stefan, Frederiksen, Line E, Essiaf, Samira, Winther, Jeanette F, Hermens, Rosella P M G, Kienesberger, Anita, Loonen, Jacqueline J, Michel, Gisela, Mulder, Renée L, O'Brien, Kylie B, van der Pal, Helena J H, Pluijm, Saskia M F, Roser, Katharina, Skinner, Roderick, Renard, Marleen, Uyttebroeck, Anne, Follin, Cecilia, Hjorth, Lars, and Kremer, Leontien C M

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 Interve, + ID der Publikation: unilu_61784 + Sprache: Englisch + Letzte Aktualisierung: 2022-11-30 17:16:31

Published
2022

5. 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

Author

Michel, Gisela, Mulder, Renée L., van der Pal, Helena JH, Skinner, Roderick, Bárdi, Edit, Brown, Morwen C, Vetsch, Janine, Frey, Eva, Windsor, Rachael, Kremer, Leontien CM, and Levitt, Gill

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., + ID der Publikation: unilu_42099 + Sprache: Englisch + Letzte Aktualisierung: 2019-08-13 16:20:35

Published
2019
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