PanCareLIFE: The scientific basis for a European project to improve long-term care regarding fertility, ototoxicity and health-related quality of life after cancer occurring among children and adolescents

Byrne, Julianne; Grabow, Desiree; Campbell, Helen; O'Brien, Kylie B; Bielack, Stefan; Zehnhoff‐Dinnesen, Antoinette am; Calaminus, Gabriele; Kremer, Leontien C. M.; Langer, Thor﻿s﻿ten; Heuvel‐Eibrink, Marry M. van den; Broeder, Eline van Dulmen‐den; Baust, Katja; Bautz, Andrea; Beck, J. D.; Berger, Claire; Binder, Harald; Borgmann‐Staudt, Anja; Broer, Linda; Cario, Holger; Casagranda, Léonie; Clemens, Eva; Deuster, Dirk; Vries, Andrica de; Dirksen, Uta; Winther, Jeanette Falck; Fosså, Sophie D.; Font-Gonzalez, Anna; Grandage, Victoria; Haupt, Riccardo; Hecker‐Nolting, Stefanie; Hjorth, Lars; Kaiser, Melanie; Kenborg, Line; Kepák, Tomáš; Kepakova, Katerina; Knudsen, Lisbeth E.; Krawczuk‐Rybak, Maryna; Kruseová, Jarmila; Kuehni, Claudia E.; Kunstreich, Marina; Kuonen, Rahel; Lackner, Herwig; Leiper, Alison; Loeffen, Erik A. H.; Lukš, Aleš; Modan‐Moses, Dalit; Mulder, Renée L.; Parfitt, Ross; Paul, Norbert W.; Ranft, Andreas; Ruud, Ellen; Schilling, Ralph; Spix, Claudia; Stefanowicz, Joanna; Strauβ, Gabriele; Uitterlinden, André G.; Berg, M. van den; Kooi, Anne-Lotte L F van der; Dijk, Marloes van; Leeuwen, Flora van; Zolk, Oliver; Zöller, Daniela; Kaatsch, Peter

doi:10.1016/j.ejca.2018.08.007

Cited by 47 publications

(40 citation statements)

References 44 publications

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“…Guidelines for fertility counselling and preservation are available; nevertheless, an overall standard has yet to be established . Patient education requires improvement in order to enable self‐determined decisions regarding family planning.…”

Section: Introductionmentioning

confidence: 99%

“…9,10 Guidelines for fertility counselling and preservation are available; nevertheless, an overall standard has yet to be established. 11,12 Patient education requires improvement in order to enable self-determined decisions regarding family planning. Increased knowledge directly correlates with higher empowerment, which leads to confidence in decision-making.…”

Section: Introductionmentioning

confidence: 99%

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Fertility knowledge and associated empowerment following an educational intervention for adolescent cancer patients

et al. 2019

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Introduction/Objectives Fertility preservation is a major concern for adolescent cancer patients; yet, educational gaps remain. Our intervention study examined whether specially designed educational materials regarding fertility preservation increase knowledge and empowerment of patients and parents. Methods Eleven paediatric‐oncological centres in four European countries agreed to enrol all eligible patients and parents in a questionnaire survey at 3 and 6 months after diagnosis. Treating physicians were surveyed on their medical consultation regarding fertility. Results Educational intervention increased knowledge in both patients (n = 113 and n = 101 in the control and intervention groups, respectively) and parents (n = 111 and n = 99 in the control and intervention groups, respectively), but the difference did not achieve statistical significance (knowledge difference patients: 5.6% (t0)/13.1% (t1); parents: 6.4% (t0)/3.8% (t1)). Parents of older patients (OR = 1.3, 95%CI = 1.1‐1.7) and higher educational groups (OR = 6.2, 95%CI = 2.1‐18.3) in the intervention group (OR = 1.9, 95%CI = 1.03‐3.7) achieved higher knowledge levels. Empowerment was significantly improved in both patients (p = 0.046, d = 0.27) and parents (p = 0.046, d = 0.48) in the intervention group. Discussion/Conclusions In our study, the use of specifically prepared flyers and brochures successfully raised the level of fertility preservation knowledge in parents of older patients as well as parents with higher educational levels. Overall, the intervention improved patient and parent empowerment. Subsequent projects will include simpler information and digital material to particularly reach out to younger and less educated individuals.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Fertility knowledge and associated empowerment following an educational intervention for adolescent cancer patients

et al. 2019

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“…Given the vastly improved survival now seen in CYP cancers, it is imperative that treatment aims not only to cure the underlying disease but to do so with minimal impact on future health. Large, multinational studies have been set up aiming to fully explore the LEs of CYP cancer and to research how best to improve the lives of survivors . Many contemporary trials are investigating the safety of reduced treatment intensities, which should help to reduce the incidence of LEs …”

Section: Childhood Cancermentioning

confidence: 99%

“…Cardiovascular disease—including congestive cardiac failure, myocardial infarction and vascular disease—may affect survivors of CYP cancer, with prevalence of roughly 4‐6 times that seen in the population without cancer with the cumulative incidence continuing to increase 30 years after cancer diagnosis . This increased risk is particularly notable among survivors of certain tumour types (eg lymphoma) and those receiving particular treatments (eg high‐dose anthracyclines or mediastinal/chest radiation) . Stroke risk is additionally increased in CYP cancer survivors, with 12% reporting at least 1 stroke by 30 years post diagnosis, and a fifth of these experiencing recurrent strokes …”

Section: Childhood Cancermentioning

confidence: 99%

“…Large, multinational studies have been set up aiming to fully explore the LEs of CYP cancer and to research how best to improve the lives of survivors. 21,22 Many contemporary trials are investigating the safety of reduced treatment intensities, which should help to reduce the incidence of LEs. 23,24 This review aims to provide a brief overview of the vast array of LEs experienced by survivors of CYP cancer in order to contextualize the issues they might experience while providing a more in-depth review of the reproductive health sequelae.…”

Section: Late Effects Of Cancer and Treatmentmentioning

confidence: 99%

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Survival from cancer in young people: An overview of late effects focusing on reproductive health

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et al. 2019

Acta Obstet Gynecol Scand

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This paper provides a summary of the areas of survival from childhood, teenage and young adult cancers and the significant late effects that can arise from treatment; with particular focus on the area of reproductive health and the impact on both fertility and pregnancy. To complete this review, Web of Science and MEDLINE were used. Search terms included: “"survival AND childhood OR teenage OR young adult cancer", "late effects", "childhood cancer", "teenage AND/OR young adult cancer", AND "fertility after cancer" OR "pregnancy AND cancer" OR "fertility preservation”. Additionally, the clinical expertise of the authors was drawn upon. Childhood cancer is a thankfully rare occurrence; however, the incidence is increasing. Survival rates remain high and this means that a growing population of childhood and young adult cancer survivors are reaching adulthood. For some of these adults, although cured of their cancer, they are now facing a future with lasting effects on their health from their treatments. These effects, commonly referred to as late effects, are defined as health problems related either directly to the underlying cancer or to its treatment and which occur months or years after treatment has finished. Reproductive health is an important consideration for these patients, and although many will be able to conceive naturally, some will exhibit impaired fertility after their treatments. This can include difficulties at all points along the path from conception to delivery of a live, healthy offspring. High‐quality, large‐population evidence is sparse in many areas relating to fertility risk from treatment and the maternal and fetal health of childhood cancer survivors. Yet given the potential for complications, the authors advocate consideration of fertility at the time of diagnosis and before potentially gonadotoxic treatment.

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Recommendations for Age-Appropriate Testing, Timing, and Frequency of Audiologic Monitoring During Childhood Cancer Treatment

et al. 2021

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PanCareLIFE: The scientific basis for a European project to improve long-term care regarding fertility, ototoxicity and health-related quality of life after cancer occurring among children and adolescents

Cited by 47 publications

References 44 publications

Fertility knowledge and associated empowerment following an educational intervention for adolescent cancer patients

Fertility knowledge and associated empowerment following an educational intervention for adolescent cancer patients

Survival from cancer in young people: An overview of late effects focusing on reproductive health

Recommendations for Age-Appropriate Testing, Timing, and Frequency of Audiologic Monitoring During Childhood Cancer Treatment

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