{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,15]],"date-time":"2026-09-15T05:02:22Z","timestamp":1789448542449,"version":"build-2803163510"},"reference-count":33,"publisher":"MDPI AG","issue":"18","license":[{"start":{"date-parts":[[2026,9,12]],"date-time":"2026-09-12T00:00:00Z","timestamp":1789171200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100007311","name":"Deutsche Kinderkrebsstiftung","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100007311","id-type":"DOI","asserted-by":"crossref"}]},{"id":[{"id":"https:\/\/ror.org\/04rdnb978","id-type":"ROR","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cancers"],"abstract":"<jats:p>Background: Rising survival rates have created a growing population of childhood cancer survivors (CCSs) who have an increased risk of late effects and require long-term follow-up (LTFU) care. Existing services are often fragmented and may not reflect survivors\u2019 priorities; optimizing such care requires understanding not only the self-reported burden of late effects and their impact on daily lives but also survivors\u2019 information status and their preferences for future care. Methods: Survivor Deutschland e.V. conducted a nationwide cross-sectional online survey assessing the current late effects, daily-life impairments, subjective information statuses, current follow-up structures, and preferences for future LTFU care. A total of 339 CCSs were included, covering all childhood cancer entities, most frequently leukemia (30.7%), central nervous system tumors (18.3%), and lymphoma (16.5%). Data were analyzed descriptively and supplemented by paired non-parametric analyses. Results: Overall, 74.3% (252\/339) reported at least one late effect. Self-rated limitations in daily life had a median of five (Q1\u2013Q3 3\u20137) on a 1\u201310 scale, which increased with the number of reported late effects. The most frequently affected domains were endocrine (36.3%, n = 123), fertility (33.6%), psychological (30.4%, n = 103), neurocognitive (26.0%, n = 88), and orthopedic (24.8%, n = 84) problems. A majority (69.3%, n = 235) knew that late effects existed yet felt insufficiently informed, and 4.4% only learned of these through the survey. Among 172 survivors in adult follow-up care, only 26.8% (46\/172) reported access to structured, specialized LTFU care, whereas 56.4% (97\/172) preferred this model. Survivors rated the importance of LTFU care highly (median 9\/10) but rated satisfaction with their current care as much lower (median 3\/10). The most valued components were the coverage of follow-up costs, sufficient consultation time, a dedicated contact person, and clear communication of results. Psychological support was a notable gap (5.8%, 10\/172 current access vs. 17.9% 31\/172 preferred), and 84.1% were willing to travel up to two hours or more for high-quality care. Conclusions: German CCSs report a high late-effect burden, meaningful impairment of their daily lives, a pronounced information gap, and substantial unmet care needs. These patient-centered findings support structured, risk-adapted LTFU with proactive information, integrated psychological support, and sustainable financing at specialized LTFU centers.<\/jats:p>","DOI":"10.3390\/cancers18182951","type":"journal-article","created":{"date-parts":[[2026,9,14]],"date-time":"2026-09-14T09:34:01Z","timestamp":1789378441000},"page":"2951","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Self-Reported Late Effects, Information Needs, and Preferences for Long-Term Follow-Up Care Among Survivors of Childhood Cancer: A Nationwide Survivor-Led Survey from Germany"],"prefix":"10.3390","volume":"18","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7796-7434","authenticated-orcid":false,"given":"Jette","family":"Luedersen","sequence":"first","affiliation":[{"name":"Survivor Deutschland e.V., Deutscher Kinderkrebsverband, 53175 Bonn, Germany"},{"name":"Department of Stem Cell Transplantation, University Medical Center Hamburg-Eppendorf, 20246 Hamburg, Germany"}],"role":[{"vocabulary":"crossref","role":"author"},{"role":"conceptualization","vocabulary":"credit"},{"role":"methodology","vocabulary":"credit"},{"role":"investigation","vocabulary":"credit"},{"role":"writing-original-draft","vocabulary":"credit"},{"role":"resources","vocabulary":"credit"},{"role":"visualization","vocabulary":"credit"}]},{"given":"Bjoern","family":"Hessing","sequence":"additional","affiliation":[{"name":"Survivor Deutschland e.V., Deutscher Kinderkrebsverband, 53175 Bonn, Germany"},{"name":"Exercise Oncology Research Group, Department of Medical Oncology, Heidelberg University Hospital, Medical Faculty Heidelberg, Heidelberg University, 69120 Heidelberg, Germany"},{"name":"National Center for Tumor Diseases (NCT), 69120 Heidelberg, Germany"}],"role":[{"vocabulary":"crossref","role":"author"},{"role":"data-curation","vocabulary":"credit"},{"role":"writing-review-editing","vocabulary":"credit"},{"role":"methodology","vocabulary":"credit"},{"role":"software","vocabulary":"credit"},{"role":"validation","vocabulary":"credit"},{"role":"formal-analysis","vocabulary":"credit"},{"role":"visualization","vocabulary":"credit"},{"role":"conceptualization","vocabulary":"credit"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5006-9573","authenticated-orcid":false,"given":"Marie","family":"Alfes","sequence":"additional","affiliation":[{"name":"Survivor Deutschland e.V., Deutscher Kinderkrebsverband, 53175 Bonn, Germany"},{"name":"Parenteral Product Development Science and Technology Analytical, AbbVie Deutschland GmbH & Co. KG, 67061 Ludwigshafen, Germany"}],"role":[{"vocabulary":"crossref","role":"author"},{"role":"writing-review-editing","vocabulary":"credit"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-4407-6391","authenticated-orcid":false,"given":"Franziska E.","family":"Marquard","sequence":"additional","affiliation":[{"name":"Department of Stem Cell Transplantation, University Medical Center Hamburg-Eppendorf, 20246 Hamburg, Germany"}],"role":[{"vocabulary":"crossref","role":"author"},{"role":"writing-review-editing","vocabulary":"credit"}]},{"ORCID":"https:\/\/orcid.org\/0009-0003-9399-2108","authenticated-orcid":false,"given":"Eva-Maria","family":"Wild","sequence":"additional","affiliation":[{"name":"Survivor Deutschland e.V., Deutscher Kinderkrebsverband, 53175 Bonn, Germany"},{"name":"Department of Paediatrics and Adolescent Medicine, University Hospital Erlangen, Friedrich-Alexander-Universit\u00e4t Erlangen-N\u00fcrnberg (FAU), 91054 Erlangen, Germany"},{"name":"Pediatric Oncology Network Bavaria, Kinderonkologisches Netzwerk (KioNet), 91054 Erlangen, Germany"},{"name":"Bavarian Cancer Research Center (BZKF), 91052 Erlangen, Germany"}],"role":[{"vocabulary":"crossref","role":"author"},{"role":"conceptualization","vocabulary":"credit"},{"role":"methodology","vocabulary":"credit"},{"role":"investigation","vocabulary":"credit"},{"role":"resources","vocabulary":"credit"},{"role":"writing-original-draft","vocabulary":"credit"},{"role":"writing-review-editing","vocabulary":"credit"},{"role":"visualization","vocabulary":"credit"},{"role":"supervision","vocabulary":"credit"},{"role":"project-administration","vocabulary":"credit"}]}],"member":"1968","published-online":{"date-parts":[[2026,9,12]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"1525","DOI":"10.1016\/S1470-2045(22)00637-4","article-title":"Long-term survival and cure fraction estimates for childhood cancer in Europe (EUROCARE-6): Results from a population-based study","volume":"23","author":"Botta","year":"2022","journal-title":"Lancet Oncol."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"453","DOI":"10.1007\/s00103-022-03507-0","article-title":"The 41,000 long-term survivor cohort of the German Childhood Cancer Registry","volume":"65","author":"Kaatsch","year":"2022","journal-title":"Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"2569","DOI":"10.1016\/S0140-6736(17)31610-0","article-title":"The cumulative burden of surviving childhood cancer: An initial report from the St Jude Lifetime Cohort Study (SJLIFE)","volume":"390","author":"Bhakta","year":"2017","journal-title":"Lancet"},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"1865","DOI":"10.1002\/cam4.1936","article-title":"Prevalence of mental distress among adult survivors of childhood cancer in Germany-Compared to the general population","volume":"8","author":"Burghardt","year":"2019","journal-title":"Cancer Med."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"2371","DOI":"10.1001\/jama.2013.6296","article-title":"Clinical ascertainment of health outcomes among adults treated for childhood cancer","volume":"309","author":"Hudson","year":"2013","journal-title":"JAMA"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"2553","DOI":"10.1002\/cncr.34795","article-title":"Psychosocial outcomes in long-term Dutch adult survivors of childhood cancer: The DCCSS-LATER 2 psycho-oncology study","volume":"129","author":"Maas","year":"2023","journal-title":"Cancer"},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"316","DOI":"10.1016\/j.ejca.2021.06.004","article-title":"European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer","volume":"154","author":"Kremer","year":"2021","journal-title":"Eur. 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