Erdmann F, Spix C, Schrappe M, Borkhardt A, Schüz J. Temporal changes of the incidence of childhood cancer in Germany during the COVID-19 pandemic: Updated analyses from the German Childhood Cancer Registry. Lancet Reg Health Eur. 2022;17:100398.
Gatta G, Botta L, Rossi S, Aareleid T, Bielska-Lasota M, Clavel J, et al. Childhood cancer survival in Europe 1999–2007: results of EUROCARE-5–a population-based study. Lancet Oncol. 2014;15:35–47. https://doi.org/10.1016/S1470-2045(13)70548-5.
Article
PubMed
Google Scholar
Bhakta N, Liu Q, Ness KK, Baassiri M, Eissa H, Yeo F, et al. The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (SJLIFE). Lancet (London, England). 2017;390:2569–82. https://doi.org/10.1016/S0140-6736(17)31610-0.
Article
Google Scholar
Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355:1572–82. https://doi.org/10.1056/NEJMsa060185.
Article
CAS
PubMed
Google Scholar
Geenen MM, Cardous-Ubbink MC, Kremer LCM, van den Bos C, van den Pal Helena JH, Heinen RC, et al. Medical assessment of adverse health outcomes in long-term survivors of childhood cancer. JAMA. 2007;297:2705–15. https://doi.org/10.1001/jama.297.24.2705.
Article
CAS
PubMed
Google Scholar
Hudson MM, Ness KK, Gurney JG, Mulrooney DA, Chemaitilly W, Krull KR, et al. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA. 2013;309:2371–81. https://doi.org/10.1001/jama.2013.6296.
Article
CAS
PubMed
PubMed Central
Google Scholar
Rueegg CS, Gianinazzi ME, Michel G. Psychosoziale Spätfolgen nach Kinderkrebs - eine Langzeitstudie des Schweizer Kinderkrebsregisters. Schweizer Krebsbulletin. 2013;33(3):217–9. SAKK.
Hong HC, Min A, Choi S. Living with the Late Effects of Childhood Cancer Treatment: A Descriptive Qualitative Study. IJERPH. 2021;18:8392. https://doi.org/10.3390/ijerph18168392.
Article
PubMed
PubMed Central
Google Scholar
Howard AF, Kazanjian A, Pritchard S, Olson R, Hasan H, Newton K, Goddard K. Healthcare system barriers to long-term follow-up for adult survivors of childhood cancer in British Columbia, Canada: a qualitative study. J Cancer Surviv. 2018;12:277–90. https://doi.org/10.1007/s11764-017-0667-3.
Article
PubMed
Google Scholar
Hawkins MM, Lancashire ER, Winter DL, Frobisher C, Reulen RC, Taylor AJ, et al. The British Childhood Cancer Survivor Study: Objectives, methods, population structure, response rates and initial descriptive information. Pediatr Blood Cancer. 2008;50:1018–25. https://doi.org/10.1002/pbc.21335.
Article
CAS
PubMed
Google Scholar
Kaul S, Fluchel M, Spraker-Perlman H, Parmeter CF, Kirchhoff AC. Health care experiences of long-term survivors of adolescent and young adult cancer. Support Care Cancer. 2016;24:3967–77. https://doi.org/10.1007/s00520-016-3235-x.
Article
PubMed
Google Scholar
Gudmundsdottir T, Winther JF, de Fine Licht S, Bonnesen TG, Asdahl PH, Tryggvadottir L, et al. Cardiovascular disease in Adult Life after Childhood Cancer in Scandinavia: A population-based cohort study of 32,308 one-year survivors. Int J Cancer. 2015;137:1176–86. https://doi.org/10.1002/ijc.29468.
Article
CAS
PubMed
Google Scholar
de Fine Licht S, Rugbjerg K, Gudmundsdottir T, Bonnesen TG, Asdahl PH, Holmqvist AS, et al. Long-term inpatient disease burden in the Adult Life after Childhood Cancer in Scandinavia (ALiCCS) study: A cohort study of 21,297 childhood cancer survivors. PLoS Med. 2017;14:e1002296. https://doi.org/10.1371/journal.pmed.1002296.
Article
PubMed
PubMed Central
Google Scholar
Nathan PC, Agha M, Pole JD, Hodgson D, Guttmann A, Sutradhar R, Greenberg ML. Predictors of attendance at specialized survivor clinics in a population-based cohort of adult survivors of childhood cancer. J Cancer Surviv. 2016;10:611–8. https://doi.org/10.1007/s11764-016-0522-y.
Article
PubMed
Google Scholar
Boyes AW, Girgis A, D’Este C, Zucca AC. Prevalence and correlates of cancer survivors’ supportive care needs 6 months after diagnosis: a population-based cross-sectional study. BMC Cancer. 2012;12:150. https://doi.org/10.1186/1471-2407-12-150.
Article
PubMed
PubMed Central
Google Scholar
Zheng DJ, Sint K, Mitchell H-R, Kadan-Lottick NS. Patterns and predictors of survivorship clinic attendance in a population-based sample of pediatric and young adult childhood cancer survivors. J Cancer Surviv. 2016;10:505–13. https://doi.org/10.1007/s11764-015-0493-4.
Article
PubMed
Google Scholar
Gebauer J, Rieken S, Schuster S, Hahn B, Gebauer N, Meidenbauer N, et al. Multidisciplinary Late Effects Clinics for Childhood Cancer Survivors in Germany - a Two-Center Study. Oncol Res Treat. 2018;41:430–6. https://doi.org/10.1159/000488203.
Article
PubMed
Google Scholar
Merzenich H, Baaken D, Schneider A, Neu MA, Wingerter A, Faber J, et al. Mortality risk among 5-year survivors of childhood cancer in Germany-Results from the CVSS study (Cardiac and Vascular late Sequelae in long-term Survivors of childhood cancer study). Int J Cancer. 2022;150:67–72. https://doi.org/10.1002/ijc.33772.
Article
CAS
PubMed
Google Scholar
Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. Version 5.0 (October 2018). http://www.survivorshipguidelines.org/.
Schuster S, Beck JD, Calaminus G, am Zehnhoff-Dinnesen A, Langer T. Nachsorge von krebskranken Kindern, Jugendlichen und jungen Erwachsenen – Erkennen, Vermeiden und Behandeln von Spätfolgen. 2013. (http://www.awmf.org/uploads/tx_szleitlinien/025-003l_S1_Nachsorge_von_krebskranken_Kindern_Jugendlichen_06-2013.pdf).
Google Scholar
Children’s Oncology Group. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers,: Version 5.0. 2018. (http://www.survivorshipguidelines.org/).
Google Scholar
van Breeschoten J, de Abreu Lourenco R, Signorelli C, Haas M, Cohn RJ, Wakefield CE, Fardell JE. Patterns and drivers of health care use in long-term childhood cancer survivors: A systematic review. Crit Rev Oncol Hematol. 2017;120:60–76. https://doi.org/10.1016/j.critrevonc.2017.10.004.
Article
PubMed
Google Scholar
Michel G, Mulder RL, van der Pal HJH, Skinner R, Bárdi E, Brown MC, et al. 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. J Cancer Surviv. 2019;13:759–72. https://doi.org/10.1007/s11764-019-00795-5.
Article
PubMed
Google Scholar
Marr KC, Agha M, Sutradhar R, Pole JD, Hodgson D, Guttmann A, et al. Specialized survivor clinic attendance increases adherence to cardiomyopathy screening guidelines in adult survivors of childhood cancer. J Cancer Surviv. 2017;11:614–23. https://doi.org/10.1007/s11764-017-0634-z.
Article
PubMed
Google Scholar
Fitch MI, Nicoll I, Lockwood G. Exploring the reasons cancer survivors do not seek help for their concerns: a descriptive content analysis. BMJ Support Palliat Care. 2020:bmjspcare-2020–002313. https://doi.org/10.1136/bmjspcare-2020-002313.
Miller KA, Wojcik KY, Cockburn MG, In GK, Hamilton AS, Milam JE. Prevalence and correlates of adherence to skin examination among adolescent and young adult survivors of melanoma from the Project Forward Study. Pediatr Blood Cancer. 2020;67:e28090. https://doi.org/10.1002/pbc.28090.
Article
PubMed
Google Scholar
Deci EL, Ryan RM. Self-determination theory: A macrotheory of human motivation, development, and health. Can Psychol. 2008;49:182–5. https://doi.org/10.1037/a0012801.
Article
Google Scholar
Baenziger J, Roser K, Mader L, Christen S, Kuehni CE, Gumy-Pause F, et al. Can the theory of planned behavior help explain attendance to follow-up care of childhood cancer survivors? Psychooncology. 2018;27:1501–8. https://doi.org/10.1002/pon.4680.
Article
PubMed
Google Scholar
Zabih V, Kahane A, O’Neill NE, Ivers N, Nathan PC. Interventions to improve adherence to surveillance guidelines in survivors of childhood cancer: a systematic review. J Cancer Surviv. 2019;13:713–29. https://doi.org/10.1007/s11764-019-00790-w.
Article
PubMed
Google Scholar
Thompson K, Palmer S, Dyson G. Adolescents & young adults: issues in transition from active therapy into follow-up care. Eur J Oncol Nurs. 2009;13:207–12. https://doi.org/10.1016/j.ejon.2009.05.001.
Article
PubMed
Google Scholar
Oeffinger KC, Eshelman DA, Tomlinson GE, Buchanan GR, Foster BM. Grading of late effects in young adult survivors of childhood cancer followed in an ambulatory adult setting. Cancer. 2000;88:1687–95.
Article
CAS
Google Scholar
Ludvigsen MS, Hall EOC, Westergren T, Aagaard H, Uhrenfeldt L, Fegran L. Being cross pressured-parents’ experiences of the transfer from paediatric to adult care services for their young people with long term conditions: A systematic review and qualitative research synthesis. Int J Nurs Stud. 2021;115:103851. https://doi.org/10.1016/j.ijnurstu.2020.103851.
Article
PubMed
Google Scholar
Fegran L, Hall EOC, Uhrenfeldt L, Aagaard H, Ludvigsen MS. Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis. Int J Nurs Stud. 2014;51:123–35. https://doi.org/10.1016/j.ijnurstu.2013.02.001.
Article
PubMed
Google Scholar
Psihogios AM, Schwartz LA, Deatrick JA, Ver Hoeve ES, Anderson LM, Wartman EC, Szalda D. Preferences for cancer survivorship care among adolescents and young adults who experienced healthcare transitions and their parents. J Cancer Surviv. 2019;13:620–31. https://doi.org/10.1007/s11764-019-00781-x.
Article
PubMed
Google Scholar
Cameron JI, et al. “Timing It Right”: A conceptual framework for addressing the support needs of family caregivers. Patient Educ Couns. 2008;70:305–14.
Article
Google Scholar
Vetsch J, Rueegg CS, Mader L, Bergstraesser E, Diezi M, Kuehni CE, Michel G. Parents’ preferences for the organisation of long-term follow-up of childhood cancer survivors. Eur J Cancer Care. 2018;27:e12649. https://doi.org/10.1111/ecc.12649.
Article
CAS
Google Scholar
Sisk BA, Schulz GL, Blazin LJ, Baker JN, Mack JW, DuBois JM. Parental views on communication between children and clinicians in pediatric oncology: a qualitative study. Support Care Cancer. 2021;29:4957–68. https://doi.org/10.1007/s00520-021-06047-6.
Article
PubMed
PubMed Central
Google Scholar
Hoekstra-Weebers JE, Jaspers JP, Kamps WA, Klip EC. Psychological adaptation and social support of parents of pediatric cancer patients: a prospective longitudinal study. J Pediatr Psychol. 2001;26:225–35. https://doi.org/10.1093/jpepsy/26.4.225.
Article
CAS
PubMed
Google Scholar
Gebauer J, Baust K, Bardi E, Grabow D, Stein A, van der Pal HJ, et al. Guidelines for Long-Term Follow-Up after Childhood Cancer: Practical Implications for the Daily Work. Oncol Res Treat. 2020;43:61–9. https://doi.org/10.1159/000504200.
Article
PubMed
Google Scholar
Langer T, Grabow D, Steinmann D, Wörmann B, Calaminus G. Late Effects and Long-Term Follow-Up after Cancer in Childhood. Oncol Res Treat. 2017;40:746–50. https://doi.org/10.1159/000484936.
Article
PubMed
Google Scholar
Sieswerda E, Postma A, van Dalen EC, van der Pal H, Tissing W, Rammeloo L, et al. The Dutch Childhood Oncology Group guideline for follow-up of asymptomatic cardiac dysfunction in childhood cancer survivors. Ann Oncol. 2012;23:2191–8. https://doi.org/10.1093/annonc/mdr595.
Article
CAS
PubMed
Google Scholar
von der Weid N. Late effects in long-term survivors of ALL in childhood: experiences from the SPOG late effects study. Swiss Med Wkly. 2001;131:180–7.
PubMed
Google Scholar
Chan RJ, Yates P, Li Q, Komatsu H, Lopez V, Thandar M, et al. Oncology practitioners’ perspectives and practice patterns of post-treatment cancer survivorship care in the Asia-Pacific region: results from the STEP study. BMC Cancer. 2017;17:715. https://doi.org/10.1186/s12885-017-3733-3.
Article
PubMed
PubMed Central
Google Scholar
Bejarano-Quisoboni D, Pelletier-Fleury N, Allodji RS, Lacour B, GrosClaude P, Pacquement H, et al. Health care expenditures among long-term survivors of pediatric solid tumors: Results from the French Childhood Cancer Survivor Study (FCCSS) and the French network of cancer registries (FRANCIM). PLoS ONE. 2022;17:e0267317. https://doi.org/10.1371/journal.pone.0267317.
Article
CAS
PubMed
PubMed Central
Google Scholar
Borgmann A, Zinn C, Hartmann R, Herold R, Kaatsch P, Escherich G, et al. Secondary malignant neoplasms after intensive treatment of relapsed acute lymphoblastic leukaemia in childhood. Eur J Cancer (Oxford, England : 1990). 2008;44:257–68. https://doi.org/10.1016/j.ejca.2007.09.019.
Article
Google Scholar
Swart E, Gothe H, Geyer S, Jaunzeme J, Maier B, Grobe TG, Ihle P. Gute Praxis Sekundärdatenanalyse (GPS): Leitlinien und Empfehlungen. [Good Practice of Secondary Data Analysis (GPS): guidelines and recommendations]. Gesundheitswesen (Bundesverband der Arzte des Offentlichen Gesundheitsdienstes (Germany)). 2015;77:120–6. https://doi.org/10.1055/s-0034-1396815.
Article
CAS
Google Scholar
Bradshaw J. Problems and progress in medical care : essays on current research: Taxonomy of social need. 1972. https://eprints.whiterose.ac.uk/118357/1/bradshaw_taxonomy.pdf. Accessed 4 Jun 2021.
Pourmand G, Doshmangir L, Ahmadi A, Noori M, Rezaeifar A, Mashhadi R, et al. An application of the theory of planned behavior to self-care in patients with hypertension. BMC Public Health. 2020;20:1290. https://doi.org/10.1186/s12889-020-09385-y.
Article
PubMed
PubMed Central
Google Scholar
Mueller RA. Episodic Narrative Interview: Capturing Stories of Experience With a Methods Fusion. Int J Qual Methods. 2019. https://doi.org/10.1177/1609406919866044.
Article
Google Scholar
Pechmann C. A Comparison of Health Communication Models: Risk Learning Versus Stereotype Priming. Media Psychol. 2001;3:189–210. https://doi.org/10.1207/S1532785XMEP0302_04.
Article
Google Scholar
Ajzen I. The theory of planned behavior. Organ Behav Hum Decis Process. 1991;50:179–211. https://doi.org/10.1016/0749-5978(91)90020-T.
Article
Google Scholar
Bargh JA, Chen M, Burrows L. Automaticity of social behavior: Direct effects of trait construct and stereotype activation on action. J Pers Soc Psychol. 1996;71:230–44. https://doi.org/10.1037/0022-3514.71.2.230.
Article
CAS
PubMed
Google Scholar
Francis J, Johnston M, Eccles M, Walker A, Grimshaw JM, Foy R, Kaner EFS, Smith L, Bonetti D. Constructing questionnaires based on the theory of planned behaviour: A manual for Health Services Researchers. Quality of life and management of living resources; Centre for Health Services Research. 2004.
Google Scholar
Stake RE. The art of case study research. Thousand Oaks: Sage Publ; 2010.
Google Scholar
Ritchie J, Lewis C, Nicholls C, Ormston R. Qualitative Research Practice: A Guide for Social Science Students and Researchers. 2013.
Google Scholar
Feijen EAM, van Dalen EC, van der Pal HJH, Reulen RC, Winter DL, Keuhni CE, et al. Increased risk of cardiac ischaemia in a pan-European cohort of 36 205 childhood cancer survivors: a PanCareSurFup study. Heart. 2021;107:33–40. https://doi.org/10.1136/heartjnl-2020-316655.
Article
PubMed
Google Scholar
Feijen EAML, Font-Gonzalez A, van der Pal HJH, Kok WEM, Geskus RB, Ronckers CM, et al. Risk and Temporal Changes of Heart Failure Among 5-Year Childhood Cancer Survivors: a DCOG-LATER Study. J Am Heart Assoc. 2019;8:e009122. https://doi.org/10.1161/JAHA.118.009122.
Article
PubMed
Google Scholar
Leerink JM, de Baat EC, Feijen EAM, Bellersen L, van Dalen EC, Grotenhuis HB, et al. Cardiac Disease in Childhood Cancer Survivors: Risk Prediction, Prevention, and Surveillance: JACC CardioOncology State-of-the-Art Review. JACC CardioOncol. 2020;2:363–78. https://doi.org/10.1016/j.jaccao.2020.08.006.
Article
PubMed
PubMed Central
Google Scholar
Cane J, O’Connor D, Michie S. Validation of the theoretical domains framework for use in behaviour change and implementation research. Implement Sci. 2012;7:37. https://doi.org/10.1186/1748-5908-7-37.
Article
PubMed
PubMed Central
Google Scholar
Pluijm SMF. Accelerated Aging as a Paradigm to Understand the Late Effects of Cancer Therapies. Front Horm Res. 2021;54:16–24. https://doi.org/10.1159/000518816.
Article
PubMed
Google Scholar
Hendriks MJ, Harju E, Roser K, Ienca M, Michel G. The long shadow of childhood cancer: a qualitative study on insurance hardship among survivors of childhood cancer. BMC Health Serv Res. 2021;21:503. https://doi.org/10.1186/s12913-021-06543-9.
Article
PubMed
PubMed Central
Google Scholar