Swiss Childhood Cancer Survivor Study

Childhood Cancer Clinical Trial

— SCCSS  

Official title:

Swiss Childhood Cancer Survivor Study (SCCSS)

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT03297034
• Other study ID #: SCCSS
• Status: Recruiting
• Start date: January 1, 2007
• Est. completion date: January 2050

Study information

• Verified date: May 2024
• Source: University of Bern
• Contact: Claudia E Kuehni, Prof.
• Phone: +41 (0)31 631 35 07
• Email: claudia.kuehni[@]unibe.ch
• Is FDA regulated: No
• Study type: Observational [Patient Registry]

Clinical Trial Summary

The SCCSS is designed to investigate which long-term effects childhood cancer and its treatment have on survivors, and includes those who were under 20 years when they were diagnosed. The SCCSS explores childhood cancer survivors' quality of life, the health care received by childhood cancer survivors during follow-up care, the effects of medication, somatic and psychosocial health issues, how childhood cancer survivors take care of their own health, and also collects demographic details like family background, education and profession. To learn more about these topics, the investigators send questionnaires to childhood or adolescent cancer survivors. The investigators use the results to inform physicians and patients, and to improve treatment of childhood cancer and follow-up.

Description:

Background: Therapies have improved so much in the past decades that more than 80% of children and adolescents now survive cancer. This means that the population of long-term childhood cancer survivors is growing. Since cancer and its treatments may later have adverse effects, it is important to track and improve survivor health and quality of life. Comprehensive data on the burden of late effects of childhood cancer or risk factors for late effects was not available, and so Switzerland set up the SCCSS to increase knowledge and improve the quality of care and follow-up.

Objectives: The SCCSS investigates long-term outcomes of survivors of childhood and adolescent cancer, and the incidence and spectrum of various somatic and psychosocial outcomes including late mortality, second primary malignancies, somatic health and medication, mental health, educational achievements, health-related quality of life, and the association of these outcomes with risk factors like tumor, treatment modalities, and demographic characteristics. The SCCSS also investigates how health-care is provided, and how long-term childhood cancer survivors take care of their health.

Methods: All Swiss residents who were diagnosed with cancer at age <20 years, have survived at least 5 years since cancer diagnosis, received a detailed questionnaire. The investigators added data from general practitioners and hospital records. To compare survivors with the general population, they also send the questionnaire to the siblings of childhood cancer survivors.

Rationale and significance: The data collected by the SCCSS allows the investigators to study long-term outcomes of Swiss childhood cancer survivors. The SCCSS helps to learn more about the incidence of late effects and their risk factors. It also allows to summarize the current state of care in Switzerland. Since early diagnosis can prevent or mitigate many late effects, tracking them will help to improve the health of current and future childhood cancer survivors.

Current status of the project: From 2008-2023, the investigators have contacted 5949 childhood cancer survivors diagnosed between 1976-2015 and 2062 of their siblings. The investigators contact new 5-year childhood cancer survivors at regular intervals, and continuously analyse and publish data and findings. By 2022, the investigators have contacted 3443 childhood cancer survivors for a follow-up questionnaire and will continue with this at regular intervals.

Funding: Swiss Cancer League/ Swiss Cancer Research (Grant No: KLS/KFS-4825-01-2019), Stiftung für krebskranke Kinder (Regio basiliensis) and Kinderkrebshilfe Schweiz.

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 3626
• Est. completion date: January 2050
• Est. primary completion date: January 2050
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 5 Years and older

Eligibility

Inclusion Criteria:

• Who were diagnosed with cancer at age <20 years

• Who have survived at least 5 years after cancer diagnosis

• Who were Swiss residents when they were diagnosed, and

• Who gave informed consent

Related Conditions & MeSH terms

• Childhood Cancer

Locations

Country	Name	City	State
Switzerland	Institute of Social and Preventive Medicine (ISPM), University of Bern	Bern

Sponsors (2)

Lead Sponsor	Collaborator
University of Bern	Swiss Pediatric Oncology Group

Country where clinical trial is conducted

Switzerland, 

References & Publications (65)

Adam M, Rueegg CS, Schmidlin K, Spoerri A, Niggli F, Grotzer M, von der Weid NX, Egger M, Probst-Hensch N, Zwahlen M, Kuehni CE; Swiss Paediatric Oncology Group; Swiss National Cohort Study. Socioeconomic disparities in childhood cancer survival in Switze — View Citation

Allodji RS, Hawkins MM, Bright CJ, Fidler-Benaoudia MM, Winter DL, Alessi D, Fresneau B, Journy N, Morsellino V, Bardi E, Bautz A, Byrne J, Feijen ELA, Teepen JC, Vu-Bezin G, Rubino C, Garwicz S, Grabow D, Gudmundsdottir T, Guha J, Hau EM, Jankovic M, Kaa — View Citation

Belle F, Wengenroth L, Weiss A, Sommer G, Beck Popovic M, Ansari M, Bochud M, Kuehni C; Swiss Paediatric Oncology Group (SPOG). Low adherence to dietary recommendations in adult childhood cancer survivors. Clin Nutr. 2017 Oct;36(5):1266-1274. doi: 10.1016 — View Citation

Belle FN, Beck Popovic M, Ansari M, Otth M, Kuehni CE, Bochud M. Nutritional Assessment of Childhood Cancer Survivors (the Swiss Childhood Cancer Survivor Study-Nutrition): Protocol for a Multicenter Observational Study. JMIR Res Protoc. 2019 Nov 18;8(11) — View Citation

Belle FN, Chatelan A, Kasteler R, Mader L, Guessous I, Beck-Popovic M, Ansari M, Kuehni CE, Bochud M. Dietary Intake and Diet Quality of Adult Survivors of Childhood Cancer and the General Population: Results from the SCCSS-Nutrition Study. Nutrients. 202 — View Citation

Belle FN, Kasteler R, Schindera C, Bochud M, Ammann RA, von der Weid NX, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). No evidence of overweight in long-term survivors of childhood cancer after glucocorticoid treatment. Cancer. 2018 Sep 1;124(17):3576 — View Citation

Belle FN, Schindera C, Guessous I, Popovic MB, Ansari M, Kuehni CE, Bochud M. Sodium and Potassium Intakes and Cardiovascular Risk Profiles in Childhood Cancer Survivors: The SCCSS-Nutrition Study. Nutrients. 2019 Dec 24;12(1):57. doi: 10.3390/nu12010057. — View Citation

Belle FN, Weiss A, Schindler M, Goutaki M, Bochud M, Zimmermann K, von der Weid N, Ammann RA, Kuehni CE. Overweight in childhood cancer survivors: the Swiss Childhood Cancer Survivor Study. Am J Clin Nutr. 2018 Jan 1;107(1):3-11. doi: 10.1093/ajcn/nqx006. — View Citation

Belle FN, Wenke-Zobler J, Cignacco E, Spycher BD, Ammann RA, Kuehni CE, Zimmermann K. Overweight in childhood cancer patients at diagnosis and throughout therapy: A multicentre cohort study. Clin Nutr. 2019 Apr;38(2):835-841. doi: 10.1016/j.clnu.2018.02.0 — View Citation

Bhatia S, Armenian SH, Armstrong GT, van Dulmen-den Broeder E, Hawkins MM, Kremer LC, Kuehni CE, Olsen JH, Robison LL, Hudson MM. Collaborative Research in Childhood Cancer Survivorship: The Current Landscape. J Clin Oncol. 2015 Sep 20;33(27):3055-64. doi — View Citation

Bright CJ, Hawkins MM, Winter DL, Alessi D, Allodji RS, Bagnasco F, Bardi E, Bautz A, Byrne J, Feijen EAM, Fidler MM, Garwicz S, Grabow D, Gudmundsdottir T, Guha J, Haddy N, Jankovic M, Kaatsch P, Kaiser M, Kuehni CE, Linge H, Ofstaas H, Ronckers CM, Skin — View Citation

Brown MC, Levitt GA, Frey E, Bardi E, Haupt R, Hjorth L, Kremer L, Kuehni CE, Lettner C, Mulder RL, Michel G, Skinner R; PanCareSurFup Consortium. The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors. Pediat — View Citation

Byrne J, Alessi D, Allodji RS, Bagnasco F, Bardi E, Bautz A, Bright CJ, Brown M, Diallo I, Feijen EAML, Fidler MM, Frey E, Garwicz S, Grabow D, Gudmundsdottir T, Hagberg O, Harila-Saari A, Hau EM, Haupt R, Hawkins MM, Jakab Z, Jankovic M, Kaatsch P, Kaise — View Citation

Byrne J, Grabow D, Campbell H, O'Brien K, Bielack S, Am Zehnhoff-Dinnesen A, Calaminus G, Kremer L, Langer T, van den Heuvel-Eibrink MM, van Dulmen-den Broeder E, Baust K, Bautz A, Beck JD, Berger C, Binder H, Borgmann-Staudt A, Broer L, Cario H, Casagran — View Citation

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, Pra — View Citation

Dudley IM, Sunguc C, Heymer EJ, Winter DL, Teepen JC, Belle FN, Bardi E, Bagnasco F, Gudmundsdottir T, Skinner R, Michel G, Byrne J, Ofstaas H, Jankovic M, Mazic MC, Mader L, Loonen J, Garwicz S, Wiebe T, Alessi D, Allodji RS, Haddy N, Grabow D, Kaatsch P — View Citation

Essig S, Michel G, Dupont C, Kiss A, Bergstraesser E, Tinner EM, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Communicating "cure" to pediatric oncology patients: A mixed-methods study. Pediatr Blood Cancer. 2019 Jun;66(6):e27661. doi: 10.1002/pbc.27 — View Citation

Essig S, von der Weid NX, Strippoli MP, Rebholz CE, Michel G, Rueegg CS, Niggli FK, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Health-related quality of life in long-term survivors of relapsed childhood acute lymphoblastic leukemia. PLoS One. 2012; — View Citation

Feijen EA, Font-Gonzalez A, van Dalen EC, van der Pal HJ, Reulen RC, Winter DL, Kuehni CE, Haupt R, Alessi D, Byrne J, Bardi E, Jakab Z, Grabow D, Garwicz S, Jankovic M, Levitt GA, Skinner R, Zadravec Zaletel L, Hjorth L, Tissing WJ, de Vathaire F, Hawkin — View Citation

Fidler MM, Reulen RC, Winter DL, Allodji RS, Bagnasco F, Bardi E, Bautz A, Bright CJ, Byrne J, Feijen EAM, Garwicz S, Grabow D, Gudmundsdottir T, Guha J, Haddy N, Jankovic M, Kaatsch P, Kaiser M, Kuonen R, Linge H, Maule M, Merletti F, Ofstaas H, Ronckers — View Citation

Gianinazzi ME, Essig S, Rueegg CS, von der Weid NX, Brazzola P, Kuehni CE, Michel G; Swiss Paediatric Oncology Group (SPOG). Information provision and information needs in adult survivors of childhood cancer. Pediatr Blood Cancer. 2014 Feb;61(2):312-8. do — View Citation

Gianinazzi ME, Rueegg CS, von der Weid NX, Niggli FK, Kuehni CE, Michel G; Swiss Paediatric Oncology Group (SPOG). Mental health-care utilization in survivors of childhood cancer and siblings: the Swiss childhood cancer survivor study. Support Care Cancer — View Citation

Gianinazzi ME, Rueegg CS, Wengenroth L, Bergstraesser E, Rischewski J, Ammann RA, Kuehni CE, Michel G; for Swiss Pediatric Oncology Group (SPOG). Adolescent survivors of childhood cancer: are they vulnerable for psychological distress? Psychooncology. 201 — View Citation

Grabow D, Kaiser M, Hjorth L, Byrne J, Alessi D, Allodji RS, Bagnasco F, Bardi E, Bautz A, Bright CJ, de Vathaire F, Feijen EAM, Garwicz S, Hagberg O, Haupt R, Hawkins MM, Jakab Z, Kremer LCM, Kuehni CE, Kuonen R, Lahteenmaki PM, Reulen RC, Ronckers CM, S — View Citation

Hau EM, Caccia JN, Kasteler R, Spycher B, Suter T, Ammann RA, von der Weid NX, Kuehni CE. Cardiovascular disease after childhood acute lymphoblastic leukaemia: a cohort study. Swiss Med Wkly. 2019 Mar 10;149:w20012. doi: 10.4414/smw.2019.20012. eCollectio — View Citation

Hjorth L, Haupt R, Skinner R, Grabow D, Byrne J, Karner S, Levitt G, Michel G, van der Pal H, Bardi E, Beck JD, de Vathaire F, Essig S, Frey E, Garwicz S, Hawkins M, Jakab Z, Jankovic M, Kazanowska B, Kepak T, Kremer L, Lackner H, Sugden E, Terenziani M, — View Citation

Jankovic M, Haupt R, Spinetta JJ, Beck JD, Byrne J, Calaminus G, Lackner H, Biondi A, Oeffinger K, Hudson M, Skinner R, Reaman G, van der Pal H, Kremer L, den Hartogh J, Michel G, Frey E, Bardi E, Hawkins M, Rizvi K, Terenziani M, Valsecchi MG, Bode G, Je — View Citation

Kasteler R, Belle F, Schindera C, Barben J, Gumy-Pause F, Tinner EM, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Prevalence and reasons for smoking in adolescent Swiss childhood cancer survivors. Pediatr Blood Cancer. 2019 Jan;66(1):e27438. doi: 10. — View Citation

Kasteler R, Kam LMH, Weiss A, Waespe N, Sommer G, Singer F, von der Weid NX, Ansari M, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Monitoring pulmonary health in Swiss childhood cancer survivors. Pediatr Blood Cancer. 2018 Oct;65(10):e27255. doi: 10 — View Citation

Kasteler R, Weiss A, Schindler M, Sommer G, Latzin P, von der Weid NX, Ammann RA, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Long-term pulmonary disease among Swiss childhood cancer survivors. Pediatr Blood Cancer. 2018 Jan;65(1). doi: 10.1002/pbc. — View Citation

Kuehni CE, Rueegg CS, Michel G, Rebholz CE, Strippoli MP, Niggli FK, Egger M, von der Weid NX; Swiss Paediatric Oncology Group (SPOG). Cohort profile: the Swiss childhood cancer survivor study. Int J Epidemiol. 2012 Dec;41(6):1553-64. doi: 10.1093/ije/dyr — View Citation

Kuehni CE, Strippoli MP, Rueegg CS, Rebholz CE, Bergstraesser E, Grotzer M, von der Weid NX, Michel G; Swiss Pediatric Oncology Group (SPOG). Educational achievement in Swiss childhood cancer survivors compared with the general population. Cancer. 2012 Ma — View Citation

Langer T, Clemens E, Broer L, Maier L, Uitterlinden AG, de Vries ACH, van Grotel M, Pluijm SFM, Binder H, Mayer B, von dem Knesebeck A, Byrne J, van Dulmen-den Broeder E, Crocco M, Grabow D, Kaatsch P, Kaiser M, Spix C, Kenborg L, Winther JF, Rechnitzer C — View Citation

Langer T, Clemens E, Broer L, Maier L, Uitterlinden AG, de Vries ACH, van Grotel M, Pluijm SFM, Binder H, Mayer B, von dem Knesebeck A, Byrne J, van Dulmen-den Broeder E, Crocco M, Grabow D, Kaatsch P, Kaiser M, Spix C, Kenborg L, Winther JF, Rechnitzer C — View Citation

Marquis A, Strippoli MP, Spycher BD, Rebholz CE, von der Weid NX, Kuehni CE; Swiss Pediatric Oncology Group. Paracetamol, nonsteroidal anti-inflammatory drugs, and risk of asthma in adult survivors of childhood cancer. J Allergy Clin Immunol. 2011 Jan;127 — View Citation

Michel G, Gianinazzi ME, Eiser C, Bergstraesser E, Vetsch J, von der Weid N, Kuehni CE; Swiss Paediatric Oncology Group. Preferences for long-term follow-up care in childhood cancer survivors. Eur J Cancer Care (Engl). 2016 Nov;25(6):1024-1033. doi: 10.11 — View Citation

Michel G, Kuehni CE, Rebholz CE, Zimmermann K, Eiser C, Rueegg CS, von der Weid NX; Swiss Paediatric Oncology Group (SPOG). Can health beliefs help in explaining attendance to follow-up care? The Swiss childhood cancer survivor study. Psychooncology. 2011 — View Citation

Michel G, Rebholz CE, von der Weid NX, Bergstraesser E, Kuehni CE. Psychological distress in adult survivors of childhood cancer: the Swiss Childhood Cancer Survivor study. J Clin Oncol. 2010 Apr 1;28(10):1740-8. doi: 10.1200/JCO.2009.23.4534. Epub 2010 M — View Citation

Norsker FN, Pedersen C, Armstrong GT, Robison LL, McBride ML, Hawkins M, Kuehni CE, de Vathaire F, Berbis J, Kremer LC, Haupt R, Kenborg L, Winther JF. Late Effects in Childhood Cancer Survivors: Early Studies, Survivor Cohorts, and Significant Contributi — View Citation

Otth M, Schindera C, Gungor T, Ansari M, Scheinemann K, Belle FN, Latzin P, von der Weid N, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Transplant characteristics and self-reported pulmonary outcomes in Swiss childhood cancer survivors after hematop — View Citation

Otth M, Yammine S, Usemann J, Latzin P, Mader L, Spycher B, Gungor T, Scheinemann K, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Longitudinal lung function in childhood cancer survivors after hematopoietic stem cell transplantation. Bone Marrow Tran — View Citation

Rebholz CE, Kuehni CE, Strippoli MP, Rueegg CS, Michel G, Hengartner H, Bergstraesser E, von der Weid NX; Swiss Pediatric Oncology Group (SPOG). Alcohol consumption and binge drinking in young adult childhood cancer survivors. Pediatr Blood Cancer. 2012 F — View Citation

Rebholz CE, Rueegg CS, Michel G, Ammann RA, von der Weid NX, Kuehni CE, Spycher BD; Swiss Paediatric Oncology Group (SPOG). Clustering of health behaviours in adult survivors of childhood cancer and the general population. Br J Cancer. 2012 Jul 10;107(2): — View Citation

Rebholz CE, von der Weid NX, Michel G, Niggli FK, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Follow-up care amongst long-term childhood cancer survivors: a report from the Swiss Childhood Cancer Survivor Study. Eur J Cancer. 2011 Jan;47(2):221-9. d — View Citation

Reulen RC, Wong KF, Bright CJ, Winter DL, Alessi D, Allodji RM, Bagnasco F, Bardi E, Bautz A, Byrne J, Feijen EA, Fidler-Benaoudia MM, Diallo I, Garwicz S, Grabow D, Gudmundsdottir T, Guha J, Haddy N, Hogsholt S, Jankovic M, Kaatsch P, Kaiser M, Kuonen R, — View Citation

Rueegg CS, Gianinazzi ME, Michel G, von der Weid NX, Bergstraesser E, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Do childhood cancer survivors with physical performance limitations reach healthy activity levels? Pediatr Blood Cancer. 2013 Oct;60(1 — View Citation

Rueegg CS, Gianinazzi ME, Michel G, Zwahlen M, von der Weid NX, Kuehni CE; and the Swiss Paediatric Oncology Group (SPOG). No evidence of response bias in a population-based childhood cancer survivor questionnaire survey - Results from the Swiss Childhood — View Citation

Rueegg CS, Gianinazzi ME, Rischewski J, Beck Popovic M, von der Weid NX, Michel G, Kuehni CE. Health-related quality of life in survivors of childhood cancer: the role of chronic health problems. J Cancer Surviv. 2013 Dec;7(4):511-22. doi: 10.1007/s11764- — View Citation

Rueegg CS, Michel G, Wengenroth L, von der Weid NX, Bergstraesser E, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Physical performance limitations in adolescent and adult survivors of childhood cancer and their siblings. PLoS One. 2012;7(10):e47944. — View Citation

Rueegg CS, von der Weid NX, Rebholz CE, Michel G, Zwahlen M, Grotzer M, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Daily physical activities and sports in adult survivors of childhood cancer and healthy controls: a population-based questionnaire s — View Citation

Schindera C, Weiss A, Hagenbuch N, Otth M, Diesch T, von der Weid N, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Physical activity and screen time in children who survived cancer: A report from the Swiss Childhood Cancer Survivor Study. Pediatr Bloo — View Citation

Strebel S, Mader L, Slama T, Waespe N, Weiss A, Parfitt R, Am Zehnhoff-Dinnesen A, Kompis M, von der Weid NX, Ansari M, Kuehni CE. Severity of hearing loss after platinum chemotherapy in childhood cancer survivors. Pediatr Blood Cancer. 2022 Sep;69(9):e29 — View Citation

Sunguc C, Hawkins MM, Winter DL, Dudley IM, Heymer EJ, Teepen JC, Allodji RS, Belle FN, Bagnasco F, Byrne J, Bardi E, Ronckers CM, Haddy N, Gudmundsdottir T, Garwicz S, Jankovic M, van der Pal HJH, Mazic MC, Schindera C, Grabow D, Maule MM, Kaatsch P, Kai — View Citation

Tonorezos ES, Barnea D, Cohn RJ, Cypriano MS, Fresneau BC, Haupt R, Hjorth L, Ishida Y, Kruseova J, Kuehni CE, Kurkure PA, Langer T, Nathan PC, Skeen JE, Skinner R, Tacyildiz N, van den Heuvel-Eibrink MM, Winther JF, Hudson MM, Oeffinger KC. Models of Car — View Citation

Waespe N, Belle FN, Redmond S, Schindera C, Spycher BD, Rossler J, Ansari M, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Cancer predisposition syndromes as a risk factor for early second primary neoplasms after childhood cancer - A national cohort — View Citation

Waespe N, Strebel S, Marino D, Mattiello V, Muet F, Nava T, Schindera C, Belle FN, Mader L, Spoerri A, Kuehni CE, Ansari M. Predictors for participation in DNA self-sampling of childhood cancer survivors in Switzerland. BMC Med Res Methodol. 2021 Oct 30;2 — View Citation

Weiss A, Kuonen R, Brockmeier H, Grotzer M, Candreia C, Maire R, Senn P, Stieger C, Rosenfeld J, Veraguth D, Kompis M, Scheinemann K, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Audiological monitoring in Swiss childhood cancer patients. Pediatr Blo — View Citation

Weiss A, Sommer G, Kasteler R, Scheinemann K, Grotzer M, Kompis M, Kuehni CE; Swiss Pediatric Oncology Group (SPOG). Long-term auditory complications after childhood cancer: A report from the Swiss Childhood Cancer Survivor Study. Pediatr Blood Cancer. 20 — View Citation

Weiss A, Sommer G, Kuonen R, Scheinemann K, Grotzer M, Kompis M, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Validation of questionnaire-reported hearing with medical records: A report from the Swiss Childhood Cancer Survivor Study. PLoS One. 2017 — View Citation

Weiss A, Sommer G, Schindera C, Wengenroth L, Karow A, Diezi M, Michel G, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Hearing loss and quality of life in survivors of paediatric CNS tumours and other cancers. Qual Life Res. 2019 Feb;28(2):515-521. — View Citation

Wengenroth L, Gianinazzi ME, Rueegg CS, Luer S, Bergstraesser E, Kuehni CE, Michel G. Health-related quality of life in young survivors of childhood cancer. Qual Life Res. 2015 Sep;24(9):2151-61. doi: 10.1007/s11136-015-0961-3. Epub 2015 Mar 18. — View Citation

Wengenroth L, Rueegg CS, Michel G, Essig S, Ammann RA, Bergstraesser E, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Life partnerships in childhood cancer survivors, their siblings, and the general population. Pediatr Blood Cancer. 2014 Mar;61(3):53 — View Citation

Wengenroth L, Rueegg CS, Michel G, Gianinazzi ME, Essig S, von der Weid NX, Grotzer M, Kuehni CE; Swiss Paediatric Oncology Group SPOG. Concentration, working speed and memory: cognitive problems in young childhood cancer survivors and their siblings. Ped — View Citation

Wengenroth L, Sommer G, Schindler M, Spycher BD, von der Weid NX, Stutz-Grunder E, Michel G, Kuehni CE; Swiss Paediatric Oncology Group (SPOG). Income in Adult Survivors of Childhood Cancer. PLoS One. 2016 May 23;11(5):e0155546. doi: 10.1371/journal.pone. — View Citation

Winther JF, Kenborg L, Byrne J, Hjorth L, Kaatsch P, Kremer LC, Kuehni CE, Auquier P, Michel G, de Vathaire F, Haupt R, Skinner R, Madanat-Harjuoja LM, Tryggvadottir L, Wesenberg F, Reulen RC, Grabow D, Ronckers CM, van Dulmen-den Broeder E, van den Heuve — View Citation

* Note: There are 65 references in all — Click here to view all references

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Long-term outcomes of survivors of childhood and adolescent cancer	Incidence and spectrum of various somatic and psychosocial outcomes including describing the cause-specific long-term mortality, the number of patients with second primary malignancies and somatic health effects, and describe medication use, mental health status, educational achievements, and health-related quality of life of childhood cancer survivors as assessed by questionnaires and data from the Swiss Childhood Cancer Registry.	Baseline medical information and questionnaire data collection among those who survived at least 5 years, follow-up data collection at regular intervals (+/- every 5 years, 40 years) afterwards.
Secondary	Risk factors of long-term outcomes of survivors of childhood and adolescent cancer	Association of long-term outcomes with risk factors like tumour, treatment modalities, and demographic characteristics as assessed by questionnaires and data from the Swiss Childhood Cancer Registry.	Baseline medical information and questionnaire data collection among those who survived at least 5 years, follow-up data collection at regular intervals (+/- every 5 years, 40 years) afterwards.

External Links

•   Swiss Childhood Cancer Registry
•   Swiss Childhood Cancer Survivor Study, SCCSS