Project News and Updates.

Latest CCI newsletter

The latest Childhood Cancer International newsletter is out!

ESMO/SIOPE Cancer in Adolescents and Young Adults Working Group

Learn more about the Cancer in Adolescents and Young Adults Working Group, a collaboration between ESMO and SIOPE to combine expertise for a group of patients that represents a unique constellation, patients who are neither adults nor children.

 

Socio-demographic impact of platinum-induced ototoxicity in long-term survivors of childhood cancer

PanCareLIFE researchers from EMC and PMC have published ‘Socio-demographic impact of platinum-induced ototoxicity in long-term survivors of childhood cancer’ (Curr Pediatr Res 2017; 21 (3): 470-479).

You can read the full open access publication here.

Objective: Childhood cancer survivors (CCS) treated with platinum-based chemotherapy are at risk of treatment-induced ototoxicity. To date, there is limited knowledge on the effect of ototoxicity on socio-demographic factors, the burden to obtain insurances and psychological distress in CCS.

Design: Of the 653 CCS with completed questionnaires, 54 survivors had been treated with platinum. Ototoxicity (Münster score ≥ 2b) data were retrieved from pure-tone audiometry. All survivors completed a questionnaire consisting of the Distress Thermometer (DT), measuring the severity of distress and was recoded to a 0 (no distress)-10 (extreme distress) scale. The Hospital Anxiety and Depression Scale (HADS) was used to study the psychological distress (a score ≥ 15 is indicative for clinically significant distress).

Results: Median age at diagnosis was 6.2 years (range: 0.01-17.8) and median follow-up time from end of treatment to questionnaire was 15.6 years (range: 3.2-43.7). There were no differences in attempts to obtain insurances, highest education achievement and (un) employment between platinum-treated survivors and non-platinum treated survivors. Among the 54 platinum-treated CCS, median HADS score of hearing impaired survivors (n=22 (median score: 4.5, range: 0.0-29)) was not significantly different from survivors without ototoxicity (n=32 (median score 5.5, range: 0.0-11, p=0.337)). Similarly, DT scores were not significantly different between survivors with or without ototoxicity (p=0.441). Compared to the 599 non-platinum treated survivors, median HADS and DT scores of platinum-treated survivors were not significantly different.

Conclusion: Based on this first, small study, we didn’t find differences between CCS who suffer from platinum-related ototoxicity and survivors without hearing impairment, suggesting that CCS with ototoxicity do not necessarily encounter more socio-demographic challenges and psychological distress than CCS without ototoxicity.

15th International Conference on Long-Term Complications of Treatment of Children and Adolescents for Cancer

PanCareLIFE was well represented at the 15th International Conference on Long-Term Complications of Treatment of Children and Adolescents for Cancer this week in Atlanta, Georgia. The conference focused on the exchange of innovative ideas among international medical and pediatric oncologists (including fellows and residents), nurse practitioners, oncology nurses, and other associated allied health professionals. This year’s symposium presented the latest scientific and clinical advances regarding the science and ethics of genomic testing.

The following were presented by PanCareLIFE researchers:

  • THE PANCARELIFE* CONSORTIUM: HEARING LOSS, INFERTILITY AND QUALITY OF LIFE IN EUROPEAN CHILDHOOD CANCER SURVIVORS – Julianne Byrne, Helen Campbell, Claudia Kuehni, Riccardo Haupt, Tomas Kepak, Jarmila Kruseova, Claire Berger, Jeanette Falck Winther, Flora van Leeuwen, Sophie Fossa, Alison Leiper, Victoria Grandage, Herwig Lackner, Maryna Krawczuk-Rybak, Anna Panasiuk, Arndt Borkhardt, Marina Kunstreich, Holger Cario, Eline van Dulmen-den Broeder, Gabi Calaminus, Anja Borgmann-Staudt, Uta Dirksen, Stefanie Hecker-Nolting, Antoinette am Zehnhoff-Dinnesen, Joanna Stefanowicz, Marry van den Heuvel-Eibrink, Dalit Modan-Moses, Thorsten Langer, Gabriele Strauss, Leontien Kremer, Kylie O’Brien, Desiree Grabow, Peter Kaatsch
  • FERTILITY STUDIES IN PANCARELIFE: A PAN-EUROPEAN CONSORTIUM STUDYING LATE EFFECTS OF CHILDHOOD CANCER – Marloes van Dijk, Marleen van den Berg, Julianne Byrne, Leontien Kremer, Helen Campbell, Claudia Kuehni, Vera Morsellino, Tomas Kepak, Jarmila Kruseova, Claire Berger, Sophie Fossa, Alison Leiper, Victoria Grandage, Flora van Leeuwen, Gabi Calaminus, Anja Borgmann-Staudt, Uta Dirksen, Dalit Modan-Moses, Jeanette Falck Winther, Kylie O’Brien, Desiree Grabow, Peter Kaatsch, Marry van den Heuvel-Eibrink, Eline van Dulmen-den Broeder
  • GENETIC DETERMINANTS OF GONADAL IMPAIRMENT IN FEMALE CHILDHOOD CANCER SURVIVORS: A PANCARE LIFE STUDY – A.L.F. van der Kooi, M. van Dijk, L. Broer, M. van den Berg, R. Haupt, K. Kepakova, J. Kruseova, C. Berger, F. van Leeuwen, S. Fössa, U. Dirksen, J.S.E. Laven, L.C. Kremer, D. Modan,  E. Clemens, P. Kaatsch, J. Byrne,  A. de Vries, A.G. Uitterlinden, E van Dulmen-den Broeder, M.M. van den Heuvel-Eibrink on behalf of the PanCareLIFE consortium
  • GENETIC VARIATION OF CISPLATIN-INDUCED OTOTOXICITY DURING CHILHDOOD CANCER TREATMENT: A PANCARELIFE STUDY – E. Clemens, T. Langer, L. Broer, A.G. Uitterlinden, B. Carleton, A.C.H. de Vries, C. Kuehni, R. Haupt , T. Kepak, J. Kruseova, J.F. Winther, L.C. Kremer, A.L.F. van der Kooi, D. Grabow, H. Binder, A. am Zehnhoff-Dinnesen, J. Byrne, P. Kaatsch, M.M. van den Heuvel-Eibrink and O. Zolk on behalf of the PanCareLIFE consortium
  • DEVELOPMENT AND VALIDATION OF A RISK MODEL FOR PREDICTING PLATINUM OTOTOXICITY IN CHILDHOOD CANCER PATIENTS: A PANCARELIFE STUDY – T. Langer, A. am Zehnhoff-Dinnesen, E. Clemens, L. Broer, A.G. Uitterlinden, A.C.H. de Vries, C. Kuehni, R. Haupt, T. Kepak, J. Kruseova, J.F. Winther, L. Kenborg, L.C. Kremer, A.L.F. van der Kooi, S. Hecker-Nolting, D. Grabow, H. Binder, J. Byrne, P. Kaatsch, M.M. van den Heuvel-Eibrink, O. Zolk, T. Paul, on behalf of the PanCareLIFE consortium
  • RISK FACTORS FOR NEGATIVE PSYCHOLOGICAL OUTCOME IN SURVIVORS AFTER CANCER TREATMENT IN CHILDHOOD – Kruseova J., Keslova P., Reichlova V., Smelhaus V., Kabickova E., Luks A., Capek V., Starý J., and Calaminus G.

EMC Team on Roparun

This May, PanCareLIFE resaerchers Anne-Lotte van der Kooi and Eva Clemens ran from Paris to Rotterdam to raise money for people who suffer from cancer. The Roparun is a relay race of approximately 520 km. Their team consisted of colleagues from the Department of Pediatric Oncology, friends and survivors. Approximately 25 people, including runners, cyclists, drivers, caterers, and medics participated on the run. They raised over 6,500 euro.

Latest Newsletter from LTFU Study

The Long Term Follow Up (LTFU) Study is the world’s longest running study of survivors of childhood cancer. In their latest newsletter, you can read about their recent work, including the EMPOWER study to promote breast cancer screening in women who survived childhood cancer.

.

19th PanCare Meeting

The 19th PanCare meeting was held 3 – 5 May 2017 in Lund, hosted by PanCareSurFup Coordinator Lars Hjorth. The meeting covered a range of topics, including psychosocial and socioeconomic issues after childhood cancer, developing recommendations for transitions and updates from the PanCare EU projects PanCareLIFE and PanCareSurFup. Peter Kaatsch (UMC-Mainz) and Julianne Byrne (BOYNE) gave an overview of PanCareLIFE, with updates on data checking, harmonisation and collection from Desiree Grabow (UMC-Mainz), Katerina Kepakova (UHB) and Tomas Kepak (UHB). PanCareLIFE work on fertility guidelines was also presented by Leontien Kremer (AMC).

Attendees of the 19th PanCare Meeting, Lund

 

Latest Newsletter from CCSS

The latest newsletter from the Childhood Cancer Survivor Study in the US is now available!

Validation of questionnaire-reported hearing with medical records: A report from the Swiss Childhood Cancer Survivor Study

PanCareLIFE researchers at the University of Bern have just published a new paper ‘Validation of questionnaire-reported hearing with medical records: A report from the Swiss Childhood Cancer Survivor Study’, funded in part by PanCareLIFE. You can read the full, open access article here.

Mar 2017 PanCareLIFE newsletter now available!

Our second newsletter is now available here.