Project News and Updates.

PanCareLIFE features in FNM Newsletter

The March edition of the FNM newsletter includes a feature on PanCareLIFE. The article describes how the paradigm in childhood oncology has changed from acute care to cure cancer to chronic care, where there is a focus on cure but also on prevention of late effects and their lifelong, informed management. Lifelong management relies on systematic research in late effects, like that conducted in PanCareLIFE, as well as sophisticated systems of care transition for adult survivors and empowering survivors to co-manage their own care through initiatives like Together to Smile in the Czech Republic.

You can read more in Czech here.

Read our March 2018 newsletter!

Our latest newsletter is now out – have a look!

 

Save the Date! PanCareLIFE Final Conference

The PanCareLIFE final conference will be held 26 October 2018 in Paris – save the date!

Audiological monitoring in Swiss childhood cancer patients

PanCareLIFE researchers at UNIBE have just published a new paper ‘Audiological monitoring in Swiss childhood cancer patients’, funded in part by PanCareLIFE.

Pediatric Blood & Cancer, 65(3) e26877, DOI: 10.1080/08880018.2017.1323985

Abstract

Background

Full audiological monitoring is the best strategy to detect hearing loss early and to provide timely intervention in the absence of a clinical method of otoprotection. Full monitoring requires audiological evaluation before, and then during and after ototoxic cancer treatment. In a worldwide context of monitoring protocols that vary substantially, we analyzed the audiological monitoring of childhood cancer patients over the last decade across treatment centers in Switzerland.

Procedure

We retrospectively searched for audiological evaluations in all nine Swiss Pediatric Oncology Centers. We analyzed proportions of patients who had audiological monitoring and described type and timing of monitoring. We determined predictors of audiological monitoring using multivariable logistic regression and described time trends.

Results

We included 185 patients from the Swiss Childhood Cancer Registry diagnosed from 2005 to 2013 who had platinum chemotherapy and/or cranial radiation ≥30 Gray and who were alive at time of study. Less than half of children, 43%, had full audiological monitoring (before, during, and after treatment), while 72% were tested after cancer treatment. Nonstudy patients were less likely to have had monitoring in all phases of cancer treatment. Patients who received treatment with cisplatin or both platinum chemotherapy and cranial radiation were more likely to have had monitoring after treatment. Monitoring during and after treatment increased over the study period, but monitoring before treatment was insufficient in all time periods.

Conclusions

Our population-based study indicates that audiological monitoring is insufficient in Switzerland, particularly for nonstudy patients. Clinicians must become more aware of the importance of full audiological monitoring.

Survivorship and fertility on German TV

PanCareLIFE’s Anja Borgmann-Staudt from Charité – Universitätsmedizin Berlin was interviewed as part of a BR24 TV programme on fertility issues encountered by childhood cancer survivors.

Learn more about fertility education, starting from 1:00.

First CCI newsletter of 2018

Childhood Cancer International have published their first newsletter of 2018, and it’s packed with great stories from around the world!

PanCareLIFE is one of the stories featured – we’re delighted to work with CCI and to have a survivor representative join our meetings.

 

Fertility preservation press conference, Berlin

PanCareLIFE’s Anja Borgmann-Staudt from Charité – Universitätsmedizin Berlin participated in a press conference in Berlin about patient education regarding fertility and about payment for fertility preservation measures. Currently, insurers provide full coverage in Finland, France, Italy, Poland and Turkey, but not Germany.

 

 

9th PanCareLIFE General Assembly Meeting

Members of the PanCareLIFE consortium met in Mainz, Germany for the 9th PanCareLIFE General Assembly Meeting, 08 – 09 November 2017.

Now that the data has been cleaned and harmonised at the Data Centre in Mainz, our focus has moved to the planned analyses for fertility, ototoxicity and quality of life that we’ll undertake in the coming year. We also heard about progress in the development of fertility guidelines.

As we enter the final year of the project, we are also focused on publication planning and organising our final conference, to be held in Paris on 26 Oct 2018. If you are interested in the final conference, please contact Kylie O’Brien (kylie.obrien@pintailservices.com).

 

 

Some of the team took the opportunity to visit the Museum of Ancient Seafaring in the evening
(Left: Aimilia Tsirou (Childhood Cancer International), Katerina Kepáková (UHB), Tomas Kepak (UHB), Dalit Modan-Moses (Chaim Sheba Medical Center), Andrica de Vries (EMC), Alison Leiper (Great Ormond Street Hospital); Right: Ancient Roman ship)

PanCare Videos

PanCare is a multidisciplinary pan‐European network of professionals, survivors and their families that aims to reduce the frequency, severity and impact of late side‐effects of the treatment of children and adolescents with cancer.

Survivors play a very important role in the network, so the PanCare team has prepared a video explaining the importance of listening to survivors.
 

 

The team has also produced a video explaining why curing cancer is not enough, highlighting the impact of late effects on survivors of childhood and adolescent cancer.