Commentary of Pan-Eu meeting in Lund, Sweden Page 1 of 12
Meeting dates: 27-28 March 2008
Pan-European Meeting on Childhood Cancer Survivorship
Thursday 27th March, noon to Friday 28th March, noon, 2008, Lund, Sweden
Commentary provided by Julianne Byrne
PARTICIPANTS
NAME / COUNTRY / E-MAIL / INITIALSBardi Edit / Hungary / / EB
Beck Joern-Dirk / Germany / / JBE
Byrne Julianne / Ireland / / JBY
Bokkerink Jos PM / Netherlands / / JBO
Debling Desiree / Germany / / DD
Frey Eva / Austria / / EF
Garwicz Stanislaw / Sweden / / SG
Glosli Heidi / Norway / / HG
Haupt Riccardo / Italy / / RH
Jacobsson Ann-Marie / Sweden / / AMJ
Hjorth Lars / Sweden / / LH
Jakab Zsuzsanna / Hungary / / ZJ
Jankovic Momcilo / Italy / / MJ
Kazanowska Bernarda / Poland / / BK
Kremer Leontien / Netherlands / / LK
Lackner Herwig / Austria / / HL
Levitt Gill / UK / / GL
Loge Jon Havard / Norway / / JL
Moser Andrea / Austria / / AM
Pastore Guido / Italy / / GP
Rechnitzer Catherine / Denmark / / CR
Skinner Rod / UK / / RS
Sugden Elaine / UK / / ES
De Vathaire Florent / France / / FdV
Widing Eva / Norway / / EW
Zadravec Zaletel Lorna / Slovenia / / LZ
The meeting was held in the Akademiska Föreningen on the campus of the University of Lund, Lund, Sweden.
Meeting started after lunch at 1.00 pm on Thursday, 28th March, 2008. The three leaders – Lars Hjorth, Rod Skinner and Riccardo Haupt – introduced the agenda.
LH: Welcome. Slides of proposed agenda.
RH: Chair LESG of I-BFM. Started educational activities re long-term follow-up (LTFU), part of which is the Erice Statement. He hopes that this is the start of a new organization here in Lund.
RS: Thanks to all for coming. Round table introductions with brief background on everyone’s own centre and national groups involved in LTFU. Please make suggestions for areas to be covered at this meeting and for future work.
Commentary of Pan-Eu meeting in Lund, Sweden Page 1 of 12
Meeting dates: 27-28 March 2008
BRIEF INTRODUCTIONS
RS: Paediatric oncologist and BMT (bone marrow transplant) specialist in Newcastle, UK. Interested especially in renal toxicity among others. Chief editor of second edition of UK CCLG LTFU Practice Statement (2004), also interested in how LTFU is best carried out. There is much work to be done. Can we create a Pan-European collaboration to help with the work?
HL: paediatric oncologist from Graz in Austria, where Graz is one of the biggest centres, worked with ELTEC for many years.
AM: a paediatric oncologist working in the out-patient clinic in Graz.
DD: sends best wishes from Peter Kaatsch, they both work on the German Childhood Cancer Registry (DKKR). In 2006 an all-German cancer registry was set up. A position paper was written about the more than 40,000 survivors since 1980, some are now older than 42 years of age, and having to face problems of LE (late effects). In Germany they decided to focus on four topics. In addition to DKKR< the other aspects are LESS (a late effects surveillance system created by JBE). The other aspects are RiSK (LE of radiotherapy) and quality of life (QOL). The DKKR does the mailing for more than 7 current studies of LTS (Long term survivors). Currently one questionnaire manages to deal with the overlap between studies, so that survivors are not contacted too often.
JBE: paediatric oncologist from Erlangen, Bavaria. In 1989 was asked by the German Society of Paediatric Oncology to set up a nation-wide system for LE. He set up the methods used by general practitioners. He did a retrospective study of CNS toxicity with ELTEC. Also LE after sarcoma. He does not like the term “survivor”. In Germany they use the term “nachsorge” or after care. They have collected data on the main LE, especially cardiotoxicity, nephrotoxicity and hearing problems. The network now has more than 240 hospitals in Germany and Austria, with increasing numbers of general practitioners (GPs). The network is both horizontally and vertically integrated. The German Cancer Registry in Mainz provides a structure to investigators like the US CCSS. In the LESS system they have studied cardiotoxicity clinically and looked at the relevance of polymorphisms with Prof Wojnowski in Mainz. All investigators can participate.
LZ: Radiation oncologist at the Institute of Oncology at Lubljana in Slovenia. This is the out-patient department providing LTFU of childhood cancer survivors set up by Prof Jereb. Slovenia is very small, about 2 million people, with only one centre in Lubljana. LTFU is started when survivors are more than 16 and more than 3 years off therapy. They follow 800 survivors. The cancer registry was established in 1950, but there are problems with staff in LTFU, and especially in analyzing data on long-term sequelae.
MJ: from Monza, Italy, in the department founded by Prof. Masera. He chaired ELTEC for many years, caring for many aspect of LTS. In Italy, the Off Therapy Registry (OTR) was set up in 1980 and now has more than 10,000 survivors registered. He chairs OTR with RH. At the Erice meeting of 2006 he promoted the idea of a European network for the first time, and discussed the aspects of long-term care. The result was the Erice Statement, published in the European Journal of Cancer.
GP: paediatric oncologist in Novara, Piedmont, Northern Italy. Most of his time is spent in Childhood Cancer Registry of Piedmont, as an epidemiologist, on studies of late mortality, second malignancies and QOL. He is now chairman of the Epidemiology Committee of the Italian Association of pediatric Haematology/Oncology.
AMJ: is the research coordinator for the pediatric hematology-oncology group of the University of Lund.
BK: from Wroclaw in Poland, where she is chairman of the Polish paediatric solid tumour group. The LE group was created 3 years ago. So far they have little experience of patients with leukaemia. The regular epidemiology group is 8 years old. Poland has a small group studying second malignancies.
SG: retired paediatric oncologist, but still active. Last year at ESLCCC 2007, he presented work on late mortality and second malignancies. Here he represents the working group within NOPHO (Nordic Paediatric Haematology and Oncology group). He coordinates the joint group between ANCR (the Nordic Cancer Registry) and NOPHO. The cancer registry in the Nordic countries is quite old, having been started in 1943 in Denmark. Finland and Norway joined in 1953, Iceland in 1955 and Sweden in 1958. These are all population based registries used to follow-up survivors. They are now in the process of new studies on second malignancies and late mortality.
ZJ: From Budapest, she works in the Hungarian Childhood Cancer Registry set up by Professor Shuler. She is responsible for the registration of paediatric cancer patients, data collection, prepares documentation for international clinical studies, such as the ACCIS study.
EB: Paediatric oncologist in Debrecen, Hungary, the second largest city in Hungary. She spoke to the ELTEC meeting in Budapest in November on her work on nephrotoxicity, osteoporosis and cardiotoxicity research.
HG: Paediatric oncologist in Oslo, works with Nordic late effect studies.
EW: Paediatric oncologist from Oslo, here on behalf of the Norweigian Paediatric LE group, whose chairperson cannot attend due to having a baby. She is working on LTFU guidelines.
JL: Norwegian clinical psychologist working with research studies of cancer survivors for the last 15 years, especially Hodgkins disease, both adults and children in the Nordic countries.
FdV: Works in the Gustav Roussy Institute of the French National Institute of Health, with more than 20 years experience on second cancer and late mortality. Worked with Mike Hawkins 20 years ago on a cohort of LTS. Three years ago he tried to get a Pan-EU cohort going with Mark Little.
LK: Paediatric haematologist/oncologist, works at the Emma Children’s Hospital in Amsterdam, does research on cardiotoxicity. In Netherlands several years ago, the LATER collaborative was started.
We must distinguish between patient care, research and registries. We are tracing Dutch patients treated from 1965+ and extracting all patient files. Huge database. The research group decided to design a nationwide study, to see all patients once every 4 years. The advice received was that you have to do research, but you cant ask patients to keep on coming back for research studies. They pooled the research studies. There is also a Cochrane Childhood Cancer Collaboration (CCCC) started last year with the objective of systematically reviewing late effects studies, first on dx, and now on screening, and also on prognosis. The methodology is the same as for diagnosis and treatment. Started with evidence-based guidelines, and they could see where the evidence was lacking. It is important in the EU to collaborate and avoid overlap. The UK, Germany and NL are all developing similar evidence-based guidelines, but the recommendations must be country-specific.
JBO: Paediatric oncologist from Nijmegen, involved in LESG and ELTEC, only works with LE patients, including adults.
GL: Paediatric oncologist from Great Ormond Street Children’s Hospital (GOSH), has a specific interest in cardiotoxicity and models of care, especially transition issues. Does not want paediatricians to see adult patients. There is a large group of paediatric patients with problems, especially patients who had BMT or brain tumors.
CR: In Denmark over 30 years, born in France. A paediatric oncologist in charge of LE in Copenhagen for 10 years, now well established. Collaborating with others on research including NOPHO and EU. In Denmark people rarely relocate, and therefore can be traced, and will return to the treatment centre.
ES: Radiotherapist from Oxford. All RT have to be interested in LE since they are responsible for so many. She is the current chair of the CCLG (formerly UKCCSG) LE group. GL was the previous chair. Mike Hawkins cannot attend due to his mother’s illness. He heads the BCCSS, a questionnaire study of 14,000 survivors followed for up to 40 years.
JBY: Epidemiologist based in the Boyne Research Institute in Drogheda, Ireland. Formerly worked at the National Cancer Institute of the NIH in the US, was involved in the analysis of the Five Center Study and the Leukemia Follow-up Study, the first cohort (retrospective) studies of CCS. Interested in fertility and birth defects, hopes to be able to continue these interests in the Pan-EU study.
LH: Pediatric oncologist in Lund, interested in LE, which he inherited from SG, is chairman of Swedish LE group. Interested in nephrotoxicity.
RH: Gaslini Institute in Genoa, co-chair with MJ of the Italian OTR, recently funded by the Italian government to abstract treatment records, now done in 77%. Funded to establish FU guidelines in clinics. Now chairs ELTEC. Last November at the ELTEC meeting in Budapest the concept of a Pan-EU network was first discussed.
SLIDES
RS: CCLG LE Group has 22 members, multidisciplinary group, with epidemiological and statistical support. Two formal meetings every year. Links to other groups. The aims are to provide guidance, perform research to improve the evidence base, and to collaborate with international groups. Hope for more collaborators in specific areas. A wide variety of research interests facilitate studies in many areas including models of care. Information from clinical interaction with patients and families inform the guidelines. They have published studies, review articles, LTFU guidelines / practice statement, and information for survivors (‘After cure’). Specific studies on cardiotoxicity and nephrotoxicity. Have written a consensus document on fertility risks. Current study of pulmonary function after pulmonary RT in Wilms tumor. Future projects may include LTFU models, 2nd malignancies. In the UK the approach to LTFU is variable, the content is most important and how it is delivered is less important. Nurses are a valuable resource especially in patient and family education. Need to look at the medium and long-term future; the impact of late toxicity as survivors age; impact of the interaction of normal aging and treatment effects.
Question re FU, How much? Cancer Research UK (a charity) funds the CCLG, supports meetings and the organization, can’t count on them for funding for studies. Research studies need separate applications and funding is not guaranteed. Drug companies support guideline development. There is no government funding, only charity support. The NHS used to fund a ‘package of care’ from treatment to FU, this may be changing
Question re how many patients? CCLG is population-based, covers >95% of population. No UK-wide LTFU system, but occurs in all 21 primary treatment centres. The UK Registry is population-based, newly diagnosed patients. BCCSS cohort is run by Mike Hawkins. LTFU clinics are ad hoc, and depend on local interest and local expertise. The 21 centres are the same centres as CCLG centres in UK. They are the only ones allowed to treat children with cancer. All 21 centres liaise and collaborate with the Registry.
The working groups (WG) in the CCLG are mostly disease based, eg Wilms tumor (WT), now include all leukaemias, various other groups are included, such as BMT. Supportive care, etc, are all under the umbrella of CCLG. Meets twice yearly. Each group presents proposed new studies. Groups run new studies. All treatment protocols are supposed to come to LE Group for consideration of FU studies.
SG: The model is important – what and not how. The question is how can you be sure that what you recommend has been done. This is a question for every country to address and answer -- Audit. Who implements the recommendation and who is in charge of transition? It is very important to distinguish between research and care. Sometimes it is easier to do research.