Cancer Research in Switzerland - Krebsliga Schweiz

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Timmermann Beate | Prospective evaluation of late
effects and quality of life in childhood cancer after
spot-scanning proton therapy at the Paul Scherrer
Institute (OCS 01694-04-2005)
Proton therapy offers promising characteristics to reduce
the burden of radiation therapy. Especially children are
highly vulnerable to radiation injury. Details on the clinical
impact of physical characteristics of protons on the
outcome are still unknown. Therefore, all children treated
with proton beam therapy at the Paul Scherrer Institute
(PSI) in Switzerland were to undergo prospective evaluation
of quality of life (QoL) and treatment complications.
Reliable, well-established tools for evaluation of treatment
complications and quality of life were selected. The
registry for late effects of irradiated children collects all
data on radiation therapy in children. The forms were created
by the working group for paediatric radiation oncology.
It was agreed to collect all data on the children
treated at PSI at the head office in Münster (Germany).
Documentation consisted of data before therapy, 2 months
after completion of therapy and yearly up-dates thereafter.
For QoL, the Pediatric Quality Of Life (PEDQOL) instrument
was chosen as the questionnaires for parents
and children. The forms assessed different domains of
QoL, including autonomy, body image, emotional behaviour,
relation to friends and family and physical and cognitive
performance.
120 children were registered into the RiSK registry study.
Median age was 3.6 years (range, 1–18.3). The majority
of children had bone or soft tissue sarcomas (n=56) or tumours
of the CNS (n=40). Radiation doses ranged from
36 Gy to 75.8 Gy (med. 55.8). Predominantly mild acute
reactions were observed, except for skin or bone marrow
depression when simultaneous chemotherapy was applied
(n=6). Higher scaled late complications were reported in
lens (n=2) and brainstem (n=2). Brainstem complications
were only observed after predisposing events. No correlation
with treatment doses was found.
As to the PEDQOL, in 142 children in total 626 forms were
obtained, consisting of 142 basic information forms, 260
parental questionnaires, 135 children’s questionnaires,
and 89 parental forms for toddlers. In two-thirds of the
children, significant morbidity was reported already before
start of treatment. QoL seemed to be rated more
positively by the children as compared to their parents
and after 1 year even better as compared to their healthy
references. Children older than 3 years of age showed
improvement of QoL within 1 year after proton therapy.
In children with tumours of the CNS, QoL seemed to be
slightly more compromised as compared to children with
sarcomas.
First results after proton therapy are promising and suggest
high tolerance and limited treatment burden despite
relatively large doses of radiation therapy in a very young
patient cohort. The compliance of the participants and
their parents was high. To evaluate further details, larger
cohorts and longer observation time is needed. Therefore,
we suggest accompanying any innovative treatment
method with studies on late effects and QoL.
Project coordinator
PD Dr. Beate Timmermann
Westdeutsches Protonentherapiezentrum Essen
Universitätsklinikum Essen
Am Mühlenbach 1
D-45147 Essen
Deutschland
Phone +49 (0)201 723 18 01
Fax +49 (0)201 723 51 69
beate.timmermann@uk-essen.de
von der Weid Nicolas | Long-term outcome of
childhood cancer: Incidence and spectrum of late
effects (KLS 01605-10-2004)
The Swiss Childhood Cancer Survivor Study (SCCSS) is a
joint project of the Swiss Childhood Cancer Registry and
the Swiss Paediatric Oncology Group and is run at the
Institute for Social and Preventive Medicine of the University
of Bern. All known survivors of paediatric cancer diagnosed
in Switzerland received a postal questionnaire looking
at current quality of life, health status, education,
family situation and health behaviours. These data were
compared to data of the general population and published
in different scientific papers.
The aim of the SCCSS was to know, in general and in
many specific aspects, how survivors were doing, what
kind of late effects they suffered from, to detect them as
early as possible and to treat or alleviate them. Knowledge
about long-term toxicities would aid the design of newer
treatment strategies with the same efficacy and less morbidity.
Included in the SCCSS were all children and adolescents
diagnosed with a malignant disease in Switzerland between
1976 and 2003. We looked for current addresses in
the former medical files of the patients and through an Internet-based
search system. Survivors with established
addresses received at their home a comprehensive health
questionnaire in the years 2007–2010 with questions in
following domains: current quality of life, somatic and
psychological health, current medication, fertility/offspring,
current use of the medical system (physician and
hospital visits), health behaviours (drinking, smoking, use
of illegal drugs), socio-economic status and education
level.
This prospective cohort study is very important for both
patients and paediatric oncologists. It shows the spectrum
of potential late effects and their dynamics and will be
able to identify what risk factors are associated with what
late toxicities. In the same way, we think that it will be
possible also to demonstrate the beneficial effects of
more recent therapies, which are much more adapted to
the biological behaviour of the disease, sparing unnecessary
toxicity in good risk patients (“tailored therapy”, individualized
oncology). In the last 50 years, paediatric
cancer has moved from an almost always fatal to a usually
curable disease. It is therefore compulsory to early detect,
prevent, treat or at least reduce late toxicities in the majority
of survivors. Another crucial topic is the transition
from paediatric to adult medical care. This topic will be the