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Psycho-Oncology in a united Europe*/changes and challenges�
Monica Keller a,�, Joachim Weis b, Andrea Schumacher c, Barbara Griessmeier d,1
a Psychosoziale Nachsorgeeinrichtung, Chirurgische Univ.-Klinik, Im Neuenheimer Feld 155, 69120 Heidelberg, Germanyb Klinik fur Tumorbiologie, Abt. Psychoonkologie, Breisacher Str. 117, 79106 Freiburg, Germany
c Med. Klinik u. Poliklinik A, Universitatsklinikum Munster, Albert-Schweitzer-Str. 33, 48129 Munster, Germanyd Universitatskinderklinik, Abt. f. Pad. Hamatol. St. 32-4, Theodor-Stern-Kai 7, 60590 Frankfurt, Germany
Accepted 3 March 2002
Abstract
The paper provides an overview on the 11th scientific conference of the European Society for Psycho-Oncology (ESPO), which
took place in June 2001, at Heidelberg, Germany. The main topics discussed during the conference were: (1) the state of the art of
research on the effects of psychological interventions in cancer patients; (2) psychosocial aspects in the new field of cancer genetics;
(3) recent developments in Quality of Life research; (4) Psycho-Oncology from an European perspective; and (5) children and
cancer. The conference gave an impressive picture of the many achievements Psycho-Oncology in Europe has accomplished during
the last years, in the clinical and scientific domain. With recent biomedical innovations Psycho-Oncology is facing new challenges.
Despite these achievements limitations have become apparent. Identifying these limitations, future aims can be outlined. Among
these, there is the need for methodological refinement, as well as for proof of clinical relevance of research results, in order to narrow
the gap between research and practice.
# 2002 Published by Elsevier Science Ireland Ltd.
Contents
1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110
2. Psychological interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110
3. Psychosocial aspects in cancer genetics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 112
4. Psycho-Oncology in a united Europe*/cross-cultural issues . . . . . . . . . . . . . . . . . . 113
5. Recent developments in quality of life research . . . . . . . . . . . . . . . . . . . . . . . . . 114
6. Children and cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 114
7. Other topics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 115
8. Conclusion: comments and future aims . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 115
Reviewers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 115
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 116
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 116
Biography . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 117
�Report on the 11th scientific conference of the European Society for Psycho-Oncology (ESPO), June 13th�/16th 2001, Heidelberg, Germany
� Corresponding author. Tel.: �/49-6221-56-2723; fax: �/49-6221-56-5250
E-mail addresses: [email protected] (M. Keller), [email protected] (J. Weis), [email protected] (A.
Schumacher), [email protected] (B. Griessmeier).1 This report is dedicated to Professor Dr Christian Herfarth, Head of Surgery at the University of Heidelberg, 1981�/2001. We are grateful for his
longstanding, enthusiastic interest in Pyscho-Oncology. As an undisputed leader in the field of Surgery, Professor Herfarth’s remarkable support and
collaborative effort have always been greatly appreciated and we are thankful for his partnership with us working in Psycho-Oncology.
Critical Reviews in Oncology/Hematology 45 (2003) 109�/117
www.elsevier.com/locate/critrevonc
1040-8428/02/$ - see front matter # 2002 Published by Elsevier Science Ireland Ltd.
PII: S 1 0 4 0 - 8 4 2 8 ( 0 2 ) 0 0 0 2 1 - 5
Keywords: Psycho-oncology; Cancer genetics; Psychological intervention; Quality of life; Research methods
1. Introduction
For the first time since the European Psycho-Oncol-
ogy Society’s (ESPO) foundation in 1987, the conference
took place in Germany, organised by the three German
societies for Psycho-Oncology. Heidelberg, renowned
world-wide as a centre of excellence in basic and clinical
cancer research, was deemed an appropriate location to
attract European researchers in the field of Psycho-
Oncology. Nearly 400 participants from 32 different
countries attended the 3-day conference, which was
preceded by several pre-conference-workshops.
From its beginning no more than two decades ago,
Psycho-Oncology has made rapid progress towards a
distinct discipline in the clinical and scientific domain.
At the same time, it is considered an indispensable
component in comprehensive cancer care. In clinical
cancer services, Psycho-Oncology has greatly contribu-
ted towards improving the psychological well-being of
cancer patients and their families by developing and
refining adequate concepts of screening and diagnosis,
as well as treatment of the many psychosocial conse-
quences of cancer and its management across all stages
of the disease. In order to provide effective support,
Psycho-Oncology requires a strong interdisciplinary
orientation. Therefore, concepts of co-operation among
health care professionals have been established within
institutions and within the professional oncology socie-
ties. In the scientific domain, major efforts have
contributed to a thorough understanding of psycholo-
gical and social processes involved in coping with and
adjustment to a severe chronic disease, at both indivi-
dual and social systems levels. Refinement of research
methodology has produced major achievements, and
sound empirical data have been presented, which are
increasingly recognised by the scientific community.
The conference aimed to address some of the areas of
particular scientific interest in which substantial pro-
gress has been achieved during the last years. Distin-
guished speakers invited to give an overview on selected
topics were balanced with authors presenting results
from their recent research. The main topics chosen by
the scientific committee covered: (1) the state of the art
of research on the effects of psychological interventions;
(2) psychosocial aspects in the new field of cancer
genetics; (3) Psycho-Oncology from an European per-
spective, as suggested by the heading of the conference;
(4) recent developments in Quality of Life (QoL)
research; and (5) children and cancer. With the process
of Europe growing together at a fast pace, there is an
undisputed need for psycho-oncologists to enhance co-
operation among national societies and research groups.
In order to promote cooperation and European net-working, the conference should contribute to the
improvement of mutual exchange and to increased
knowledge about the varying conditions, as well as
structures how Psycho-Oncology is practised in Eur-
opean countries.
2. Psychological interventions
Since Spiegel et al. [1] as well as Fawzy et al. [2]
reported a significant effect of psychological group
interventions on survival as an outcome measure, there
has been increasing research interest in the evaluation of
psychological interventions and their influence on the
course of cancer has increased. Bert Garssen of the
Netherlands reviewed the recent research about therelationship between survival effect and group interven-
tions, which aimed to overcome some of the methodo-
logical weaknesses of the previous trials [3�/5]. Although
improvements have been made in research methodol-
ogy, the results, however, still give rise to scepticism.
A Canadian trial investigated the effect of a 35-
session, structured group intervention in 66 patients
with metastatic breast cancer, randomly assigned toeither the intervention or control condition [6]. An
Australian randomised trial studied the effects of a 12-
session cognitive-behavioural intervention in 122 wo-
men with metastatic breast cancer [7]. Five years after
randomisation, none of the studies could demonstrate
an effect on survival. The only predictors were the well-
known biological prognostic factors. Garssen men-
tioned one exception yielding an effect on survival:Kuchler et al. found a small but significant effect of
perioperative supportive counselling on survival in a
mixed sample of 272 surgically treated cancer patients,
although randomisation prior to surgery possibly re-
sulted in unbalanced distribution among groups [8].
Only recently published results of the Goodwin et al.’s
replication were not able to confirm Spiegel et al’s
findings of prolonged survival as an effect of supportive-expressive group therapy in women with metastatic
breast cancer [9]. When summarising the results of the
more recent research, all of whom were using sound
methods, there’s no convincing evidence that group
therapy exerts a measurable effect on the course of
cancer (authors’ amendment). Irrespective as to whether
or not psychological interventions affect length of
survival, the psycho-biological mechanisms involvedare largely unknown. The assumption of psycho-
neuro-immunological pathways mediating the mind-
body connection is emphasised by many psycho-oncol-
M. Keller et al. / Critical Reviews in Oncology/Hematology 45 (2003) 109�/117110
ogists and patients, but is unproven as yet. A recent
meta-analysis reported by B. Garssen on 59 intervention
studies of various chronic diseases yielded only modest
evidence to support the hypothesis of immunologicalresponse to psychological interventions [10]. Yet, it
would be premature to conclude that the immune system
is unresponsive to psychological interventions. Impor-
tant conceptual and methodological issues need to be
resolved before any definitive conclusions can be
reached.
There are some studies showing that moderating
variables such as patient’s motivation or the timing ofthe intervention may influence outcome. From results
derived from a recent study, Cunningham concluded
that a small, highly motivated minority among cancer
patients, those who become highly engaged in psycho-
logical work, possibly may benefit in terms of prolonged
survival [11]. As Garssen also postulated, there may be
some indication from other research that interventions
are most effective when administered to patients duringcritical events (e.g. diagnosis, recurrence) and times of
high distress [10]. What is needed in the future are large-
scale studies with rigorous methodology to obtain
conclusive results on the efficacy of such interventions
and on the mediating pathways involved. Garssen
pleaded for more attention to be drawn to interventions
aimed at changing health behaviour, including physical
exercise, if one is interested in survival effects. He left theaudience with the provocative question, whether survi-
val effects of psychological interventions are important
for investigators or for patients.
Apart from a disputed effect on the course of the
disease, what are the effects on patient’s QoL?
As stated by Steven Greer (UK), about one third of
cancer patients suffering from significant psychological
distress are in need of appropriate psychological inter-vention. There is strong empirical evidence derived from
a magnitude of controlled trials, as well as meta-
analyses, which demonstrates that psychological inter-
ventions improve cancer patients’s quality of life by
reducing psychological symptoms and distress, by
enhancing psychological adjustment, and by improving
functional adjustment and rehabilitation [12,13]. Six to
eight sessions usually are sufficient to improve patients’squality of life, not only short-term, but lasting over 3�/12
months [14,15]. Beyond this aforementioned evidence, it
is not known which type of intervention is best suited to
which patient. Therefore, there is a clear need for
comparative studies investigating the differential effects
of various interventions (e.g. cognitive-behavioural
versus supportive-expressive) on patient’s QoL.
Although results on differential effects are inconsistentas of yet, there is some evidence that the coping
mechanism of helplessness/hopelessness is related both
to impaired QoL and, perhaps, to shortened survival.
There is some indication derived from studies of several
chronic diseases to support this assumption. The con-
ference gave an impressive picture of the many achieve-
ments Psycho-Oncology in Europe has accomplished
during the last years [16]. Appropriate methods to alterthe coping response of helplessness/hopelessness need to
be developed.
The main gap, Greer stated, is that regardless of this
evidence, psycho-oncological support is available only
to a minority of cancer patients. In most European
countries, there is a lack of psycho-oncological units.
Recently, Psycho-Oncology has focussed on interper-
sonal relationships. This applies to the cancer patient’snext-of-kin and to the health professionals in charge of
the patient. There is accumulating empirical evidence to
illustrate the impact of doctor-patient communication
on patient’s psychological well-being, on adherence to
treatment protocols and on treatment-related side
effects. Patient’s preferences in favour of detailed and
sincere information further increase the demand for
effective doctor-patient communication. There is anincreasing awareness among psycho-oncologists regard-
ing the need to extend their scope of interventions aimed
to enhance doctor�/patient interaction. Improved psy-
chosocial competence among clinicians is expected to
benefit not only the doctors but the patients as well.
During the last years, interventions to enhance clin-
icians’ communication skills have been developed in
several European countries [17,18].Lesley Fallowfield (UK) is known for the develop-
ment and refinement of a highly ‘learner-centered’
approach that specifically aims to improve communica-
tion skills in experienced senior oncologists [19,20]. She
reported on results from a previous Phase I study
demonstrating a substantial benefit from the doctors‘
point of view, immediately after the course and after
three months [20]. However, there is no proof up to nowthat such subjective gain will transfer into the clinic, to
result in a benefit for cancer patients. Results from a
randomised intervention study including 160 oncologists
and more than 2.500 patients were presented by Fallow-
field. The research aimed to investigate whether an
intensive 3-day training resulted in objective effects on
oncologist’s attitudes and communication skills and
whether this effect resulted in any benefit perceived bypatients. Multiple outcome measures included doctors‘
attitudes and communication skills assessed by video-
taped patient consultations before and three months
after the training and patient’s satisfaction with the
interaction. Currently available results demonstrate
indisputable evidence of benefits for doctors as well as
for patients [21,22]. Unquestionably, Fallowfield’s am-
bitious work is a landmark study, in that it is the first todemonstrate that an intervention addressing oncologists
is effective in yielding measurable benefits for patients.
Notably, an approach specifically designed for experi-
enced oncologists’ needs is essential. This kind of
M. Keller et al. / Critical Reviews in Oncology/Hematology 45 (2003) 109�/117 111
research is highly demanding, since large sample sizes
are required and numerous methodological issues need
to be tackled.
3. Psychosocial aspects in cancer genetics
With the discovery of several gene mutations that
predispose to inherited cancer syndromes, like breast-/
ovarian (HBOC) and hereditary non-polyposis color-
ectal cancer (HNPCC), predictive testing is available to
identify asymptomatic gene carriers in families with
proven inherited cancer diseases. Although yet unpro-ven, it is hoped that individuals carrying the altered gene
benefit in terms of reduced cancer-related mortality due
to early detection and/or prophylactic procedures.
Among counselees, high expectations as to the benefits
prevail. Unlike other risk assessment in medicine, the
knowledge of one’s genetic status does not only affect a
single person but inevitably imposes information on
other members of the family, regardless of theirpreference to know or not to know. What is also new
and quite unusual in medicine, is that the dissemination
of test results within the family is up to the individual
receiving the gene test, which is associated with a variety
of communication issues. Individuals who are consider-
ing genetic testing for cancer have to face a new
responsibility that inevitably extends to other family
members. Since predictive genetic testing is closelyrelated to several basic human rights, ethical issues are
of paramount relevance, which are interwoven with
psychological aspects.
Whereas the role of inheritance in cancer is likely to
be overestimated by the public, Peter Propping, Ger-
many, noted that hereditary cancer syndromes only
account for a minority of breast and colorectal cancer
cases (i.e. 3�/5%). Some rare cancer types (e.g. multipleendocrine neoplasias) are mainly caused by germline
mutations. Genetic testing results in the splitting of a
whole family into carriers and non-carriers, which may
lead to profound consequences for family relations.
Geneticists are well aware of the many ethical and legal
risks, for example informed consent, right not to know,
and confidentiality issues. In order to minimise these
risks, geneticists have committed themselves to guide-lines in order to meet the basic ethical requirements.
Yet, it cannot be excluded that relatives may be
identified as obligatory carriers without their consent.
‘Medical advances have become strong powers in
cultural changes in the post-modern society’. From an
anthropologist’s perspective, Lisbeth Sachs of Sweden
thoughtfully commented on the social and cultural
implications when the family enters the ‘molecularage’. Concepts of familial disease give new meanings
to the family, as concepts of genetic inheritance tend to
reinforce the bonds that presumably had been lost in our
individualistic society, with a trend to replace biologic
bonds by those of individual choice [23]. As a result, we
are living in an era where a renaissance for the
importance of kinship relations has come into focus.Most importantly, her message was a call for raised
awareness of the profound impact that genetic testing
has on family relations and on family history, issues
which may be easily overlooked [24�/26].
With the opportunity to learn one’s genetic status,
healthy individuals at risk are confronted with many
dilemmas: deciding for or against genetic testing,
anticipating the consequences of a positive test resultfor the individual and the family, communication and
confidentiality issues. Finally, being a carrier necessi-
tates decisions to be made regarding risk management,
surveillance or prophylactic options. Under the heading
‘no motherless generation’ Daniela Hahn (Netherlands)
and her colleagues gave an impressive insight into the
many decisional problems which persons at risk and
their families are confronted with. Most likely, thecounselee’s perceived risk is related, to some degree, to
prior experiences with cancer in the family, frequently
resulting in strong identification with the relative’s fate.
Psycho-oncologists are faced with the challenge of
modifying and adapting their intervention methods to
the counselee’s specific requirements. The effect of
psychological counselling in the genetic context is best
conceptualised as an aid to clarify the counselees‘diverging and even contradictory motives and to accom-
pany their own process of decision making. This implies
that the counsellor’s attitude is neutral towards the
outcome, such as whether or not the person decides to
have testing or chooses for risk reducing surgery versus
surveillance [27].
Eveline Bleiker, the Netherlands, gave a comprehen-
sive overview on the current status of psychosocialresearch in cancer genetics. Among the main issues
addressed by researchers so far are motivation asso-
ciated with the acceptance of genetic testing and the
decision-making processes. Emotional aspects, such as
anxiety, are related to women’s health behaviour, for
instance adherence to preventative actions.
As far as can be concluded from the limited empirical
data on outcome after receiving a genetic test result, nocatastrophic reactions are expected [28]. Psychological
morbidity is not higher than in the general population
[29,30]. Distress appears to decrease irrespective of the
test result. To achieve certainty is commonly experi-
enced as a relief, even when the test turned out positive.
However, some results indicate a positive selection
towards individuals opting in favour of genetic testing
(as known from other hereditary conditions). Theuptake of prophylactic surgery (e.g. mastectomy and/
or oophorectomy) differs greatly among the European
countries: In the UK and the Netherlands, up to 50% of
BRCA-gene carriers opt in favour of ablative surgery
M. Keller et al. / Critical Reviews in Oncology/Hematology 45 (2003) 109�/117112
compared with less than 10% in Germany and the US
[31]. The controversial debate of the pros and cons of
prophylactic surgery stems from medical, psychosocial
and ethical perspectives. Scepticists are concerned aboutthe belief in definitively eliminating risks to one’s health
by simply removing all vulnerable organs. On the other
hand, recent studies suggest overall positive responses,
with the majority of women experiencing a substantial
benefit of having undergone mastectomy, by reporting
relief and a decrease in cancer-related distress. It is
crucial, however, that women are left freely to decide on
their own. Since there will not be a single solution thatsuits all women at high risk for HBOC, data from
qualitative and quantitative research are needed to
achieve an accurate understanding of the medical and
psychosocial conditions predicting women’s outcome.
The challenge Psycho-Oncology is facing in the new
molecular era relates first to providing and evaluating
appropriate interventions for counselees, particularly
those that specifically address the family’ s perspectivefrom a systemic view. In order to provide true informed
consent (and thus, the ability to make informed
decisions) for individuals at risk and their families,
interventions should include education, communication
issues and support. Second, since not all counselees need
professional psychological support, reliable predictors
indicating psychosocial distress/morbidity are needed to
properly identify a vulnerable subgroup in need ofpsychological counselling.
Future research of post-test outcome should use
extended follow-up intervals to gain insight into out-
comes in the long run, including the repercussions on
family relations. From a methodological viewpoint,
some of the specific issues under investigation are not
likely to be addressed by commonly used, standardised
measures. This applies to the subjective concept ofinheritance, the framing of one’s perceived risk, and
the meaning of the family’s history. Therefore, comple-
menting quantitative assessment with qualitative in-
depth research may lead to a more thorough under-
standing of the meaning of inherited disease [32].
4. Psycho-Oncology in a united Europe*/cross-cultural
issues
The state of the art of Psycho-Oncology in European
countries was investigated from two perspectives: Uwe
Koch, Germany, started by noticing an obvious lack of
knowledge on health care systems throughout Europe,
as well as the non-existence of any European data. This
applies also to the topic of Psycho-Oncology in Eur-
opean countries that has not been addressed until now.Starting from there, he was the first to present results
from a survey conducted with psycho-oncological ex-
perts (e.g. oncologists, psychologists) from 15 European
countries (out of 25 countries approached to partici-
pate), on the status of professional Psycho-Oncology in
terms of patient care and research. Among the respond-
ing countries, the southern and eastern countries clearlywere underrepresented compared with Northern and
Middle Europe. Little controversy existed as to the
conceptual assumptions: throughout Europe the experts
seem to share a common basic understanding of
concepts and practice of Psycho-Oncology. Specific
psycho-oncological services are available in almost all
countries, though mostly restricted to university hospi-
tals and cancer centres. Most countries share a commonground, with frequent complaints of financial shortage
and limited resources on top, followed by unsatisfactory
integration into the medical oncology system. Guide-
lines have been established only by a minority, as are
standardised screening and assessment procedures. Due
to different health care systems, a great discrepancy
regarding resources among the various countries is
observedWhat can be concluded from these data is a strong
need to establish networking and collaboration among
countries in order to support the lesser developed in
building up standards of psycho-oncological patient
care and research, as well as a need to foster mutual
exchange and co-operative research among European
oncologists. Sabine von Kleist, Germany, presented an
overview on the perspective of female cancer patients inEurope. The first European survey carried out in 1998
(funded by a pharmaceutical company) yielded results
from 13136 women out of 16 European countries [33].
Data were collected by self-administered questionnaires
and the response rate reached 30%. Seventy seven
percent of patients were diagnosed with breast cancer.
Beyond a variety of differences that could be attributed
to cultural issues and diverging health care systems,some common European trends were observed: young
women are more likely to be better informed and to
have easier access to information, whereas the needs and
concerns of older women (above the age of 60) were less
frequently adequately met. Delay of treatment is likely
to occur more often in older women. Women with
progressive disease are worse off than women in
remission, who have an option for cure. A generalfinding was overall poor knowledge of the availability of
professional sources of support. Compared to the
support received from family and friends, support
from specialists in oncology ranked highest in the
women’s opinion. These findings underline the impor-
tance of training in psychological skills for doctors and
nurses (see Fallowfield, above). As was highlighted
during the discussion, these results provide an excellentpotential for further evaluation and comparison among
European countries, that not only promise a substantial
gain of knowledge, but also could form the basis for
improvements in health care for women with cancer
M. Keller et al. / Critical Reviews in Oncology/Hematology 45 (2003) 109�/117 113
across European countries. Unfortunately, there are no
incentives for further comparison, which was equivo-
cally regretted by the audience. Continued evaluation of
data would be expected to bring forward the psycholo-gical care for women with cancer.
Since culture, to a great extent, is based on history,
Lea Baider (Israel) inspired the discussion on cultural
differences across Europe with conceptual considera-
tions dealing with the question whether past traumatic
experiences are passed on to the next generation. An
earlier report on the experiences of Holocaust survivors
affected with cancer is well known [34,35]. Followingthese reports, she elaborated on the concept of ‘non-
genetical’ (i.e. psychological) transmission of traumatic
experiences to the second generation survivors, aiming
at explaining mechanisms by which traumatic experi-
ences and their psychological effects are passed from one
generation to the other. Preliminary data were presented
from a study comparing Israeli breast cancer patients
who were second generation survivors (i.e. children ofHolocaust survivors) with patients without traumatic
events in their family’s past. Patients from the ‘survi-
vors’ group of breast cancer women and healthy
matched controls experienced greater psychological
distress compared with two control groups. Specifically,
symptoms indicative of posttraumatic stress disorder
(for instance, intrusive thoughts and memories) were
reported more frequently by patients from Holocaustfamilies. What can be concluded from the results is that
former traumatic experiences may be transmitted over
generations and reactivated through a recent threat to
one’s life and physical integrity. This is not restricted to
an individual’s history, but also the broader historical
background of an ethnic or religious group. Strong
traumatic experiences probably are passed from one
generation to the other even when they are only partlyamenable to conscious reflection [36].
5. Recent developments in quality of life research
Mirjam Sprangers, the Netherlands, acknowledged
the considerable achievements in QoL research during
the past decade. Progress is demonstrated by a variety of
standardised instruments with proven psychometricproperties based on a multidimensional concept of
health-related QoL. As QoL is recognised as an
important outcome measure, it is increasingly included
in numerous clinical studies, thereby fostering co-
operation among health professionals. Moreover, sub-
jective QoL has repeatedly proven to be an independent
predictor of survival [37]. A number of well-validated
and reliable instruments are available, with both generalmeasures and specific modules for various tumour sites,
treatment modalities and additional dimensions like
spirituality or fatigue. However, quantitative assess-
ments, as any assessment approach, bears unavoidable
limitations: results are applicable to a defined popula-
tion, and may not pay sufficient credit to the subjective
condition as experienced by an individual. A combina-tion of a quantitative and qualitative approach may
provide a more comprehensive picture of a patient’s
quality of life. From methodological and theoretical
perspectives, the major challenges which should influ-
ence the direction of future research are: (1) problems
arising from missing data, probably resulting in biased
results; (2) response shift, which refers to changes in
patient’s internal standards, values and the conceptua-lisation of QoL during the course of adjustment to
disease [38]. These changes most likely render a patient’s
assessments over time incomparable; [3] translating
statistically significant differences into clinically mean-
ingful results. Clinicians who rely solely on statistically
significant changes may overlook that these changes
might be of little importance for the patient and vice
versa.Researchers try to address some of these problems by
including proxy raters into QoL-studies. A more con-
ceptual approach is the development of theoretical
models in an attempt to predict changes in QoL taking
into account health status, personality factors and
adjustment process. Future research will show the
feasibility of integrating such models into QoL-studies.
Cross-cultural differences have to be taken into accountwhen applying QoL-measures to populations in differ-
ent countries. To an increasing degree, measures are
being used in numerous languages. However, merely
translating an instrument may mask the cultural differ-
ences, not consistent with an adaptation that is sensitive
to the specific cultural background [39]. Similarly, ethnic
minorities are likely to go unrecognised in most studies.
QoL topics have been extended in two symposia and apre-conference workshop. As one of the most interesting
aspects of QoL over the last few years, fatigue has
emerged as an important subdomain within the QoL
field with an increasing number of studies being
published [40]. Due to the diverse and interrelated
causes of fatigue, the specific physical, mental and
affective dimensions of fatigue in cancer patients are
not easily identified. Presently, a concise conceptualisa-tion of fatigue is needed and the methodological
approaches measuring fatigue should be improved.
6. Children and cancer
As the past four decades have seen considerable
progress in the treatment of childhood cancer, currentresearch in paediatric Psycho-Oncology focuses on long-
term psychosocial consequences of the disease and side
effects of treatment.
M. Keller et al. / Critical Reviews in Oncology/Hematology 45 (2003) 109�/117114
Christine Eiser (UK) gave an overview of studies into
the psychosocial effects of childhood cancer. Effects on
learning achievement, mental health and professional
carreers of former cancer patients were assessed; thetopic most looked at is self-esteem. Using standardised
measures, no significant differences could be demon-
strated when children with cancer were compared with
controls. However, greater differences were seen in
interviews. Eiser stressed the need for interventions to
help children cope with their experiences later in life.
Alain Di Gallo, Switzerland, presented an interesting
study on how adults integrated the experience of child-hood cancer in their personal biography. Former cancer
patients were asked to talk about their memory of their
illness. The analysis of these narratives showed that
good integration was positively correlated with retro-
spective perception of distress evoked by illness and
therapy and negatively correlated with fatalistic external
health locus of control. Barbara Griessmeier, Germany,
demonstrated the use of creative therapies as animportant tool in psychosocial care for children with
cancer. The therapeutic use of music, art and role play
can successfully help children to cope with painful
physical experiences and difficult emotional situations
caused by illness and treatment procedures. At the same
time, self-esteem and positive experiences are enhanced.
7. Other topics
Beyond the plenary sessions, parallel symposia on
both days offered the opportunity to present submitted
papers and to extensively discuss them with the audi-
tory. Out of nearly 200 submitted abstracts 15 symposia
were composed and a poster lunch was held on Thurs-
day. A detailed description of the many valuablecontributions would by far exceed the scope of this
report. What was most impressive was the generally
high scientific level of the contributions, among these
many well-designed prospective, controlled and increas-
ingly multi-centered studies thus delineating the con-
siderable achievements attained during the last years.
Research on the effects of psychosocial intervention was
represented with a range of excellent papers, as werevarying programs for professional training in ESPO
countries. Topics that are important to the daily
practice, such as symptom control, palliative care,
psychosocial aspects of high dose therapy, assessment
of patient distress and needs offered insight in the
variety of creative activities and commitment to pa-
tient’s well-being. All abstracts are available in a
supplemental issue of ‘Psycho-Oncology’ for thosewho are interested in more detailed information (Psy-
cho-Oncology, 2001, 10, Supl;.S1-S90. An online version
is available under www.interscience.wiley.com.).
Further, all plenary speakers were invited to submit
their manuscript to ‘Acta Oncologica’.
8. Conclusion: comments and future aims
The conference gave an impressive picture of the
many achievements Psycho-Oncology in Europe has
accomplished during the last years. A critical discussion,
together with some controversial debate (for instance,
referring to the major aims and effects of psychological
interventions) effectively contributed to rethinking ma-jor goals as well as directions for future research.
Psycho-Oncology is facing new challenges where inno-
vative biomedical changes necessitate a flexible and
appropriate response. Interdisciplinary co-operation
has greatly increased, mainly by the progress made in
QoL-research. However, along with these achievements,
limitations also become visible. With such limitations
identified, future aims can be most appropriately out-lined. First, there is an indispensable need to promote
multi-centered large-scale studies using sound metho-
dology, such as in the field of outcome research. In
order to narrow the gap between research and practice
and to assure clinically relevant results, there is a strong
need to promote mutual exchange and discussion [41].
Second, innovative change in methodology is needed to
improve clinical relevance of research, encompassing theneed for a creative variety of research methods. Ex-
cellent examples how to realise these aims have been
demonstrated during the conference. Lastly, it became
evident that these aims definitely need the restructuring
of the European association. During the conference,
important steps towards creating a structure that
effectively promotes European co-operation were taken,
transforming the former ESPO from an association ofindividuals throughout Europe into a federation of
national Psycho-Oncology societies. By the end of the
year 2001, the new federation has been constituted
under the name EFPOS (European Federation of
Psycho-Oncology Societies) and a preliminary council
constituted. For contact and information the official
address of EFPOS: Dr Peter Harvey, Department of
Clinical & Health Psychology, Ashley Wing Extension,S James University Hospital, Leeds, LS9 7TF, England.
Phone �/44-0113 206 5148. E-mail: peter.harvey@-
leedsth.nhs.uk.
Reviewers
Dr Penelope Hopwood, CRC Psychological Medicine
Unit, Christie Hospital, University of Manchester,
Wilmslow Road, Manchester, M20 4BX, UK.
M. Keller et al. / Critical Reviews in Oncology/Hematology 45 (2003) 109�/117 115
Professor J.C.J.M. de Haes, Afdeling Medische
Pyschologie AMC, Meibergdreef 9, NL 1105 AZ
Amsterdam, The Netherlands.
Professor Reinhold Schwarz, University of Leipzig,Abteilung fur Sozialmedizin im Inst. Fur Arbeits-und
Sozialmedizin, Reimannstrasse 32, D-04107, Leipzig,
Germany.
Acknowledgements
The organising committee gratefully acknowledges
the financial support by the German Ministry for
Health, the Deutsche Forschungsgemeinschaft (DFG),
the Ministry of Social Affairs Baden-Wurttemberg, the
Krebsverband Baden-Wurttemberg and the Else
Kroner-Fresenius Foundation Bad Homburg. It wasof essential importance for the realisation of the
conference.
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Biography
M. Keller, MD, specialised in Internal medicine with
longstanding clinical experience in medical oncology.
Additional specialisation in Psychotherapeutic Medi-
cine. Engaged in Psycho-Oncology for many years, with
broad clinical practice and research activities. Since
1998, head of the Psychosocial Care Unit at the
Department of Surgery, University of Heidelberg.
Main areas of scientific interest are family issues incancer, psychosocial aspects in cancer genetics and
gender differences in adjustment to cancer. Board
member in several national and European Psycho-
Oncology societies.
M. Keller et al. / Critical Reviews in Oncology/Hematology 45 (2003) 109�/117 117