9
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, Germany b Klinik fu ¨r Tumorbiologie, Abt. Psychoonkologie, Breisacher Str. 117, 79106 Freiburg, Germany c Med. Klinik u. Poliklinik A, Universita ¨tsklinikum Mu ¨nster, Albert-Schweitzer-Str. 33, 48129 Mu ¨nster, Germany d Universita ¨tskinderklinik, Abt. f. Pa ¨d. Ha ¨matol. 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:S1040-8428(02)00021-5

Psycho-Oncology in a united Europe—changes and challenges

Embed Size (px)

Citation preview

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.

References

[1] Spiegel D, Kraemer H, Bloom JR, Gottheil E. Effect of

psychosocial treatment on survival of patients with metastatic

breast cancer. The Lancet 1989;1989:888�/91.

[2] Fawzy FI, Fawzy NW, Hyun C, Elashoff R, Guthrie D, Morton

DL. Malignant melanoma*/effects of an early structured psy-

chiatric intervention, coping and affective state on recurrence and

survival 6 years later. Arch Gen Psychiat 1993;50:681�/9.

[3] Fox BH. A hypothesis about Spiegel et al.’s paper on psychosocial

intervention and breast cancer survival. Psycho-Oncology

1989;7:361�/70.

[4] van der Pompe G, Visser A, Garssen B. Adjustment to breast

cancer: the psychobiological effects of psychosocial interventions.

Patient Educ Couns 1996;28(2):209�/19.

[5] Garssen B, Goodkin KJ. On the role of immunological factors as

mediators between psychosocial factors and cancer progression.

Psychiatry Res 1999;85(1):51�/61.

[6] Cunningham AJ, Edmonds C, Jenkins G, Pollack H, Pollack G,

Warr D. A randomized controlled trial of the effects of group

psychological therapy on survival in women with metastatic

breast cancer. Psycho-Oncology 1998;7:508�/17.

[7] Edelman S, Lemon J, Bell DR, Kidman A. Effects of group CBT

on the survival time of patients with metastatic breast cancer.

Psycho-Oncology 1999;8:474�/81.

[8] Kuchler T, Henne-Bruns D, Rappat S, Graul J, Holst K, Williams

J, et al. Impact of psychotherapeutic support on gastrointestinal

cancer patients undergoing surgery: survival results of a trial.

Hepatogastroenterology 1999;46(25):322�/35.

[9] Goodwin P, Leszcz M, Ennis M, Koopmans J, Vincent L, Guther

H, et al. The effect of group psychosocial support on survival in

metastatic breast cancer. New Engl J Med 2001;345(December,

13):1719�/26.

[10] Miller G, Cohen S. Psychological intervention and the immune

system: a meta-analytic review and critique. Health Psychol

2001;20:47�/63.

[11] Cunningham AJ, Edmonds C, Phillips C, Soots K, Hedley D,

Lockwood G. A prospective, longitudinal study of the relation-

ship of psychological work to duration of survival in patients with

metastatic cancer. Psycho-Oncology 2000;9:323�/39.

[12] Meyer TJ, Mark MM. Effects of psychosocial interventions with

adult cancer patients: a meta-analysis of randomized experiments.

Health Psychol 1995;14:101�/8.

[13] Sheard T, Maguire P. The effect of psychological interventions on

anxiety and depression in cancer patients: results of two meta-

analyses. Br J Cancer 1999;80:1770�/80.

[14] Moorey S, Greer S, Watson M, Baruch JD. Adjuvant psycholo-

gical therapy for patients with cancer: outcome at one year.

Psycho-Oncology 1994;3:39�/46.

[15] Greer S, Moorey S, Baruch JD, Watson M, Robertson B, Mason

A, et al. Adjuvant psychological therapy for patients with cancer:

a prospective randomized trial. Br Med J 1992;304:675�/80.

[16] Everson S, Goldberg D, Kaplan G, et al. Hopelessness and risk of

mortality and incidence of myocardial infarction and cancer.

Psychosom Med 1996;58:113�/21.

[17] Andrey M, Bernhard J, Bischoff A, Dietrich L, Huerny C,

Kesselring A, et al. Communication skills training in oncology:

the swiss model. Psycho-Oncology (Suppl) 2001;10:S30.

[18] Sollner W, Maislinger S, De Vries A, Steixner E, Lukas P.

Oncologists’ ability to identify patient distress: development and

effects of a training course. Psycho-Oncology (Suppl)

2001;10:S31.

[19] Fallowfield L, Lipkin M, Hall A. Teaching senior oncologists

communication skills: results from phase I of a comprehensive

longitudinal program in the United Kingdom. J Clin Oncol

1998;16:1961�/8.

[20] Fallowfield L, Jenkins V. Effective communication skills are the

key to good cancer care. Eur J Cancer 1999;35:1592�/7.

[21] Fallowfield L, Jenkins V, Farewell V, Saul J, Duffy A, Eves R.

Efficacy of a Cancer Research UK communication skills training

model for oncologists: a randomised controlled trial. The Lancet

2002;359:650�/6.

[22] Jenkins V, Fallowfield L. Can communication skills training alter

physicians’ beliefs and behaviour in clinics? J Clin Oncol

2000;20:765�/9.

[23] Sachs L. Knowledge of no return-getting and giving information

about genetic risk. Acta Oncol 1999;38:735�/41.

[24] Finkler K. Experiencing the new genetics: family and kinship on

the medical frontier. Philadelphia: University of Pennsylvania

Press, 2000.

[25] Richards M. Families, kinship and genetics. In: Marteau T,

Richards M, editors. The troubled helix: social and psychological

implications of the new human genetics. Cambridge: Cambridge

University Press, 1996:249�/73.

[26] Sachs L, Taube A, Tishelman C. Risk in numbers: difficulties in

the transformation of genetic knowledge from research to people.

Acta Oncol 2001;44:445�/53.

[27] Decruyenare M, Evers-Kiebooms G, Denayer L, et al. Predictive

testing for hereditary breast and ovarian cancer: a psychological

framework for pre-test counselling. Eur J Hum Genetics

2000;8:130�/6.

[28] Dorval M, Farkas P, Schneider K, et al. Anticipated versus actual

emotional reactions to disclosure of results of genetic tests for

cancer susceptibility: findings from p 53 and BRCA1 testing

programs. J Clin Oncol 2000;18:2135�/42.

[29] Lerman C, Hughes C, Trock BJ, Myers RE, Main D, Bonney A,

et al. Genetic testing in families with hereditary nonpolyposis

colon cancer. J Am Med Assoc 1999;281:1618�/22.

[30] Lerman C, Narod S, Schulman K, Hughes C, Gomez-Caminero

A, Bonney G, et al. BRCA1 testing in families with hereditary

breast-ovarian cancer-a prospective study of patient decision

making and outcomes. J Am Med Assoc 1996;275:1885�/92.

[31] Evans D, Anderson E, Lalloo F, Vasen H, Beckmann M, Eccles

D, et al. Utilisation of prophylactic mastectomy in 10 European

countries. Disease Markers 1999;15:148�/51.

[32] Hopwood P. Psychological issues in cancer genetics: current

research and future priorities. Patient Educ Couns 1997;32:19�/31.

M. Keller et al. / Critical Reviews in Oncology/Hematology 45 (2003) 109�/117116

[33] Veronesi U, von Kleist S, Redmond K, Costa A, Delvaux N,

Freilich G, et al. Caring about women and cancer (CAWAC): A

European survey of the perspectives and experiences of women

with female cancers. Eur J Cancer 1999;35:1667�/75.

[34] Baider L, Peretz T, Kaplan De-Nour A. Effect of the Holocaust

on coping with cancer. Soc Sci Med 1992;34(1):11�/5.

[35] Baider L, Perez T, Kaplan de-Nour A. Der Einflub eines Traumas

auf die Bewaltigung von Krebs. In: Heim E, Perrez M, editors.

Krankheitsverarbeitung. Gottingen Bern Toronto: Hogrefe,

1994:117�/26.

[36] Baider L, Ever-Hadani P, Peretz T, et al. Transmission of

response to trauma? Second-generation Holocaust survivors’

reaction to cancer. Am J Psychiatry 2000;157:904�/10.

[37] Coates A, Porzsolt F, Osoba D. Quality of life in oncology

practice: prognostic value of EORTC QLQ-C30 scores in patients

with advanced malignancy. Eur J Cancer 1997;33:1025�/30.

[38] Sprangers MAG, Van Dam FSAM, Broersen J, Lodder L, Wever

L, Visser MRM, et al. Revealing response shift in longitudinal

research on fatigue: the use of the Thentest approach. Acta Oncol

1999;38:709�/18.

[39] Anderson RT, Aaronson NK, Wilkin D. Critical review of the

international assessments of health-related quality of life. Quality

of Life Research 1993;2:369�/95.

[40] Stone P, Richards M, Hardy J. Fatigue in patients with cancer. A

review. Eur J Cancer 1998;34:1670�/6.

[41] Corner J. Interface between research and practice in Psycho-

Oncology. Acta Oncol 1999;38:703�/7.

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