Psycho-Oncology - 2018 - Holland - Psycho Oncology Overview Obstacles and Opportunities

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DOI: 10.1002/pon.

4692

PSYCHO-ONCOLOGY, VOL. 27: 1364–1376 (2018)

PSYCHO-ONCOLOGY: OVERVIEW, OBSTACLES


AND OPPORTUNITIES
JIMMIE C. HOLLAND
Chief, Psychiatry Service and Wayne E. Chapman Chair in Psychiatric Oncology;
Memorial Sloan-Kettering Cancer Center, 1275 York Avenue, New York, NY 10021, USA

SUMMARY
Worldwide, psychological and social issues in cancer were not the subject of scientific inquiry until the past two
decades. Since then, a new subspecialty of oncology has evolved, psycho-oncology. It addresses two dimensions
of cancer: the emotional responses of patients at all stages of disease, as well as their families and caretakers
(psychosocial); and the pyschological, social and behavioral factors that may influence cancer morbidity and
mortality (psychobiological). Obstacles to development have been the facts of small numbers of clinicians and
investigators worldwide and the few valid assessment instruments and research methods available to the biomedical
community. These obstacles are increasingly giving way to the louder demand of the public for maximal quality
of life in cancer care. Psycho-oncology is attaining subspeciality status by presently bringing a set of clinical skills
in counseling, behavioral and social interventions to oncology, by providing training curricula which teach basic
knowledge and skills in the area, and through creating a body of research and scholarly information about
clinically relevant issues in the care of patients with cancer. Since it is increasingly recognized that psychological,
social and behavioral variables influence treatment outcome, attention will likely to continue to increase. The field
must meet the challenges of the 1990’s in psychosocial care and availability of services, support for training
clinicians and investigators in psycho-oncology, and implementation of an exciting research agenda. The focus of
new research will encourage collaborative investigations combining biological and psychosocial variables, quality
of life research in clinical trials, controlled studies of psychotherapeutic, behavioral and psychopharmacologic
research, and crosscultural studies that will examine differences in prevention and detection, health care systems,
alternative therapies and meta analyses.

HISTORY AND RATIONALE these universal human responses to cancer are


critically important for two reasons. First, they
For centuries, cancer has aroused fear in individ- make it possible to examine changes in the social
uals throughout the world, representing a and psychological meaning of cancer in different
common disease for which no treatment existed parts of the world over time, as effective treat-
until the late nineteenth century. The fears were ments appeared and changed the prognosis of a
so extreme that the word cancer was not spoken particular type of cancer from totally fatal to
to the patient, as described so movingly by largely curable. This has occurred, for example,
Tolstoy in The Death of Ivan llyich (Tolstoy, with Hodgkin’s disease and testicular cancer in
1986). Humanistic and compassionate concerns the last 20 years. Now that it is probably curable,
for the comfort of patients were an informal part receiving a diagnosis of Hodgkin’s disease is a
of care, but the nursing and non-medical aspects very different experience today compared to prior
of care did not receive systematic attention or to the 1970s when the diagnosis was considered a
study until the last two decades. The psycho- death sentence. Second, an international perspec-
logical and social impact of cancer has been slow tive encourages the development of cross-cultural
to become the focus of scientific study, despite the studies, which can examine the emotional impact
fact that cancer can occur at any age and the fact of cancer on patients and their families and how
that psychological and social issues are an integral it is affected by national models of health care,
part of the care of all cancer patients and their cultural attitudes and religious beliefs. For these
families throughout the world. reasons, psycho-oncology within cancer medicine
From an international perspective, studies of uniquely addresses these issues, providing the

Originally printed in Psycho-Oncology 1992, Volume 1,


Issue 1, pp. 1-13. https://doi.org/10.1002/pon.2960010103

© 2018 by John Wiley & Sons, Ltd.


HOLLAND 1365

Table 1. Development of interest in psychosocial aspects of cancer

Year Cancer Psychosocial interest

1850-1900 Anaesthesia (1847) Cancer = death


Antisepsis Word not used
First cancer surgery
1900- Surgical excision First public education about
First radiation early signs
1930-1940 Increased biomedical research Increased education
National cancer societies Increased support to find cure
formed
1940s Nitrogen mustards Increased optimism
First remission leukemia folic Increased psychosomatic
acid antagonists concepts
Increased radical surgery Grief studies
1950s First cure by drug alone First psychological studies
(Choriocarcinoma, 1951)
1960s Increased survival Debate about telling
Increased combined modalities Peer support
Hospice programs C/L psychiatry

dimension of cultural influences on adaptation. especially in children and young adults. Figure 1
As a background to understanding these inter- outlines the impact on survival of childhood
relationships, it is helpful to trace the develop- tumors. These changes slowly began to alter the
ment of interest in the psychological, social and belief that cancer equalled death, and the
behavioral dimensions of cancer as it varies with optimism generated interest in psychological
reference to changing medical knowledge and issues other than dying and death (Table 2).
treatment (Table l). The present status of psycho- By the late 1960s, as survival improved, the
oncology within oncology, and its potential con- diagnosis of cancer was more frequently revealed
tributions to research, training and clinical care, to patients in some countries, particularly the
can be better understood within that context. USA. At about the same time in the UK, there
The belief that cancer was equated with death were increased efforts to provide more humane
was valid until the first effective treatment for care to patients dying with cancer, notably in the
cancer by surgery became possible in 1847, follow- beginning of the hospice movement. Prior efforts
ing the successful demonstration of ether as an had been mainly from religious groups in their
anesthetic. Antiseptic surgical techniques were traditional work of caring for indigent, dying
developed which enhanced the potential for effec- patients. Social forces, more openness in revealing
tive treatment of early, locally contained cancer. the diagnosis, increased concern for d y i n g
For the first time, education of the public about patients and enlightened public concern about
the warning signals of cancer became important to quality of life during chronic, serious illness
encourage early detection and to influence the slowly began to direct more concerted attention
fatalistic attitudes of both doctors and patients toward these humanistic and supportive aspects of
about cancer. Bt 1912, radiotherapy had begun to care. In addition, evidence of the link between
be used in Europe as a treatment for cancer. In environmental exposures and cancer, particularly
1950, chemotherapy was added as a modality for cigarette smoking gave new impetus to examining
cancer treatment with rapid development of the role of psychological and behavioral factors in
several highly effective anti-cancer agents. During cancer prevention.
the 1960s, multimodal therapy, combining these Also during the late 1960s, there was greater
three treatments with immunotherapy, began to interest in the psychological and supportive
have a significant impact on the survival statistics, aspects of cancer care by oncologists, nurses,
1366 PSYCHO-ONCOLOGY OVERVIEW

Figure 1. Progressive improvement in survival of children with solid tumors, 1940-1980. Proportion surviving two years from
diagnosis. Data from multiple sources are shown relative to the chronology of the general applications of the 3 principal
therapeutic modalities to the tumors of children. Reproduced by permission from Hammond, D. Progress in the study, treatment
and cure of the cancers of children, in: Burchenal, J. H. and Oettgen, H. F., eds., Cancer: Achievement, Challenges, and
Prospects for the 1980s, Vol. 2, Qrune & Stratton (1981).

Table 2. Factors contributing to greater emphasis on social science methods were poorly understood by
psychological aspects of cancer biomedical scientists. This led some scientists,
inappropriately, to assume that the potential for
Societal changes in attitudes toward cancer with shift toward rigorous research in the psychological and
less pessimism
behavioral aspects of cancer was limited. This
Greater attention to palliative and supportive care through attitudinal barrier and the absence of established
hospice movement working ties between the researchers in biome-
Increased frequency of revealing cancer diagnosis to patient dical and social sciences slowed the development
of effective collaboration between these two
Increased concern for patient autonomy and human aspects of
care
groups. Progress began from the 1970s, particu-
larly in Europe and North America, where
Recognition of psychological and behavioral influences in increased attention was given to the two most rel-
cancer risk, early detection, and prevention evant psychosocial issues in patient care at that
Emergence of consultation-liaison psychiatry and health time: delay in seeking consultation for a suspi-
psychology with their emphasis on psychological care of cious symptom of cancer and treatment com-
medically ill pliance. Behaviors related to early detection of
cancer and avoidance of exposure to environ-
mental carcinogens, particularly those from
social workers, social scientists, psychologists and occupational sources, became important. The
psychiatrists, and research was begun on these association between cigarette smoking and lung
issues. However, appropriate assessment tools for cancer was a major impetus to the study of a
scientific study of largely subjective phenomena behavior change.
were not available; they either had to be modified
from those developed for other purposes or devel-
Early developments in psychological research
oped de novo. Investigators with knowledge of
both clinical aspects of cancer and psychosocial In the period after World War II, the first syste-
research methods were few. The biological assess- matic research into the psychological aspects of
ment methods of ‘hard science’ did not apply and cancer began in the USA (Table 3). In 1950,
HOLLAND 1367

Table 3. Early contributions to psycho-oncologic research (1950-1980)

Year Name Director Place


1950- Psychiatric Research Unit Sutherland Memorial Sloan-Kettering, New York, USA
(1950-1959)
Psychiatry Service Mastrovito
(1960-1977)
(1977-present) Holland
1967- St Christopher’s Hospice Saunders London, UK
1970- Psychosomatic Unit Feigenberg Radiumhemmet, Karolinska, Stockholm,
(1970-1982) Sweden
Psychosocial Unit Bolund
(1982-present)
1971-1989 Faith Courtauld Unit Greer King’s College, London, UK
(1971-1979)
(1979-1989) Pettingale
1974- International Working Group on Dying, Outgrowth of International
Death and Bereavement ‘Ars Moriendi’
1976- Psychiatry Committee, Cancer and Leukemia Holland National Cancer Institute, USA
Group B
1977-1987 Psychosocial Collaborative Oncology Group Schmale National Cancer Institute, USA
1977- EORTC, Quality of Life Committee and Van Dam European: The Netherlands
Dutch Cancer Institute
1978-1988 Project Omega Weisman Massachusetts General Hospital, Boston, USA

Sutherland, a psychiatrist who became interested for training professionals in supportive care and
in cancer, developed the Psychiatric Research for research studies in symptom control. Three
Unit at the Memorial Sloan-Kettering Cancer years later in 1970, Feigenberg, a Swedish
Centre in New York. His group reported the first psychiatrist, became interested in the psycho-
papers on reaction to mastectomy and colostomy logical care of patients at the Radiumhemmet,
(Sutherland et al., 1952; Bard and Sutherland, Karolinska Institute in Stockholm. The Psycho-
1955). The group continued under Mastrovito somatic Unit was established in 1970, becoming
(1960-1977) and since 1977 by Holland. Their the Psychosocial Unit under Bolund in 1982. In
work continues to explore the epidemiology of the 1971, the Faith Courtauld Unit was formed
psychiatric and psychological comorbidity which at King’s College in London under Greer and
occurs by site, stage and treatment of cancer. Pettingale and focused on psychological research
While there was no formal group at the in cancer.
Massachusetts General Hospital in Boston, social Also in the 1970s, several organizations contrib-
worker, Abrams, together with a psychiatrist, uted significantly to collaborative research and
Finesinger, reported changes over time in the training despite not representing discrete geo-
communication of patients with cancer, which graphic units. The International Working Group
constituted an important contribution to psycho- on Dying, Death and Bereavement began in 1974
logical observations (Abrams and Finesinger, as a cross-cultural group interested in education in
1991). psychosocial aspects of advanced and terminal ill-
In 1967, Cicely Saunders opened St ness. In the late 1970s, two collaborative clinical
Christopher’s Hospice in London, a hospice that trials groups included research on psychosocial
focused on improving symptom control and pal- aspects and quality of life in the areas covered by
liative care of terminally ill patients including their biomedical research. The Cancer and
those with cancer. In addition, it became a center Leukemia Group B (CALGB), funded by the US
1368 PSYCHO-ONCOLOGY OVERVIEW

National Cancer Institute (NCI), formed world, and few available training programs, espe-
the Psychiatry Committee in 1976, chaired by cially those teaching research methodology. In
Holland, as part of its expanded multimodality addition, the diverse backgrounds of clinicians
effort. At about the same time, the US National and investigators make the assimilation of effec-
Cancer Institute funded the multicentre Psycho- tive collaboration more difficult. The field is,
social Collaborative Oncology Group (PSYCOG) nevertheless, growing and advancing.
under Schmale’s leadership. The subspeciality involves professionals from
In Europe, van Dam expanded his psycho- diverse disciplines and medical specialties who
logical research interests in cancer at the Dutch are using their clinical observations, unique
Cancer Institute in Amsterdam to develop a investigative methods, and expertise gained in
Quality of Life Clinical and Research Committee their various disciplines and applying them to
within the European Organization for Research in. cancer. These individuals have joined the medical
the Treatment of Cancer (EORTC). This has been oncologists, radiotherapists and surgeons, who
a potent force in improving psychometric assess- have primary responsibility for the care of cancer
ment and research into quality of life. With patients, in developing a better awareness and
Aaronson, these efforts culminated in the estab- understanding of the psychological, social and
lishment of a World Health Organization Collab- behavioral dimensions of cancer and their man-
orating Center in Quality of Life Measurement. agement. Psychiatry, social work, psychology and
For a decade, beginning in 1978, Weisman nursing in particular have contributed to the
headed Project Omega at the Massachusetts methodological and clinical knowledge and exper-
General Hospital in the USA and together with tise. The psycho-oncologist who collaborates with
Worden contributed to conceptual approaches traditional oncologic specialists offers a perspec-
and research methods in cancer (Weisman, 1979). tive and expertise that can contribute substantially
During the 1980s, national and international to clinical care, research and training in oncology.
cancer societies actively began to foster the
development of psychosocial and quality of life
research, contributing to the growth of the pro- Objectives
grams currently in operation. The field widened to The objectives of psycho-oncology, identified by
accommodate more centers devoted to research-
individuals from the major oncologic special-
ing quality of life in clinical trials, psychological
ties and disciplines, are listed below:
reactions and management, and psychological
and social factors influencing survival. (i) to foster the education and training of a
group of clinicians and investigators whose
special expertise is identified as psycho-
Definition
oncology, and whose special training iden-
In 1992, the interest in psychological, social and tifies them as psycho-oncologists;
behavioral issues of cancer has led to defining a (ii) to foster concern for integration of psycho-
subspecialty within oncology. Although known as logical care into the total care of all
psycho-oncology in the US, the term psychosocial patients with cancer, at all levels of illness,
oncology is preferred throughout most of Europe. and of their families, by all health pro-
Psycho-oncology is concerned with two psycho- fessionals in oncology;
logical dimensions of cancer: (iii) to develop training curricula in psycho-
oncology which contain a common core of
(i) the emotional responses of patients at all information relevant to all professionals,
stages of disease, their families and care- and specific components to address the
takers (psychosocial); particular educational needs of specific
(ii) the psychological, behavioral and social
oncologic disciplines (oncologist, nurse,
factors that may influence cancer morbidity social worker) to assure psychological prin-
and mortality (psychobiological). ciples of good care are incorporated into
It is a new field, less than 20 years old, in which total care;
assessment tools are still in the process of develop- (iv) to foster study of psychological, social and
ment. There is only a small number of scattered behavioral factors in cancer prevention
groups of clinicians and investigators in the and detection, and to explore the impact of
HOLLAND 1369

psychological, social and behavioral interfaces of psycho-oncology are with the follow-
factors on survival; ing: (i) the clinical disciplines (surgery, medicine,
(v) to foster cross-cultural research in which pediatrics, radiation, rehabilitation), for clinical
the universal stresses of cancer are studied care; (ii) epidemiology, cancer control and pre-
in relation to the influences of cultural vention, for behavioral, psychological and social
factors in adaptation; aspects of prevention, detection and influences on
(vi) to encourage controlled trials of, survival; (iii) pharmacology, for research in
psychotherapeutic, behavioral and psychotropic drugs to reduce distress; (iv) the bio-
psychopharmacologic interventions, singly logical sciences, for examining the influence of
and combined, for control of distress in psychological, social and behavioral variables on
patients stratified by disease site, stage and cancer morbidity and mortality; (v) bioethics, for
treatment; humanistic and spiritual issues; (vi) palliative and
(vii) to heighten awareness of the psychological supportive care, for its psychosocial aspects; (vii)
and social problems and their management clinical trials research and clinical decision
which are relevant to patients receiving making, for the quality of life dimensions in
active treatment, palliative and terminal outcome research.
care, and patients who have successfully One result of the boundaries and interfaces of
completed treatment (survivors); psychosocial issues with every area of oncology,
(viii) to give attention to humanistic, ethical and and the relatively recent development of a specific
spiritual values in patient care, especially body of knowledge and a research data base, is
as they relate to terminal decisions, and as that at each interface, psychological and social
they pertain to the rights of patients being issues could be incorporated as components of the
treated by experimental protocols; other area (e.g. epidemiology incorporating
(ix) to study the psychological stresses on behavioral aspects, or palliative care incorpor-
health care professionals who provide ating psychosocial aspects). Some would argue
oncologic care and to study means of that there is no rationale for maintaining psycho-
avoiding an adverse impact on their well- logical and social issues in a separate domain.
being and on the quality of care they While there is merit in encouraging psychosocial
render; and quality of life concerns as part of other areas,
(x) to encourage quality of life as an outcome there remains, nevertheless, a strong argument for
variable in clinical trials research, as a way maintaining the central focus in a single area. For
of improving information provided to the present, in order to achieve parity with older
patients in making treatment decisions; established oncologic disciplines, it is necessary to
(xi) to foster the concept of broad treatment retain all facets in the one subspecialty to assure
goals which include quality of life and well- the development of a specific group of clinicians
being, and seeking to attain a disease-free and investigators who are well trained in and
state that includes achievement of func- devoted to progress in these issues in cancer. In
tional outcome in the major domains of turn, this group of professionals, whose major
life (rehabilitation); clinical work and research address this domain,
(xii) to advocate for resources designed to will be better able to draw attention to the import-
reduce cancer risk and to promote optimal ance and application of psychosocial principles in
rehabilitation and survival at the local the care of all cancer patients.
(hospital/clinic), community, state, There have been many important contributions
national and international levels, with from the traditional oncologic specialists, particu-
adequate access of all persons to these larly adult and pediatric oncologists. However,
resources. these individuals have usually devoted only a part
of their time to psychological concerns, main-
Groups of individuals working in particular taining their primary identification elsewhere (e.g.
aspects of psycho-oncology usually form natural medical oncology, surgery), while continuing to
alliances in cancer centers which result in collab- manifest interest in the psychological aspects of
orative ties. These ties represent the specific areas care. The professionals who have devoted all their
in which psycho-oncologic issues interface and time to this effort have been primarily from
overlap with the traditional specialties. The major behavioral and mental health disciplines (psychia-
1370 PSYCHO-ONCOLOGY OVERVIEW

trists, psychologists, social workers, nurses) and gral ties to psychosocial issues (e.g. pain control).
the social sciences (sociology and anthropology). Some are incorporated in supportive care pro-
This cadre of individuals constitutes an important grams which espouse symptom control of all
presence in cancer centers whose goal is to assure types, such as the Palliative Care Unit developed
that all health professionals directly engaged in by Mount in Montreal. The important contri-
the care of cancer patients (physicians, nurses, butions to pain control by Ventafridda and Foley,
social workers, technicians) are able to recognize as well as the palliative and supportive care effort
distress and psychiatric disorder.s and can apply under Saunders and Twycross, overlap with
appropriate management principles. Skills in con- psychosocial issues of patients with advanced and
ducting the sensitive interpersonal communi- terminal illness. Psycho-oncology programs are
cations with patients and families (e.g. how to now being developed for the first time in many
present the diagnosis and how to convey a poor regions. The program in Budapest under Muszbek
prognosis) are part of the purview as well. The at the National Institute of Oncology is an
psycho-oncologist ideally is personally engaged in example.
the care of patients, their families and their care- The composition of the staff on these programs
givers, but is also the person identified to teach varies. The staffing is usually multidisciplinary
these principles and skills to oncology staff. and may include a psychologist, social worker,
psychiatrist, nurse, or clergy with consultation
from the unrepresented disciplines on the primary
team as needed. Some programs depend heavily
CURRENT STATUS on volunteers, who give important psychological
and practical support to patients, especially in
The development of psycho-oncology to the status North America. The Hope and Cope Program in
of a subspecialty is reflected by the fact that its Montreal, developed by Kussner, and the Patient-
activities can now be outlined in four broad areas: to-Patient Volunteer Counseling Program at
identification of psycho-oncology as a core part of Memorial Sloan-Kettering in New York are
the services offered in patient care; growth of edu- examples.
cational and training programs; research In terms of specific programs, several are
specifically addressing psychosocial issues; and worthy of note, both as models and for their con-
publications of research and scholarly papers in tributions to this new subspecialty. The Psycho-
the field. logical Medicine Research Group at the Royal
Marsden Hospital under Greer had been focused
Clinical Programs on developing a specific psychological therapy
program to improve quality of life and on evalu-
The present professional status of psycho- ating this therapy in clinical trials. Greer and
oncology can be judged, in part, by its represen- Watson are also researching the measurement of
tation and function within oncology units and various coping responses to cancer and their con-
cancer centers. Most centers and divisions have an tribution to survival. The group in Switzerland,
identified staff member or members who are originally started by Meerwein and now under by
responsible for providing psychological and social Hurny, has pursued similar goals. Maguire at
support. The units vary from a single individual, Manchester has been active in the training of
who can request the help of other professionals, doctors to improve communication with patients.
to a team providing a broad array of services Achte has provided both research and clinical
designed to assist patients with significant distress observations in cancer over m a n y years in
or overt psychiatric disorders, including support Helsinki. Also outstanding for their singular con-
for their families and for the staff. There are only tributions have been Kerekjarto, in Hamburg;
a few centers in the world that have well devel- Zittoun, a hematologist in Paris; Razavi in Brussels;
oped psycho-oncologic programs incorporating and, DeNour and Baider in Israel.
research and training: the Royal Marsden Hos-
pital in London; the Memorial Sloan-Kettering in
New York; and the Jules Bordet Institute in Education and training
Brussels. Many outstanding programs are largely Role of societies. Several organizations in
dedicated to a single aspect of support, with inte - Europe and North America have contributed to
HOLLAND 1371

the early professional development of psycho- fessionals to counsel patients with chronic
oncologists. The European International Psycho- diseases, including cancer. The Foundation sup-
somatic Study Group, and in France, Psychology ported five Fellows in 1989 and six in 1990; one
and Cancer, each provided early networks study- international Fellow is appointed each year. The
ing cancer from different, but important perspec- International Pollin Fellow in 1989, Die-Trill,
tives. The German Psychosocial Postcare Unit developed a curriculum for medical crisis coun-
and Training Center was an early proponent of selling in oncology. The Foundation has also sup-
training. The British Psychosocial Oncology ported four national conferences (in 1989, 1990,
Group has been a significant force since 1983, 1991 and 1992) to develop guidelines for training
holding regular meetings and publishing mono- in medical crisis counselling.
graphs which have represented pioneering efforts The Canadian Psychosocial Oncology Society
in the field. A psychosocial society has developed (CAPO) was formed in 1986. The second WHO
in Italy as well as an active organization of Collaborating Center for Quality of L i fe
psychologists interested in studying these issues of Research, located in Winnipeg under Olweny, was
cancer in Europe. Growing out of the efforts opened in 1990.
within the EORTC network of psychosocial clini-
cians and researchers, the European Society for Conferences. Evidence of a subspecialty status
Psychosocial Oncology (ESPO) was formed in is also determined by the number of educational
1986. Under Zittoun as its first President, it has meetings occurring annually. In North America,
enhanced both clinical teaching and research in the first conference that brought together the few
Europe by its conferences and collaborative investigators in psycho-oncology was held in 1975,
efforts. which resulted in a monograph (Cullen et al.,
T h e International Psycho-oncology Society 1976). The American Cancer Society (ACS), and
(IPOS) was formed in 1984 as a recognition of the especially its California Division, saw the need for
need for communication among the small scat- support and encouragement of this emerging
tered groups with interests in psycho-oncology. It subspecialization in the early 1980s. The ACS has
has served as a source of international exchange sponsored three workshops (1982, 1984, 1989),
through a newsletter and has encouraged inter- which produced monographs that were bench-
national training opportunities for psychosocial marks in the field (American Cancer Society,
researchers to study in different countries and to 1982; 1984; 1991). The first addressed the goals in
learn new clinical and research skills. In 1988, the education and research areas of the psychosocial
Board of Directors requested that the Society field. It resulted in the establishment of a national
develop guidelines for a psycho-oncology cur- peer review committee for review of grant support
riculum, starting formal efforts in Venice one year in psychosocial and behavioral research (pre-
later. With encouragement from IPOS, the viously reviewed by basic scientists without social
Mexican and the Japanese Psycho-oncology science backgrounds) and a national advisory
Societies were formed: by Romero in Mexico in committee. Over five million dollars has sup-
1984 and by Kawano in Japan in 1985. Romero ported psychosocial and behavioral research
has developed an academic program with univer- through the ACS awards since the peer review
sity credit in Mexico City at the PhD. level for the body was formed. The second conference focused
training of psychologists in psycho-oncology. on research method development and identified
Argentina and Brazil are leading the way towards barriers to improvement in research methodology.
a South American group, under Fisman and The last workshop updated research issues in the
Penna, and an Australian society is being field and proposed a research agenda. The US
planned. The Belgian society is well established, National Cancer Institute has begun to recognize
and a Nordic society is developing. the importance of quality of life assessment as an
The Norman Cousins International Fellow outcome variable in clinical trials. A conference in
Award and Norman Cousins Traveling Scholar- 1990 on methodology was published (Mayfield
ships were important resources for international and Hailey, 1991).
education in 1988. In the same year, the American In 1989, the European School of Oncology held
Society for Psychiatric Oncology/ AIDS was the first course on psychosocial issues in cancer in
formed to encourage training in clinical care and Venice (Holland and Zittoun, 1990). The first
research. In the USA, the Linda Pollin Founda- meetings of this kind in Brazil and India were held
tion has been a strong support for training pro - in 1989. And, in London, the first joint British
1372 PSYCHO-ONCOLOGY OVERVIEW

and European Psychosocial Oncology Society year program, but they must attend clinical con-
meeting was held. A psychosocial component ferences and gain sufficient clinical information to
was included in the WHO Expert Committee assure that their research is clinically relevant.
on Pain Relief/Supportive Care held in Geneva In general, formal training should be for at
which resulted in a successful publication for least one year, adding to the training achieved in
international distribution. the individual’s primary discipline and tailoring
In 1990, a meeting of the Japanese Psycho- the program to complement areas and skills in
oncology Society was held in Kyoto and a Quality need of expansion to work effectively in cancer
of Life meeting in Sapporo. The first joint (e.g. evaluation of cognitive deficits or delirium).
European Psychosocial and International Psycho- The training should consist of supervised tutorial
oncology Society meeting also took place in 1990 experiences with hospitalized and ambulatory
at the UICC Cancer Congress in August in patients, combined with didactic lectures and con-
Hamburg. In 1991, the European School of Onco- ferences. Ideally, the clinical training should
logy and the International Psycho-oncology include exposure to research methods. A second
Society co-sponsored, with the Psychiatry Service year is highly recommended to learn research
of the Memorial Sloan-Kettering Cancer Center, design, instrumentation and to design and carry
the presentation of Update on Psycho-oncology out a study under supervision. Research training
IV held at the medical center in New York City. must also include enough clinical exposure to
In 1992, the first World Congress devoted to the ensure that the researcher has a solid understand-
subspecialty will be held at Beaune, France, spon- ing of clinical problems.
sored by the European Society for Psychosocial The content of the didactic part of a training
Oncology, in conjunction with other societies, program should include the following areas:
and a second is being planned for 1994 in Japan. (i) Major factors in psychological adaptation
Training programs. Training of full-time (Holland and Rowland, 1989): medical
(stages, sites, treatments); psychological
psycho-oncologists who treat patients and who
(coping, prior adjustments, developmental
can teach these principles to general oncology
stage); social (supports, social/family/en-
staff has been a major concern of those develop-
vironmental system).
ing psycho-oncology. A clinical training program
(ii) Common psychological and psychiatric
was begun at Memorial Sloan-Kettering Cancer
Center in New York City in 1977, with support problems (Derogatis et al., 1983): adjust-
ment disorders; anxiety; depression and
for its development from the National Institute of
suicide (Bolund, 1985; 1986); organic
Mental Health and the American Cancer Society. mental disorders; personality disorders.
Since then, four to six Fellows per year have been
(iii) Types of therapeutic interventions: psycho-
trained in the clinical aspects of psycho-oncology
therapeutic; behavioral; pharmacologic.
and six to ten Fellows in research aspects. Their
(iv) Special problems: pain and symptom con-
backgrounds are largely in psychiatry or psycho-
trol; fear; cancerophobia; bereavement
logy, with programs also for nurses and visiting
counseling; staff problems (Holland and
scholars. The first year of the two year clinical
Kash, 1989; Whippen and Canellos, 1991);
training is entirely clinical and in the second year,
sexual dysfunction; special patient groups
the Fellow is encouraged to develop skills in a par-
(child, older adult, colleagues); ethics
ticular area and to undertake a clinical investi-
(Zittoun and Sancho-Garnier, 1989).
gation. During the first year, Fellows consult on
(v) Research methods (Cullen et al. 1976; de
hospitalized and ambulatory patients with Haes and van Knippenberg, 1985; Coates et
psychiatric disorders and are responsible, under al., 1987).
supervision, for their psychological care and
psychiatric management. They learn management
of emergencies by 24-hour coverage of the 565
Current status of research
bed hospital. They are assigned within six months
as liaison to a special unit, such as bone marrow As assessment methods improve and as more
transplantation. Orientation lectures and weekly and better psychometric tools are developed or are
conferences cover major topics at which they adapted for use with cancer patients, the quality
present patients for discussion. Research Fellows of scientific investigation is improving. In
may concentrate on research projects for a 1-2 addition, more studies are being undertaken
HOLLAND 1373

which collect concurrent psychological and bio- Publications


logical data. There is also increasing consideration
being given to cross-cultural research topics; one Another measure of the development of a field
of the earliest, excellent examples is the cross- is the presence of publications, journals and texts
cultural study of cancer survivors by Sullivan in which reflect the body of knowledge constituting
the field. Major textbooks of both oncology and
Sweden with Cohen in the US (Sullivan et al., psychiatry in the US have included chapters on
1988a; 1988b). psychosocial issues in cancer since the early 1980s.
Major areas of current research efforts are: The British Psychosocial Oncology Group has
encouraged pubJication of several books devel-
oped from their annual meetings. The Handbook
(i) Psychobiological - collection of concurrent of Psychooncology, provides a comprehensive
psychological and biological data; review of the current practices and references in
(ii) Quality of life measurement in clinical trials all major areas (Holland and Rowland, 1989).
(de Haes, 1985a, 1985b; Coates et al, 1987; The European School of Oncology published a
Holland and Rowland, 1989); Correction monograph in 1990, Psychosocial Aspects of
factor in survival (Gelber and Goldhirsch, Oncology, bringing together a largely European
1986);
faculty (Holland and Zittoun, 1990). The Journal
(iii) Intervention research (Maguire et al.,
1983); of Psychosocial Oncology, has been published
since 1982 and is devoted to these issues; papers
(iv) Supportive, palliative, pain control, ethics
(Razavi et al., 1987); appear in Social Science and Medicine and in the
standard journals of oncology and psychiatry as
(v) Quality of life in patients: high risk, active
well as in psychology journals. The new European
treatment (Silberfarb et al., 1983; Osaba,
1991), palliative care (Silberfarb et al.,
Journal of Oncology is giving special attention to
1983; Maguire, 1985; Razavi, 1987), sur- psychosocial research. Psycho-Oncology: Journal
vivors (Koocher and O’Malley, 1981), staff of the Psychological, Social and Behavioral
(Holland and Rowland, 1989); Dimensions of Cancer is a new international
(vii) Detection, prevention, and compliance. journal, starting in 1992, with the aim of reaching
beyond national boundaries to exchange research
findings.
The major psychosocial units established to
date have research programs which address one or
more of these areas, usually in close collaboration DIRECTION AND CHALLENGES OF THE
with investigators in other oncologic specialties. 1990s
Funding for research and research training are
major issues for continued growth of the field. The direction which psycho-oncology will need to
The chronic problem of securing adequate take to assure further development will depend in
funding for psycho-oncologic research and part on encouraging networks of collaborating
research training is fundamental to the further psychosocial investigators and clinicians and on
recognition and development of psycho-oncology the work of investigators and clinicians from
as a legitimate subspecialty. The most hopeful interfacing areas of oncology, who will be able to
signs are those arising from members of the public identify and explore new problems that will arise
who increasingly demand greater concern for the as new treatment regimens develop. Each new
quaJity of life related to treatment. Their pressure, therapy, such as bone marrow transplantation,
exerted in part by cancer survivors themselves and carries with it a new set of psychological
by those committed to psycho-oncology, is the challenges.
driving force which can influence publicly elected At the joint IPOS/ESPO meeting in Hamburg
officials to alter their health care policy to recog- in 1990, a Round Table chaired by Sullivan
nize and support these needs. This should, in identified several challenges facing the field which
turn, encourage funding for this dimension of also fall within the areas of clinical care, training
health care that, although patients have repeat- and research (Table 4).
edly stated that they want it, has been consistently In clinical care, it will be important to have an
neglected. impact on health care policy decisions in such a
1374 PSYCHO-ONCOLOGY OVERVIEW

Table 4. Challenges of the 1990s training and curriculum. They must determine the
core knowledge required of all trainees and the
Area Action modules that are needed for trainees from specific
disciplines. In addition, there is a need for curri-
Clinical Impact of health care policy decisions to support
Care psychosocial care
cula for training the oncology professional (e.g.
Implement present knowledge oncologist, nurse) who wishes to be more profi-
cient in these skills. Several models of training,
Training Develop training centers for clinical and research either using intensive short programs or part-time
training
over longer periods, are available but none has
Obtain support for training of young clinicians and
investigators
been scrutinized, evaluated and compared. Volun-
Set standards for training and curriculum for teers are widely utilized in psychosocial programs.
professionals (by discipline and specialty) and They are trained by each institution, but as yet no
for volunteers standards have been developed for their training.
This is a responsibility the field must face shortly.
Research Encourage collaborative and psychobiological
research
In the research area, many exciting challenges
Improve research methodology immediately arise. Collaborative ties to tra-
Conduct controlled trials of psychotherapeutic, ditional oncologic specialties assure attention to
behavioural and pharmacologic interventions new therapies with psychiatric or psychological
Encourage quality of life assessment in clinical sequelae (e.g. interleukins, interferon). In
trials addition, psychological data increasingly should
Prevention and detection behavioural research be collected in conjunction with biologic and
Conduct cross-cultural research into oncologic variables to assess better the possible
Impact of health care systems on quality of life interaction, as represented by psychoneuroim-
Ethical dilemmas (informed consent, truth
telling)
munologic research (Stein et al., 1991). Assess-
Meta analysis; replication studies ment techniques require care and ongoing
Alternative therapies (use/type) attention to validation and improvement of
methods, especially comparison of their use
across languages and other cultural factors.
Clinical trials are needed for the current actively
way that quality control of patient care includes utilized interventions: psychotherapeutic,
attention to the quality of their psychosocial care; behavioral and pharmacologic. There are few
reporting of psychosocial programs in cancer controlled trials of single interventions. There are
centers and supporting training and clinical pos- no combined modality studies, despite the fact
itions in cancer centers for psycho-oncologists will that at least two modalities are usually used
assure ongoing attention to this aspect of care. In concurrently.
addition, present knowledge gleaned from clinical Clinical trials in cancer are increasingly con-
research about the positive value of psychosocial taining quality of life as an outcome variable in
and behavioral interventions and psychotropic assessing treatment efficacy (defined as the level
drugs is not being aggressively implemented in of ability to function in the major domains of
most cancer centers (Maguire et al., 1978; Fawzy living, e.g. physical, psychological, social, work)
et al., 1990a; 1990b; Watson, 1991). (Sugarbaker et al., 1982; Silverfarb et al., 1983;
In the training area, it will be necessary to Coates et al., 1987; Osoba, 1991). Ability to
develop several internationally recognized com- change· attitudes and behavior constitutes the
prehensive centers for psycho-oncologic training chief way to control development of neoplasms
and research in which high quality training is which are dependent upon exposure to carcin-
offered in both domains. Critically important is ogens. Social scientists provide the resource to
the obtaining of fellowship support for outstand- examine how to change behaviors related to sun
ing young clinicians and investigators which will exposure, smoking and occupational exposures.
encourage them to undertake careers in this area, International collaboration of psycho-
when independent financial support cannot be oncologists may have most to contribute by the
sought by the individuals. These centers will need opportunity to study the effect of cultural vari-
to provide leadership in setting standards for ables on psychosocial adaptation to cancer. Sul-
qualifications of graduates of the programs, their livan and Cohen have presented a model which
HOLLAND 1375

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