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PSYCHO-ONCOLOGY: PAST, PRESENT, AND FUTURE DEVELOPMENTS

LUIGI GRASSI, GABRIELLA MORASSO

Chief and Chairman, Clinical Psychiatry Unit, University of Ferrara, Ferrara, Italy

Chief, Psychology Unit, Cancer Institute, Genoa, Italy

INTRODUCTION

Despite the noteworthy scientific progress in oncology, the improvement of medical care and the increasing length of survival, cancer remains one of the most frequent diseases and cause of death worldwide.

The social and mythical image given to cancer is its meaning of physical and psychological suffering, unavoidable death, stigma ("being foreigner and stranger"), guilt and shame. These aspects are indicated by Susan Sontag (1979) the metaphoric meanings which, in cancer, deal with the themes of an insidious, destructive and contagious process. This is also pointed out by Fornari (1984) who considers in cancer the presence of the antinomy meaning of "good/bad" and "friend/enemy", where the enemy is able to influence the affective life of the patient, in his/her individuality and interpersonal domains. It is also what Tolstoj, in his book The death of Ivan Il’ič (1976), catches in the Ivan’s words and thoughts: "(…) Doctor had spoken about physical suffering, with reasons, but more worrying was psychological suffering (…) The major suffering for Ivan came from the lies (…), from the fact that they did not want to recognize what everyone knew and that he himself knew (…) and that they forced him to be part of this lie ". Last, it is what Maher (1982), by Durkeim’s using concepts, points out in the anomic issues activated by cancer as an event which suddenly modify the individual and interpersonal equilibrium, by paralyzing self-regulation capacities and homeostatic processes and creating an atmosphere (or transpersonal climate) of uncertainty and indeterminism.

For these reasons, the need for a global and holistic approach to cancer has gradually become an imperative, which represented the basis for the development of psycho-oncology.

The aim of this short paper is to synthesize the most significant events that have determined the development of the discipline, its present and future aims and the possible risk to pay attention on (Grassi e Morasso, 1998). Interested readers are refereed to more detailed reviews about this topic (Holland, 1990; 1991; 1992; 1997; 1998; 2002; Greer, 1994).

THE PAST OF PSYCHO-ONCOLOGY

From the early '900 the need to have a global approach to physically ill patients and to understand the psychological correlates of medical illness determined a marked cooperation between medical and psychiatric disciplines. In 1902 the first psychiatric ward in a general hospital was set up in the United States and in the early ‘20s Consultation Psychiatry (C-L) was born as a specific branch aimed at examining and treating psychological problems of the medically ill patient. Thus in this discipline, which soon developed in other parts of the world, the roots of clinical and theoretical models applied to several medal and surgical areas. Between the '40s and ‘50s, oncology, cardiology, obstetric-gynaecology and dermatology were the areas in which C-L was extremely represented (Lipowsky, 1991; Lipowsky, 1992) with the application of basic principles of the discipline:

  • need to evaluate the influence of emotional variables in the onset of medical illness (psychosomatic pathogenesis);
  • need to study the interaction between psychological and biological factors (psychobiology);
  • need for physicians’ educational interventions and training in recognizing and treating psychiatric and psychosocial problems in medically ill patients;
  • need for the development and implementation of research in the medical field.

In oncology, English-speaking countries have had the primacy being a guide for many other countries. In the’30s e ’40s the foundation of several societies and institutes, such as the National Cancer Institute (NCI) (http://www.nci.nih.gov/) and the International Union Against Cancer (http://www.uicc.org), represented a first step in fostering the role of psychiatric and psychological disciplines in cancer settings. In the same years, the American Cancer Society (http://www.cancer.org), by acknowledging the importance of information and exchange of experiences among people who had had cancer, was the promoter of the first self-help groups run by patients affected by larynx and colon cancer (Holland, 1998). The "Reach to Recovery" program (http://cope.uicc.org/breast/rri/rri.html) begins its gradual diffusion in many countries, by promoting solidarity and self-help among breast cancer patients.

In the following years many events occur: the developments of a specific psycho-oncology service at the Memorial Sloan-Kettering Cancer Center in New York, by a psychiatrist, Arthur Sutherland, in 1950, the studies by the Swiss psychiatrist Elizabeth Kübler-Ross on the psychological reactions in terminally ill cancer patients, in the early ‘60s, and the development of a psychological service at the St. Cristopher Hospice in London in 1967, by Cicely Saunders, are the most significant ones.

THE PRESENT OF PSYCHO-ONCOLOGY

Contemporarily to these initiatives, the first scientific Psycho-Oncology societies appeared in different parts of the world. In North America, the Canadian Association of Psychosocial Oncology (http://capo.ca/), was funded in 1985, followed by the American Society of Psychosocial and Behavioral Oncology/AIDS (ASPBOA) in 1986. Recently the International Society of Psycho-Oncology (www.ipos-society.org) has become the specific international society, while the American Society of Psychosocial Oncology (www.apos-society.org) has become the society for the US. These societies consist of multidisciplinary professionals who work in clinical and research settings for patients with life-threatening illness, including, cancer, AIDS and allied diseases. The mission is to promote psychological, social and physical well-being of cancer patients and their families across the different stages of the disease. The aims are represented by sensitization of public and health opinion about the psychosocial and spiritual problems secondary to cancer, by the development of training programs for health professionals, by identifying optimal standard of care, and by devising new methods for he recognition and treatment of psychological and behavioral consequences of cancer (Table 1). Psycho-oncology elements are present in the activity of the Academy of Psychosomatic Medicine, the official society of Consultation-Liaison Psychiatry in the USA (http://www.apm.org).

Table 1. Areas and aims of Psycho-Oncology

 

Prevention and early diagnosis

  • Psychosocial and behavioral variables influencing exposure to cancer risk factors
  • Psychosocial and behavioral variables interfering with prevention and early diagnosis
  • Psychosocial and behavioral variables influencing effective educational campaigns
  • Psychosocial and behavioral variables influencing compliance of healthy individuals (e.g. subjects at risk) and cancer patients
  • Psychosocial and behavioral variables and genetic counseling

Psychosocial morbidity in oncology and its recognition/prevention

  • Prevalence of psychosocial disorders among cancer patients and biopsychosocial related variables (e.g. type of cancer and treatment, personality, coping repertoire, social support)
  • Validation of methods aimed at diagnosing and treating psychosocial morbidity

Treatments

  • Study of the concept of quality of life
  • Methods for evaluating quality of life in research and clinical practice protocols
  • Efficacy of psychosocial, rehabilitation and psychopharmacological interventions

Training

  • Training programs for psychologists and psychiatrists
  • Continuous Educational training for professionals working in the field

 

In the same period, other psycho-oncology societies were set-up in Europe. In France the Societé Psychologie et Cancer was active since the early ’80, as well as the British Psychosocial Oncology Society (BPOS) founded in 1983, in the UK, and the Italian Society of Psycho-Oncology (Società Italiana di Psiconcologia - SIPO) (http://www.siponazionale.it) founded in 1985, which published the standard and good clinical practice guide-lines in psycho-oncology in 1997 (Table 2).

Tab. 2 Intervention areas in psycho-oncology according to the SIPO guide-lines

Primary prevention

  • Interventions against smoking behavior

  • Campaigns for a healthy diet
  • Informative intervention towards the population about oncogenic agents

 

Clinical preventions and early diagnosis

  • Screening programs
   

Information and health education

  • Information to the general population and special groups
  • Health education about cancer

 

Training for staff and volunteer associations

  • Organization of training courses
  • Leading groups
   

Research

  • Research projects quality of life and psychosocial impact of anticancer and palliative treatments
  • Research projects on work stress
  • Evaluation of psychosocial interventions
   

Clinical activity

  • Individual and group interventions for patients
  • Individual and group interventions for the family
  • Psychological and psychopathological diagnosis
  • Psychological support and psychotherapy for patients
  • Psychopharmacological treatment
  • Leading self-help groups
  • Leading groups for the staff
  • Selection of staff and volunteers
   

Palliative care

  • Training and supervision of staff
  • Psychological support to patients and families
  • Psychological support during grief

   

Evaluation of the outcome of the interventions

Evaluation of the quality of the interventions

Other societies were subsequently funded throughout Europe, including the Belgian Society for Psychosocial Oncology, the German Society of Psychosocial Oncology, the Polish Psycho-Oncology Society, the Ellenic Society of Psychosocial Oncology (within the Ellenic Cancer Society, the Societad Espanola de Psiconcologia in Spain (SEPO), the Portuguese Society of Psycho-Oncology and the Hungarian Psycho-Oncology Group and Onkopszichològia.

This growing interest and commitment in psycho-oncology was the reason to found, in 1986, the European Society for Psychosocial Oncology (ESPO), now European Federation of Psycho-Oncology Societis (EFPOS) (http://www.efpos.org). With similar objectives,as said, was the foundation of the International Psycho-oncology Society (IPOS) (http://www.ipos-society.org), in 1984, which has the specific aim of "promoting the psychological, social, and physical well being of patients with cancer, AIDS and allied diseases and their families at all stages of disease and survivorship through clinical care, education, research, and advocacy". Thanks to the continuous and intense activity of the IPOS, many other societies were established throughout the world such as Australia, New Zealand, Brazil, Mexico (http://www.incan.edu.mx/), Argentina and Japan, the latter including both the Japanese Society and the psycho-oncology activity made by the National Cancer Center Research Institute (http://www.ncc.go.jp/en/nccri/annrep/1999/20psyco.html). In 1992 the Pan African Psycho-Oncology Society has also been set up.

Most societies tend to intertwine scientific activity (meetings, congresses) with special programs in psycho-oncology. Within the training area, many organizations in Europe and North America have set up training courses dedicated to psycho-oncologists (e.g. the German Psychosocial Postcare Unit and Training Center and the BPOS in Great Britain). Psychosocial research in oncology have improved with the development of new psychological instruments aimed at investigating adjustment to cancer and treatments, the efficacy of behavioral interventions in cancer prevention, the role of psychosocial variables in promoting the onset of cancer and in molding its course, the quality of life of patients during active treatments and palliative care.

In 1992 the first psycho-oncology journal is founded, Psycho-Oncology (http://www.interscience.wiley.com), as the official journal of the IPOS and the BPOS. Together with the Journal of Psychosocial Oncology, founded in 1983 (http://www.haworthpressinc.com), the journal Psycho-Oncology has become a key-instrument for the exchange of data and experience among psycho-oncology professionals.

In Italy also the Giornale Italiano di Psico-Oncologia (http://www.pensiero.it) has been founded in 1999 and it is the official journal of the Società Italiana di Psico-Oncologia (SIPO), for the professionals working in the field.

THE FUTURE OF PSYCHO-ONCOLOGY

On these bases, it appears that psycho-oncology is a scientific area which is rapidly expanding and is catalyzing the energies of several branches of medical sciences. Thanks to the experience of over 50 years of Consultation-Liaison Psychiatry within the General Hospitals, the hospice activity and the progress in behavioral and psychological medicine, psycho-oncology is nowadays the most advanced psychiatric/psychological sub-specialty in the medical field.

Its future will regard the need for a higher visibility within the health agencies, in order to be recognized as a discipline with its mission and vision. Furthermore, resources should be given to implement clinical and research services for the global cure of the patients and families, throughout the process of illness. As recently Jimmie C. Holland (2002) has pointed out, several are the objectives of future psycho-oncology: "behavioral research in changing lifestyle and habits to reduce cancer risk; study of behaviors and attitudes to ensure early detection; study of psychological issues related to genetic risk and testing; symptom control (anxiety, depression, delirium, pain, and fatigue) during active treatment; management of psychological sequelae in cancer survivors; and management of the psychological aspects of palliative and end-of-life care. Links between psychological and physiological domains of relevance to cancer risk and survival are being actively explored through psychoneuroimmunology".

It is a matter of fact that many progresses have been done with this regard. Recognition of the discipline is strictly linked with the diffusion of organizational models within the health system which can give the opportunity for clinicians to appreciate the usefulness of integrated cancer care. Early identification and intervention with regard to psychological distress is one of the way to provide such a visibility, the first standard of treatment being: "Distress should be recognized, monitored, documented, and treated promptly at all stages of disease". Practical guide-lines to treat psychological distress in cancer developed by the National Comprehensive Cancer Network (NCCN) (http://www.ncnn.org) are an example of how to sensitive doctors about the problem of psychosocial morbidity of cancer patients, how to intervene in a multidisciplinary way and how to correctly refer patients for psychiatric or psychological consultation, when needed, On these bases, the Panel recommends that every center (hopefully both specialized cancer centers and general hospital centers) have a multidisciplinary committee that can verify the standard of quality of care and maintenance of quality of care along the course of illness.

At a training level, several programs have been set up during the last ten years and should be implemented in the future. Specific training and continuous medical education courses should be set-up, under the auspices not only of the National Scientific Psycho-Oncology Societies, but of the National Ministries of Health and Education. Alongside this, meetings, discussions, workshops and daily liaison activity within the local hospital should form the basis for the integrated approach to cancer patients and families.

Outcome measure is a further significant aim for the future of psycho-oncology in order to make evident the cost-benefit of psycho-oncology intervention, the patient’s satisfaction and the impact on quality of life. It is important to point out that progress in oncology screening (e.g. screening campaign and genetic testing), prevention (e.g. prophylactic surgery) and treatment (e.g. surgery, chemotherapy, radiotherapy, immunotherapy) open new arenas for clinical research in psycho-oncology. The development of palliative care units, both in the hospital and the community (hospice) offers new opportunities for psycho-oncology as an integrated discipline with oncology and palliative medicine. Epidemiology and prevention, through the development of new campaigns and contacts within public agencies (e.g. school, public hygiene, primary care) and mass-media should consider what psycho-oncology has to offer.

It very important, however, that extreme attention should be paid to the modalities with which psycho-oncology relates with other disciplines. The risk of a complex network model is that the single discipline loses its identity and that the dynamics intertwined with different professional backgrounds and theoretical models cause unsolvable problems. An example is represented by the difficulties other "network disciplines" such as psychosomatic medicine and consultation-liaison psychiatry, have had in the past and still have today, (Lipsitt, 2001). A further severe risk is given by the extreme power of economical issues in the health systems (resources, budgets, eliminating deficits) with its unavoidable negative consequences for the provision of clinical and research services, including psycho-oncology. Among the most negative consequences we could consider the development of a psycho-oncology "alibi", as a suitable way for administrators to give a false but useful image to sell to the population or as a way to solve internal problems, such as the turnover of professional figures. In this case the specific content of psycho-oncology (set-up of clinical service, use of resources for research, addressing the needs of patients and families, specific training of the staff) is completely lost. A second risk is the development of a "luxury" psycho-oncology, possible only in important and renowned cancer institutes or university centers, but absent in the general hospitals of small towns or provinces. A third risk is the development of a "shadow" psycho-oncology, absent in terms of mission and vision but present in a diffuse sense through the activity of several professionals who call themselves psycho-oncologists only because they provide psychological support to patients and families. This points out the need for specific criteria and normative statements to be established about the formal training and profession of psycho-oncology.

The debate on these new areas is still open and the future can give some answers to the above-mentioned questions.

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