International Psycho-Oncology Society Research Articles

Distress, the 6th vital sign in cancer care

Distress has been endorsed as the 6th Vital Sign by the International Psycho-Oncology Society (IPOS) in 2009 with Screening for Distress as a proposed IPOS strategy in 2010. The need for skilled psychological care is well-recognized as a necessary, integral part of oncology care. There has been significant development of this field over the last two decades in the area now commonly labelled “psycho-oncology”. Given the advances in psycho-oncology, it is helpful to overview the approaches to provision of psychological care, so we can better understand how to care for the emotional needs of cancer patients, their partners and families. The focus here is on patients with high and enduring levels of need in terms of emotional functioning and the formal therapies that are available to help patients and their families manage these needs.

Psycho-science: Where do we go from here?

The last 25 years have seen a burgeoning of research and publications in the field of psychosocial oncology. For example, in 1998, the frequency of publication of Psycho Oncology (the official organ of the International Psycho Oncology Society) was increased from four issues per year to six issues per year, and by 2004 the frequency had increased to 12 issues per year (currently over 1200 pages per annum). There have been a number of significant achievements during this time, notably (a) the universal realisation that the diagnosis and treatment of cancer commonly cause significant psychosocial and psychiatric morbidity, (b) the increasing recognition of the importance of good communication between health care professionals and their patients (and other family members) as well as the importance of providing appropriate information and support, and (c) the acceptance of the need to include measures of quality of life and related psychosocial parameters as outcomes in clinical trials of new oncological interventions. There has also been increasing recognition of the need for specialist palliative care services [1]. Unfortunately, too much recent research, both qualitative and quantitative, has been devoted to describing and quantifying ad nauseam the nature and prevalence of cancer-related distress, at the expense of developing and evaluating ways of preventing and treating such distress. Despite this, a number of well-designed randomised controlled trials (RCTs) have shown that psychosocial interventions can be effective in reducing treatmentrelated distress (for example, treatment-related nausea and anxiety treated to medical investigations and procedures) as well as in treating clinically significant anxiety and depression [2]. Other RCTs have shown that various psychosocial interventions, for example, relaxation and guided imagery, can improve quality of life more generally following the diagnosis as well as during and after treatment [3]. Quo vadis

Psychosocial oncology in China

In China over the past decade, psychosocial oncology has emerged as a new program. Development of this program requires attention to current opportunities, obstacles and cultural concerns. A selected literature review of academic papers in Chinese and English language journals and web sites was analyzed for themes regarding the current status, challenges, and opportunities for psychosocial oncology in China. China’s national cancer strategy (2004–2010), based on WHO guidelines, is focused on cancer prevention and treatment, as well as quality of life among cancer patients and their families. The Chinese Anti-Cancer Association is now funding research, training and international collaboration in psychosocial oncology. The newly organized Chinese Psychosocial Oncology Society, founded in 2006, aims to provide a national forum for psychosocial oncology research. Cultural and systemic challenges to establishing psychosocial oncology as a core discipline in China include: (1) the family’s desire to ‘protect’ cancer patients by with-holding cancer-related information; (2) stigma and privacy regarding mental health issues; (3) biomedical practitioners’ claims that psychosocial oncology is not sufficiently evidence-based; and (4) limited funding for psychosocial oncology care and research. The International Psycho-Oncology Society (IPOS) is considered a valuable resource towards China’s interest in partnering with the international psychosocial oncology community to enhance the discipline globally.

Comment le facteur culturel est-il considéré en psycho-oncologie ?

Psychosocial cancer care must integrate the patient’s cultural issues and social and family background. Paradoxically, these aspects are still undeveloped for economic and cultural reasons, which explains the paucity of transcultural research in psycho-oncology.The challenge is to find out how best to transpose, to populations from different cultures, the various issues that have come to light in daily clinical psycho-oncology or been revealed by research projects in psycho-social sciences sponsored by organisms such as the INCa or Canceropôles (cancer research centres). It also involves thinking about specificity of screening and management when transcultural issues arise. Cultural factors impact on patients’ perception, comprehension and experience of their disease and its treatment, on the medical professionals involved and, in fine, on the doctor / patient dyad.These cultural issues influence the various psychooncological factors and the way in which psycho-oncologists generally approach them: communication and disclosure of bad news, the doctor-patient relationship, physical and psychological experience of pain, body investment, beliefs and meanings invested in cancer, coping with the disease, role of the family, access to psychosocial care, satisfaction with treatment, end of life.Thus it is necessary to promote transversal and trans-cultural research in the field of psychosocial oncology. Such research has been started, under the aegis of the International Psycho-oncology Society (IPOS), with respect to specific thematics, such as how to assess and care for emotional distress in cancer patients.Transcultural research into psychooncology must respect the ethical principles of autonomy and nonmaleficence when so-called informed consent is requested. This ethic is based on distinguishing between different socioeconomic, socio-linguistic, institutional and socio-cultural dimensions, without forgetting the methodological principles involved in this type of research.Daily clinical work in this transcultural field necessitates the acquisition by medical personnel of cultural skills enabling them to care adequately for all the patient’s needs. Such work requires an awareness of the acculturation concept, so that patients from different cultures who are confronted with the disease can be helped to deal with the stress engendered and improve their ability to adapt.The transcultural approach in psychooncology should be part of the psychosocial dimension and psychosocial cancer care. To this end, health professionals working in oncology need to be made more aware of the cultural dimension in cancer care and trained in how best to approach it. Research into transcultural psychosocial sciences must be developed and promoted, as to date it is a field of research that is seriously under-developed.

Abstracts of the International Psycho-Oncology Society (IPOS) 10th World Congress of Psycho-Oncology, 9-13 June 2008, Madrid, Spain.

Psycho-OncologyVolume 17, Issue S2 p. S1-S348 AbstractFree Access IPOS 10th World Congress of Psycho-Oncology Abstracts Correction(s) for this article Corrigendum Volume 27Issue 4Psycho-Oncology pages: 1359-1359 First Published online: April 10, 2018 First published: 09 June 2008 https://doi.org/10.1002/pon.1389Citations: 2AboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onEmailFacebookTwitterLinked InRedditWechat Citing Literature Volume17, IssueS2Supplement: Abstracts of the International Psycho‐Oncology Society (IPOS) 10th World Congress of Psycho‐Oncology, 9‐13 June 2008, Madrid, SpainJune 2008Pages S1-S348 RelatedInformation

112 INVITED Optimizing geriatric oncology care: the EONS programme

Cancer care is undergoing an important paradigm shift from a disease-focused management to a patient-centred approach, in which increasingly more attention is paid to psychosocial aspects, quality of life, patients’ rights and empowerment and survivorship. In this context, multidisciplinary teams emerge as a practical necessity for optimal coordination among health professionals and clear communication with patients. The European Partnership for Action Against Cancer (EPAAC), an initiative launched by the European Commission in 2009, addressed the multidisciplinary care from a policy perspective in order to define the core elements that all tumour-based multidisciplinary teams (MDTs) should include. To that effect, a working group conference was held in January 2013 within the EPAAC Work Package 7 (on Healthcare) framework.The consensus group consisted of high-level representatives from the following European scientific societies, patient associations and stakeholders: European CanCer Organisation (ECCO), European SocieTy for Radiology & Oncology (ESTRO), European Society for Medical Oncology (ESMO), European Society of Surgical Oncology (ESSO), International Society of Geriatric Oncology (SIOG), European Association for Palliative Care (EAPC), European Oncology Nursing Society (EONS), International Psycho-Oncology Society (IPOS),European Cancer Patient Coalition (ECPC), EuropaColon, Europa Donna - The European Breast Cancer Coalition, Association of European Cancer Leagues (ECL), Organisation of European Cancer Institutes (OECI), EUSOMA - European Society of Breast Cancer Specialists, European Hospital and Healthcare Federation (HOPE) and EPAAC Work Packages 5 (Health promotion and prevention), 7, 8 (Research), 9 (Information systems) and 10 (Cancer plans). A background document with a list of 26 core issues drawn from a systematic review of the literature was used to guide the discussion. Five areas related to MDTs were covered: care objectives, organisation, clinical assessment, patients’ rights and empowerment and policy support. Preliminary drafts of the document were widely circulated for consultation and amendments by the working group before final approval.The working group unanimously formulated a Policy Statement on Multidisciplinary Cancer Care to define the core elements that should be implemented by all tumour-based MDTs. This document identifies MDTs as the core component in cancer care organisation and sets down the key elements to guide changes across all European health systems.MDTs are an essential instrument of effective cancer care policy, and their continued development crucial to providing patients the care they need and deserve. While implementation must remain in local hands, European health systems can still benefit from having a basis for an effective multidisciplinary model of cooperation. This policy statement is intended to serve as a reference for policymakers and healthcare providers who wish to improve the services currently provided to the cancer patients whose lives and well-being depend on their action.

The Fog in Venice

I have just returned from the Eighth World Congress of Psycho-oncology, which was held in Venice on October 18–21, 2006, and attracted the largest number of attendees ever to participate in the annual scientific meeting of the International Psycho-Oncology Society (IPOS). There were close to 1500 participants from 58 countries. Professor Luigi Grassi of the University of Ferrara, the current President of IPOS, was the organizing chair of the Congress, and he and his local scientific committee did a magnificent job of hosting a most diverse and multidisciplinary meeting. A Pre-Congress Psychosocial Academy, consisting of two days of intensive workshops led by outstanding international faculty, was held in beautiful Ferrara, just prior to the start of the Congress in Venice. As the incoming vice president of IPOS, a member of the Psychosocial Academy held in Ferrara, and an active scientific participant in the Eighth World Congress in Venice, it is fair to say that I was pretty busy. In fact, because of all of my activities related to this conference and IPOS, I was away from home and work for nine full days, the longest time I've ever been away from my family. This commitment of an unusually inordinate amount of time to a scientific conference activity made me sit down and evaluate whether the commitment of that much time was really worth it. I was aware, the entire time I attended the conference-related activities, that I needed to come away with at least one important lesson, idea, thought, or inspiration; otherwise I would have felt that I had not spent the time wisely. In other words, I needed the answer to the questions “What brought me to Venice, and where was I going beyond Venice?” Existential questions? Of course!

IPOS Sutherland Memorial Lecture: an international perspective on the development of psychosocial oncology: overcoming cultural and attitudinal barriers to improve psychosocial care.

Around the world, traditionally the diagnosis of cancer and its prognosis was withheld from patients for centuries, due to the stigma and fears attached to it. This custom of 'never telling' precluded talking with patients about their feelings and how they were coping with illness and the threat of death. In the last quarter of the twentieth century, patient's right of access to information, coupled with the diminished stigma attached to cancer, encouraged physicians into a more open dialogue. In the majority of countries today, patients learn their diagnosis and know their treatment options. This change permitted the first formal psychosocial studies of patients in the 1950s, and the beginning of research into coping and development of interventions to improve quality of life. However, a second independent stigma, also present for centuries, has persisted: the stigma associated with mental disorders (even in the context of severe physical illness). This prejudice about mental problems has been a barrier to the integration of the psychosocial domain into total cancer care; the identification of patients who are distressed; and, patient's acceptance of psychological help. Despite these barriers, psychosocial oncology has developed worldwide, with a small, but active cadre of investigators and clinicians engaging in clinical, educational and research aspects of psycho-oncology. The International Psycho-Oncology Society (IPOS), since 1984, has brought them together. The Sutherland Memorial Lecture has honored nine individuals from five countries who have made major contributions to the field: 1982, Avery Weisman; 1984, Bernard Fox; 1987, Morton Bard; 1991, Margit von Kerekjarto; 1993, Ned Cassem; 1996, Steven Greer; 1998, Hiroomi Kawano; 2000, Robert Zittoun; and 2003, Jimmie Holland. The scientific base for psychosocial oncology is now secure with a body of knowledge, textbooks and journals which have led to the development of evidence-based clinical practice guidelines for psychosocial services in several countries. A benchmark now exists against which care can be monitored and accountability established. The next 25 years will see an improvement in the psychosocial care of patients, based on research that gives a scientific basis for interventions, and a reduction in the barriers to psychosocial care in cancer.

Psycho-oncology and palliative care: Opportunity for integration

Palliative and Supportive Care is an international journal that was begun specifically with the intent of promoting the development and integration of psychiatric, psychosocial, and existential aspects of clinical care into the modern practice of palliative medicine. We hoped to achieve this goal by providing a resource to clinicians and an outlet for clinical researchers interested in the unique interface of palliative care and psychosocial/existential issues in those with life-threatening medical conditions. It is therefore very encouraging to see a growing interest in this particular interface of palliative medicine and psychosocial/existential care. I reported to our readers, in the last issue of Palliative and Supportive Care (PS&C), of the great interest in psychosocial and existential issues in the palliative care community as represented by the June 2004 Research Congress of the European Palliative Care Association held in Stresa, Italy. I have just returned from the 7th World Congress of Psycho-Oncology, sponsored by the International Psycho-Oncology Society (IPOS), held on August 24–27, 2004, in Copenhagen, Denmark. Again, what I bring back to the readers of PS&C is a message of encouragement and a sense that the time has come for our interests and work to take on a more central role in the fields of both palliative care and psycho-oncology (the psychosocial aspects of care of cancer patients). The World Congress of Psycho-oncology featured psychiatric, psychosocial, and existential aspects of palliative care in cancer patients as a prominent part of the program.

The child with cancer. Influence of culture on truth-telling and patient care.

The definition, understanding, and shaping of childhood and adolescence vary widely. The cultural life of a community determines how children are valued and what measures will be taken to insure their health. It will also determine the family's responses to an ill child. It is for these reasons that health-care professionals should be sensitive to culturally defined health beliefs and practices that may explain behaviors such as nonadherence to prescribed therapies, the degree and quality of parents' involvement in patient care, and the family's relationship with health-care staff. Assessments of health beliefs and practices, family composition, religious rites, and beliefs about illness causation should be routinely made on each family. These assessments provide important information that will facilitate the design of treatment plans that are congruent with a family's cultural heritage. Knowledge of cultural factors should not exclude an individualized approach to families. Each family should be evaluated in ways that allow us to identify their individual as well as culturally defined characteristics. This will eliminate the cultural stereotyping that may occur in the context of behaviors that are not well understood in a particular health-care setting. Research studies in which health behaviors are correlated with culturally defined values and practices need to be carried out. The International Psycho-Oncology Society, through its National Representation Committee, is currently investigating oncology practices around the world. Nearly 30 countries are participating in this attempt to identify cultural variations in truth-telling, palliative care, pain control, and use of alternative medicine in oncology. The importance of this study lies not only in the results that it will yield, but also in the joint effort that it has required to share professional experiences and to enhance efficient communication among oncologists internationally. This study may also be used as a model to investigate oncology practices in pediatric health-care settings.

An international survey of physician attitudes and practice in regard to revealing the diagnosis of cancer.

In 1984, questionnaires were sent to members of the International Psycho-Oncology Society concerning the practice in their country with regard to revealing the diagnosis of cancer to patients, their opinion about the effect of their policy, and their impression of local trends and attitudes toward cancer. Data from 90 respondents from 20 countries revealed that use of the word "cancer" was often avoided in discussions with the patient. Words commonly substituted for cancer were those that implied a "swelling" (e.g., tumor, growth, lump), and "inflammation," or a pathophysiologic change (blood disease, precancerous, unclean tissue). Oncologists estimated that a low percentage (less than 40%) of their colleagues revealed the word cancer in Africa, France, Hungary, Italy, Japan, Panama, Portugal, and Spain. Oncologists from Austria, Denmark Finland, The Netherlands, New Zealand, Norway, Sweden, and Switzerland, estimated the percentage to be high (greater than 80%). However, in all countries, the majority of physicians tell the family the diagnosis. The majority (90%) reported a trend toward increased telling of the diagnosis, due to greater patient information and expectations, and increased physician openess in using the word cancer. Most (68%) felt that the overall effect of revealing the diagnosis was positive. While emotional distress was transiently greater when patients were told, there were positive effects concerning coping, compliance, tolerance of treatment, planning for future, communication with physicians and others, and improved prognosis. The transient negative effects were depression, anxiety, and anger. It is important to recognize that efforts to find the "correct" position about revealing or concealing cancer diagnosis must recognize that the language between doctor and patient is constrained by cultural norms. Communication is likely to be far less dependent upon the specific words used then upon the meaning that is conveyed by the doctor.