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Editorial 2012 Presidents Plenary International Psycho-Oncology Society: future directions in psycho-oncology W. Breitbart 1 , B. D. Bultz 2 , J. Dunn 3 , L. Grassi 4 and M. Watson 5 * 1 Department of Psychiatry and Behavioural Sciences, Memorial-Sloan Kettering Cancer Center, NY, USA 2 Department of Oncology, University of Calgary, University of Calgary, Cancer Control Alberta: Tom Baker Cancer Centre, Calgary, Alberta, Canada 3 Behavioural Basis for Health, Grifth Health Institute, Grifth University, Cancer Council Queensland, Queensland, Australia 4 Institute of Psychiatry, Department of Biomedical and Specialty Surgical Sciences, University of Ferrara, Ferrara, Italy 5 Royal Marsden NHS Trust, Sutton, UK and Research Department of Clinical, Educational and Health Psychology, University College London, London, UK *Correspondence to: Royal Marsden NHS Trust, Sutton, UK and Research Department of Clinical, Educational and Health Psychology, University College London, London, UK. E-mail: [email protected] Received: 14 May 2013 Accepted: 14 May 2013 Abstract The inaugural Presidents Plenary was held at the 2012 International Psycho-oncology Societys World Congress in Brisbane to provide a platform for dissemination of important initiatives and achievements of interest to cancer professionals globally. The vision of the International Psycho-oncology Society claried and dened in 2004 is that all cancer patients and their families throughout the world should receive optimal psychosocial care at all stages of disease and survivor- ship. Recent initiatives have been driven by the need to see psychosocial care available as a seamless part of holistic multidisciplinary quality cancer care and life-extending lifestyle changes promoted and supported through the expertise of behavioural and social scientists. In keeping with World Health Organization targets that there is no health without mental health, cancer health must in- clude mental health. This is in line with the patientsdeclaration to See us not our disease. The aim is to ensure that within the next decade, psychosocial care is acknowledged as a vital part of the patient journey and accepted globally as good practice within cancer care. The Presidents Plenary session covered the need for the following: Behavioural and social scientists to be integral to the planned lifestyle changes that the United Nations agreed, at a high-level meeting in 2011, to reduce world cancer incidence and morbidity over the next decade; An internationally agreed standard of quality cancer care that includes psychosocial care for patients and their families and carers; An endorsement to assess distress as the 6th vital sign; A declaration that mental health within cancer health is a human right; Psycho-oncology professionals to integrate into a federation promoting better national and international outcomes; strength in numbers speaking with a unied voice. The aim is to encourage dialogue between all cancer professionals and patient representatives to progress these targets; everyone has a voice. Copyright © 2013 John Wiley & Sons, Ltd. Background The 14th World Congress of the International Psycho- oncology Society [IPOS] in Brisbane 2012 was an important watershed where psycho-oncology professionals joined with oncologists from the Clinical Oncological Society of Australia to review and update comprehensive clinical research and service issues globally. That cancer services and care should encompass both mental and physi- cal health was underlined throughout the congress. The driving principle was linked to the World Health Organiza- tions (WHO) 2001 report and declaration that there can be no health without mental health[1] and in line with the patientsdeclaration to See us not our disease[2]. Although the WHO principle has usually related to mental illness, the extension of this WHO fundamental guiding principle of good health should be applied to the interface between physical and mental health [3]. The need for integrated care was emphasized and brought together in an IPOS Inaugural Presidents Plenary. Major themes that were developed aimed at improving comprehensive cancer care and clarifying future goals of the oncology and psycho- oncology community covered the following: Behavioural factors and cancer prevention; Screening for distress, the 6th vital sign: moving be- yond endorsement to implementation; Psychosocial cancer care as a human right; The role of the federation of national psycho- oncology societies. Copyright © 2013 John Wiley & Sons, Ltd. Psycho-Oncology Psycho-Oncology 22: 14391443 (2013) Published online in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3332

2012 President's Plenary International Psycho-Oncology Society: future directions in psycho-oncology

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Editorial

2012 President’s Plenary International Psycho-OncologySociety: future directions in psycho-oncology

W. Breitbart1, B. D. Bultz2, J. Dunn3, L. Grassi4 and M. Watson5*1Department of Psychiatry and Behavioural Sciences, Memorial-Sloan Kettering Cancer Center, NY, USA2Department of Oncology, University of Calgary, University of Calgary, Cancer Control Alberta: Tom Baker Cancer Centre, Calgary, Alberta, Canada3Behavioural Basis for Health, Griffith Health Institute, Griffith University, Cancer Council Queensland, Queensland, Australia4Institute of Psychiatry, Department of Biomedical and Specialty Surgical Sciences, University of Ferrara, Ferrara, Italy5Royal Marsden NHS Trust, Sutton, UK and Research Department of Clinical, Educational and Health Psychology, University College London, London, UK

*Correspondence to:Royal Marsden NHS Trust,Sutton, UK and ResearchDepartment of Clinical,Educational and HealthPsychology, University CollegeLondon, London, UK. E-mail:[email protected]

Received: 14 May 2013Accepted: 14 May 2013

AbstractThe inaugural President’s Plenary was held at the 2012 International Psycho-oncology Society’sWorld Congress in Brisbane to provide a platform for dissemination of important initiatives andachievements of interest to cancer professionals globally. The vision of the InternationalPsycho-oncology Society – clarified and defined in 2004 – is that all cancer patients and their familiesthroughout the world should receive optimal psychosocial care at all stages of disease and survivor-ship. Recent initiatives have been driven by the need to see psychosocial care available as a seamlesspart of holistic multidisciplinary quality cancer care and life-extending lifestyle changes promotedand supported through the expertise of behavioural and social scientists. In keeping with WorldHealth Organization targets that there is ‘no health without mental health’, cancer health must in-clude mental health. This is in line with the patients’ declaration to ‘See us – not our disease’. Theaim is to ensure that within the next decade, psychosocial care is acknowledged as a vital part ofthe patient journey and accepted globally as good practice within cancer care. The President’s Plenarysession covered the need for the following:

• Behavioural and social scientists to be integral to the planned lifestyle changes that theUnited Nations agreed, at a high-level meeting in 2011, to reduce world cancer incidenceand morbidity over the next decade;

• An internationally agreed standard of quality cancer care that includes psychosocial carefor patients and their families and carers;

• An endorsement to assess distress as the 6th vital sign;• A declaration that mental health within cancer health is a human right;• Psycho-oncology professionals to integrate into a federation promoting better national

and international outcomes; strength in numbers speaking with a unified voice.The aim is to encourage dialogue between all cancer professionals and patient representatives toprogress these targets; everyone has a voice.Copyright © 2013 John Wiley & Sons, Ltd.

Background

The 14th World Congress of the International Psycho-oncology Society [IPOS] in Brisbane 2012 was animportant watershed where psycho-oncology professionalsjoined with oncologists from the Clinical OncologicalSociety of Australia to review and update comprehensiveclinical research and service issues globally. That cancerservices and care should encompass both mental and physi-cal health was underlined throughout the congress. Thedriving principle was linked to the World Health Organiza-tion’s (WHO) 2001 report and declaration that there can be‘no health without mental health’ [1] and in line with thepatients’ declaration to ‘See us – not our disease’ [2].Although the WHO principle has usually related to mental

illness, the extension of this WHO fundamental guidingprinciple of good health should be applied to the interfacebetween physical and mental health [3]. The need forintegrated care was emphasized and brought together in anIPOS Inaugural President’s Plenary. Major themes that weredeveloped aimed at improving comprehensive cancer careand clarifying future goals of the oncology and psycho-oncology community covered the following:

• Behavioural factors and cancer prevention;• Screening for distress, the 6th vital sign: moving be-

yond endorsement to implementation;• Psychosocial cancer care as a human right;• The role of the federation of national psycho-

oncology societies.

Copyright © 2013 John Wiley & Sons, Ltd.

Psycho-OncologyPsycho-Oncology 22: 1439–1443 (2013)Published online in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3332

Behavioural factors and cancer prevention

The role of behavioural and lifestyle factors in the cause andcourse of cancer is recognized. The United Nations provideda catalyst for new global initiatives following a high-levelmeeting in September 2011 where targets were set for thereduction of cancers linked to lifestyle [4]. To smoking as arisk factor were added diet, obesity and sedentary lifestyles.The importance of these political initiatives to psycho-oncologists is that behavioural change is seen as somethingthat can – if effectively implemented – help to reduce earlymortality from cancer by up to 40% globally. Psycho-oncologists and health behaviourists have an important roleto play in bringing psychological expertise onto the cancerprevention agenda. It is suggested that programmes aimedat influencing lifestyle and behavioural change need to inte-grate the expertise of behavioural scientists far more than iscurrently being utilized. Behavioural scientists have impor-tant expertise to offer that will assist health care organiza-tions, cancer care stakeholders and cancer preventionprogramme policy makers in the challenge of reducing mor-tality and early death from cancers linked to lifestyle andadverse health behaviours. IPOS welcomes this challengeand offers the opportunity to provide this expertise as amultidisciplinary organization representing professionalsworking on psychosocial aspects of cancer.

Screening for Distress, the 6th vital sign: movingbeyond endorsement to implementation

In July 2010, the IPOS Board of Directors unanimouslyendorsed the IPOS International Standard of QualityCancer Care, calling for Screening for Distress as the6th vital sign in cancer care. We have made great progresssince then, leveraging the support of psycho-oncologistsand affiliated health and medical experts worldwide, andengaging World Cancer Leaders and international cancersocieties to promote the integration of quality psychoso-cial care into routine cancer treatment. Our global visionfor the standard is important and cannot be ignored: toimprove patient care and quality of life through routineScreening for Distress as the 6th vital sign. Early effortshave proven tremendously successful, resulting in supportfor and endorsement of the Standard by the Union forInternational Cancer Control and formal endorsement ofthe standard by more than 60 influential cancer organiza-tions from different nations. IPOS has also forged a pro-gressive partnership with the WHO to underpin theWHO’s principles of comprehensive cancer care bypromoting improved diagnosis and management of clini-cally significant distress among cancer patients. These out-comes are symbolic achievements, signifying a strongunderstanding on the part of the international cancer commu-nity that the IPOS standard is essential to those individualsdiagnosed and being treated for cancer and their quality of

life and therefore demands our attention and collectivecommitment. The task before us right now, as psycho-oncol-ogy experts, is to transform that commitment into meaningfulaction to enhance clinical care and practice by nurturingcloser connections between psycho-oncologists and healthpractitioners, health policy makers and health authorities.Prior to codification of the IPOS Standard, the prevalenceof distress among cancer patients and the serious adverseimpact on patient well-being and quality of life had been welldocumented but not given the attention it warranted by bothmedical physicians and advocates for advancements incancer clinical practice [5]. As a result of accumulatingevidence on prevalence rates, in June 2004, the CanadianStrategy for Cancer Control highlighted that distress shouldbe designated one of six vital signs that should be routinelyscreened and monitored by health professionals in thetreatment of cancer patients. Subsequently, the United States’Institute of Medicine issued a report in 2007, outlining thestrong evidence for psychosocial intervention in cancer careand suggesting the inclusion of psychosocial care in clinicaltreatment [6]. In Europe and Australia, clinical practiceguidelines had already included recommendations thatpatients be assessed for psychosocial needs and levels of dis-tress at important transitional points in their care [7,8].Although the growing evidence in support of routinescreening for distress and management in cancer care wascompelling, global leadership and advocacy on the issuewas lacking, until the advent of IPOS as an internationallyinfluential professional association dedicated to realizing theInternational Standard of Quality Cancer Care. The threeimportant core principles guide cancer-related psychosocialcare are the following:

(1) Integration of routine screening for distress, the 6thvital sign, into clinical care and practice guidelines;

(2) Provision of effective support to promote psychologicaland emotional well-being;

(3) Agreement on universally codified psychosocial carestrategies and plans for cancer detection, treatmentand support.

Medicine has long recognized the importance of assessingpatient health status with what are called vital signs. Pain wasadded to the list of vital signs in 1999 because it is a prevalentand frequently (40%) reported symptom of cancer [9].Similarly, ‘distress’ was designated the 6th vital sign in2004 in Canada and now globally [10,11]. Althoughendorsements of vital signs are an important step in monitor-ing and improving the patient experience, we know this is notenough. Implementation of standardized screening tools,followed by a focused conversation about symptoms andconcerns, then assessment and intervention, must be the nextsteps, thus connecting patient distress to improved patientcare and better symptom management [12,13]. In essence,psychosocial oncologists need to think of our specialty as a

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‘science of caring’ and support the principle that ‘what wemeasure is what we will act upon’ [14]. Although theadoption of standardized screening for distress may appearlike a culture shift, it should perhaps be seen more as qualityimprovement applied to what health care is alreadymandatedto do. Relying on clinical acumen to detect what astandardized measure can do easily and accurately is notsensible. Without standardized assessment, we will continueto fall short of our mandate to provide better whole patientcare. Psycho-oncology can and must employ our science toimprove patient care. Distress being accorded status as the6th vital sign is a first step. Implementing a standardizedscreening for distress, the programme is the precursor tobetter identification and the timely provision of best practicesin patient care [13]. It is the right time to take this step andadvance care by moving beyond endorsement to trueimplementation of Screening for Distress, the 6th vital sign.

Psychosocial cancer care as a human right

The IPOS Human Rights Task Force was established in2008, to raise awareness and support, within IPOS and theIPOS Federation, of the relevance of Psychosocial CancerCare as a human rights issue that can be advocated for inter-nationally through existing human rights laws, in a fashionsimilar to the human rights initiative of the organized pallia-tive caremovement. Since 2009, in Vienna, the IPOSHumanRights Task Force has held a Symposium on PsychosocialCancer Care as a Human Rights Issue at each annual IPOSWorld Congress. The Task Force drafted a ‘Joint Declarationand Statement of Commitment Calling for the Recognition ofPsychosocial Cancer Care as a Human Right’ that is now be-ing proposed to the IPOS membership and the IPOSFederation for approval. This marks the initiation of a cam-paign to have national and international cancer organizations,palliative care organizations, cancer advocacy organizationsand concerned individuals join IPOS in signing this declarationas a critical first step in utilizing a human rights’ argument as ameans to advocate for optimal psychosocial cancer careresources in every country worldwide. The ‘right to health’ isa fundamental part of our human rights and of our understand-ing of a life in dignity as stated in numerous internationalhuman rights declarations and covenants [15–19]. The rightto psychosocial cancer care, including access to cancerprevention services, screening for distress, diagnosis and treat-ment of psychosocial sequelae of cancer (nonpharmacologicand pharmacologic interventions), throughout the course ofcancer treatment, including survivorship, end of life care andbereavement services, is protected under existing humanrights’ law and the right to health. Approximately 40% ofcancer patients, and family members, experience levels of psy-chological distress that requires specific intervention [20,21].Of the 28 million people worldwide with cancer (as well astheir familymembers), only aminority of those in need receiveproper psychosocial cancer care by trained professionals,

resulting in widespread unnecessary suffering [22]. The IPOSJoint Declaration calls on members of IPOS and the IPOSFederation, as representatives of psychosocial oncologyworld-wide, as well as related alliances, federations, associations andorganizations to work together worldwide to implement thefollowing:

(1) Identify, develop and implement strategies for therecognition of psychosocial cancer care and treat-ment as fundamental human rights;

(2) Work with governments and policy makers to adoptthe necessary changes in legislation to ensure appro-priate psychosocial care of patients with cancer, can-cer survivors or those at risk of developing cancer;

(3) Advocate for improvements in access to and avail-ability of psychosocial cancer care required for theeffective treatment of the emotional, interpersonal,familial and social impact of cancer;

(4) Advocate for adequate resources to be made avail-able to support the implementation of psychosocialcancer care and psychosocial oncology serviceswhere needed, including support of such services incancer centres, and ongoing professional training inpsychosocial cancer care;

(5) Advocate for academic institutions, teaching hospi-tals, universities and health care systems to adoptthe necessary practices and changes needed to ensurethat psychosocial care, resources, personnel, infra-structures, review boards and systems are createdand sustained;

(6) Encourage and enlist other international and nationalorganizations, associations, federations and interestedparties to join this global campaign for the recognitionof psychosocial cancer care as a human right;

(7) Encourage the recognition that psychosocial cancercare must be provided in a manner consistent withthe diversity of cultural, social and religious contextsof individual regions and countries worldwide.

The role of the federation of nationalpsycho-oncology societies

The Federation of Psycho-Oncology Societies wasconceived in 2006 at the IPOS Congress in Venice, createdin 2007 at the IPOS Congress in London and launched withits board in 2008 at the IPOS Congress in Madrid, as a wayto represent psychosocial oncology worldwide, communicat-ing a compelling, unified message that all cancer patients andtheir families should receive optimal psychosocial care at allstages of the disease and survival [23]. Every year, themeeting of the federation board at the following IPOSmeetings (Vienna 2009, Quebec 2010, Antalya 2011 andBrisbane 2012) has favoured the growing of the federationitself. In fact, almost all the countries having an establishedscientific psycho-oncology society operating at a national

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level are members of the IPOS Federation that represents,considering both federated, affiliated and associated mem-bers, 30 countries, 36 societies and/or groups and almost6000 members. The three task forces within the federation– (i) Guidelines, Standards, Accreditation and Training; (ii)National Outreach; and (iii) Scientific Research – haveworked to reach a general mandate to increase thecooperation between the societies and their respectivecountries, to exchange experience regarding psychosocialoncology, to favour its dissemination at regional, nationaland international levels and to strengthen the bonds withother associations working in the area of cancer patients care(e.g. clinical oncology, specialist oncology and palliative careassociations). An interesting aspect related to the philosophicalspirit and the role of the federation has been the involvement ofnational psycho-oncology societies (e.g. Chinese, Italian,Japanese and Portuguese) in the translation and adaptationof the lectures of the IPOS online multilingual trainingprogramme in psycho-oncology. The core curriculumprogramme consists of a series of 1-hour lectures on 10basic subjects in psychosocial care in oncology and hasbeen developed by IPOS in partnership with the EuropeanSchool of Oncology.1

A further outcome of the federation has been the creationof formally recognized psycho-oncology networking groups,such as the East Asian Psycho-Oncology Network, involvingJapan, Taiwan, Korea and China, or other groups expressingspecific needs according to the geographical area, such as theSouthern European Psycho-Oncology Group.Recently, the Federation completed a survey aimed at

examining how national governments formally recognizepsycho-oncology in their National Cancer Acts wherethey exist, and clarifying access to psychosocial care inthe different countries [24]. The findings indicate thatpsychosocial oncology has grown over the last decade,with national standards for psychosocial care in oncologyavailable in several countries (e.g. Australia, Canada andNetherlands), and with National Cancer Acts or strategiesof some countries officially recognizing psycho-oncology(e.g. Germany, Italy, Netherlands and Switzerland). In

other countries, especially developing countries, however,psycho-oncology has not been established or notcompletely established, or is not an integral part of cancercare. It is clear that cultural and social barriers should beovercome and political problems (including underfundingof psychosocial oncology) should be solved to increasethe number of psychosocial services within hospital andcommunity-based cancer centres and to reach the goalsthat both IPOS and the federation have, which is toaddress the need and the right of cancer patients and theirfamilies to be supported and treated along the journey ofthe disease and survivorship.

Summary

Success is ‘. . . to leave the world a bit better. . .to knoweven one life has breathed easier. . .this is to havesucceeded.’ Ralph Waldo Emerson (1803 – 1882). Oftenas we work together with patients, families and carerssupporting their efforts to lead the best life they can, wetoo need to be supported. The IPOS and the GlobalCommunity of Cancer Professionals attending the 2012World Congress, by sharing their experiences of doingthe best research possible and developing the best servicesto help people with cancer, have provided a synergisticexperience that helps us to support each other and moveforward to achieve positive change in patient care. Thefuture holds many challenges; some of which aredescribed here. The hope is that we can make a differenceto those affected by cancer in working together to progressthe aims that have been set out and thereby achieve thesuccess Emerson so eloquently described.

Note

1. International Psycho-Oncology Society (IPOS): Multi-lingual Core Curriculum Online Lectures in Psycho-Oncology, http://www.ipos-society.org/education/core_curriculum.aspx

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