The International Psycho-Oncology Society (IPOS) Jimmie C. Holland, M.D. Wayne E. Chapman Chair in Psychiatric Oncology Memorial Sloan-Kettering Cancer Center New York, New York 7th World Congress 2004*

IPOS: Founded 1984 To improve the “human” side of cancer care on a global basis

IPOS: 1984 Foster international communication Educate professionals in psychosocial care across countries Advocate for making psychosocial an integral part of total cancer care Examine social, cultural factors that impact quality of life and care

An International Survey of Physician Attitudes and Practice in Regard to Revealing the Diagnosis of Cancer Jimmie C. Holland, M.D., Natalie Geary, B.A., Anthony Marchini, B.A., and Susan Tross, Ph.D. Psychiatry Service Memorial Sloan-Kettering Cancer Center New York, New York, 10021 Cancer Investigation, 5(2), 151-154 (1987)

Oncologists Estimated Percentage of Physicians in Their Country Who Disclose Cancer Diagnosis N = 90 oncologists; 20 countries Tell to the Patient: LOW% HIGH% Africa Austria France Denmark Hungary Finland Iran Netherlands Panama New Zealand Portugal Norway Spain Switzerland Sweden Tell to the Family: High % estimated by majority of physicians

IPOS: 2005 Conducted 7 World Congresses 2006, Venice Education Conducted 7 World Congresses 2006, Venice > 25 national psycho-oncology societies International journal, 1992 Psycho-Oncology Text books in English, Spanish, Italian, and Japanese

IPOS: 2005 Education 2004 Website: www.ipos-society.org Core curriculum online – FREE 4 lectures, with European School of Oncology in Italian German French Hungarian Spanish English

IPOS: 2005 Requested to become an NGO of World Health Organization Rationale: to add a psychological, social and behavorial dimension to WHO national cancer control programs

WHO Priority Action Plan for National Cancer Control Programs Resources A B C Low Medium High Prevention Early diagnosis Screening/therapy Pain/palliative care PSYCHOSOCIAL

WHO Cancer Prevention Program Depends on changes in life style and exposures: must alter BEHAVIOR Psychological and social factors are critical considerations in prevention education which must be culture and language-sensitive Behavioral scientists needed (Tobacco Cessation)

WHO Cancer Control Program Early Diagnosis Fatalistic attitudes, fear of stigma of cancer, and ignorance are problems, especially in developing countries Public education requires attention to psychological, social, cultural, and behavioral factors

WHO Cancer Control Screening Participation in screening require attention to local social attitudes, beliefs, trust in procedures/staff, and awareness of cultural factors Requires knowledge of community, beliefs, and fears

WHO Priorities for National Cancer Control Programs Pain/Palliative Care

In Palliative Care Pain is often the primary focus Psychological issues are often not identified and treated as an equally important aspect of end-of-life care Need for more participation of psycho- oncologists in end-of-life for clinical and research collaboration

IPOS Goals in Palliative Care Encourage recognition, diagnosis and treatment of psychosocial and psychiatric problems Develop standards and clinical practice guidelines for psychological care

National Programs Standards and Guidelines Australia United Kingdom Canada United States

US Example: 1999 A Multidisciplinary Panel (NCCN) Chose “DISTRESS” as an encompassing word to cover psychosocial/ psychiatric and spiritual A rapid one-item screening question Standards care and Clinical Practice Guidelines for mental health, social work, clergy

DISTRESS CONTINUUM Normal Distress Fears Worries Sadness Severe Distress Depression, Anxiety Family Spiritual

STANDARDS OF CARE FOR MANAGEMENT OF DISTRESS - 1 Distress should be recognized, monitored, documented and treated promptly at all stages of disease All patients should be screened for distress at their initial visit and as clinically indicated Screening should identify the level and nature of the distress Distress should be assessed and managed by evidence or consensus-based clinical practice guidelines Adapted, NCCN

BRIEF SCREENING TOOL AND PROBLEM LIST During the past week, how distressed have you been? Please indicate your level of distress on the thermometer and check the causes of your distress. Practical problems __ Housing __ Insurance __ Work/school __ Transportation __ Child care Family problems __ Partner __ Children Emotional problems __ Worry __ Sadness __ Depression __ Nervousness Spiritual/religious concerns __ Relating to God __ Loss of faith __ Other problems Physical problems __ Pain __ Nausea __ Fatigue __ Sleep __ Getting around __ Bathing/dressing __ Breathing __ Mouth sores __ Eating __ Indigestion __ Constipation/diarrhea __ Bowel changes __ Changes in urination __ Fevers __ Skin dry/itchy __ Nose dry/congested __ Tingling in hands/feet __ Feeling swollen __ Sexual problems Extreme Distress No Distress BRIEF SCREENING TOOL AND PROBLEM LIST

DISTRESS LADDER: MANAGEMENT BY STANDARDS & PRACTICE GUIDELINES ≥ 5 DISTRESS Scale (0–10) < 5 Adapted from WHO Analgesic Ladder

Canada June, 2004 The National Cancer Council Distress added as the 6th vital sign (temperature, pulse, respiration, blood pressure, pain, distress) To be asked about routinely at patient visits

Major Barriers in Every Country Poor to absent funding Absence of oversight and accountability (changing in Australia, Canada, UK) Awareness of the importance to patients and families (especially in palliative care) Mehnert and Koch, 2003

Action Item - 1 IPOS, with WHO, seeks to bring the psychosocial domain into global cancer control programs IPOS advocates for national standards and clinical practice guidelines

Action Item - 2 IPOS provides oversight of global efforts Collate international data for cross- cultural studies Promotes multidisciplinary multi-national research

Action Item - 3 Establish WHO-supported international standards and guidelines For use by national societies to impact policies on service delivery To provide professional training standards To influence national funding priorities To impact governmental agencies via WHO, UICC, IARC To foster research for evidence-based care

“What we value can be seen in what we measure.” Dr. Robert McMurtry “Public Policy, Human Consequences: The Gap Between Biomedicine and Psychosocial Reality” Canada Oncology Exchange, 2003

PAIN DISTRESS

8th WORLD CONGRESS PSYCHO-ONCOLOGY "Multidisciplinary Psychosocial Oncology: Dialogue and Interaction" 18 - 21 October 2006 Palazzo del Cinema Venice, Italy Details will continue to be posted on the conference website at www.ipos2006.it