Why Psychosocial Care is Difficult to Integrate into Routine Cancer Care: Stigma is the Elephant in the Room

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This issue of JNCCN reviews the NCCN Clinical Practice Guidelines in Oncology: Distress Management for 2010, updated by the NCCN Distress Management Panel. The NCCN appointed this multidisciplinary panel, which met first in 1997, to address the barriers to psychosocial care and to develop clinical practice guidelines. 1 The panel members felt that the major barrier, for both physicians and patients, was the negative meaning and stigma attached to words implying the psychological domain, such as psychiatric, psychological, and psychosocial. The panel considered descriptive words that could encompass the range of fears, worries, and concerns of patients with cancer, and proposed the word distress because it could vary in severity from a normal response to a more significant level, consistent with a psychiatric disorder requiring intervention. The word distress also encompasses the range of fears, anxieties, and sadness that patients with cancer experience. The panel then developed guidelines for the management of distress, recommending that patients be first screened for distress with a short, initial, rapid screening question, followed by a second phase during which the doctor or nurse asks about specific problems. This process should be repeated as clinically indicated as part of routine care. Learning from the success of pain management, the panel suggested using a 0 to 10 scale in the form of a Distress Thermometer (DT) to allow patients to indicate their level of distress, either verbally or with pen and paper. Those who scored above a cutoff score for “caseness” (≥ 4) were asked to identify...

Jimmie C. Holland, MD, is recognized as the founder of the field of psycho-oncology. In 1977, she established the first committee in the CALGB to assess quality of life in clinical trials. In the same year, she became Chief of the Psychiatry Service and then Chair of the Department of Psychiatry and Behavioral Sciences at Memorial Sloan-Kettering Cancer Center to 2003, where she now holds the Wayne Chapman Chair in Psychiatric Oncology and is also Professor of Psychiatry at Weill Medical College, Cornell University. Dr. Holland is Founding President of both the International (1984) and the American (1986) Psycho-Oncology Societies. She edited the first textbook of psycho-oncology in 1989; a second reference text in 1998, and a new edition in 2010, (Psycho-Oncology, Eds). Dr. Holland is Co-Editor of the journal, Psycho-Oncology, begun in 1992. She co-authored The Human Side of Cancer, published in 2000 for patients and their families. Dr. Holland chairs the NCCN panel that published the first Clinical Practice Guidelines for management of distress in cancer. In 1995, she was elected Fellow in the Institute of Medicine. Dr. Holland received the Medal of Honor for Clinical Research from the America Cancer Society in 1994; the APA Presidential Commendation in 2000. She is a graduate of Baylor College of Medicine.

Brian Kelly, BMed, PhD, FRANZCP, FAChPM, is Professor of Psychiatry, School of Medicine and Public Health, University of Newcastle and Consultation-Liaison Psychiatrist, John Hunter Hospital, Newcastle, Australia. He has a longstanding clinical and research interest in psychooncology and palliative care, and in medical education.

Mark I. Weinberger, PhD, is a licensed clinical psychologist and NIMH T32 postdoctoral fellow in geriatric mental health services research in the Department of Psychiatry at Weill Cornell Medical College. Dr. Weinberger's research focuses on late-life depression and barriers to mental health services use among older men with cancer. Dr. Weinberger has published on several topics including course of depression in community and medically ill samples, assessment of depression, quality of life and spirituality in older patients with cancer, and barriers to mental health treatment. Dr. Weinberger is also an active clinician.

  • 1.

    Holland JC, Andersen B, Breitbart WS. NCCN clinical practice guidelines in oncology: distress management. Version 1, 2010. Available at: http://www.nccn.org/professionals/physician_gls/PDF/distress.pdf. Accessed February 10, 2009.

    • Search Google Scholar
    • Export Citation
  • 2.

    Muriel AC, Hwang VS, Kornblith A. Management of psychosocial distress by oncologists. Psychiatr Serv 2009;60:11321134.

  • 3.

    Holland JC, Bultz B. The NCCN Guideline for Distress Management: a case for making distress the sixth vital sign. J Natl Compr Canc Netw 2007;5:37.

    • Search Google Scholar
    • Export Citation
  • 4.

    Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington, DC: Institute of Medicine; October 15, 2007.

  • 5.

    Mitchell AJ. Pooled results from 38 analyses of the accuracy of distress thermometer and other ultra-short methods of detecting cancer-related mood disorders. J Clin Oncol 2007;25:46704681.

    • Search Google Scholar
    • Export Citation
  • 6.

    Loscalzo MJ, Clark KL. Problem-related distress in cancer patients drives requests for help: a prospective study. Oncology (Williston Park) 2007;21:11331138.

    • Search Google Scholar
    • Export Citation
  • 7.

    Jacobsen PB, Shibata D, Siegel E. Initial evaluation of quality indicators for psychosocial care of cancer patient. Cancer Control 2009;16:328324.

    • Search Google Scholar
    • Export Citation
  • 8.

    Sharpe M, Strong V, Allen K. Major depression in outpatients attending a regional cancer centre: screening and unmet treatment needs. Br J Cancer 2004;90:314320.

    • Search Google Scholar
    • Export Citation
  • 9.

    Kissane D. Beyond the psychotherapy and survival debate: the challenge of social disparity, depression and treatment adherence in psychosocial cancer care. Psychooncology 2009;18:15.

    • Search Google Scholar
    • Export Citation
  • 10.

    Jacobsen PB, Ransom S. Implementation of NCCN distress management guidelines by member institutions. J Natl Compr Canc Netw 2007;5:99103.

    • Search Google Scholar
    • Export Citation
  • 11.

    Schofield P, Carey M, Boneski B, Sanson-Fisher R. Barriers to the provision of evidence based psychosocial care in oncology. Psychooncology 2006;15:863872.

    • Search Google Scholar
    • Export Citation
  • 12.

    Keusch GT, Wilentz J, Kleinman A. Stigma and global health: developing a research agenda. Lancet 2006;367:525526.

  • 13.

    Sartorius N. Stigma and mental health. Lancet 2007;370:810811.

  • 14.

    Sontag S. Illness as Metaphor and AIDS and Its Metaphors. London: Penguin; 1991.

  • 15.

    Van Brakel WH. Measuring health-related stigma—a literature review. Psychol Health Med 2006;11:307334.

  • 16.

    Jorm AF, Christensen H, Griffiths KM. Public beliefs about causes and risk factors for mental disorders. Soc Psychiatry Psychiatr Epidemiol 2005;40:764767.

    • Search Google Scholar
    • Export Citation
  • 17.

    Mehta N, Kassam, Leese M. Public attitudes towards people with mental illness in England and Scotland, 1994–2003. Br J Psychiatry 2009;194:278284.

    • Search Google Scholar
    • Export Citation
  • 18.

    Angermeyer MC, Dietrich S. Public beliefs about and attitudes towards people with mental illness: a review of population studies. Acta Psychiatr Scand 2006;113:163179.

    • Search Google Scholar
    • Export Citation
  • 19.

    Goldney RD, Fisher LJ, Wilson DH. Mental health literacy: an impediment to the optimum treatment of major depression in the community. J Affect Disord 2001;64:277284.

    • Search Google Scholar
    • Export Citation
  • 20.

    Wrigley S, Jackson H, Judd F, Komiti A. Role of stigma and attitudes toward help-seeking from a general practitioner for mental health problems in a rural town. Aust N Z J Psychiatry 2005;39:514521.

    • Search Google Scholar
    • Export Citation
  • 21.

    New Freedom Commission on Mental Health. Subcommittee on Rural Issues: Background Paper. DHHS Pub. No. SMA-04-3890. Rockville, MD: 2004.

    • Search Google Scholar
    • Export Citation
  • 22.

    Royal College of Psychiatrists, Royal College of Physicians, British Medical Association. Mental Illness: Stigmatisation and Discrimination Within the Medical Profession. London: Royal College of Psychiatrists, Royal College of Physicians, British Medical Association; February 2001. Council Report CR91.

    • Search Google Scholar
    • Export Citation
  • 23.

    Ryan H, Schofield P, Cockburn J. How to recognize and manage psychological distress in cancer patients. Eur J Cancer Care 2005;14:715.

  • 24.

    Dein S. Explanatory models of and attitudes towards cancer in different cultures. Lancet Oncol 2004;5:119124.

  • 25.

    Taskila T, Wilson S, Damery S. Factors affecting attitudes toward colorectal cancer screening in the primary care population. Br J Cancer 2009;101:250255.

    • Search Google Scholar
    • Export Citation
  • 26.

    Holland JC. IPOS Sutherland Memorial Lecture: an international perspective on the development of psychosocial oncology: overcoming cultural and attitudinal barriers to improve psychosocial care. Psychooncology 2004;13:445459.

    • Search Google Scholar
    • Export Citation
  • 27.

    Wilson K, Luker KA. At home in hospital? Interaction and stigma in people affected by cancer. Soc Sci Med 2006;62:16161627.

  • 28.

    Greenberg D. Barriers to the treatment of depression in cancer. J Natl Cancer Inst Monogr 2004;23:127135.

  • 29.

    Stanton AL. How and for whom? Asking questions about the utility of psychosocial interventions for individuals diagnosed with cancer. J Clin Oncol 2005;23:48184820.

    • Search Google Scholar
    • Export Citation
  • 30.

    Merckaert I, Libert Y, Messin S. Cancer patients' desire for psychological support: prevalence and implications for screening patients' psychological needs. Psychooncology 2010;19:141149.

    • Search Google Scholar
    • Export Citation
  • 31.

    Bayer R. Stigma and the ethics of public health: not can we but should we. Soc Sci Med 2008;67:463472.

  • 32.

    Chapple A, Ziebland S, McPherson A. Stigma, shame, and blame experienced by patients with lung cancer: qualitative study. BMJ 2004;328:14701475.

    • Search Google Scholar
    • Export Citation
  • 33.

    Schönfeld N, Timsit JF. Overcoming a stigma: the lung cancer patient in the intensive care unit. Eur Respir J 2008;31:35.

  • 34.

    Waller J, Marlow LA, Wardle J. Anticipated shame and worry following an abnormal Pap test result: the impact of information about HPV. Prev Med 2009;48:415419.

    • Search Google Scholar
    • Export Citation
  • 35.

    Gray RE, Fitch M, Phillips C. To tell or not to tell: patterns of disclosure among men with prostate cancer. Psychooncology 2000;9:273282.

  • 36.

    Heijnders M, Van Der Meij S. The fight against stigma: an overview of stigma-reduction strategies and interventions. Psychol Health Med 2006;11:353363.

    • Search Google Scholar
    • Export Citation
  • 37.

    Sartorius N. Lessons from a 10-year global programme against stigma and discrimination because of an illness. Psychol Health Med 2006;11:383388.

    • Search Google Scholar
    • Export Citation
  • 38.

    Redman S, Turner J, Davis C. Improving supportive care for women with breast cancer in Australia: the challenge of modifying health systems. Psychooncology 2003;12:521531.

    • Search Google Scholar
    • Export Citation
  • 39.

    Chochinov HM, Hack T, Hassard T. Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol 2005;23:55205525.

    • Search Google Scholar
    • Export Citation
  • 40.

    Gottlieb BH, Wachala ED. Cancer support groups: a critical review of empirical studies. Psychooncology 2007;16:379400.

  • 41.

    Merkaert I, Libert Y, Delvaux N. Factors influencing physicians' detection of cancer patients' and relatives' distress: can a communication skills training program improve physicians' detection? Psychooncology 2008;17:260269.

    • Search Google Scholar
    • Export Citation
  • 42.

    Turner J, Clavarino A, Butow P. Enhancing the capacity of oncology nurses to provide supportive care for parents with advanced cancer: evaluation of an educational intervention. Eur J Cancer 2009;45:17981806.

    • Search Google Scholar
    • Export Citation
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