Psycho-oncology

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Key Terms: Bioethics, Distress, New Age thought, Oncology.

Definition

Psycho-oncology is a broad-based approach to cancer therapy that treats the emotional, social, and spiritual distress which often accompanies cancer. According to Dr. Jimmie Holland, the founder of psycho-oncology, the field has two major emphases. The first is the study of cancer patients' psychological reactions to their illness at all stages of its course; the second is analysis of the emotional, spiritual, social, and behavioral factors that influence the risk of developing cancer and long-term survival following treatment. Some psycho-oncologists consider their field a subspecialty of psychiatry while others emphasize its multidisciplinary aspects. In addition to psychiatrists, departments of psycho-oncology in major cancer centers may include nurses, surgeons, bioethicists, social workers, psychologists, clergy, palliative care specialists, and volunteers.

Description

Psycho-oncology is a relatively new addition to the care of cancer patients. It began in the mid-1970s when Dr. Holland returned to the practice of psychiatry after her children were in school. Married to an oncologist, she had noted that her husband's colleagues focused on the physical effects of the anticancer drugs they were giving their patients to the point of failing to take the patients' thoughts and emotions into account. To some extent this oversight was part of the medical culture of the 1950s and 1960s; at that time cancer carried a stigma because it had low rates of survival. Many doctors were taught in medical school to withhold a diagnosis of cancer from the patient on the grounds that the disease was virtually a death sentence and the truth would be unbearable. Such highly regarded newspapers as the New York Times even refused to print the words "breast cancer" when the founders of the Reach to Recovery program first wanted to insert notices of their meetings.

In the 1970s, however, this attitude of shame and secrecy was reversed, partly because of the patients' rights movement, but also because newer and more effective treatments for cancer came into use and the number of long-term survivors of cancer increased. In 1977 Dr. Holland started the first full-time psychiatric service in a cancer research center in order to study and treat the emotional and psychological crises experienced by cancer patients. She conducted some of the earliest research studies of the emotional impact of cancer on patients and their families.

In the early 2000s, psycho-oncology has become an accepted part of cancer treatment, with departments of psycho-oncology established in most major cancer centers in Canada and the United States. The field has its own journal, Psycho-Oncology, as well as national and international societies for interested professionals.

Special Concerns

Special concerns in psycho-oncology include the feelings of guilt or anxiety expressed by many cancer patients that they cannot adopt or maintain the positive attitudes that some people believe are essential to fighting cancer. Such patients feel burdened by the notion—sometimes voiced by family members—that their literal survival depends on visualizations (usually visualizations of their immune system combating the cancer) or otherwise acting cheerful and upbeat. In addition, some extreme forms of New Age thought lead some people to "blame the victim" that is, to say such things to cancer patients as, "You must have subconsciously wanted to develop this cancer," or, "It's your bad karma—you must have done something bad in a previous existence to deserve this disease." Psycho-oncologists, however, do not regard mental attitudes toward cancer as the sole factor affecting long-term survival, and they do not insist that patients adopt a one-size-fits-all approach to coping with cancer. Dr. Holland's list of recommendations for coping with cancer emphasizes flexibility, as she urges patients to:

  • Use coping techniques or patterns that have helped them in the past in dealing with the stresses of life. For example, someone who has been helped by talking through their problems with trusted friends or family members should not suddenly start to keep their problems to themselves in coping with cancer.
  • Take the "one-day-at-a-time" approach in dealing with the symptoms and other problems that cancer brings with it. This approach, which is sometimes called "chunking it down," helps by keeping large-scale worries about the long-term future manageable.
  • Seek out a doctor with whom they feel comfortable. A doctor/patient relationship based on trust and mutual respect makes it easier to ask appropriate questions and to be a full participant in treatment planning.
  • Continue to draw on religious or spiritual beliefs and practices that have been helpful in the past. Patients who do not consider themselves religious or spiritual may still find comfort in activities that they found meaningful or inspiring, such as the performing arts or nature walks.
  • Keep a notebook for recording dates of treatments, medication side effects, laboratory test results, x-ray findings, etc. This record can be valuable in monitoring or evaluating one's emotional ups and downs as well as changes in physical health.
  • Keep a journal or diary for expressing feelings and emotional reactions. This record also may be useful in providing perspective.

Psycho-oncologists may also help patients deal with the increasing complexity of cancer therapy, as many patients have treatment teams consisting of several physicians in different subspecialties as well as social workers, nurses, clergy, and other professionals. Some patients experience the sheer number of caregivers involved in their treatment as an additional source of stress.

Treatments

Psycho-oncologists emphasize the importance of treating cancer patients as individuals with unique patterns of emotional responses to the disease as well as unique physical responses to medical and surgical treatments. Consequently, psycho-oncologists tailor their treatment to the needs and concerns of each patient. As of the early 2000s, psycho-oncologists may provide one or more of the following treatments for or services to cancer patients:

  • individual psychotherapy or counseling
  • leading support groups for patients and family members
  • crisis intervention
  • medication management
  • strategies for dealing with pain and other physical symptoms of cancer
  • monitoring the patient's emotional distress level
  • referrals to a pastoral counselor in the patient's faith tradition

Many psycho-oncologists use a pain scale, "distress thermometer," or self-administered questionnaires as a way of identifying the patient's specific areas of concern as well as monitoring his or her levels of distress at various points in the treatment process. Some commonly used questionnaires are the Mental Adjustment to Cancer (MAC) scale, first published in the United Kingdom in 1987; the Brief Symptom Inventory (BSI); and the Distress Management Screening Measure (DMSM), a newer scale that was tested in the United States in 2003–2004. Sample questions from these self-administered measures, as well as explanations of the treatments offered to cancer patients at different levels of emotional distress, can be found in Distress, a 32-page booklet available free of charge from the American Cancer Society and the National Comprehensive Cancer Network (NCCN).

Psycho-oncologists may also provide specialized counseling in the areas of death and bereavement or sex therapy if they have the appropriate training, or they may refer patients with these needs to qualified counselors in those fields.

Alternative and Complementary Therapies

Most psycho-oncologists support patients' use of complementary and alternative (CAM) therapies provided that they do not interfere with the patient's surgery, chemotherapy, or other mainstream treatments. Dr. Larry Dossey, a well-known expert in the field of alternative medicine, thinks that cancer patients are drawn to CAM treatments because they address questions about the larger meaning of illness that many patients have. He says, "The immense popularity of alternative therapies … may be due in large measure to the fact that they help people find meaning in their lives when they need it most." Significantly, several studies of cancer patients who have integrated CAM approaches into their treatment regimens have not found that these patients are more distressed or more likely to develop psychiatric disorders than patients who rely on conventional treatments alone.

Questions to Ask Your Doctor

  • How do you feel about my use of complementary or alternative therapies as part of my treatment program? Are there any that you would advise against?
  • What reading materials or other resources would you recommend so that I can help myself cope with my symptoms and the side effects of cancer treatment?
  • Where do you fit my emotional, psychological, and spiritual concerns into my treatment regimen?

As of 2005, the National Cancer Institute (NCI) and the National Center for Complementary and Alternative Medicine (NCCAM) are jointly funding clinical trials of several complementary and alternative treatments for cancer. Present trials include studies of yoga, Reiki, acupuncture, massage therapy (for cancer-related fatigue), hyperbaric oxygen therapy, mistletoe extract, and pancreatic enzyme therapy (for pancreatic cancer). Details of these clinical trials are available on the NCCAM website.

New Trends in Research in Psycho-Oncology

Areas of particular concern to psycho-oncologists in the early 2000s include cultural differences that affect people's patterns of coping with cancer, and the long-term psychological effects of being a cancer survivor. With regard to the first, recent European studies suggest that English-speaking patients and patients from southern Europe have different styles of coping with cancer diagnosis and treatment even though both groups have similar percentages of highly distressed patients. With regard to survivorship, the Behavioral Research Center of the American Cancer Society is conducting a long-term study of cancer survivors' quality of life, with a special focus on their psychological adjustment and family relationships, to be completed in 2015.

Resources

Books

Dossey, Larry, MD. Healing Beyond the Body: Medicine and the Infinite Reach of the Mind. Boston and London: Shambhala, 2001.

Holland, Jimmie, MD, and Sheldon Lewis. The Human Side of Cancer: Living with Hope, Coping with Uncertainty. New York: HarperCollins Publishers, 2000.

Periodicals

Davidson, R., L. Geoghegan, L. McLaughlin, and R. Woodward. "Psychological Characteristics of Cancer Patients Who Use Complementary Therapies." Psycho-Oncology 14 (June 10, 2004): 187–195.

Hoffman, B. M, M. A. Zevon, M. C. D'Arrigo, and T. B. Cecchini. "Screening for Distress in Cancer Patients: The NCCN Rapid-Screening Measure." Psycho-Oncology 13 (November 2004): 792–799.

Holland, Jimmie C., MD. "Psychological Care of Patients: Psycho-Oncology's Contribution." Journal of Clinical Oncology 21 (December 2003): 253S–265S. This article was originally given as the American Cancer Society Award Lecture at the annual meeting of the American Society of Clinical Oncology in May 2003.

Patenaude, A. F., and M. J. Kupst. "Psychosocial Functioning in Pediatric Cancer." Journal of Pediatric Psychology 30 (January-February 2005): 9–27.

Sunga, Annette, MD, Margaret Eberl, MD, Kevin C. Oeffinger, MD, et al. "Care of Cancer Survivors." American Family Physician 71 (February 15, 2005): 699–706.

Organizations

American Psychosocial Oncology Society (APOS). 2365 Hunters Way, Charlottesville, VA 22911. (434) 293-5350. .

Behavioral Research Center, American Cancer Society. 1599 Clifton Road NE, Atlanta, GA 30329. (800) 758-0227 or (404) 329-7772. .

National Comprehensive Cancer Network (NCCN). 500 Old York Road, Suite 250, Jenkintown, PA 19046. (215) 690-0300. . The NCCN is a consortium of 19 major cancer centers in the United States.

Other

American Cancer Society (ACS) and National Comprehensive Cancer Network (NCCN). Distress: Treatment Guidelines for Patients, Version I. Jenkintown, PA: NCCN, 2004.

National Cancer Institute (NCI) and National Center for Complementary and Alternative Medicine (NCCAM). Cancer Facts: Complementary and Alternative Medicine. Bethesda, MD: NCCAM, 2004. .

—Rebecca Frey, PhD

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Psycho-oncology is a field of interdisciplinary study and practice at the intersection of lifestyle, psychology and oncology. It is concerned with aspects of cancer that go beyond medical treatment and include lifestyle, psychological and social aspects of cancer. Sometimes it is also referred to as psychosocial oncology or "behavioral oncology" because it deals with psychosocial and behavioral topics. The field is concerned both with the effects of cancer on a person's psychological health as well as the social and behavioral factors that may affect the disease process of cancer and/or the remission of it. Practitioners of "proactive psycho-oncology" see their work as an autonomous intervention intended to reverse - in the first place - the epigenetic pressure that led to the genetic changes and later the formation of tumors.

This is where the effects of:

Psycho-oncology, as a subspeciality, addresses the two major psychological dimensions of cancer: the psychological responses of patients to cancer at all stages of the disease and that of their families and caretakers (called "oncopsychology"); and the psychological, behavioral and social factors that may influence the disease process (called "psychosocial-oncology").

Psycho-oncology is an area of multi-disciplinary interest and has boundaries with the major specialities in oncology: the clinical disciplines (surgery, medicine, pediatrics, radiotherapy), epidemiology, immunology, endocrinology, biology, pathology, bioethics, palliative care, rehabilitation medicine, clinical trials research and decision making, as well as psychiatry and psychology.

Contents

Aspects

The appearance of a family illness involves some changes and these in turn, involves the generation of new family needs, needs that naturally going to be changing throughout its life cycle.[1]


The psycho-oncology is provided the following objectives:

  • Conduct a comprehensive care that takes into account aspects: physical, emotional, social and spiritual, which inevitably will lead to attention to both individual and family and society.
  • The patient and family are the unit to be treated: emotional support and communication with the patient, family and treatment team must be through a frank and honest.
  • Promoting autonomy and dignity of the patient with the sense of preserving and restoring all abilities, both practical and emotional and relational patients.
  • Active therapeutic concept: incorporating a rehabilitative attitude towards the patient's full recovery.
  • Importance of the environment, atmosphere of respect, comfort, support and communication have a decisive influence in controlling symptoms.[2]

Early studies of psychological adjustment to cancer addressed issues of communication and management of guilt (Abrams, 1953; General Hospital in Boston, Massachusetts, 1950). Almost simultaneously, Arthur Sutherland in 1952 established the first unit of psychiatry oncology at the Cancer Center Memorial Sloan-Kettering (MSKCC) in New York, it has evolved to the modern Department of Psychiatry and Behavioral Sciences.[3]


Psycho-Oncology is a journal published by John Wiley & Sons which contains articles related to research in the field of psycho-oncology.

There is an international society, the International Psycho-Oncology Society, that is "dedicated to fostering the science of psychosocial and behavioral oncology and improving the care of cancer patients and their families throughout the world".[citation needed]

Pediatric Psycho-oncology

Pediatric psycho-oncolology is a sub-field of psychological research and practice that lies at the intersection of psycho-oncololgy and pediatric psychology. It is primarily concerned with improving psychosocial outcomes among children and adolescents who have been diagnosed with cancer.

Advances in the treatment of pediatric cancers has resulted in significant gains in 5 year survival rates, increasing from 58.6% (1974-1976) to 78.9% (1995-2001)[4] However, even after successfully completing treatment, concerns remain about the quality of life of youth diagnosed with cancer. One domain of functioning that is of particular concern is that of peer relationships.[5] A recurrent finding in the literature indicates difficulties in social interaction for youth diagnosed with cancer; with a recent meta-analysis indicating an effect size of 0.58 for social problems.[6] Survivors of childhood cancer have been identified as being more socially isolated and withdrawn than their peers or siblings[7][8][9] as well as engage in less than half the number of social activities as their peers.[10] Impairments in social functioning are particularly important given the impact of this domain on other areas of functioning, including overall social, emotional and cognitive growth.[11] Poorer social functioning in youth (as demonstrated by fewer peer relationships, relationships of lower quality, isolation, and/or peer rejection) has been associated with: depressive symptoms,[12] school dropout,[13] and lower economic success in adulthood.[14]

Research in Pediatric Psycho-oncology

Research on pediatric psycho-oncology includes studies of:

  • Peer relationships
  • Short and long-term psychosocial outcomes
  • Health outcomes
  • Emotional adjustment
  • Psychological adjustment among siblings and parents of pediatric cancer patients


Findings regarding long-term outcomes for social adjustment among pediatric cancer survivors are mixed:

  • One study demonstrated that cancer survivors, compared to controls, show poorer functioning in love/sex relationships ((cohabiting and non-cohabiting sexual relationships), friendships (relationships of at least 2 years with named individuals), and non-specific social contacts (social exchanges with strangers or acquaintances).[15]
  • Another study indicated that survivors and comparison peers were similar on a variety of outcomes, including family background, social self-concept, social competence, family relationships, friendships, and romantic relationships. Mothers reported that survivors engaged in fewer activities than comparison peers. The proportion of participants who lived with their parents, were dating, and expressed plans to marry or have children was similar between groups.[16]
  • In a Nordic sample of childhood acute myeloid leukemia, Wilms tumor and infratentorial astrocytoma survivors, no statistical differences were found between cancer survivors and comparison controls in terms of being recipients of social benefits, employment, or marital status. However, childhood cancer survivors were less likely of being parents.[17]

Decreased likelihood of being parents may be due to sterility resulting from treatment or fears of transmitting genetic susceptibility to their offspring.

Cancer Camps

Summer camps exist to provide children and adolescents with cancer a respite from every day life and the chance to connect with other youths facing cancer and chronic illness. Several of these camps also offer the opportunity for patients' and survivors' parents and siblings to participate.

An empirical study of children's satisfaction with their experience at cancer camp noted that recreation opportunities, peer support, and respite from their lives at home contributed significantly to camper's positive experiences.[18] A limited amount of research indicates that attending these camps may have beneficial effects on children with cancer and their families. For example, adolescents may feel more similar to camp peers than home peers, which may in turn lead to greater feelings of social acceptance, physical appearance, global self-worth, and fewer feelings of loneliness.[19] Cancer camps have also led to improvements in affect among children with cancer that last beyond the camp experience itself.[20]

References

  1. ^ García, B. 2011 Qualitative Research Of The Caregiver Profile, Their Coping Styles And The Attachment Type With The Child Patients Of Cancer. Spain: Ramon Llull University
  2. ^ Mondragón, J. 1999 Manual de prácticas de trabajo social en el campo de la salud: Manual de prácticas de trabajo social en el campo de la salud: Madrid
  3. ^ Greer, B. 1994 Psycho-oncology, its aims, achievements and future tasks: Psychooncology
  4. ^ National: Ries LAG, Eisner MP, Kosary CL, Hankey BF, Miller BA, Clegg L, Mariotto A, Feuer EJ, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2002, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2002/, based on November 2004 SEER data submission, posted to the SEER website 2005.
  5. ^ Reiter-Purtill, J., & Noll, R. B. (2003). Peer relationships of children with chronic illness. In M. C. Roberts (Ed.),Handbook of pediatric psychology (3rd ed., pp. 176–197). New York, NY, USA: Guilford Press.
  6. ^ Pinquart, M. & Shen, Y. (2011) Behavior Problems in Children and Adolescents With Chronic Physical Illness: A Meta-Analysis. Journal of Pediatric Psychology. 36 (9): 1003-1016.
  7. ^ Noll, R. B., Bukowski, W. M., Davies, W. H., Koontz, S. S., & Kulkarni, R. (1993). Adjustment in the peer system of children with cancer: A two year follow up study. Journal of Pediatric Psychology, 18 , 43–56.
  8. ^ Schultz, K. A., Ness, K. K., Whitton, J., Recklitis, C., Zebrack, B., Robison, L. L., & Mertens, A. C. (2007). Behavioral and social outcomes in adolescent survivors of childhood cancer: A report from the childhood cancer survivor study. Journal of Clinical Oncology, 25 , 3649–3656.
  9. ^ Vannatta, K., Gartstein, M. A., Short, A., & Noll, R. B. (1998). A controlled study of peer relationships of children surviving brain tumors: Teacher, peer and self ratings. Journal of Pediatric Psychology, 23 , 279 287.
  10. ^ Pendley, J. S., Dahlquist, L. M., & Dreyer, Z. (1997). Body image and psychosocial adjustment in adolescent cancer survivors. Journal of Pediatric Psychology, 22 , 29–43.
  11. ^ Newcomb, A. F. & Bagwell, C. (1996) ‘The developmental significance of children’s friendship relations’, in W.M. Bukowski, A. F. Newcomb & W. W. Hartup (eds), The company they keep: Friendship in childhood and adolescence , pp. 289–321. Cambridge, USA: Cambridge University Press.
  12. ^ Morison P, Masten AS. Peer relationships in middle childhood as a predictor of adaptation in adolescence: a seven-year follow-up. Child Dev. 1991;62(5):991–1007
  13. ^ French DC, Conrad J. School dropout as predicted by peer rejection and antisocial behavior. J Res Adolesc. 2001;11(3): 225–244
  14. ^ Conti G, Galeotti A, Meuller G, Pudney S. Popularity. Institute for Social and Economic Research; 2009. Publication No. 2009–03. Available at: www.iser.essex.ac.uk. Accessed April 20, 2010
  15. ^ Mackie, E., Hill, J., Kondryn, H., & McNally, R. J. Q. (2000). Adult psychosocial outcomes in long-term survivors of acute lymphoblastic leukaemia and Wilms’ tumour: A controlled study. Lancet, 355, 1310–1314
  16. ^ Gerhardt CA, Vannatta K, Valerius KS, Correll J, Noll RB: Social and romantic outcomes in emerging adulthood among survivors of childhood cancer. J Adol Hlth, doi:40 462.e9–462.e15, 2007.
  17. ^ Jóhannsdóttir, I.M.R., Hjermstad, M.J., Moum, T., Wesenberg, F., Hjorth, L., Schrøder, H., Lähteenmäki, P., Jónmundsson, G., and Loge, J.H. (2010) Social outcomes in young adult survivors of low incidence childhood cancers. Journal of Cancer Survivorship. 4 (2), 110-118, DOI: 10.1007/s11764-009-0112-3
  18. ^ Wu, Y.P., Prout, K., Roberts, M.C., Parikshak, S., & Amylon, M.D. (2011). Assessing experiences of children who attend a camp for children with cancer and their siblings: A preliminary study. Child & Youth Care Forum. Vol 40(2), pp. 121-133
  19. ^ Meltzer, L.J., & Rourke, M.T. (2005). Oncology summer camp: Benefits of social comparison. Children's Health Care. Vol 34(4), pp. 305-314
  20. ^ Wellisch, D.K., Crater, B., Wiley, F.M., Belin, T.R., Weinstein, K. (2006). Psychosocail impacts of a camping experience for children with cancer and their siblings. Psycho-Oncology, Vol 15(1), pp. 56-65

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