Third Annual Conference of the American Psychosocial Oncology Society (APOS)
Amelia Island, Florida - February 16 – 19, 2006
(Reported by Rita Calderon, LCSW; email@example.com)
This conference focused on research, advocacy and program development of the psychosocial aspects of oncology toward the goal of improving and maximizing quality of care for people with cancer.
The plenary featured the presentation of the 4th Holland Award for Distinguished Leadership, which was given to Kathleen M. Foley, M.D., of Memorial Sloan Kettering Cancer Center in NYC, honoring her work as scientist, educator and humanitarian. She has been a prominent leader in addressing psychosocial needs of the seriously ill and dying not only in the US but internationally.
In 1980 Dr. Foley organized the first psychosocial center to address psychosocial patient care alongside medical care. In her address today Dr. Foley spoke about the ongoing need to advance national and international programs in palliative care, noting that 6,262,721 people around world died of cancer just in the year 2000.
She noted the challenges as other serious health problems demand attention: the number of patients in need of palliative care is much higher for HIV/AIDS, and the population of aging HIV/AIDS patients is increasing. She noted limitations in healthcare resources, including lack of government policies to support hospice and palliative care, and lack of government policies to facilitate opioid drug availability for pain relief.
Dr. Foley stated that palliative care is a public health issue because it ultimately affects all people – at some point in life we will face either our own illness or that of a loved one. Thus palliative care as a prevention model addresses needless suffering, provides peer education and patient-centered care and incorporates self-management programs.
Dr. Foley talked about who is helping in the international palliative care area and mentioned The World Health Organization’s cancer unit in Geneva. She also noted www.eolc-observatory.net as a good website on international palliative care information. CARE provides a global network on what other countries are doing.
NCI has supported a research effort UK, Canada and the US; as a result researchers met and developed two major collaboratives including multi disciplinary groups working together to research palliative care in cancer. NIH published material on improving end of life care that resulted from a meeting in 2004.
Keynote Address: “We Can Do More: Capturing Meaning and Improving Health for Cancer Patients with Psychological Interventions,” Barbara L. Anderson, Ph.D., professor at Ohio State University.
As principal investigator of the Stress and Immunity Breast Cancer Project, Dr. Anderson is exploring the question of whether psychological interventions can impact biological response, health and cancer progression.
Many of her publications are classics in the field and she was among the first to address sexual needs of cancer patients. Her salient message today is that we can do more to improve outcomes with psychological interventions and to capture the sense of meaning that cancer has for patients.
When patients can find meaning in dealing with their cancer, they are better able to maintain a positive perspective, purpose and goals even in the face of adversity. For some patients it includes spirituality and faith and others not, but for all it can lessen the sense of confusion and loss, life as negative experience, and lack of motivation and goals. Active coping strategies can strengthen this sense of meaning.
It is obvious that a diagnosis of cancer produces significant stress. For many people this stress creates anxiety, which comes in stages: first hearing the diagnosis, then talking with doctors, then dealing with treatment decisions when all the information sinks in, then dealing with family and friends, and so on through treatment and recovery.
No sooner than the initial shock of hearing a diagnosis of cancer is processed then it is followed by the next stressor. How people deal with this stress may play a vital role in their experience with cancer. Care and attention should be given the patient at each stage to minimize emotional suffering and enhance coping.
Anderson studied 227 random female cancer patients, age 25 to 85, from all walks of life on the socio economic scale. These women enrolled at a very difficult time: half had received mastectomies and had just learned they were node positive. They were randomized into psychosocial treatment and no treatment.
Women were offered relaxation interventions and high fiber low fat diets. Four months later they found signs of lowered emotional stress. The intervention group reported higher social support and family support, as well as higher compliance with medication and changing diets. There was no intervention for smoking reduction per se but reduction strategy was discussed. Although smoking was low to begin with, it was found that more smokers among the intervention group stopped.
The study showed improvement in the immune system when measuring stress by T-cell maintenance activity. At first the group met weekly, and after four months moved to monthly meetings for the next eight months. While the findings were modest, the hope is that with enough time there would be significant effects of reduced emotional distress that would eventually lead to improved health.
Their study did show that lowering stress could positively impact health status. The major lesson learned, according to Dr. Anderson, was that “it’s all about anxiety” – if psychosocial interventions could do only one thing, the best would be to lower anxiety.
Anxiety has at least three aspects – 1) a generalized overall sense of anxiety lowers concentration and impedes functioning; 2) cancer specific anxiety is characterized by recurring images, avoidance, suppressed feelings, and in extreme cases, non-compliance with treatment or therapies; and 3) disease specific, or site specific anxiety is materialized in the form of localized stress – wherein one may avoid activities related to the body, including sexual relations.
Anderson reported the research shows that 28+% of women with breast cancer have acute stress disorder. There is a negative correlation of natural killer cell activity after psychosocial interventions. The data showed lowered stress in 18 months on the basis of decreased killer cell activity.
One audience comment concerned the second type of anxiety, cancer specific: he called for better measures of distress to differentiate between a patient who understandably thinks about her breast cancer intensively, but in practical terms, such as treatment decisions, impact on career, family, etc. – and a patient whose thoughts about the diagnosis cause excessive emotional distress, or someone who already had symptoms of PTSD, post-traumatic stress disorder.
Although the interventions in the study lowered anxiety for everyone, it was noted that they were more effective in treating anxiety than depression. Referrals for psychotherapy or other appropriate interventions might be in order for patients who experience depression as well as excessive anxiety.
The study also found similar outcomes in patients with recurrences. A sense of hopelessness at recurrence confers a risk for depressive symptoms, and helping people to become more active or maintain their prior positive activities enhanced their coping with cancer.
In conclusion, in her ongoing research Dr. Anderson has studied women at 18 months, 24 months and 30 months after diagnosis. The findings indicate that social and physical functioning predict distress among survivors. A sense of meaning mediates the negative and positive, and helps patients to lessen the negative impact of cancer.
Special Presentation by David Spiegel, M.D.: Stress and Cancer: Innovations in Biopsychosocial Interventions, Endocrine, and Immune Function. Dr. Spiegel is Willson Professor & Associate Chair, Psychiatry & Behavioral Sciences; Director of Center on Stress and Health, Stanford University School of Medicine, California.
Medical Director of Stanford Center for Integrative Medicine, Stanford Medical Center.
David Spiegel conducted the landmark studies at the Commonweel Cancer Center in California showing benefits for women with metastatic breast cancer who participated in support groups. He noted that the whole story of cancer cannot be explained just by biology.
Because cancer brings with it a whole series of social stressors, the body’s psychological systems are called into play. Spiegel urges us to think of cancer as the chronic stressor, as it is more of a chronic rather than terminal illness for many survivors. Cancer patients live with cancer every day of their lives and can’t forget it, but at the point of diagnosis we think it’s going to kill us, thus we need to think about it in existential terms.
The way stress response systems work may shift the effect of breast cancer, because the body has an ability to resist progression of disease.
Around 25% of cancer patients are depressed. While there is not much evidence that depression elevates the risk of cancer incidence, it has been found to elevate the risk of disease progression. For example, the more trauma in breast cancer patients’ lives, the shorter is the time between original diagnosis and metastatic diagnosis.
Another study showed no overall history of stress and breast cancer association. It may be that breast cancer patients may be more apt to acknowledge stress.
Spiegel reviewed the strengths of psychosocial treatment therapy models in dealing with cancer: building bonds, detoxifying dying, and expression emotion are among the survival functions of such supportive/expressive group therapy.
In expressing emotion, patients develop the capacity to face their feelings directly, which is empowering and lessens confusion as they learn to restructure feelings in a supportive social environment. Thus emotion becomes a source of closeness rather than isolation.
The more metastatic breast cancer patients learned to express emotions, the less stressed they felt. Spiegel thinks there is not enough attention on affect; we need to know our emotions and why we feel them.
In detoxifying dying, patients restructure one overwhelming fear into a series of problems that can be identified and acknowledged: the process of dying, separation from loved ones, loss of control, and pain. Patients can more easily develop coping strategies when they have recognized and expressed some of these feelings and issues.
Spiegel once asked the Dalai Lama about the fear of discussing death, and the Dalai Lama said talking about it more makes it more familiar and therefore less frightening.
Spiegel also discussed the growing interest in brain studies, which suggest that changing how we think can change brain activity. Psychosocial factors such as stress and social support can affect endocrine activation and circadian rhythms and immune function. Altered circadian cortisol rhythms appear in depression and PTSD (post traumatic stress disorder).
In a study of 100 metastatic breast cancer patients, women with flatter cortisol had earlier mortality. Patients with suppressed emotional expression and those with fatigue also showed cortisol disruption. Disrupted diurnal cortisol was linked to tumor activity.
Reducing Disparities in Cancer Incidence, Morbidity and Mortality through Community-Focused Research.
Ronit Elk, Ph.D of the American Cancer Society stated that ACS is committed to reducing the disparities in cancer care in the US and in response have a program in the research department specifically designed to address the underserved, with $100million annually awarded to such research – 10% of research targets the poor and underserved populations.
African Americans are the largest group studied (writer’s note: other research studies African Americans across socio-economic lines) – but other groups including Native American, Latina, Chinese and Vietnamese are studied as well. Some community based studies focus on prevention, primarily promoting better health, and some on better screening.
1. Building Community Support for Juntos en la Salud: Cancer Prevention for Latinas.
Linda K. Larkey, Ph.D., University of Arizona Cancer Center, talked about family and community medicine and public health and the need to building community support for Latina people who get cancer. Larkey’s research emphasizes the benefit of one on one communication to hear patients’ concerns, looking at this group’s history of involvement with community partners like churches, community based organizations, agencies, and senior citizen centers.
A proposal was written to ACS comparing two intervention approaches: cultivating reciprocal support in groups versus individual education and social influence. Since 2004 nearly 700 women were recruited. The outcome indicated that mutual support is tantamount to active participation.
In educating Latinas about prevention resources, soliciting and sharing personal stories, and encouraging and measuring reciprocal support appears to work better: “do it because I like you and care about you,” is more effective within the low-income Latina culture than individual education and social influence.
For example, changing diets to include more fresh fruits and vegetables was attainable when put in the context of social support and ethnic pride. These results may be no surprise to many, but such basic research data is necessary in order to get programs and psychosocial interventions funded.
2. Cervical Cancer Study: Messengers for Health, Apsaalooke Reservation.
Adina Smith, Ph.D., studied a group of Crow women to increase awareness and screenings for cervical cancer. Native American women have significantly higher rates of cervical cancer; 3,710 women die from it annually.
Moreover, the word “cancer” is taboo among many in this group. In an initial survey, 37% did not have pap tests previous year, 34% hadn’t herd of a test for cervical cancer, and many had not heard about cervical cancer at all. In this study, conducted between 2001 and 2005, interventions included projects and activities such as monthly meetings, newsletters, annual retreats, yoga classes and other modalities.
There was also active individual outreach in tribal offices, grocery stores, etc., and group outreach in churches, beading groups, college, and homes. Youth outreach went out to schools, youth camp, and boys and girls clubs. In keeping with tribal traditions, the community worked in participation with the researchers.
Results showed an increase in understanding of the importance of cervical cancer screenings. As to reticence in talking about cancer, the study outcome found a community-wide request for additional cancer prevention programs.
Indeed the “Messengers for Health,” Crow women identified as natural helpers who disseminated screening information and support to women in the community, became the first women to have a Crow annual health fair.
Paper Abstracts on Breast Cancer.
1. Breast Cancer: Pilot Study on Education, Counseling and Adjustment for Patients and their Partners.
Wendy Budin, Ph.D., RN, Seton Hall University College of Nursing, So. Orange, NJ, with Carol Hoskins, Ph.D., RN, NY University College of Nursing, conducted a pilot study to test the feasibility of a randomized clinical trial (RCT) to compare the effectiveness of an intervention for women with breast cancer and their partners in relation to physical, emotion, and social adjustment outcome.
The study examined the effects of marital and other close relational support on the emotional and physical adjustment of both partners during the course of diagnosis, surgery, adjuvant therapy, and recovery. Role function and perceived health status were evaluated over time.
Findings from the Phase I longitudinal study supported the importance of education and supportive counseling for women with breast cancer and their partners. Phase 2 produced four informational research based videos for breast cancer patients and their partners, covering four stages: coping with diagnosis, recovering from surgery and ways to create support systems, understanding adjuvant therapy, and ongoing recovery.
The video on ongoing recovery helped not only patients and partners, but also their family and friends, with how to cope with the emotional aspects of cancer and living with new lifestyles. The third phase aimed to develop a brief telephone counseling intervention. This counseling covered issues such as promoting active participation in the breast cancer treatment process, and building skills to reduce stress and increase effective coping.
The outcome confirmed high retention rates of patient-partner pairs. The significance of this small study for this writer was the importance of giving quality attention to each phase of the cancer patient’s experience, and the importance of the role that social supports, whether a marital partner or friend and family or all of them together, can play in the cancer experience.
Other Symposia on Interpersonal Relationship Quality in People with Cancer.
Similar topics of partner support will be described briefly here -- note that “partner” for some studies includes friends and family or any close relationship the patient chose as important. In one presentation, Dr. Terry Badger, Ph.D., RN, University of Arizona College of Nursing, discussed her study of 95 women with breast cancer and their partners for anxiety, depression, fatigue and relationship satisfaction.
The goal here was to test the efficacy of telephone interpersonal counseling interventions. She found that the women’s anxiety worsened if their partners were anxious and/or depressed, resulting in lower relationship satisfaction. Not surprisingly, the women’s anxiety also predicted their partners’ anxiety.
Because partners are often excluded from treatment, this study is important in its conclusions that partners play an important role in patients’ recovery and should be included as part of treatment.
Another study investigated the impact of marital quality on breast cancer. In comparing two attributes, a confiding marriage and marital satisfaction, the interesting outcome suggests that a confiding marriage, and not marital satisfaction, predicts improved prognosis in women with Stage IIA – IIIB breast cancer. (Drs. Karen Weihs, University of Arizona; Timothy Enright, George Washington University, Washington, DC.)
(Writer’s note: These results, coupled with others reported in this conference, speak to the growing evidence that communication, and the patient’s ability, willingness, and opportunities to express his/her concerns and feelings about their illness, is paramount to quality of life survival. While other factors are extremely important, it appears that having someone to talk to – not necessarily a marital partner but a meaningful confidant – can have a profound impact on the patient’s sense of well-being, reducing anxiety, distress and depression. These conditions, as more research is showing, may impact immune function and overall health.)
Paper Sessions (continued)
2. Cognitive Function after Chemotherapy.
A study on breast cancer survivors’ performance on measures of attention was done by Kris Kaemingk, Ph.D. and others from the University of Arizona Health Sciences Center, Tucson, and University of Illinois at Springfield. It is known that chemotherapy adversely affects cognitive function, but rehabilitation programs lack validation to date.
One difficulty is predicting who will have cognitive deficits and who will not. Stress, depression and other factors could also impact performance at baseline. (Some studies show changes in the hippocampus part of the brain when depression is present.) In prior research breast cancer survivors’ attention was found to be weaker than other intellectual skills.
In this study, preliminary findings concluded that breast cancer patients’ performance in attention was frequently weaker than expected based on their overall intellectual function. Therefore attention interventions may be needed, and examination of individual patterns of performance may help to identify those who may benefit from rehabilitation programs.
3. Expressing Negative Emotions and Early Stage Breast Cancer.
Wayne Bardwell, and others at University of California San Diego (Moores UCSD Cancer Center, Department of Psychiatry, and Department of Family and Preventative Medicine). Research has suggested that psychotherapy has a positive impact on quality of life and survival in metastatic breast cancer.
Yet many people feel uncomfortable with negative emotions, preferring to emphasize a positive perspective. Researchers questioned whether the ambivalence to express negative feelings may affect mental/physical health rather than the expression itself. In this study negative emotional expression (NEE) was compared with ambivalence over emotional expression (AEE), to see how they relate to physical and mental health including depression in early-stage breast cancer patients.
Multiple mental health variables were used including depression, optimism, hostility, insomnia, social support and social strain, and physical health variables such as pain, gastrointestinal and other symptoms. The study concluded that greater ambivalence over expressing negative emotions is related to poorer mental health including depression, though less strongly linked to physical health.
Negative emotional expression was not strongly linked to poorer mental health and not to physical health; but along with high hostility, NEE was linked with clinically increased depression.
4. Cognitive Therapy for Depression in Women with Metastatic Breast Cancer.
Josee Savard, and others from Laval University Cancer Research Center, Quebec, Canada, the University’s School of Psychology, and Hopital du St-Sacrement in Quebec. The efficacy of cognitive therapy for metastatic breast cancer is understudied, despite the high prevalence of depression in women with this illness, and despite the establishment of cognitive therapy as an empirically supported treatment for depression generally.
While there is much evidence for improved quality of life through psychosocial interventions, actual increase in survival time is shown only in David Spiegel etal’s 1989 study on group psychotherapy. However, cross-sectional studies have found a link between depression and decreased immune functioning.
And while metastatic breast cancer patients have shown good effects from short-term cognitive group therapy, longer-term treatment has been inconclusive. In this study women were followed for post-treatment at three and six months. The women had eight weekly sessions of individual therapy, and three booster sessions at 3-week intervals following the end of treatment.
Multiple scales were used to measure psychological status. Immunological measures included lymphocyte levels, natural killer cell activity, and cytokine secretion. The study’s findings support the efficacy of cognitive therapy for depression for women with metastatic breast cancer. It also concluded that individual and booster sessions after treatment termination may be important in maintaining the positive effects over time.
Symposium 3: Interpersonal Relationship Quality
1. Intimacy Issues for Veterans with Colorectal Cancer and Ostomies.
Robert Krouse, M.D., Director Surgical Research, Southern Arizona Veterans Affairs Health Care System, Associate Prof. Surgery, University of Arizona, Director Supportive Care Group, Arizona Cancer Center. Dr. Krouse studied a group of 250 cancer patients who had colostomies resulting from their cancer treatment, to investigate their health-related quality of life difficulties, examine their coping strategies and obstacles, and advice they would give to other patients.
Just over half the patients were married. Often, concern about an ostomy overrules all other concerns of the patient. Many patients described problems around sexuality, sexual relations and intimacy due to wearing an ostomy. While many men learn to adapt and thrive, there is a difficult adjustment period, and some reported the sessation of sexual relations and depressed moods.
Eighty percent of the men reported erectile problems after surgery (nearly 90% of the patients were men; females with ostomies had more positive outcomes, but their numbers were much smaller). The group’s recommendations included focus groups like this one, and adaptive techniques, such as wearing a patch to cover the colostomy pouch. Future plans include more focus on women’s issues around intimacy and sex.
(Reported by Rita Calderon, LCSW; firstname.lastname@example.org)
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