Genetic Predisposition to Cancer: The Role of Group Interventions in Psychological Adaptation
Mary Jane Esplen, RN, PhD
Molyn Leszcz, MD, FRCP(C)
Although a number of lifestyle and environmental factors have been associated with cancer, most do not have a strong effect on risk. In contrast, the presence of a family history of cancer may result in a greatly increased risk of the disease. About five to 10 percent of all cancers are believed to be hereditary in nature (Aaltonen et al., 1994). Estimates of overall relative cancer risk can be calculated. Models are available which provide individualized estimates of risk according to number and closeness of affected relatives, age of onset in affected relatives, and current age of the individual at risk (Eeles et al., 1994). In addition, recent advances in molecular genetics have made it possible to perform genetic testing in many families, thus determining which relatives of an affected individual carry a mutation in a cancer gene and are at high risk for developing cancer or passing on a risk for cancer to their offspring. Prominent advances include the discovery of the BRCA1 and BRCA2 gene mutations that predispose to breast and ovarian cancer; the MSH2 and MLH1 genes that predispose to Hereditary-Nonpolyposis colorectal cancer; and the APC gene for Familial Adenomatous Polyposis. The psychological impact of the life-altering knowledge that one may be genetically predisposed to develop breast, ovarian, or colorectal cancer, or potentially transmit this genetic predisposition to one's offspring, can be profound.
In this article, we provide an overview of this psychological impact and the role of supportive-expressive group therapy as an effective intervention, aiding in more accurately evaluating one's risk, dealing with the emotional impact, and facilitating effective surveillance, screening and attention to prophylaxis or early detection.
Psychological and Behavioral Impact
Individuals with a strong family history of cancer report high levels of estimated personal risk (Croyle & Lerman, 1993). Factors reported to affect risk perception include heightened media attention, the familial experience of cancer, myths and beliefs about cancer etiology and prognosis, and an identification with the affected relative (Kash, 1995; Stefanek, 1990). An anxious, preoccupied coping style, associated with intrusive thoughts about developing cancer, as well as an information-seeking and vigilant monitoring style, have also been linked to high estimations of personal risk (Lerman et al., 1995, Lerman et al., 1996a). Individuals at risk for cancer experience a wide range of emotions including anger, fear, guilt, isolation, grief, depression, embarrassment, and anxiety (Royak-Schaler & Binderly, 1993; Kelly, 1987). Individuals frequently confront strong emotional reactions to the interruption in family life associated with the cancer experience of an affected family member (Wellisch et al., 1992). In addition, a profound sense of loss, associated with the experience of an impaired or "shattered" invulnerability to serious illness, has emerged as one of the major psychological sequelae to cancer in a family member (Stefanek, 1990). The person experiences a loss of peace of mind and confidence concerning personal health. Individuals with a family history feel vulnerable to developing cancer, often believing it is not a question of "if" but rather "when" the cancer will emerge, with a consequent loss or failure to pursue long-term personal goals or dreams.
Specific personality and situational factors may influence the psychological impact of cancer in a family member. Some evidence suggests that age (e.g., adolescence) at the time of, and the amount of time since, the affected relative's diagnosis, and one's coping style are linked to the intensity and resolution of emotional impact (Kash, 1995; Wellisch et al., 1992; Lerman et al., 1996a). Perceptions of vulnerability appear to be a strong determinant of adherence to screening recommendations (Lerman et al., 1995). Some evidence suggests that compliance with screening recommendations is lower among individuals with a higher perceived risk and greater emotional distress, while other studies demonstrate poor screening adherence associated with lower levels of anxiety (Champion, 1991; Lerman et al., 1990).
Psychological Impact Associated with Genetic Testing
During the process of genetic testing, information is communicated which establishes with increased certainty an individual's personal risk of cancer. For those who receive a "positive" result, associated with an 60–90 percent lifetime risk for colorectal cancer, or 60–90 percent lifetime risk for breast cancer (BC), the test confirms what they fear most. Research on the anticipation of receiving positive genetic test results has found that individuals at risk for cancer anticipate negative psychological reactions, such as grief, depression and elevated levels of anxiety and fear (Lerman et al., 1996b; Dudokdewit et al., 1997). Early research indicates that for many of those diagnosed with cancer, the test results provide the answer to an important question: “Why did I develop cancer?” However, among affected individuals who have had cancer and who test positive for a genetic mutation, common reactions involve guilt related to the fear that they “may pass a mutation onto their children" (Croyle & Lerman, 1993; Lerman et al., 1996b; Dudokdewit et al., 1997). In "at risk" individuals, short-term reactions include shock and disbelief, high levels of cancer worry, an increased sense of vulnerability and a sense of isolation (Dudokdewit et al., 1997).
Counseling Approaches for Communicating Risk Information
An overview of studies that examine specific interventions for providing risk information to those with a family history of cancer demonstrates a progressive expansion of the depth and breadth of these interventions. All such studies are in BC and have focused on risk
counseling prior to proceeding to genetic testing. One controlled study (Lerman et al., 1995) compared an individualized risk
counseling approach focusing on information with standard health counselling. It reported a significantly greater improvement in risk comprehension in those receiving individual
counseling. However, two thirds of the individuals in both arms of the study continued to inaccurately perceive their personal risk at three month follow-up (Lerman et al., 1995).
Our experience leads us to hypothesize that this improvement, although statistically significant, was not clinically meaningful. A large proportion of these participants had frequent and intrusive thoughts about cancer at baseline, which persisted after the
counselling was completed. Information and psychoeducation have not addressed the emotional impact and consequent intrusive thoughts that confound the comprehension of risk information.
A randomized trial of a six-week psychoeducational group for women with a first degree relative with BC is being conducted (Kash et al., 1998). The components of the intervention include education about associated risk factors, cognitive restructuring to facilitate problem-solving, and the acquisition of active coping skills. Preliminary results demonstrate improvement in personal risk estimates, in adherence to screening behaviours at one year, and the correction of misconceptions about BC, risk factors and treatments. These preliminary results require confirmation in the full study cohort and active prolonged follow-up. Wellisch et al. (1998) conducted a study to develop a six-week group intervention for women at high risk for BC. The intervention combines structured information with emotional social support. Preliminary results indicate significant improvement in active coping, depression, and state anxiety. However, the investigators suggest that a longer intervention is required to enhance the venting of emotional suffering associated with continued uncertainty and to promote the resolution of unresolved grief, both about oneself and frequently about one's mother or other affected family member.
Role of Supportive-Expressive Group Interventions
Evidence is clearly emerging that the provision of information and content alone do not lead to effective comprehension or to improved psychological well-being for all individuals at risk for cancer. The empirical literature suggests that risk information is complex for individuals, and how it is comprehended can greatly vary from patient to patient. It is immensely important that individuals understand the implication of gene carrier status, in terms of the necessary role of screening tests that can result in early detection of disease. This information is crucial as these individuals will be confronted with lifestyle choices and, sometimes, dramatic health care options, such as prophylactic surgeries, mastectomies, chemoprevention trials, and dietary studies. Having this knowledge may also affect other family members who might not have considered the impact of these lifestyle changes. The challenges with which these individuals will be confronted requires in-depth understanding and reflection on their personal beliefs, experiences, life goals, and values.
Supportive-expressive group therapy has been shown to be an effective method for processing the emotional impact of the prospect of a potentially serious life-threatening illness such as cancer (Spiegel & Spira, 1991; Leszcz & Goodwin, 1998). Supportive-expressive group therapy is an integrative model, evolving from Yalom's interpersonal/existential model of group therapy (Yalom, 1995). Therapist techniques are geared towards encouraging individuals to express their thoughts and feelings openly in a socially supportive, homogenous, non-threatening, non-judgmental, and safe environment. In this group model, social support, affective exploration, and genuine engagement and confrontation with existential challenges of life are provided along with a focus on active cognitive and behavioral coping skills. This supportive approach results in the reduction of general emotional arousal and encourages the examination of specific affects. Following arousal discharge, members are better able to contemplate information relevant to their states that previously may have been too anxiety-provoking to consider, thereby increasing the opportunity for effective coping and decreasing behaviors that may obstruct necessary screening.
We are conducting research on the effectiveness of this model with populations predisposed to breast or colorectal cancer. For example, Esplen et al. (1998) designed a study to assess a 12-session supportive-expressive group intervention for women with a family history of BC. The intervention occurred over eight weekly sessions followed by four once-monthly sessions. Practitioners from psychiatry and psychology led the group. The first four sessions are unstructured and focused on the prior experiences of cancer within group members’ families. These sessions are frequently quite emotional, involving the expression of grief regarding prior losses and the expression of fear and anxiety regarding the future possibility of a diagnosis of breast cancer. In session seven or eight, a genetic counselor visits the group. The session is unstructured and provides a safe, non-judgmental environment where the women can explore areas of confusion about risk, risk factors, genetic technology, and so on. In addition, one group session is set aside for the members to bring a “guest,” usually another family member at risk or with experience of cancer, or a spouse. During the session, the group explores the impact of cancer risk and its implications for the relationship. Preliminary results of the research have demonstrated a significant reduction in avoidance and intrusive thoughts about BC risk, anxiety, and depression. In addition, the intervention resulted in enhanced knowledge about BC risk and genetics and was associated with improved compliance with screening.
Clearly, the group intervention capitalizes on a number of therapeutic mechanisms, including: the facilitation of mutual support, the creation of a sense of "normalization" through shared experience, the encouragement of emotional expressiveness, the promotion of family and social support, the enhancement of an expanded repertoire of coping skills, vicarious learning through others, and detoxification of being "at risk" (Yalom, 1995). These elements of the group approach are relevant for metabolizing core aspects of the psychological impact of having a family history of cancer, such as feelings of identification, and for processing grief and mourning through the sharing of memories of the experiences of cancer with others in a similar situation.
Psychosocial interventions must keep pace with biological advances if health care is to indeed be holistic and integrated, and are especially critical because of the rapid advances in genetic testing. Group interventions appear effective in providing required information in a meaningful context. This can assist in psychosocial adjustment, future decision-making, and the ability to make healthy lifestyle choices. It also has implications for health care monitoring that may have an influence on early detection and treatment of disease.
Aaltonen, L.A., Sankila, R., Mecklin, J.P., Jarvinen, H., Pukkala, E., Peltomaki, P., dela Chapelle, A.
(1994). A novel approach to estimate the proportion of hereditary nonpolyposis colorectal cancer of total colorectal cancer burden.
Cancer Detection and Prevention, 18, 57-63.
Champion, L. (1991). The relationship of selected variables to breast cancer detection behaviour in women 35 and older.
Oncology Nursing Forum, 18, 733-739.
Croyle, R. & Lerman, C.
(1993). Interest in genetic testing for colon cancer susceptibility: Cognitive and emotional correlates.
Preventive Medicine, 22, 284-292.
Dudokdewit, A., Tibben, A., Duivenvoorden, H., Frets, P., Zoeteweij, M., Losekoot, M., van Haeringen, A., Niermeijer, M., Passchier, J., et al. (1997). Psychological distress in applicants for predictive DNA testing for autosomal dominant heritable late onset disorders.
Journal of Medical Genetics, 34, 382-390.
Eeles, R.A., Stratton, M.R., Goldgar, D.E. Easton, D.F. (1994). The genetics of familial breast cancer and their practical implications.
European Journal of Cancer, 30, 1383-1390.
Esplen, M.J., Toner, B., Hunter, J., Glendon, G., Butler, K. & Field, B. (1998). A group therapy approach to facilitate integration of risk information for women at risk for breast cancer, Canadian Journal of Psychiatry,
(1995). Psychosocial and ethical implications of defining genetic risk for cancers. Annals of the New York Academy of Sciences,
Kash, K., Miller, D.G., Osborne, M.P., Holland, J.C.
(1998). Psychoeducational intervention for women with family histories of breast cancer. Psycho-Oncology, 7, 273.
Kelly, P. (1987). Risk counseling for relatives of cancer patients: New information, new approaches.
Journal of Psychosocial Oncology, 5, 65-79.
Lerman, C., Rimer, B., Trock, B., Balshem, A and Engstrom, P.
(1990). Factors associated with repeat adherence to breast cancer screening.
Preventive Medicine, 19, 279-290.
Lerman, C., Lustbader, E., Rimer, B., Daly, M., Miller, S., Sands, C. Balshem, A.
(1995). Effects of individualized breast cancer risk counseling: A randomized trial.
Journal of the National Cancer Institute, 87, 286-292.
Lerman, C., Schwartz, M.D. Miller, S.M., Daly, M., Sands, C., Rimer, B.K. (1996a). A randomized trial of breast cancer risk counseling: Interacting effects of counseling, educational level, and coping style.
Health Psychology, 15, 75-83.
Lerman, C., Marshall, J., Audrain, J., Gomez-Gaminero, A. (1996b). Genetic testing for colon cancer susceptibility: Anticipated reactions of patients and challenges to providers.
International Journal of Cancer Prevention and Oncology, 69, 58-61.
Leszcz, M. & Goodwin, P.
(1998). The rationale and foundations of group psychotherapy for women with metastatic breast cancer.
International Journal of Group Psychotherapy, 48, 245-273.
Royak-Schaler, R. & Binderly, B.L.
(1993). Challenging the breast cancer legacy. Harper Perennial: New York.
Spiegel, & Spira, J. (1991). Supportive-expressive group therapy: A treatment manual of psychosocial intervention for women with recurrent breast cancer. Psychosocial Treatment Laboratory Breast Cancer Intervention Project, Stanford University School of Medicine, California.
Stefanek, M. (1990). Counseling women at high for breast cancer.
Oncology, 4, 27-36.
Wellisch, D.K., Gritz, E.R., Schain, W., Wang, H., Siau, J.
(1992). Psychological functioning of daughters of breast cancer patients, Part II, Psychosomatics,
Wellisch, D., Hoffman, A., Goldman, S. & Love, S.
(1998). A group intervention for women at high risk for breast cancer,
Psycho-Oncology, 7, 272.
(1995). The theory and practice of group psychotherapy. Basic Books: New York.
This article was published in the December 1999/January 2000 issue of
The Group Circle.