Distress and Psychosocial Needs of a Heterogeneous High Risk Familial Cancer Population

In order to assess the levels of distress and psychosocial support needs of a high risk population, we undertook a study to look at both the objective and subjective levels of distress and the wants and needs of individuals from a high familial cancer risk population. Three hundred and eighteen individuals (160 affected, 158 unaffected) completed several distress and psychosocial needs questionnaires (including the Brief Symptom Inventory-18). Sixty key informants were also surveyed about their perspective on the support needs of this population. In the largely female (90%), largely HBOC syndrome group (approximately 90%), 20% had significant levels of generalized distress, with no significant differences between affected and unaffected individuals. Generalized distress was also not significantly different as a function of mutation status. Individuals who received inconclusive test results, however, were more likely to indicate somatic symptoms of distress. Those individuals who did not have social support were more likely to be those who had never had cancer and who either had a mutation, received inconclusive test results, or were not tested. Key informants were most likely to indicate that patients need more support. These results provide evidence for the importance of establishing regular psychosocial distress screening, including a focus on somatic symptoms, in such high risk populations.     

Experiences and Decisions that Motivate Women at Increased Risk of Breast Cancer to Participate in an Experimental Screening Program

Although the discovery of mutations on BRCA1 and BRCA2 genes associated with high breast cancer risk has given rise to screening and surveillance initiatives, there is little documentation on why high-risk women choose to enter screening programs. The objective of this qualitative study was to develop a detailed understanding of the experiences and decisions that motivate women with increased risk of hereditary breast cancer to participate in the multicentered Quebec experimental breast screening program. Our study involved 21 participants who were either BRCA carriers or at risk and untested. These women were interviewed while participating in the screening program. Our study demonstrates that intensive screening programs may provide valuable reassurance for women with increased familial risk of hereditary breast cancer, who count on early detection and rapid response from professionals if and when a problem arises. Health professionals must take these and others concerns into account to ensure their interventions are most consistent with women’s needs.     

Short- and Long-Term Impact of Receiving Genetic Mutation Results in Women at Increased Risk for Hereditary Breast Cancer

Forty-seven unaffected women from high-risk breast cancer families who had received results for hereditary breast/ovarian predisposition genes between 1 month and 5 years ago were interviewed regarding their experiences. Women responded to open-ended questions. The initial emotional turmoil reported by most was generally short lived. However, the impact of genetic testing went beyond the individual to the extended family and social context, particularly in the short-term. A common theme was the difficulty associated with divulging a result to family members, who were also adjusting to their own result. The majority of carriers reported advantages that were both physical (options for surveillance programs and prophylactic surgery) and emotional (reduced uncertainty, increased awareness of options and knowledge about risk, preparation time). Most carriers reported no change in lifestyle although some reported discovering their mutation status as a positive life-changing experience. Implications for genetic counseling and further research are discussed.     

Psychosocial Adaptation of Childhood Cancer Survivors and their Siblings

To best use resources in helping childhood cancer survivors, ascertaining the psychosocial adaptation deficit of the survivor is necessary. Psychosocial adaptation comprises a subjective, self-reflective indicator and objective indicators in terms of education, employment, and other achievements. While deficit is possible due to the trauma caused by cancer and its treatment, research evidence for the deficit is required to ascertain its existence. This study represents such a research endeavor based on a survey of 137 childhood cancer survivors and 101 cancer-free siblings of the survivors in Hong Kong, China. Results reveal weak and inconsistent differences in psychosocial adaptation between the survivor and his or her sibling. The effects of cancer treatment and service involvement on psychosocial adaptation were generally sporadic. Age presented the most pervasive influence on psychosocial adaptation. The results imply a justification for current practices in sustaining the psychosocial adaptation of childhood cancer survivors.     

Risk Perception Among Women at Risk for Hereditary Breast and Ovarian Cancer

This paper is a summation of selected history and literature on risk perception as it pertains to genetic counseling and testing, with a focus on hereditary breast and ovarian cancer, the area which has seen the greatest focus of research. Risk perception is a complex and incompletely understood concept which seeks to capture the myriad meanings that an individual attaches to the experience of being at increased risk. It is now evident that “risk”, as perceived by the patient, is different from the objective, quantifiable risk estimate often provided to them during genetic counseling. What is also clear is that the complicated set of factors influencing risk perception are not yet well understood, nor are the mechanisms the lead from perceived risk to behavioral change in the patient. In situations where specific behavioral changes such as increased cancer screening are an inherent goal of the genetic risk assessment and counseling process, gaining a better understanding of the specific factors motivating change will be essential.     

The Relation of Social Support and Coping to Positive Adaptation to Breast Cancer

Survivors of childhood cancer are at risk of compromised physical and psychological functioning as a result of disease and treatment. However, survivors experiencing similar physical problems vary considerably in their self-reported Quality of Life (QOL) raising questions about the processes underlying adjustment and maintenance of QOL. Seventy seven survivors of either Acute Lymphoblastic Leukaemia (ALL) or tumours of the Central Nervous System (CNS) completed a standardised measure of QOL and semi-structured interview. Based on theoretical assumptions that QOL reflects a difference between what survivors can, and would like to be able to do, interviews were coded for reports of discrepancies and any coping strategy employed. Survivors of tumours of the CNS reported worse QOL and more discrepancies than survivors of ALL. A significant relationship was found between QOL measured by questionnaire and number of reported discrepancies. Five kinds of strategies to reduce discrepancies were identified: changing activity, devising a “plan of action”, emotional denial, making social comparisons, and seeking social support. Survivors who reported neither discrepancies nor strategies had better QOL than those who reported both discrepancies and strategies or discrepancies but no strategies. Data are discussed in terms of rehabilitation of survivors of childhood cancer.     

Linking Genetic Counseling Content to Short-Term Outcomes in Individuals at Elevated Breast Cancer Risk

Few studies have linked actual genetic counseling content to short-term outcomes. Using the Self-regulation Model, the impact of cognitive and affective content in genetic counseling on short-term outcomes was studied in individuals at elevated risk of familial breast-ovarian cancer. Surveys assessed dependent variables: distress, perceived risk, and 6 knowledge measures (Meaning of Positive Test; Meaning of Negative Test; Personal Behavior; Practitioner Knowledge; Mechanisms of Cancer Inheritance; Frequency of Inherited Cancer) measured at pre- and post-counseling. Proportion of participant cognitive and affective and counselor cognitive and affective content during sessions (using LIWC software) were predictors in regressions. Knowledge increased for 5 measures and decreased for Personal Behavior, Distress and Perceived Risk. Controlling for age and education, results were significant/marginally significant for three measures. More counselor content was associated with decreases in knowledge of Personal Behavior. More participant and less counselor affective content was associated with gains in Practitioner Knowledge. More counselor cognitive, and interaction of counselor cognitive and affective content, were associated with higher perceived risk. Genetic counselors dominate the content of counseling sessions. Therefore, their content is tied more closely to short term outcomes than participant content. A lack of patient communication in sessions may pose problems for understanding of complex concepts.     

The Relationship Between Agentic and Communal Personality Traits and Psychosocial Adjustment to Breast Cancer

Agency, communion, unmitigated agency (UA), and unmitigated communion (UC) are related to psychosocial health outcomes in nonclinical and medical populations. This study examined the relationship between these personality traits and emotional and interpersonal well-being, as up to 50% of women experience difficulties in psychosocial adjustment after being diagnosed with breast cancer. Seventy-four women newly diagnosed with breast cancer completed baseline assessment measures within 2 weeks prior to their first chemotherapy treatment or at the beginning of their hormonal therapy. Findings indicate that (1) agency and UA are important correlates of emotional and interpersonal adjustment and should be considered when attempting to identify women at high risk for psychosocial distress, and (2) UC deserves increased attention in behavioral medicine research, given its strong relationship with emotional distress in a breast cancer population. Thus, evidence continues to accumulate regarding the important relationship of these personality traits to psychosocial outcomes in medical populations.     

Genetic Risk,Perceived Risk,and Cancer Worry in Daughters of Breast Cancer Patients

This study explored relationships between worry, perceived risk for breast cancer, consulting a genetic counselor, having genetic testing, and genetic risk for women whose mothers had breast cancer. Analyses involved data from a community-based phone survey of women whose mothers had breast cancer. Participants were categorized as having low, intermediate, or high genetic risk based on their reported family history, in accordance with an accepted classification scheme. The Lerman Breast Cancer Worry Scale measured worry, and participants reported their perceived lifetime likelihood of breast cancer, risk compared to others, and chance from 1 to 100. ANOVA, chi-square, and multiple regression analyses were conducted as appropriate. One hundred-fifty women participated. Mean age was 38 years, and 81% were Caucasian. Fifty-two women had low, 74 had intermediate, and 24 had high genetic risk for breast cancer. There were no significant differences in worry or perceived risk by hereditary risk category. Most high-risk women (91%) had not spoken with a genetic counselor, and no one had previous genetic testing. These findings suggest perceived risk, worry about breast cancer, and use of expert consultation do not match the genetic contribution to risk. There is a need for effectively stratifying and communicating risk in the community and providing tailored reassurance or referral for high-risk assessment.     

Analyzing the Process and Content of Genetic Counseling in Familial Breast Cancer Consultations

A detailed examination of the process of genetic counseling has been identified as a priority area for research by previous authors. This multicenter longitudinal study examined the process and content of genetic counseling in initial consultations with women from high-risk breast cancer families. One hundred and fifty-eight consultations with women unaffected and affected with breast cancer were audio taped and transcribed verbatim. A detailed coding system was developed. Clinical geneticists and genetic counselors demonstrated consistently good practice in giving detailed information on essential aspects related to familial breast cancer such as screening and management, genetic testing, breast cancer genetics, and prophylactic surgery. Eliciting emotional concerns and facilitating communication were found to be inconsistently present. As clinical practice guidelines and the general communication literature emphasize the importance of these factors, this is an area where training in or self-monitoring of such behaviors may assist consultants to further develop these skills.     

Spirituality in African-American Breast Cancer Patients: Implications for Clinical and Psychosocial Care

Journal of Religion and Health - Spirituality has been shown to be important to many individuals dealing with a cancer diagnosis. While African-American breast cancer survivors have been reported...     

Cancer Worry,Perceived Risk and Cancer Screening in First-Degree Relatives of Patients with Familial Gastric Cancer

Currently, there is a lack of evidence evaluating the psychological impact of cancer-related risk perception and worry in individuals at high risk for gastric cancer. We examined the relationships between perceived risk, cancer worry and screening behaviors among first-degree relatives (FDRs) of patients with familial gastric cancer. FDRs of patients diagnosed with familial gastric cancer with a non-informative genetic analysis were identified and contacted. Participants completed a telephone interview that assessed socio-demographic information, cancer risk perception, cancer worry, impact of worry on daily functioning, and screening behaviors. Twenty-five FDRs completed the telephone interview. Participants reported high levels of comparative and absolute cancer risk perception, with an average perceived lifetime risk of 54 %. On the other hand, cancer-related worry scores were low, with a significant minority (12 %) experiencing high levels of worry. Study participants exhibited high levels of confidence (median = 70 %) in the effectiveness of screening at detecting a curable cancer. Participants that had undergone screening in the past showed significantly lower levels of cancer-related worry compared to those that had never undergone screening. In conclusion, individuals at high-risk for gastric cancer perceived a very high personal risk of cancer, but reported low levels of cancer worry. This paradoxical result may be attributed to participants’ high levels of confidence in the effectiveness of screening. These findings highlight the importance for clinicians to discuss realistic risk appraisals and expectations towards screening with unaffected members of families at risk for gastric cancer, in an effort to help mitigate anxiety and help with coping.     

Psychosocial Factors Associated With Stage of Change for Contraceptive Use Among Women at Increased Risk for HIV and STDs

This study assessed the psychosocial factors associated with contraceptive use among inner-city women at risk for HIV/STDs by using the transtheoretical model of behavior change. The five-city study group of women aged 15 to 34 years was recruited from neighborhoods, social service agencies and shelters ( n = 998). We measured stages of change for contraceptive use and assessed theoretically proposed factors associated with being at a higher stage. Variables such as perceived advantages of contraceptive use and normative support for use were very important at early stages, but less important in later stages. However, self-efficacy was important in both early (OR =1.5) and later (OR = 1.6) stages, suggesting that women's confidence in their ability to initiate and sustain contraceptive use is crucial.     

Breast Cancer Risk Assessment at the Time of Screening Mammography: Perceptions and Clinical Management Outcomes for Women at High Risk

The purpose of this study was to evaluate the utility of a breast cancer risk assessment (BCRA) at the time of screening mammogram. Women whose BCRA indicated a high risk for cancer received a letter with instructions for breast health care and genetic counseling if appropriate. After 6 months this group received surveys to evaluate their risk perception and their recall of, and compliance with, recommendations. We also explored the impact of other variables such as a recommendation for genetic counseling and physician communication with the women. After the BCRA, the majority of high risk women reported no change in their perceived risk of cancer. A woman’s perceived risk of cancer after a BCRA was significantly associated with her recall of recommendations for breast health care, but not with compliance. A recommendation for genetic counseling was not significantly related to women’s perceived risk of cancer after the BCRA. Ten percent of women who should have obtained genetic counseling actually completed an appointment. Women who discussed their BCRA results with their physicians were more compliant with a six month breast exam with a doctor (53% vs 17%, p = 0.018). Overall, women felt that the BCRA was helpful and did not cause undue stress or anxiety. Although the cohort’s compliance with recommendations was suboptimal, physicians’ interactions with their patients may have a positive influence on their compliance.     

The Impact of Breast Cancer Genetic Risk Assessment on Intentions to Perform Cancer Surveillance Behaviors

One hundred and fifty-four women undergoing breast/ovarian cancer genetic risk assessment completed questionnaires at entry into the Cancer Genetic Service for Wales (CGSW) assessment program and following risk provision, mapping the strength of intentions to engage in a number of preventive/surveillance behaviors, including seeing specialists, breast self-examination, and involvement in screening programs, including mammography. A number of potential predictors of intentions were also assessed, including participants' mood and emotional response to receiving risk information, the perceived benefits (in terms of reassurance and early disease detection) of engaging in each preventive behavior, and the perceived desires of their family and General Practitioner. Intentions to self-examine did not change following risk provision, although strength of intentions to engage in some other preventive behaviors did lessen. Family and General Practitioners appeared to be strong social influences on behavioral intentions, as were the perceived benefits of gaining reassurance and/or early detection of disease.     

Billing and Record-Keeping for Familial Cancer Risk Counseling: A National Survey

We surveyed 111 genetic counselors providing cancer risk counseling (CRC) in order to document their billing and record-keeping practices. Of the 75 respondents, billing was generally done under the supervising physician with a wide variation in charges. Follow-up telephone interviews with 28 counselors who charge patients revealed that billing was usually done using the CPT codes for consultations, and the ICD-9 diagnostic codes for cancer (if applicable), a medical complaint, or a family history of cancer code. Most counselors exclude some clinical information from the patient's medical record. In consultation notes, 81% of counselors document a discussion of genetic testing, but only 37% document the patient's actual testing decision, and only 19% document test results. In anticipation of increased referrals for CRC, data are needed on the components of a CRC visit, the amount of time required to provide CRC, patient outcomes measures, and charges and reimbursement. The feasibility and advisability of keeping results separate from the patient's medical record also needs to be addressed.     

Psychosocial Adaptation to Chronic Illness and Disability: A Primer for Counselors

In this article, the authors discuss 3 broad domains of psychosocial adaptation to chronic illness and disability. These include the dynamics (basic concepts, psychosocial responses, and coping strategies) typically associated with the process of adaptation to disabling conditions, assessment of adaptation as evidenced by 6 commonly used measures, and intervention strategies applied to facilitating coping with and adaptation to chronic illness and disability.     

Psychosocial Factors and Disease Progression in Cancer

ABSTRACT— Psychosocial factors such as stress, personality, and social support relate to differences in disease progression in cancer patients. Neuroendocrine substances associated with psychosocial factors may regulate immune responses to cancer, as well as regulate the activity of oncogenic (cancer-causing) viruses, DNA-repair processes, and the expression in tumor cells of genes that may affect the tumor's growth and metastasis. Biobehavioral oncology research seeks to understand how these psychosocial factors, and interventions designed to modify them, become neurohormonal changes that alter cell signaling and tumor growth, viral oncogenesis, and immune responses. We review the empirical basis for psychosocial factors and biobehavioral processes in cancer progression and suggest future research.     

Perceptions of High-Risk Care and Barriers to Care Among Women at Risk for Hereditary Breast and Ovarian Cancer following Genetic Counseling in the Community Setting

Data are limited regarding barriers to care among women, with or at risk for hereditary breast and ovarian cancer (HBOC), following genetic counseling in the community setting. Using a telephone survey, we retrospectively addressed perceptions of post-genetic counseling medical care and barriers to care among 69 at-risk women from the non-academic setting. Of these, all agreed that following cancer screening recommendations was better than not following them; none felt recommendations were too difficult to follow; all believed screening would help keep them healthy; 57% believed screening would prevent cancer. Twenty-five percent noted discomfort with breast imaging; 29% found ovarian cancer screening uncomfortable. Close to a quarter of participants reported difficulty deciding whether or not to undergo risk-reducing mastectomy while 10% noted difficulty deciding for or against bilateral salpingo-oophorectomy. There were no perceived major barriers to care, although 38% felt that screening reminders would be helpful, and 10% needed more help in following through with care. Overall, participants believed that they were benefiting from their post-genetic counseling medical care. This work identified HBOC-related support needs to include: informational resources that promote improved understanding of cancer risk and high-risk management; screening reminder systems; and decision support tools.