Michael A. Diefenbach

The Active Side of Illness Cognition

This chapter has three objectives. The first is to provide a few historical details respecting the development of illness cognition research in our laboratory. As these activities extended over three decades, our brief comments may help the interested reader to integrate several lines of research that are frequently viewed as separate. The second, primary objective is to advance a constructivist view of behavioral processes. We believe people are active problem solvers and work in illness cognition must identify the procedures that people use to elaborate and test their illness models. If taken seriously, this theme can generate new directions for conceptual and empirical development. Our third, final objective is to highlight a few of the points made in prior chapters suggesting how they relate to the directions we now envision.

SPECIFIC WORRY ABOUT BREAST CANCER PREDICTS MAMMOGRAPHY USE IN WOMEN AT RISK FOR BREAST AND OVARIAN CANCER

This longitudinal study examined predictors of mammography use among women with a family history of breast cancer participating in a risk assessment and surveillance program (N = 213). Assessed were background variables (age, prior mammography utilization), cognitive variables (perceived vulnerability), and affective variables (cancer worry and general distress). Results of logistic regression analyses predicting adherence 1 year after baseline contact, in which variables of prior utilization, feelings of vulnerability, and general distress were controlled for, indicated that cancer worry and age were significant predictors of mammography adherence. Results suggest that moderate levels of cancer worry facilitate, rather than undermine, adherence. The results have implications for the construction of educational messages that should be designed to acknowledge feelings of cancer-specific worry and to provide guidance in health protective behaviors.

Cancer patient preferences for quality and length of life

Optimal patient decision making requires integration of patient values, goals, and preferences with information received from the physician. In the case of a life‐threatening illness such as cancer, the weights placed on quality of life (QOL) and length of life (LOL) represent critical values. The objective of the current study was to describe cancer patient values regarding QOL and LOL and explore associations with communication preferences.

Responses to Information about Psychosocial Consequences of Genetic Testing for Breast Cancer Susceptibility: Influences of Cancer Worry and Risk Perceptions

We assessed the impact of information about psychosocial consequences of genetic testing for breast cancer susceptibility on interest in and beliefs about genetic testing, and whether these effects vary by levels of either cancer worry or perceived cancer risk. Women (N = 180) in an experimental study were randomly assigned to read one of four messages consisting of standard information along with information about either psychosocial advantages, potential disadvantages, both advantages and disadvantages, or no additional information. Women receiving only standard information reported higher interest in obtaining genetic testing than did women who received additional information about advantages, disadvantages, or both advantages and disadvantages. Cancer worry (but not perceived risk) predicted greater interest and more favorable beliefs about the benefits of testing. Beliefs that testing causes emotional distress were positively associated with worry and negatively associated with risk perceptions.

Regret of Treatment Decision and its Association with Disease-Specific Quality of Life Following Prostate Cancer Treatment

We examined decisional regret among prostate cancer patients and its association with disease-specific quality of life. Patients (N = 793) completed questionnaires at diagnosis, at 6 months, and 12 months thereafter. Although levels of decisional regret were low, regret increased significantly between 6 and 12 months after diagnosis. The increase was substantial for patients treated with prostatectomy compared to patients treated with external beam radiation or brachytherapy. Cross-sectional, significant, and positive associations among regret, activity limitation attributed to urinary dysfunction, and bother with sexual and urinary dysfunction emerged. Longitudinally, the change in the level of regret was significantly associated with treatment modality and with the change in bother with sexual dysfunction over the first 6 months after diagnosis. Extensive discussions about disease-specific quality of life should be included when physicians counsel patients about treatment options.

Symptom patterns among Gulf War Registry veterans

OBJECTIVES We identify symptom patterns among veterans who believe they suffer from Gulf War-related illnesses and characterize groups of individuals with similar patterns. METHODS A mail survey was completed by 1161 veterans drawn from the Gulf War Health Registry. RESULTS An exploratory factor analysis revealed 4 symptom factors. A K-means cluster analysis revealed 2 groups: (1) veterans reporting good health and few moderate/severe symptoms, and (2) veterans reporting fair/poor health and endorsing an average of 37 symptoms, 75% as moderate/severe. Those in Cluster 2 were more likely to report having 1 or more of 24 medical conditions. CONCLUSIONS These findings are consistent with previous investigations of symptom patterns in Gulf War veterans. This multisymptom illness may be more fully characterized by the extent, breadth, and severity of symptoms reported.

Psychological and screening profiles of first-degree relatives of prostate cancer patients.

The purpose of the present study was to systematically compare the psychological and screening profiles of first-degree relatives (FDRs) of prostate cancer patients versus non-FDRs. FDRs (n = 56) and non-FDRs (n = 100), recruited through prostate cancer index cases and newspaper advertisements, completed questionnaires via mail. FDRs reported feeling at greater risk for prostate cancer, estimated that they were at higher average lifetime risk for the disease, agreed more strongly that prostate cancer is inherited, and that less can be done to prevent the development of the disease. Increased age, but not FDR status, was associated with more frequent screening behavior. Taken together, the results indicate that FDRs are characterized by greater perceived vulnerability to prostate cancer and lower expectations about disease prevention. Yet, they are no more likely to be screened than non-FDRs. These findings underscore the importance of developing, and evaluating, evidence-based health communication protocols to promote screening adherence among at-risk patients.

Muscle Invasive Bladder Cancer: Examining Survivor Burden and Unmet Needs

PURPOSE Although improvements in perioperative care have decreased surgical morbidity after radical cystectomy for muscle invasive bladder cancer, treatment side effects still have a negative impact on patient quality of life. We examined unmet patient needs along the illness trajectory. MATERIALS AND METHODS A total of 30 patients (26.7% women) treated with cystectomy and urinary diversion for muscle invasive bladder cancer participated in the study. Patients were recruited from the Department of Urology at Mount Sinai and through advertisements on the Bladder Cancer Advocacy Network (BCAN) website between December 2011 and September 2012. Data were collected at individual interviews, which were audiotaped and transcribed. Transcribed data were quantitatively analyzed to explore key unmet needs. RESULTS At diagnosis unmet informational needs were predominant, consisting of insufficient discussion of certain topics, including urinary diversion options and their side effects, self-care, the recovery process and medical insurance. Unmet psychological needs related to depression, and worries about changes in body image and sexual function were reported. Postoperative unmet needs revolved around medical needs (eg pain and bowel dysfunction) and instrumental needs (eg need of support for stomal appliances, catheters and incontinence). During survivorship (ie 6 to 72 months postoperatively) unmet needs centered around psychological support (ie depression, poor body image and sexual dysfunction) and instrumental support (eg difficulty adjusting to changes in daily living). CONCLUSIONS Meeting patient needs is imperative to ensure adequate patient involvement in health care and enhance postoperative quality of life. An effective support provision plan should follow changes in patient needs.

Psychological Interventions and Genetic Testing: Facilitating Informed Decisions About BRCA1/2 Cancer Susceptibility

Genetic testing for inherited cancer susceptibility, based on the recently identified. BRCA1 and BRCA2 genes, will soon be available on a large scale. However, at present, genetic test results do not lead to clearly indicated diagnostic or preventive measures, and the nature of the psychological impact of BRCA1/2 testing is still largely unknown. This uncertainty, combined with preliminary evidence suggesting significant individual differences in reactions to genetic susceptibility feedback, constitutes a unique challenge for any individual contemplating such testing. We outline the nature of this challenge and then propose an intervention strategy designed to help individuals make deeply processed and psychologically well-informed decisions with regard to their genetic susceptibility. The intervention is guided by recent research findings and theory on the cognitive–emotional processing of cancer-risk information. Specifically, the goal is to prepare the individual for genetic testing by (1) cognitively and emotionally activating, or “preliving,” the individuals potential reactions to testing feedback; (2) facilitating accurate appraisal of the individuals cognitive–emotional reactions; and (3) enabling the individual to process these reactions through the use of well-established clinical techniques.

Genetic testing for prostate cancer. Willingness and predictors of interest.

Purpose: As researchers come closer to identifying the genes responsible for prostate cancer, the possibility of genetic testing for men at risk for prostate cancer becomes more likely. This study examined the following: 1) the degree to which men with (n = 43) or without (n = 83) a family history of prostate cancer would be interested in genetic testing; and 2) the degree to which interest in testing was associated with demographic, family history, and psychosocial factors. Description of study: Participants (N = 126) were accrued through patients who had been treated for prostate cancer at Fox Chase Cancer Center (n = 39) and through newspaper advertisements (n = 87). All participants completed a questionnaire sent by mail. Results: Seventy-four percent of men were probably (50%) or definitely (24%) interested in testing. Participants with a family history of prostate cancer reported that they would be willing to pay substantially more for a genetic test compared with those without a family history. Elevated worry about prostate cancer and concerns about treatment-related side effects were associated with greater interest in genetic testing. Clinical implications: Findings demonstrate a need for the development of genetic counseling protocols for at-risk men who are interested in genetic testing, once this test becomes available.