Background/Objectives Caregivers of patients with serious illness endure significant burden, yet it is not clear at what stage of advanced illness patient and caregiver needs are greatest. This study compared prevalence and predictors of caregiver esteem and burden during two different stages of patients’ illnesses – advanced chronic illness and the last year of life. Design Longitudinal, observational cohort study. Setting Community sample recruited from outpatient clinics at Duke University and Durham VA Medical Centers. Participants Patients living with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic-illness (n=62) or end-of-life (n=62) patient-caregiver dyads. Measurements We measured caregiver experience monthly with the Caregiver Reaction Assessment (CRA), which includes caregiver esteem and 4 domains of burden: schedule, health, family, and finances. Results During both chronic-illness and end-of-life, high caregiver esteem was almost universal (95%); health, family, and financial burden were endorsed by <25% of the sample. Schedule burden was the most prevalent form of burden and was experienced more frequently by end-of-life caregivers (58%) than the chronic-illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over one year. Few factors were associated with burden. Conclusion Caregiver experience is relatively stable over one year and similar among caregivers of patients in the last year of life and those further upstream in advanced illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness.

Background We assessed attitudes of breast cancer patients regarding molecular testing for personalized therapy and research. Methods A questionnaire was given to female breast cancer patients presenting to a cancer center. Associations between demographic, clinical variables and attitudes towards molecular testing were evaluated. Results 308 patients were approached and 100 completed the questionnaire (32% response rate). Most participants were willing to undergo molecular testing to assist in selection of approved drugs (81%) and experimental therapy (59%) if testing was covered by insurance. Most participants were white (71%). Even if testing was financially covered, non-white participants were less willing to undergo molecular testing for selection of approved drugs (nonwhites vs. whites, 54% vs. 90%, OR=0.13; p=0.0004) or experimental drugs (35% vs. 68%, OR=0.26; p=0.0072). Most participants (75%) were willing to undergo a biopsy to guide therapy, and 46% were willing to undergo research biopsies. Non-white participants were less willing to undergo research biopsies (17% vs. 55%, OR=0.17; p=0.0033). Most participants wanted to be informed when research results had implications for treatment (91%), new cancer risk (90%), and other preventable/treatable diseases (87%). Conclusions Most patients are willing to undergo molecular testing and minimally invasive procedures to guide approved or experimental therapy. There are significant differences in attitudes towards molecular testing between racial groups; non-whites are less willing to undergo testing even if the results would guide their own therapy. Novel approaches are needed to prevent disparities in delivery of genomically informed care and to increase minority participation in biomarker-driven trials.

Background Understanding patients’ knowledge and prior information-seeking regarding personalized cancer therapy (PCT) may inform future patient information systems, consent for molecular testing and PCT protocols. We evaluated breast cancer patients’ knowledge and information-seeking behaviors regarding PCT. Methods Newly registered female breast cancer patients (n=100) at a comprehensive cancer center completed a self-administered questionnaire prior to their first clinic visit. Results Knowledge regarding cancer genetics and PCT was moderate (mean 8.7 +/− 3.8 questions correct out of 16). A minority of patients (27%) indicated that they had sought information regarding PCT. Higher education (p=0.009) and income levels (p=0.04) were associated with higher knowledge scores and with seeking PCT information (p=0.04). Knowledge was not associated with willingness to participate in PCT research. Conclusion Educational background and financial status impact patient knowledge as well as information-seeking behavior. For most patients, clinicians are likely to be patients’ initial source of information about PCT. Understanding patients’ knowledge deficits at presentation may help inform patient education efforts.

Background Cancer screening recommendations for patients with Lynch-like syndrome (LLS) are not well defined. We evaluated adherence to Lynch syndrome (LS) screening recommendations, cancer risk perceptions, and communication within the families among colorectal cancer (CRC) survivors with LLS. Methods Thirty-four participants with LLS completed a questionnaire about risk perception, adherence to LS screening recommendations, and communication with relatives. Clinical data were obtained from medical records. Results Most participants (76%) believed they should undergo colonoscopy every 1-2 years. Only 41% correctly interpreted their genetic tests as uninformative negative or as variant of unknown significance for LS. Less than half had had an upper GI endoscopy for screening purpose. Among female participants, 86% had been screened for endometrial cancer and 71% for ovarian cancer. Most participants had informed relatives about the CRC diagnosis and advised them to undergo CRC screening, but only 50% advised female relatives to be screened for endometrial cancer and only one-third advised relatives to have genetic counseling. Conclusions Most CRC survivors with LLS follow the same cancer screening recommended for LS patients but do not understand the meaning of LLS. Greater care must be devoted to communicating the implications of non-diagnostic germline mutation testing among patients with LLS.