William Lawrence

Background: Population trends in aging and improved cancer survival are likely to result in increased cancer prevalence in the United States, but few estimates of the burden of illness among cancer survivors are currently available. The purpose of this study was to estimate the burden of illness in cancer survivors in a national, population-based sample. Methods: A total of 1823 cancer survivors and 5469 age-, sex-, and educational attainment-matched control subjects were identified from the 2000 National Health Interview Survey. Multiple measures of burden, including utility, a summary measure of health, and days lost from work, were compared using two-sided tests of statistical significance for the two groups overall and for subgroups stratified by tumor site and time since diagnosis. Results: Compared with matched control subjects, cancer survivors had poorer outcomes across all burden measures (P<.01). Cancer survivors had lower utility values (0.74 versus 0.80; P<.001) and higher levels of lost productivity and were more likely to report their health as fair or poor (31.0% versus 17.9%; P<.001) than matched control subjects. Cancer survivors reported statistically significantly higher burden than did control subjects across tumor sites and across time since diagnosis (i.e., within the past year, 2-5 years, 6 -10 years, and >11 years for the majority of measures. Conclusions: Cancer survivors have poorer health outcomes than do similar individuals without cancer across multiple burden measures. These decrements are consistent across tumor sites and are found in patients many years following reported diagnosis. Improved measurement of long-term burden of illness will be important for future prospective research. [

Background. Despite widespread use of generic health-related quality-of-life (HRQoL) scores, few have publicly published nationally representative US values. Purpose. To create current nationally representative values for 7 of the most common HRQoL scores, stratified by age and sex. Methods. The authors used data from the 2001 Medical Expenditures Panel Survey (MEPS) and the 2001 National Health Interview Survey (NHIS), nationally representative surveys of the US noninstitutionalized civilian population. The MEPS was used to calculate 6 HRQoL scores: categorical self-rated health, EuroQoL-5D with US scoring, EuroQoL-5D with UK scoring, EuroQol Visual Analog Scale, mental and physical component summaries from the SF-12, and the SF-6D. The authors estimated Quality of Well-being scale scores from the NHIS. Results. They included 22,523 subjects from MEPS 2001 and 32,472 subjects from NHIS 2001. Most age and sex categories had instrument completion rates above 85%. Females reported lower scores than males across all ages and instruments. In general, those in older age groups reported lower scores than younger age groups, with the exception of the mental component summary from the SF-12. Conclusion. This is one of the first sets of publicly available, nationally representative US values for any standardized HRQoL measure. These values are important for use in both generalized comparisons of health status and in cost-effectiveness analyses.

BACKGROUND: The variability in preferences used in quality-adjusted life-years estimation jeopardizes the comparability of cost-effectiveness analyses and has led the Panel on Cost-Effectiveness in Health and Medicine (the PCEHM) to call for a catalog of "off-the-shelf" preference weights associated with conditions that can be used by health researchers without the burden of collecting primary data. OBJECTIVE: The current research responds to the call by developing a nationally representative catalog of preference-based scores for chronic conditions and associated sociodemographic characteristics. METHODS: The authors report the EQ-5Dindex scores of chronic conditions and associated sociodemographic characteristics in the nationally representative Medical Expenditure Panel Survey (MEPS). Chronic conditions were coded using "quality priority conditions" (QPC) and clinical classification categories (CCC). OLS, Tobit, and censored least absolute deviations (CLAD) regression models were used to provide condition estimates adjusted for age, comorbidity, gender, race, ethnicity, income, and education. RESULTS: Unadjusted and adjusted EQ-5Dindex scores for each QPC and CCC code are presented. EQ-5Dindex scores for older age categories were lower than younger categories, female scores were lower than males, certain racial groups had lower scores than others, and EQ-5Dindex scores were higher for individuals with higher education and income levels. CONCLUSION: The preference-based chronic condition scores reported in this research are nationally representative and may be useful to researchers to calculate quality-adjusted life-years for cost-effectiveness analyses and population-based burden of illness studies without the difficulty of primary data collection. Further research is necessary to validate these scores in condition-specific studies.

Patient-centered communication (PCC) is a critical element of patient-centered care, which the Institute of Medicine (Committee on Quality of Health Care in America, 2001) promulgates as essential to improving healthcare delivery. Consequently, the US National Cancer Institute's Strategic Plan for Leading the Nation (2006) calls for assessing the delivery of PCC in cancer care. However, no comprehensive measure of PCC exists, and stakeholders continue to embrace different conceptualizations and assumptions about how to measure it. Our approach was grounded in the PCC conceptual framework presented in a recent US National Cancer Institute monograph (Epstein & Street, 2007). In this study, we developed a comprehensive inventory of domains and subdomains for PCC by reviewing relevant literature and theories, interviewing a limited number of cancer patients, and consulting experts. The resulting measurement domains are organized under the six core functions specified in the PCC conceptual framework: exchanging information, fostering healing relationships, recognizing and responding to emotions, managing uncertainty, making decisions, and enabling patient self-management. These domains represent a promising platform for operationalizing the complicated PCC construct. Although this study focused specifically on cancer care, the PCC measurements are relevant to other clinical contexts and illnesses, given that patient-centered care is a goal across all healthcare. Finally, we discuss considerations for developing PCC measures for research, quality assessment, and surveillance purposes. United States Department of Health and Human Services, National Institutes of Health, National Cancer Institute (2006). The NCI Strategic Plan for Leading the Nation: To Eliminate the Suffering and Death Due to Cancer. NIH Publication No. 06-5773.

PURPOSE: Approximately 5% to 10% of newly diagnosed breast cancer patients carry a BRCA1 or BRCA2 mutation. Given these patients' high risk for contralateral breast cancer, bilateral mastectomy is increasingly considered a treatment option for newly diagnosed BRCA1/2 carriers. In the present study, we prospectively evaluated the impact on surgical decision-making of pretreatment genetic counseling and BRCA1/BRCA2 testing among breast cancer patients at high-risk for carrying a mutation. PATIENTS AND METHODS: Participants were 194 newly diagnosed breast cancer patients who had not yet received definitive surgical treatment and who had at least a 10% prior probability of carrying a BRCA1/2 mutation. Participants were offered free genetic counseling and rapid BRCA1/2 testing. Primary analyses focused on the impact of BRCA1/2 test result on subsequent breast cancer surgical treatment. RESULTS: Forty-eight percent of patients who were found to carry a BRCA1/2 mutation chose bilateral mastectomy as their definitive breast cancer surgery. In contrast, 24% of patients in whom no mutation was detected and 4% of test decliners opted for bilateral mastectomy. Additional predictors of bilateral mastectomy included patients' self-reports of physician recommendations for BRCA1/2 testing and bilateral mastectomy. CONCLUSION: This study highlights patient interest in and the technical feasibility of offering presurgery BRCA1/2 testing to high-risk patients. Most importantly, these results demonstrate that BRCA1/2 test results significantly affect patients' surgical decision-making. The availability of genetic counseling and testing could serve as a valuable aid to patient decision-making for newly diagnosed breast cancer patients at high-risk for carrying a mutation.