Jane C. Weeks

What do patients value in their hospital care? An empirical perspective on autonomy centred bioethics

Objective: Contemporary ethical accounts of the patient-provider relationship emphasise respect for patient autonomy and shared decision making. We sought to examine the relative influence of involvement in decisions, confidence and trust in providers, and treatment with respect and dignity on patients’ evaluations of their hospital care. Design: Cross-sectional survey. Setting: Fifty one hospitals in Massachusetts. Participants: Stratified random sample of adults (N=27 414) discharged from a medical, surgical, or maternity hospitalisation between January and March, 1998. Twelve thousand six hundred and eighty survey recipients responded. Main outcome measure: Respondent would definitely be willing to recommend the hospital to family and friends. Results: In a logistic regression analysis, treatment with respect and dignity (odds ratio (OR) 3.4, 99% confidence interval (CI) 2.8 to 4.2) and confidence and trust in providers (OR 2.5, CI 2.1 to 3.0) were more strongly associated with willingness to recommend than having enough involvement in decisions (OR 1.4, CI 1.1 to 1.6). Courtesy and availability of staff (OR 2.5, CI 2.1 to 3.1), continuity and transition (OR 1.9, CI 1.5 to 2.2), attention to physical comfort (OR 1.8, CI 1.5 to 2.2), and coordination of care (OR 1.5, CI 1.3 to 1.8) were also significantly associated with willingness to recommend. Conclusions: Confidence and trust in providers and treatment with respect and dignity are more closely associated with patients’ overall evaluations of their hospitals than adequate involvement in decisions. These findings challenge a narrow emphasis on patient autonomy and shared decision making, while arguing for increased attention to trust and respect in ethical models of health care.

Using health-related quality-of-life information: clinical encounters, clinical trials, and health policy.

MANY HEALTH-RELATED DECISIONS faced by patients, physicians, researchers, and po l icymakers require informat ion that goes b e y o n d traditional biologic and physiologic ou tcomes . Informat ion about pure ly physiologic o u t c o m e s is inadequate w h e n a physician and a pat ient make decisions about t rea tment opt ions that involve comparab le survivals but markedly different impacts on the patient s health-related quality of life (HRQOL), because physiologic o u t c o m e s often do not corre la te well with HRQOL.I-i.~ Similarly, clinicians evaluating the effectiveness of new therapeut ic interventions, such as ant ihypertensive agents, may wan t to rev iew information about the impact of the d rug on patients HRQOL as well as on the biologic ou t come , b lood pressure, i-~. ~ s Finally, legislators faced wi th paying for health care within a const ra ined budge t may find that data descr ibing the biologic impact of various medical and surgical therapies are insufficient to make resource allocation decisions. There is an emerg ing consensus that maximizing HRQOL is an impor tan t goal o f medical care, part icularly in the con tex t of ch ron ic diseases for w h i c h nei ther cure nor impend ing death is a likely ou tcome. There is less agreement , however , on h o w to measure HRQOL.t6 For many condit ions, there exist a variety of reliable and

The Effect of Age on Delay in Diagnosis and Stage of Breast Cancer

BACKGROUNDnYoung women with breast cancer are more likely to present with more advanced disease and are more likely to die as a result of breast cancer than their older counterparts. We sought to examine the relationship among young age (≤40 years), the likelihood of a delay in diagnosis, and stage.nnnMETHODSnWe examined data from women with newly diagnosed stage I-IV breast cancer presenting to one of eight National Comprehensive Cancer Network centers in January 2000 to December 2007. Delay in diagnosis was defined as time from initial sign or symptom to breast cancer diagnosis >60 days.nnnRESULTSnAmong 21,818 women with breast cancer eligible for analysis, 2,445 were aged ≤40 years at diagnosis. Young women were not more likely to have a delay in diagnosis >60 days (odds ratio [OR], 1.08; 95% confidence interval [CI], 0.98-1.19) after adjustment for type of initial sign or symptom. Young women were only modestly more likely to present with higher stage disease after a similar adjustment (OR, 1.18; 95% CI, 1.07-1.31). Women presenting with symptomatic disease, more common in younger women, were more likely to have a delay in diagnosis (OR, 3.31; 95% CI, 3.08-3.56) and higher stage (OR, 4.31; 95% CI 4.05-4.58).nnnCONCLUSIONnYoung age is not an independent predictor of delay in diagnosis of breast cancer and only modestly is associated with higher stage disease. Presenting with symptoms of breast cancer predicts delay and higher stage at diagnosis.

Time to diagnosis and breast cancer stage by race/ethnicity.

We examined differences in time to diagnosis by race/ethnicity, the relationship between time to diagnosis and stage, and the extent to which it explains differences in stage at diagnosis across racial/ethnic groups. Our analytic sample includes 21,427 non-Hispanic White (White), Hispanic, non-Hispanic Black (Black) and non-Hispanic Asian/Pacific Islander (Asian) women diagnosed with stage I to IV breast cancer between January 1, 2000 and December 31, 2007 at one of eight National Comprehensive Cancer Network centers. We measured time from initial abnormal mammogram or symptom to breast cancer diagnosis. Stage was classified using AJCC criteria. Initial sign of breast cancer modified the association between race/ethnicity and time to diagnosis. Among symptomatic women, median time to diagnosis ranged from 36xa0days among Whites to 53.6 for Blacks. Among women with abnormal mammograms, median time to diagnosis ranged from 21xa0days among Whites to 29 for Blacks. Blacks had the highest proportion (26xa0%) of Stage III or IV tumors. After accounting for time to diagnosis, the observed increased risk of stage III/IV breast cancer was reduced from 40 to 28xa0% among Hispanics and from 113 to 100xa0% among Blacks, but estimates remained statistically significant. We were unable to fully account for the higher proportion of late-stage tumors among Blacks. Blacks and Hispanics experienced longer time to diagnosis than Whites, and Blacks were more likely to be diagnosed with late-stage tumors. Longer time to diagnosis did not fully explain differences in stage between racial/ethnicity groups.

Comparative effectiveness of three platinum-doublet chemotherapy regimens in elderly patients with advanced non-small cell lung cancer.

Randomized trials report equivalent efficacy among various combinations of platinum‐based regimens in advanced non–small cell lung cancer (NSCLC). Their relative effectiveness and comparability based on squamous versus nonsquamous histology is uncertain.

Radiation therapy for ductal carcinoma in situ: a decision analysis.

The benefit of adding radiation therapy after excision of ductal carcinoma in situ (DCIS) is widely debated. Randomized clinical trials are underpowered to delineate long‐term outcomes after radiation.

Chapter 9: The MGH-HMS lung cancer policy model: tobacco control versus screening.

The natural history model underlying the MGH Lung Cancer Policy Model (LCPM) does not include the two-stage clonal expansion model employed in other CISNET lung models. We used the LCPM to predict numbers of U.S. lung cancer deaths for ages 30-84 between 1975 and 2000 under four scenarios as part of the comparative modeling analysis described in this issue. The LCPM is a comprehensive microsimulation model of lung cancer development, progression, detection, treatment, and survival. Individual-level patient histories are aggregated to estimate cohort or population-level outcomes. Lung cancer states are defined according to underlying disease variables, test results, and clinical events. By simulating detailed clinical procedures, the LCPM can predict benefits and harms attributable to a variety of patient management practices, including annual screening programs. Under the scenario of observed smoking patterns, predicted numbers of deaths from the calibrated LCPM were within 2% of observed over all years (1975-2000). The LCPM estimated that historical tobacco control policies achieved 28.6% (25.2% in men, 30.5% in women) of the potential reduction in U.S. lung cancer deaths had smoking had been eliminated entirely. The hypothetical adoption in 1975 of annual helical CT screening of all persons aged 55-74 with at least 30 pack-years of cigarette exposure to historical tobacco control would have yielded a proportion realized of 39.0% (42.0% in men, 33.3% in women). The adoption of annual screening would have prevented less than half as many lung cancer deaths as the elimination of cigarette smoking.

Discussions about end-of-life care planning between physicians and patients with stage IV lung or colorectal cancer.

6026 Background: National guidelines recommend that physicians discuss end-of-life (EOL) care planning with cancer patients whose life expectancy is less than one year. Previous studies typically rely on patient reports of discussions, even though patient and physician perceptions can differ, and usually as a one time assessment. We know little about the true incidence of EOL discussions or about where, when, or with whom they take place.nnnMETHODSnWe evaluated EOL discussions among 2155 patients with stage IV lung or colorectal cancer enrolled in the Cancer Care Outcomes Research and Surveillance Consortium, a population- and health system-based prospective cohort study. Discussions were reported in patient and surrogate surveys and in a comprehensive medical record abstraction over the first 15 months after diagnosis. Medical record data included the location, provider, and timing of discussions.nnnRESULTSn73% of patients had EOL discussions reported by patients or surrogates or documented in medical records. Among patients who died during the 15 month follow-up period (N=1524), 86% had EOL discussions, compared with 42% of patients who were alive at the end of follow-up (N=631). Among first EOL discussions documented in the medical record (N=1081), 55% occurred in the hospital and 45% in the outpatient setting. Medical record data included medical oncology visits for 85% of patients (median 6 visits), but oncologists documented EOL discussions with only 27% of their patients. Medical oncologists participated in 46% of EOL discussions for which provider specialty was known (N=860); other specialties were general medicine (34%), other medical specialties (14%), radiation oncology (4%), and surgery (3%). Of 983 patients who lived at least a month after diagnosis and died during follow up, 50% had a first documented EOL discussion before the last month of life, 32% during the last month of life, and 18% had no EOL discussions before death.nnnCONCLUSIONSnAlthough most patients with stage IV lung or colorectal cancer have discussions with physicians about EOL care planning before death, many discussions occur in the setting of acute hospital care, with non-oncology providers, and late in the course of illness.

Out-of-pocket costs (OPC) and time costs (TC) for patients with stage IV non-small cell lung cancer (NSCLC) and their caregivers

6021 Background: Despite the high incidence of NSCLC, little is known about the associated economic burdens experienced by patients and caregivers.nnnMETHODSnPatients participating in a multicenter cohort study of outcomes of newly diagnosed stage IV NSCLC and their surrogates were asked to report OPC and TC in monthly diaries and surveys. Time was valued at the median age- and gender-specific income reported by the U.S. Census Bureau in 2001. We report on the first submitted monthly survey; no temporal trends were observed over 6 months of follow-up.nnnRESULTSnAmong 181 respondents, mean age was 59 years and median income was

Outcomes Assessment in Cancer: The science of quality-of-life measurement in lung cancer

60,000. 33% and 11% worked full- and part-time, respectively;11% were on paid medical leave, and 39% were retired, unemployed or working as a homemaker. Monthly OPCs for patients are shown in the table. Monthly mean (range) wage losses reported by patients and caregivers were