Development and psychometric properties of a brief measure of subjective decision quality for breast cancer treatment.

BACKGROUND: Breast cancer patients face several preference-sensitive treatment decisions. Feelings such as regret or having had inadequate information about these decisions can significantly alter patient perceptions of recovery and recurrence. Numerous objective measures of decision quality (e.g., knowledge assessments, values concordance measures) have been developed; there are far fewer measures of subjective decision quality and little consensus regarding how the construct should be assessed. The current study explores the psychometric properties of a new subjective quality decision measure for breast cancer treatment that could be used for other preference sensitive decisions. METHODS: 320 women aged 20-79 diagnosed with AJCC stage 0 - III breast cancer were surveyed at two cancer specialty centers. Decision quality was assessed with single items representing six dimensions: regret, satisfaction, and fit as well as perceived adequacy of information, time, and involvement. Women rated decision quality for their overall treatment experience and surgery, chemotherapy, and radiation decisions separately. Principle components was used to explore factor structure. After scales were formed, internal consistency was computed using Cronbach's alpha. The association of each of the four final scales with patient characteristics scores was examined by Pearson correlation. RESULTS: For overall breast cancer treatment as well as surgery, chemotherapy, and radiation decisions, the six items yielded a single factor solution. Factor loadings of the six decision items were all above .45 across the overall and treatment-specific scales, with the exception of "Right for You" for chemotherapy and radiation. Internal consistency was 0.77, 0.85, 0.82, and 0.78 for the overall, surgery, chemotherapy, and radiation decision quality scales, respectively. CONCLUSIONS: Our measure of subjective appraisal of breast cancer treatment decisions includes 5 related elements; regret and satisfaction as well as perceived adequacy of information, time, and involvement. Future research is needed to establish norms for the measure as is further psychometric testing, particularly to examine how it is associated with outcomes such as quality of life, psychological coping and objective decision quality.

Genetic Counseling, Testing, and Family Communication Into Survivorship After Diagnosis of Breast Cancer.

PURPOSE: To examine receipt of genetic testing and communication with relatives about results into survivorship after diagnosis of breast cancer. METHODS: Women age 20-79 years diagnosed with early-stage breast cancer in 2014-2015 and reported to the Georgia and Los Angeles County SEER registries were surveyed approximately 7 months and 6 years after diagnosis (n = 1,412). We asked about genetic counseling, testing, and communication with relatives about results. We categorized women into indications for testing on the basis of clinical guidelines at the time of diagnosis and at the time of the follow-up survey (FUPs). RESULTS: A total of 47.4% had indications for genetic testing at any time: 28.0% at baseline and an additional 19.4% at the time of the FUPs (only); 71.9% (95% CI, 67.4 to 76.4) of those with a baseline indication reported genetic testing versus 53.3% (95% CI, 47.3 to 59.2) with an indication at FUPs only and 35.0% (95% CI, 31.6 to 38.4) with no indication (P < .001). There were no significant racial or ethnic differences in receipt of testing, controlling for age and clinical indications (P = .239); results for genetic counseling were similar. Only 3.4% of survivors had direct-to-consumer genetic testing (DTCt) for cancer. Testers who reported a pathogenic variant (n = 62) were much more likely to have talked to most or all their first-degree adult relatives about genetic testing than those with a variant of unknown significance (n = 49) or a negative finding (n = 419): 62.7% versus 38.8% and 38.0%, respectively (P < .001). CONCLUSION: Many women with indications for genetic counseling and testing into survivorship do not receive it. But those tested reach out to family members on the basis of the clinical relevance of their results. Very few patients obtained DTCt, which suggests that these tests do not substitute for clinical testing in breast cancer survivors.

Cascade Genetic Risk Education and Testing in Families With Hereditary Cancer Syndromes: A Pilot Study.

PURPOSE: Cascade genetic risk evaluation in families with hereditary cancer can reduce the burden of disease but the rate of germline genetic testing in relatives of patients at risk is low. METHODS: We identified all 277 women diagnosed with breast cancer in Georgia in 2017 who linked to a clinically actionable germline pathogenic variant through a Surveillance, Epidemiology, and End Results registry-variant linkage initiative. We surveyed them, and then invited eligible respondents to an online platform hosted by a navigator that offered cancer genetic risk education and germline genetic testing to untested relatives. We randomly assigned patient-family clusters at the time of the patient enrollment offer to free versus $50 (USD) test cost. Patients invited relatives to join the study through personalized e-mail. Enrolled relatives received online cancer genetic education and the opportunity to order clinical germline genetic testing through the platform. The primary outcome was the number of relatives who ordered genetic testing. RESULTS: One hundred twenty-five of 277 patients completed surveys (45.2%). Most respondents were eligible for the trial offer (113 of 125; 90.4%). In the free testing arm, 20 of 56 eligible patients participated (35.7% of eligible respondents) and they invited 28 relatives: 12 relatives enrolled and 10 ordered testing. In the $50 (USD) arm, 16 of 57 eligible patients participated (28.1%) and they invited 38 relatives: 18 relatives enrolled and 17 ordered testing. CONCLUSION: Cascade genetic testing in families with hereditary cancer syndromes accrued through a population-based cancer registry can be achieved through an online platform that offers genetic risk education and low-cost testing to relatives. A modest charge did not appear to influence the percentage of participating patients, numbers of participating relatives, and numbers of relatives who received genetic testing.

Hospital readmissions among patients with decompensated cirrhosis.

OBJECTIVES: Early rehospitalizations have been well characterized in many disease states, but not among patients with cirrhosis. The aims of this study were to identify the frequency, costs, predictors, and preventable causes of hospital readmissions among patients with decompensated cirrhosis. METHODS: Rates of readmission were calculated for 402 patients discharged after one of the following complications of cirrhosis: ascites, spontaneous bacterial peritonitis, renal failure, hepatic encephalopathy, or variceal hemorrhage. Costs of readmissions were calculated using the hospital accounting system. Predictors of time to first readmission were determined using Cox regression, and predictors of hospitalization rate/person-years were determined using negative binomial regression. The independent association between readmission rate and mortality was determined using Cox regression. Admissions within 30 days of discharge were assessed by two reviewers to determine if preventable. RESULTS: Overall, 276 (69%) subjects had at least one nonelective readmission, with a median time to first readmission of 67 days. By 1 week after discharge, 14% of subjects had been readmitted, and 37% were readmitted within 1 month. The mean costs for readmissions within 1 week and between weeks 1 and 4 were $28,898 and $20,581, respectively. During a median follow-up of 203 days, the median number of readmissions was 2 (range 0-40), with an overall rate of 3 hospitalizations/person-years. Patients with more frequent readmissions had higher risk of subsequent mortality, despite adjustment for confounders including the Model for End-stage Liver Disease (MELD) score. Predictors of time to first readmission included MELD score, serum sodium, and number of medications on discharge; predictors of hospitalization rate included these variables as well as the number of cirrhosis complications and being on the transplant list at discharge. Among 165 readmissions within 30 days, 22% were possibly preventable. CONCLUSIONS: Hospital readmissions among patients with decompensated cirrhosis are common, costly, moderately predictable, in some cases, possibly preventable, and independently associated with mortality. These findings support the development of disease management interventions to prevent rehospitalization.

Patient decision making about organ quality in liver transplantation.

It is challenging to discuss the use of high-risk organs with patients, in part because of the lack of information about how patients view this topic. This study was designed to determine how patients think about organ quality and to test formats for risk communication. Semistructured interviews of 10 patients on the waiting list revealed limited understanding about the spectrum of organ quality and a reluctance to consider anything but the best organs. A computerized quantitative survey was then conducted with an interactive graph to elicit the risk of graft failure that patients would accept. Fifty-eight percent of the 95 wait-listed patients who completed the survey would accept only organs with a risk of graft failure of 25% or less at 3 years, whereas 18% would accept only organs with the lowest risk possible (19% at 3 years). Risk tolerance was increased when the organ quality was presented relative to average organs rather than the best organs and when feedback was provided about the implications for organ availability. More than three-quarters of the patients reported that they wanted an equal or dominant role in organ acceptance decisions. Men tended to prefer lower risk organs (mean acceptable risk = 29%) in comparison with women (mean acceptable risk = 35%, P = 0.04), but risk tolerance was not associated with other demographic or clinical characteristics (eg, the severity of liver disease). In summary, patients want to be involved in decisions about organ quality. Patients' risk tolerance varies widely, and their acceptance of high-risk organs can be facilitated if we present the risks of graft failure with respect to average organs and provide feedback about the implications for organ availability.