Variation in Use of High-Cost Technologies for Palliative Radiation Therapy by Radiation Oncologists.

BACKGROUND: Understanding the sources of variation in the use of high-cost technologies is important for developing effective strategies to control costs of care. Palliative radiation therapy (RT) is a discretionary treatment and its use may vary based on patient and clinician factors. METHODS: Using data from the SEER-Medicare linked database, we identified patients diagnosed with metastatic lung, prostate, breast, and colorectal cancers in 2010 through 2015 who received RT, and the radiation oncologists who treated them. The costs of radiation services for each patient over a 90-day episode were calculated, and radiation oncologists were assigned to cost quintiles. The use of advanced technologies (eg, intensity-modulated radiation, stereotactic RT) and the number of RT treatments (eg, any site, bone only) were identified. Multivariable random-effects models were constructed to estimate the proportion of variation in the use of advanced technologies and extended fractionation (>10 fractions) that could be explained by patient fixed effects versus physician random effects. RESULTS: We identified 37,361 patients with metastatic lung cancer, 3,684 with metastatic breast cancer, 5,323 with metastatic prostate cancer, and 8,726 with metastatic colorectal cancer, with 34%, 27%, 22%, and 9% receiving RT within the first year, respectively. The use of advanced technologies and extended fractionation was associated with higher costs of care. Compared with the patient case-mix, physician variation accounted for a larger proportion of the variation in the use of advanced technologies for palliative RT and the use of extended fractionation. CONCLUSIONS: Differences in radiation oncologists' practice and choices, rather than differences in patient case-mix, accounted for a greater proportion of the variation in the use of advanced technologies and high-cost radiation services.

Association between the 21-gene recurrence score and isolated locoregional recurrence in stage I-II, hormone receptor-positive breast cancer.

BACKGROUND: Although the 21-gene recurrence score (RS) assay is widely used to predict distant recurrence risk and benefit from adjuvant chemotherapy among women with hormone receptor-positive (HR+) breast cancer, the relationship between the RS and isolated locoregional recurrence (iLRR) remains poorly understood. Therefore, we examined the association between the RS and risk of iLRR for women with stage I-II, HR+ breast cancer. METHODS: We identified 1758 women captured in the national prospective Breast Cancer-Collaborative Outcomes Research Database who were diagnosed with stage I-II, HR+ breast cancer from 2006 to 2012, treated with mastectomy or breast-conserving surgery, and received RS testing. Women who received neoadjuvant therapy were excluded. The association between the RS and risk of iLRR was examined using competing risks regression. RESULTS: Overall, 19% of the cohort (n = 329) had a RS ≥25. At median follow-up of 29 months, only 22 iLRR events were observed. Having a RS ≥25 was not associated with a significantly higher risk of iLRR compared to a RS < 25 (hazard ratio 1.14, 95% confidence interval 0.39-3.36, P = 0.81). When limited to women who received adjuvant endocrine therapy without chemotherapy (n = 1199; 68% of the cohort), having a RS ≥25 (n = 74) was significantly associated with a higher risk of iLRR compared to a RS < 25 (hazard ratio 3.66, 95% confidence interval 1.07-12.5, P = 0.04). In this group, increasing RS was associated with greater risk of iLRR (compared to RS < 18, hazard ratio of 1.66, 3.59, and 7.06, respectively, for RS 18-24, 25-30, and ≥ 31; Ptrend = 0.02). CONCLUSIONS: The RS was significantly associated with risk of iLRR in patients who did not receive adjuvant chemotherapy. The utility of the RS in identifying patients who have a low risk of iLRR should be further studied.

Overuse of Diagnostic Brain Imaging Among Patients With Stage IA Non-Small Cell Lung Cancer.

BACKGROUND: Among patients diagnosed with stage IA non-small cell lung cancer (NSCLC), the incidence of occult brain metastasis is low, and several professional societies recommend against brain imaging for staging purposes. The goal of this study was to characterize the use of brain imaging among Medicare patients diagnosed with stage IA NSCLC. METHODS: Using data from linked SEER-Medicare claims, we identified patients diagnosed with AJCC 8th edition stage IA NSCLC in 2004 through 2013. Patients were classified as having received brain imaging if they underwent head CT or brain MRI from 1 month before to 3 months after diagnosis. We identified factors associated with receipt of brain imaging using multivariable logistic regression. RESULTS: Among 13,809 patients with stage IA NSCLC, 3,417 (25%) underwent brain imaging at time of diagnosis. The rate of brain imaging increased over time, from 23.5% in 2004 to 28.7% in 2013 (P=.0006). There was significant variation in the use of brain imaging across hospital service areas, with rates ranging from 0% to 64.0%. Factors associated with a greater likelihood of brain imaging included older age (odds ratios [ORs] of 1.16 for 70-74 years, 1.13 for 75-79 years, 1.31 for 80-84 years, and 1.46 for ≥85 years compared with 65-69 years; all P<.05), female sex (OR, 1.09; P<.05), black race (OR 1.23; P<.05), larger tumor size (ORs of 1.23 for 11-20 mm and 1.28 for 21-30 mm tumors vs 1-10 mm tumors; all P<.05), and higher modified Charlson-Deyo comorbidity score (OR, 1.28 for score >1 vs score of 0; P<.05). CONCLUSIONS: Roughly 1 in 4 patients with stage IA NSCLC received brain imaging at the time of diagnosis despite national recommendations against the practice. Although several patient factors are associated with receipt of brain imaging, there is significant geographic variation across the United States. Closer adherence to clinical guidelines is likely to result in more cost-effective care.

Unrealistic parental expectations for cure in poor-prognosis childhood cancer.

BACKGROUND: Many parents of children with advanced cancer pursue curative goals when cure is no longer possible. To the authors' knowledge, no pediatric studies to date have prospectively evaluated prognosis communication or influences on decision making in poor-prognosis childhood cancer. METHODS: The authors conducted a prospective cohort study at 9 pediatric cancer centers that enrolled 95 parents of children with recurrent or refractory, high-risk neuroblastoma (63% of those who were approached), a condition for which cure rarely is achieved. Parents were surveyed regarding the child's likelihood of cure; their primary goal of care; the child's symptoms, suffering, and quality of life; and regret concerning the last treatment decision. Medical records identified care and treatment decisions. RESULTS: Only 26% of parents recognized that the chance of cure was <25%. When asked to choose a single most important goal of care, approximately 72% chose cure, 10% chose longer life, and 18% chose quality of life. Parents were more likely to prioritize quality of life when they recognized the child's poor prognosis (P = .002). Approximately 41% of parents expressed regret about the most recent treatment decision. Parents were more likely to experience regret if the child had received higher intensity medical care (odds ratio [OR], 3.14; 95% CI, 1.31-7.51), experienced suffering with limited benefit from the most recent treatment (OR, 4.78; 95% CI, 1.16-19.72), or experienced suffering from symptoms (OR, 2.91; 95% CI, 1.18-7.16). CONCLUSIONS: Parents of children with poor-prognosis cancer frequently make decisions based on unrealistic expectations. New strategies for effective prognosis communication are needed.

Mortality After Invasive Second Breast Cancers Following Prior Radiotherapy for DCIS.

BACKGROUND: Women with a history of ductal carcinoma in situ (DCIS) are at increased risk for developing a second breast cancer (SBC). A prior meta-analysis of randomized studies of radiotherapy (RT) for DCIS has shown a trend toward increased breast cancer-specific mortality after SBC, but it did not have the power needed to detect a significant difference, due to a limited number of recurrences. This study sought to evaluate the impact of RT for DCIS on mortality after SBC in a larger cohort. PATIENTS AND METHODS: Using the SEER database, 3,407 patients were identified who received breast-conserving therapy with or without RT for primary DCIS in 2000 through 2013 and subsequently developed a stage I-III invasive SBC within the same time period. Fine-Gray competing risk models were used to study the association between receipt of RT and mortality after SBC. RESULTS: Prior RT was found to be associated with higher rates of breast cancer-specific mortality (hazard ratio [HR], 1.70; 95% CI, 1.18-2.45; P=.005), even after controlling for cancer stage. Interaction analysis suggested that this risk trended higher in patients with ipsilateral versus contralateral SBC (HR, 2.07 vs 1.26; P=.16). Furthermore, compared with patients who developed contralateral SBC, those with ipsilateral SBC were younger (P<.001) and more often lacked estrogen receptor expression (P<.001). CONCLUSIONS: Patients who previously received RT for DCIS had higher mortality after developing an invasive SBC than those who did not receive RT. This finding may have implications for initial treatment decisions in the management of DCIS.

Duality of purpose: Participant and parent understanding of the purpose of genomic tumor profiling research among children and young adults with solid tumors.

PURPOSE: Increasing use of genomic tumor profiling may blur the line between research and clinical care. We aimed to describe research participants' perspectives on the purpose of genomic tumor profiling research in pediatric oncology. METHODS: We surveyed 45 participants (response rate 85%) in a pilot study of genomic profiling in pediatric solid tumors at four academic cancer centers following return of sequencing results. We defined understanding according to a one-item ("basic") definition (recognizing that the primary purpose was not to improve the patient's treatment) and a four-item ("comprehensive") definition (primary purpose was not to improve patient's treatment; primary purpose was to improve treatment of future patients; there may not be direct medical benefit; most likely result of participation was not increased likelihood of cure). RESULTS: Sixty-eight percent of respondents (30/44) demonstrated basic understanding of the study purpose; 55% (24/44) demonstrated comprehensive understanding. Understanding was more frequently seen in those with higher education and greater genetic knowledge according to basic (81% vs 50%, p=0.05; and 82% vs 46%, p=0.03, respectively) and comprehensive definitions (73% vs 28%, p=0.01; 71% vs 23%, p=0.01). Ninety-three percent of respondents who believed the primary purpose was to improve the patient's care simultaneously stated that the research also aimed to benefit future patients. CONCLUSIONS: Most participants in pediatric tumor profiling research understand that the primary goal of this research is to improve care for future patients, but many express dual goals when participating in sequencing research. Some populations demonstrate increased rates of misunderstanding. Nuanced participant views suggest further work is needed to assess and improve participant understanding, particularly as tumor sequencing moves beyond research into clinical practice.

Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies.

PURPOSE: As exome and genome sequencing (ES/GS) enters the clinic, there is an urgent need to understand the psychological effects of test result disclosure. Through a Clinical Sequencing Exploratory Research (CSER), phase 1 (CSER1) Consortium collaboration, we evaluated participants' psychological outcomes across multiple clinical settings. METHODS: We conducted a random effects meta-analysis of state anxiety (Hospital Anxiety and Depression Scale [HADS]/Generalized Anxiety Disorder 7-item), depressive symptoms (HADS/Personal Health Questionnaire 9-item), and multidimensional impact (i.e., test-related distress, uncertainty and positive impact: modified Multidimensional Impact of Cancer Risk Assessment/Feelings About Genomic Testing Results scale). RESULTS: Anxiety and depression did not increase significantly following test result disclosure. Meta-analyses examining mean differences from pre- to postdisclosure revealed an overall trend for a decrease in participants' anxiety. We observed low levels of test-related distress and perceptions of uncertainty in some populations (e.g., pediatric patients) and a wide range of positive responses. CONCLUSION: Our findings across multiple clinical settings suggest no clinically significant psychological harms from the return of ES/GS results. Some populations may experience low levels of test-related distress or greater positive psychological effects. Future research should further investigate the reasons for test-related psychological response variation.

Spending for Advanced Cancer Diagnoses: Comparing Recurrent Versus De Novo Stage IV Disease.

PURPOSE: Spending for patients with advanced cancer is substantial. Past efforts to characterize this spending usually have not included patients with recurrence (who may differ from those with de novo stage IV disease) or described which services drive spending. METHODS: Using SEER-Medicare data from 2008 to 2013, we identified patients with breast, colorectal, and lung cancer with either de novo stage IV or recurrent advanced cancer. Mean spending/patient/month (2012 US dollars) was estimated from 12 months before to 11 months after diagnosis for all services and by the type of service. We describe the absolute difference in mean monthly spending for de novo versus recurrent patients, and we estimate differences after controlling for type of advanced cancer, year of diagnosis, age, sex, comorbidity, and other factors. RESULTS: We identified 54,982 patients with advanced cancer. Before diagnosis, mean monthly spending was higher for recurrent patients (absolute difference: breast, $1,412; colorectal, $3,002; lung, $2,805; all P < .001), whereas after the diagnosis, it was higher for de novo patients (absolute difference: breast, $2,443; colorectal, $4,844; lung, $2,356; all P < .001). Spending differences were driven by inpatient, physician, and hospice services. Across the 2-year period around the advanced cancer diagnosis, adjusted mean monthly spending was higher for de novo versus recurrent patients (spending ratio: breast, 2.39 [95% CI, 2.05 to 2.77]; colorectal, 2.64 [95% CI, 2.31 to 3.01]; lung, 1.46 [95% CI, 1.30 to 1.65]). CONCLUSION: Spending for de novo cancer was greater than spending for recurrent advanced cancer. Understanding the patterns and drivers of spending is necessary to design alternative payment models and to improve value.

Performance of Cancer Recurrence Algorithms After Coding Scheme Switch From International Classification of Diseases 9th Revision to International Classification of Diseases 10th Revision.

PURPOSE: We previously developed and validated informatic algorithms that used International Classification of Diseases 9th revision (ICD9)-based diagnostic and procedure codes to detect the presence and timing of cancer recurrence (the RECUR Algorithms). In 2015, ICD10 replaced ICD9 as the worldwide coding standard. To understand the impact of this transition, we evaluated the performance of the RECUR Algorithms after incorporating ICD10 codes. METHODS: Using publicly available translation tables along with clinician and other expertise, we updated the algorithms to include ICD10 codes as additional input variables. We evaluated the performance of the algorithms using gold standard recurrence measures associated with a contemporary cohort of patients with stage I to III breast, colorectal, and lung (excluding IIIB) cancer and derived performance measures, including the area under the receiver operating curve, average absolute prediction error, and correct classification rate. These values were compared with the performance measures derived from the validation of the original algorithms. RESULTS: A total of 659 colorectal, 280 lung, and 2,053 breast cancer cases were identified. Area under the receiver operating curve derived from the updated algorithms was 89.0% (95% CI, 82.3% to 95.7%), 88.9% (95% CI, 79.3% to 98.2%), and 80.5% (95% CI, 72.8% to 88.2%) for the colorectal, lung, and breast cancer algorithms, respectively. Average absolute prediction errors for recurrence timing were 2.7 (SE, 11.3%), 2.4 (SE, 10.4%), and 5.6 months (SE, 21.8%), respectively, and timing estimates were within 6 months of actual recurrence for more than 80% of colorectal, more than 90% of lung, and more than 50% of breast cancer cases using the updated algorithm. CONCLUSION: Performance measures derived from the updated and original algorithms had overlapping confidence intervals, suggesting that the ICD9 to ICD10 transition did not affect the RECUR Algorithm performance.

How Do Blood Cancer Doctors Discuss Prognosis? Findings from a National Survey of Hematologic Oncologists.

Background: Although blood cancers are accompanied by a high level of prognostic uncertainty, little is known about when and how hematologic oncologists discuss prognosis. Objectives: Characterize reported practices and predictors of prognostic discussions for a cohort of hematologic oncologists. Design: Cross-sectional mailed survey in 2015. Setting/Subjects: U.S.-based hematologic oncologists providing clinical care for adult patients with blood cancers. Measurements: We conducted univariable and multivariable analyses assessing the association of clinician characteristics with reported frequency of initiation of prognostic discussions, type of terminology used, and whether prognosis is readdressed. Results: We received 349 surveys (response rate = 57.3%). The majority of respondents (60.3%) reported conducting prognostic discussions with "most" (>95%) of their patients. More than half (56.8%) preferred general/qualitative rather than specific/numeric terms when discussing prognosis. Although 91.3% reported that they typically first initiate prognostic discussions at diagnosis, 17.7% reported routinely never readdressing prognosis or waiting until death is imminent to revisit the topic. Hematologic oncologists with ≤15 years since medical school graduation (odds ratio [OR] 0.51; confidence interval (95% CI) 0.30-0.88) and those who considered prognostic uncertainty a barrier to quality end-of-life care (OR 0.57; 95% CI 0.35-0.90) had significantly lower odds of discussing prognosis with "most" patients. Conclusions: Although the majority of hematologic oncologists reported discussing prognosis with their patients, most prefer general/qualitative terms. Moreover, even though prognosis evolves during the disease course, nearly one in five reported never readdressing prognosis or only doing so near death. These findings suggest the need for structured interventions to improve prognostic communication for patients with blood cancers.

Impact of pre-diagnosis depressive symptoms and health-related quality of life on treatment choice for ductal carcinoma in situ and stage I breast cancer in older women.

PURPOSE: To examine whether pre-diagnosis patient-reported health-related quality of life (HRQOL) and depressive symptoms are associated with local treatment for older women with ductal carcinoma in situ (DCIS) and stage I breast cancer (BC). METHODS: Using the SEER-MHOS dataset, we identified women ≥ 65 years old with DCIS or stage I BC diagnosed 1998-2011 who completed surveys ≤ 24 months before diagnosis. Depressive symptoms were measured by major depressive disorder (MDD) risk and HRQOL was measured by Physical and Mental Component Summary scores (PCS and MCS, respectively) of the SF-36/VR-12. Associations with treatment choice (breast-conserving surgery [BCS] and radiation therapy [RT], BCS alone, mastectomy) were assessed with multivariable multinomial logistic regression, controlling for patient characteristics. RESULTS: We identified 425 women with DCIS and 982 with stage I BC. Overall, 20.4% endorsed depressive symptoms placing them at risk for MDD pre-diagnosis; mean MCS and PCS scores were 52.3 (SD = 10.1) and 40.5 (SD = 11.5), respectively. Among women with DCIS, those at risk for MDD were more likely to receive BCS (adjusted odds ratio [AOR] 2.04, 95% CI 1.04-4.00, p = 0.04) or mastectomy (AOR 1.88, 95% CI 0.91-3.86, p = 0.09) compared to BCS + RT. For DCIS, MCS score was not associated with treatment; higher PCS score was associated with decreased likelihood of receiving mastectomy versus BCS + RT (AOR 0.71 per 10-point increase, 95% CI 0.54-0.95, p = 0.02). For BC, none of the measures were significantly associated with treatment. CONCLUSION: Older women at risk for MDD before DCIS diagnosis were less likely to receive RT after BCS, compared to BCS alone or mastectomy.

Performance of the International Myeloma Working Group myeloma frailty score among patients 75 and older.

OBJECTIVES: We compared the performance of two frailty scoring systems in predicting survival among older patients with multiple myeloma: the International Myeloma Working Group (IMWG) frailty score (which includes age), and the Fried model for frailty (which does not). METHODS: From 2015 to 2018, all patients aged 75 years and older presenting at our institution with a diagnosis of multiple myeloma were approached for a frailty screening assessment. We first categorized patients' frailty using the Fried model. Then, using available deficit measures, we reclassified frailty using the IMWG approach. We compared the performance of the IMWG strategy to the Fried model in terms of association with overall survival. RESULTS: Of the 98 (92%) patients who consented to a baseline frailty assessment, we found 57% discordance among frailty classification between the two scoring systems. Using the IMWG strategy, 9% of the cohort was "fit," 29% "intermediate-fit," and 62% "frail." Using the Fried model, 29% of the cohort was "robust," 52% "pre-frail," and 19% "frail." Frailty category in the Fried model was predictive of overall survival among our cohort, while frailty category in the IMWG strategy was not (log-rank p = 0.04 vs. 0.34). CONCLUSION: Among our cohort of older patients with myeloma (aged 75 and higher), the Fried model appears to be a better predictor of survival compared to the IMWG strategy. These results suggest that using age as a criterion to identify frailty in older patients with multiple myeloma may limit treatment options for the functionally vigorous.

Parental distress and desire for information regarding long-term implications of pediatric cancer treatment.

BACKGROUND: Parents of children with cancer have unmet information needs regarding future limitations resulting from cancer or its treatment. Prior research has demonstrated that, in early care discussions, clinicians focus on the acute effects of therapy rather than long-term limitations, partly due to worries of causing distress. The validity of concerns regarding distress is unknown. In the current study, the authors evaluated parental distress associated with information regarding future limitations, and the extent to which distress is associated with information preferences. METHODS: The authors surveyed 355 parents of children with cancer within 3 months of diagnosis, and the children's physicians at Dana-Farber Cancer Institute/Boston Children's Cancer and Blood Disorders Center and the Children's Hospital of Philadelphia. The primary outcome was parental distress associated with information regarding long-term limitations. RESULTS: Approximately 46% of parents found information regarding future limitations to be extremely or very upsetting. In multivariate analysis, parents were more likely to consider information regarding future limitations distressing if they also found prognostic information upsetting (odds ratio [OR], 5.36; P<.001), struggled to accept their child's illness (OR, 2.57; P<.001), or had depression (OR, 1.79; P=.01). However, approximately 92% of parents considered information regarding potential future limitations to be extremely/very important. Those who found information regarding future limitations distressing were more likely to consider it important (96% vs 89%; P=.03) and to desire a precise understanding of their child's risks (92% vs 80%; P=.001). CONCLUSIONS: Although information regarding future limitations caused by cancer treatment is upsetting to many parents, the majority of them desire this information, and those who are distressed are more likely to value this information.

Comparing Survival After Recurrent vs De Novo Stage IV Advanced Breast, Lung, and Colorectal Cancer.

The treatments provided to and survival of patients with recurrent vs de novo stage IV advanced breast, lung, and colorectal cancer may differ but have not been well studied. Using population-based data from the Cancer Research Network for 4510 patients with advanced breast, lung, or colorectal cancer, we matched recurrent/de novo patients on demographic factors. We found longer survival for recurrent vs de novo lung cancer (182 matched pairs); no significant difference for colorectal cancer (332 matched pairs); and shorter survival for recurrent vs de novo breast cancer (219 matched pairs). Compared with recurrent cases, chemotherapy use and radiation therapy use were more common among de novo cases. Differences in treatment and survival between recurrent and de novo advanced cancer patients could inform prognostic estimates and clinical trial design.

Medical Care Costs for Recurrent versus De Novo Stage IV Cancer by Age at Diagnosis.

OBJECTIVE: To address the knowledge gap regarding medical care costs for advanced cancer patients, we compared costs for recurrent versus de novo stage IV breast, colorectal, and lung cancer patients. DATA SOURCES/STUDY SETTING: Virtual Data Warehouse (VDW) information from three Kaiser Permanente regions: Colorado, Northwest, and Washington. STUDY DESIGN: We identified patients aged ≥21 with de novo or recurrent breast (nde novo  = 352; nrecurrent  = 765), colorectal (nde novo  = 1,072; nrecurrent  = 542), and lung (nde novo  = 4,041; nrecurrent  = 340) cancers diagnosed 2000-2012. We estimated average total monthly and annual costs in the 12 months preceding, month of, and 12 months following the index de novo/recurrence date, stratified by age at diagnosis (<65, ≥65). Generalized linear repeated-measures models controlled for demographics and comorbidity. PRINCIPAL FINDINGS: In the pre-index period, monthly costs were higher for recurrent than for de novo breast (<65: +$2,431; ≥65: +$1,360), colorectal (<65: +$3,219; ≥65: +$2,247), and lung cancer (<65: +$3,086; ≥65: +$2,260) patients. Conversely, during the index and post-index periods, costs were higher for de novo patients. Average total annual pre-index costs were five- to ninefold higher for recurrent versus de novo patients <65. CONCLUSIONS: Cost differences by type of advanced cancer and by age suggest heterogeneous patterns of care that merit further investigation.

Estrogen-receptor status and risk of contralateral breast cancer following DCIS.

PURPOSE: As local therapies improve, contralateral breast cancer (CBC) risk for women with ductal carcinoma in situ (DCIS) may exceed the risk of a second ipsilateral breast cancer. We sought to determine whether estrogen-receptor (ER) status influenced CBC risk. METHODS: We identified women aged 40-79 with DCIS diagnosed between 1990 and 2002 using the Surveillance, Epidemiology, and End Results database. We used multivariable competing risk regression to examine predictors of time from index DCIS to CBC (invasive or in situ). RESULTS: Multivariable competing risk regression found ER status to be a highly significant predictor of CBC. The 10-year cumulative incidence was estimated to be 5.3% (95% CI 4.8-5.8%) among ER positive (ER+) cases and 3.3% (95% CI 2.6-4.0%) among ER negative (ER-). CONCLUSIONS: This finding suggests that ER+ DCIS may represent a field effect that confers increased propensity for developing cancer across breast tissue, regardless of laterality. In contrast, ER- DCIS may represent an isolated local event. Given that the majority of DCIS is ER+, and only a minority of DCIS patients receive hormonal therapy, consideration of ER status may influence treatment and surveillance approaches.

Development, Validation, and Dissemination of a Breast Cancer Recurrence Detection and Timing Informatics Algorithm.

Background: This study developed, validated, and disseminated a generalizable informatics algorithm for detecting breast cancer recurrence and timing using a gold standard measure of recurrence coupled with data derived from a readily available common data model that pools health insurance claims and electronic health records data. Methods: The algorithm has two parts: to detect the presence of recurrence and to estimate the timing of recurrence. The primary data source was the Cancer Research Network Virtual Data Warehouse (VDW). Sixteen potential indicators of recurrence were considered for model development. The final recurrence detection and timing models were determined, respectively, by maximizing the area under the ROC curve (AUROC) and minimizing average absolute error. Detection and timing algorithms were validated using VDW data in comparison with a gold standard recurrence capture from a third site in which recurrences were validated through chart review. Performance of this algorithm, stratified by stage at diagnosis, was compared with other published algorithms. All statistical tests were two-sided. Results: Detection model AUROCs were 0.939 (95% confidence interval [CI] = 0.917 to 0.955) in the training data set (n = 3370) and 0.956 (95% CI = 0.944 to 0.971) and 0.900 (95% CI = 0.872 to 0.928), respectively, in the two validation data sets (n = 3370 and 3961, respectively). Timing models yielded average absolute prediction errors of 12.6% (95% CI = 10.5% to 14.5%) in the training data and 11.7% (95% CI = 9.9% to 13.5%) and 10.8% (95% CI = 9.6% to 12.2%) in the validation data sets, respectively, and were statistically significantly lower by 12.6% (95% CI = 8.8% to 16.5%, P < .001) than those estimated using previously reported timing algorithms. Similar covariates were included in both detection and timing algorithms but differed substantially from previous studies. Conclusions: Valid and reliable detection of recurrence using data derived from electronic medical records and insurance claims is feasible. These tools will enable extensive, novel research on quality, effectiveness, and outcomes for breast cancer patients and those who develop recurrence.

Meaningful changes in end-of-life care among patients with myeloma.

Patients with advanced myeloma experience a high symptom burden particularly near the end of life, making timely hospice use crucial. Little is known about the quality and determinants of end-of-life care for this population, including whether potential increases in hospice use are also accompanied by "late" enrollment (≤ 3 days before death). Using the Surveillance, Epidemiology, and End-Results-Medicare database, we identified patients ≥ 65 years diagnosed with myeloma between 2000 and 2013 who died by December 31, 2013. We assessed prevalence and trends in hospice use, including late enrollment. We also examined six established measures of potentially aggressive medical care at the end of life. Independent predictors of late hospice enrollment and aggressive end-of-life care were assessed using multivariable logistic regression analyses. Of 12,686 myeloma decedents, 48.2% enrolled in hospice. Among the 6111 who enrolled, 17.2% spent ≤ 3 days there. There was a significant trend in increasing hospice use, from 28.5% in 2000 to 56.5% by 2013 (Ptrend <0.001), no significant rise in late enrollment (12.2% in 2000 to 16.3% in 2013, Ptrend =0.19), and a slight decrease in aggressive end-of-life care (59.2% in 2000 to 56.7% in 2013, Ptrend =0.01). Patients who were transfusion-dependent, on dialysis, or survived for less than one year were more likely to enroll late in hospice and experience aggressive medical care at the end of life. Gains in hospice use for myeloma decedents were not accompanied by increases in late enrollment or aggressive medical care. These findings suggest meaningful improvements in end-of-life care for this population.

Parent understanding of the risk of future limitations secondary to pediatric cancer treatment.

BACKGROUND: Parents and physicians may have different understandings of a child's risk of future limitations due to cancer or cancer treatment. We evaluated alignment between parent- and physician-estimated risk of late effects. METHODS: We surveyed 352 parents of children with cancer within 12 weeks of diagnosis, and the children's oncologists, at Dana-Farber/Boston Children's Cancer and Blood Disorders Center and Children's Hospital of Philadelphia. We assessed parent and physician estimations of the child's risk of future limitations in physical abilities, intelligence, or quality of life (QOL) due to cancer treatment. Physician-estimated risk of limitations ≥50% was considered high risk. RESULTS: Physicians considered 22% of children at high risk of physical impairments, 9% at high risk for impaired intelligence, and 6% at high risk for impaired QOL. Among high-risk children, 38% of parents recognized this risk in physical abilities, 21% in intelligence, and 5% in QOL. In multivariable analysis, parental understanding of risk, defined as concordant parent and physician estimates, was greater among parents of children at lower risk of future limitations (odds ratio 2.59; 95% confidence interval 1.35-4.96). Regardless of risk, 92% of parents considered it very/extremely important to receive information about potential health implications of cancer treatment. CONCLUSIONS: Although most parents want information about life after cancer, most parents of children at high risk of future impairment do not recognize this risk. Strategies to improve communication about late effects throughout pediatric cancer treatment should prioritize meeting information needs and improving parent understanding of the risk of impairment.