Cancer Care Outcomes Research Research Articles

Racial and ethnic disparities in cancer caregiver burden and potential sociocultural mediators

PurposeBlack and Hispanic cancer patients experience many worse care quality and health outcomes than non-Hispanic White patients, yet less is known about disparities in caregiving responsibilities and burden among cancer caregivers.MethodsWe analyzed cross-sectional data from Cancer Care Outcomes Research and Surveillance consortium, a large multi-regional, population-based study of colorectal and lung cancer patients and their caregivers. Bivariate and multivariable regression models assessed differences by racial and ethnic groups in caregiving responsibilities and social/emotional, financial, and health burdens. Structural equation models estimated whether sociocultural resources (social support, caregiving preparedness, caregiver–patient communication) mediated racial and ethnic differences in caregiver burden.ResultsCompared with non-Hispanic White caregivers (N = 1,169), Black (N = 220) and Hispanic (N = 84) caregivers spent more time caregiving (18 vs. 26 vs. 26 h/week; P < 0.001), completed more tasks (6.8 vs. 7.6 vs. 8.7; P < 0.05), and reported greater financial burden (P = 0.02). Yet, compared to non-Hispanic Whites, Hispanic caregivers reported similar social/emotional and health burdens, while Black caregivers reported lower levels (P < 0.01). In adjusted models, disparities in financial burden disappeared, and Hispanic caregivers had less health burden than non-Hispanic White caregivers (P = 0.01). Social support and/or caregiving preparedness partially mediated the Black–White gap for all three types of burdens.ConclusionsBlack and Hispanic cancer caregivers perform more caregiving and report greater financial burden than non-Hispanic White caregivers, but experience lower or equivalent social/emotional and health burdens. Racial differences in caregivers’ social support and caregiving preparedness levels partially explain Black–White burden differences. Research and policy should address Black and Hispanic caregivers’ increased financial burden.

Long-term follow-up of smokers following lung and colorectal cancer diagnosis.

Continued smoking after a cancer diagnosis limits the effectiveness of treatment, increases the risk of cancer recurrence or secondary malignancies, and is associated with poorer quality of life and survival. A cancer diagnosis may provide a meaningful timepoint for quitting, but the prevalence and characteristics of continued smoking through survivorship are poorly understood. In the multi-regional Cancer Care Outcomes Research and Surveillance (CanCORS) cohort, we examined smoking rates and factors associated with continued smoking at long-term follow-up among lung and colorectal cancer patients. This paper builds upon previous CanCORS participant data addressing quit rates and associated characteristics at baseline and 5months post-diagnosis. At long-term follow-up (median 7.3years post-diagnosis [IQR = 5.9-8.7]), 16.7% of lung cancer and 11.6% of colorectal cancer survivors continued to smoke combustible cigarettes. Factors independently associated with continued smoking at long-term follow-up included being male, younger, not married or partnered, having Medicare, Medicaid/other public or no insurance, more depression symptoms, smoking more cigarettes per day, and having a history of lung disease (p < .05). Continued smoking did not vary by lung vs. colorectal cancer diagnosis. Of active smokers at the time of diagnosis, an important minority of lung and colorectal cancer survivors continued to smoke well into survivorship. Understanding characteristics associated with continued smoking after a cancer diagnosis may help inform the development of tobacco treatment programs for cancer patients and survivors. While addressing smoking cessation at the time of diagnosis is critical to ensure better long-term treatment outcomes and quality of life, it is essential to continue smoking cessation discussions and efforts throughout care and survivorship.

Comparing adult-child and spousal caregiver burden and potential contributors.

Adult-children caring for a parent with cancer comprise a significant segment of caregivers. Yet less is known about adult-child caregivers, their burden, or caregivers' and patients' gender's impact, which may differ from the well-studied spousal caregiver. This knowledge gap may hinder efforts to ameliorate adult-children's caregiver burden. We analyzed caregiver surveys from the Cancer Care Outcomes Research and Surveillance Consortium, a multi-regional population-based study of patients with colorectal or lung cancer. Using t tests and multivariate regression models, we assessed whether adult-child and spousal caregivers' caregiving responsibilities and social/emotional and financial burdens differed and used structural equation models (SEMs) to examine mediating factors. Compared with spouses/partners (N=1007), adult-children (N=227) spent less time caregiving (14 vs 23hours/week; P<.001), but experienced higher social/ emotional burden (P<.01). In models adjusted for objective caregiving burden measures and demographics, adult-children's social/emotional (P<.05) and financial burdens (P<.01) were greater than spouses'. Poor communication quality was associated with greater social/emotional burden for both groups (P<.05). SEMs indicated that gender concordance between caregivers and patients (eg, daughters caring for mothers) and caregiver employment increased the difference between adult-child and spouses' social/emotional burden, whereas caregiver-patient relationship quality reduced it. Adult-children spend less time caregiving than spouses/partners, but have higher social/emotional and financial caregiving burdens, partially due to adult-children's employment, caregiver-patients' gender concordance, and relationship quality. Gender concordance's contribution to greater social/emotional burden adds important context to prior findings, indicating female caregivers experience the most burden. Interventions that improve caregiver-patient communication may reduce both adult-child and spousal caregiver burden.

Comparing adult child and spousal caregiver burden and potential causes.

12127 Background: Adult children caring for a parent with cancer comprise a significant segment of caregivers. Demographic trends indicate this caregiving population will grow as the baby boomer generation ages. Yet little is known about adult child caregivers’ needs and experiences and how they differ from the well-studied spousal caregiver. This knowledge gap may hinder efforts to ameliorate adult children’s caregiver burden and its impact on patients. Methods: We analyzed adult child and spousal/partner caregivers’ surveys from the Cancer Care Outcomes Research and Surveillance consortium, a multi-regional population-based study of approximately 10,000 persons with newly diagnosed colorectal and lung cancer. We used t-tests and a series of multivariate regression models to assess whether adult child and spousal caregivers’ caregiving responsibilities, social/emotional burden, and financial burden (scaled 0-10) differed and examined patient and caregiver characteristics’ mediation of variation in burden. Results: Compared to spouses/partners (N=1029), adult children (N=230) completed similar levels of caregiving tasks but spent less time (14 vs. 24 hours/week; p&lt;0.001). However, adult children experienced higher social/emotional burden (2.9 vs. 2.4; p&lt;0.01). In baseline models controlling for patient clinical factors, caregiving characteristics, and caregiver demographics, adult children’s average social/emotional and financial burdens were statistically higher than spouses/partners. Additional adjustment for caregivers’ childcare responsibilities and employment eliminated social/emotional and financial burden disparities. Additional adjustment to the baseline model for caregiver-patient gender concordance eliminated the social/emotional burden gap. Communication quality was a large and statistically significant predictor of both burdens (p&lt;0.001). Conclusions: Adult children spend less time caregiving than spouses/partners but experience higher caregiving burden. Adult children’s childcare and career responsibilities help explain this increased burden. Gender concordance between caregiver and patient may also contribute to social/emotional burden, adding important context to prior research indicating female caregivers experience the greatest burden. Interventions to improve communication between caregivers and patients have the potential to reduce both adult child and spouses/partners caregiver burden. Adjusted average caregiver burden for adult child and spousal caregivers. [Table: see text]

The role of body mass index at diagnosis of colorectal cancer on Black-White disparities in survival: a density regression mediation approach.

The study of racial/ethnic inequalities in health is important to reduce the uneven burden of disease. In the case of colorectal cancer (CRC), disparities in survival among non-Hispanic Whites and Blacks are well documented, and mechanisms leading to these disparities need to be studied formally. It has also been established that body mass index (BMI) is a risk factor for developing CRC, and recent literature shows BMI at diagnosis of CRC is associated with survival. Since BMI varies by racial/ethnic group, a question that arises is whether differences in BMI are partially responsible for observed racial/ethnic disparities in survival for CRC patients. This article presents new methodology to quantify the impact of the hypothetical intervention that matches the BMI distribution in the Black population to a potentially complex distributional form observed in the White population on racial/ethnic disparities in survival. Our density mediation approach can be utilized to estimate natural direct and indirect effects in the general causal mediation setting under stronger assumptions. We perform a simulation study that shows our proposed Bayesian density regression approach performs as well as or better than current methodology allowing for a shift in the mean of the distribution only, and that standard practice of categorizing BMI leads to large biases when BMI is a mediator variable. When applied to motivating data from the Cancer Care Outcomes Research and Surveillance (CanCORS) Consortium, our approach suggests the proposed intervention is potentially beneficial for elderly and low-income Black patients, yet harmful for young or high-income Black populations.

Dyadic associations between perceived social support and cancer patient and caregiver health: An actor-partner interdependence modeling approach.

Social support may have a positive impact on health outcomes for patients and caregivers, but the extent to which social support and health outcomes are interrelated for both is unknown. We examine the dyadic interrelationships between social support and health among cancer patients and their caregivers. Lung and colorectal cancer (CRC) patient and caregiver dyadic data were obtained from the Cancer Care Outcomes Research and Surveillance Consortium. Patients and caregivers self-reported sociodemographic, social support, and caregiving characteristics at 5 (n=218 lung; n=222 CRC) or 12months post-diagnosis (n=198 lung; n=290 CRC). Structural equation modeling was used to examine actor-partner interdependence models (APIM) of lung and CRC dyads at 5 and 12months post-diagnosis. At 5months post-diagnosis, no interdependence between patient and caregiver social support was detected for CRC or lung dyads (all P> 0.05). At 12months post diagnosis, no interdependence was detected for CRC dyads (all P>0.70); lung dyads showed complete interdependence, indicating patient social support is associated with better caregiver self-reported health (β=0.15, P<0.001), and caregiver social support is associated with better patient self-reported health (β=0.18, P<0.001). Social support has a positive impact on patient and caregiver perceived health across the cancer trajectory, and these effects may differ by cancer site and time. Future research and translational efforts are needed to identify effective ways to bolster both patient and caregiver social support and to determine critical moments for intervention.

Factors Contributing To Geographic Variation In End-Of-Life Expenditures For Cancer Patients.

Health care spending in the months before death varies across geographic areas but is not associated with outcomes. Using data from the prospective multiregional Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) study, we assessed the extent to which such variation is explained by differences in patients' sociodemographic factors, clinical factors, and beliefs; physicians' beliefs; and the availability of services. Among 1,132 patients ages sixty-five and older who were diagnosed with lung or colorectal cancer in 2003-05, had advanced-stage cancer, died before 2013, and were enrolled in fee-for-service Medicare, mean expenditures in the last month of life were $13,663. Physicians in higher-spending areas reported less knowledge about and comfort with treating dying patients and less positive attitudes about hospice, compared to those in lower-spending areas. Higher-spending areas also had more physicians and fewer primary care providers and hospices in proportion to their total population than lower-spending areas did. Availability of services and physicians' beliefs, but not patients' beliefs, were important in explaining geographic variations in end-of-life spending. Enhanced training to better equip physicians to care for patients at the end of life and strategic resource allocation may have potential for decreasing unwarranted variation in care.

The Association of Proxy Care Engagement with Proxy Reports of Patient Experience and Quality of Life.

To assess the association of proxy-specific covariates with proxy-reported patient cancer care experience, quality rating, and quality of life. Secondary analysis of data from the Cancer Care Outcomes Research and Surveillance (CanCORS) study. Cross-sectional observational study. The respondents were proxies for patients with incident colorectal or lung cancer. Analyses used linear regression models and adjusted for patient sociodemographic and clinical characteristics. Outcomes included patients' experiences with medical care, nursing care, and care coordination, overall quality ratings, and physical and mental health, all scored on 0-100 scales (0=worst, 100=best). Independent variables included the proxy's relationship with the patient and engagement in patient care. Of 1,011 proxies, most were the patient's spouse (50 percent) or child (36 percent). Although most proxies (66 percent) always attended medical visits, 3 percent reported never attending. After adjustment, on average children reported worse experiences and poorer quality care than spouses (4-9 points lower across outcomes). Proxies who never attended medical visits reported significantly worse medical care (-11 points, 95 percent CI=-18 to -3) and care coordination (-13 points, 95 percent CI=-20 to -6). Collecting data on proxy engagement in care is warranted if proxy responses are used.

The role of patients’ families in treatment decision-making among adult cancer patients in the Sultanate of Oman

There are limited numbers of studies available in Middle Eastern Arabic countries regarding participation of family ‎members in cancer treatment decision-making (TDM). The aim of this study was to evaluate the role of family members' ‎in TDM among ‎adult Omani cancer ‎patients. A cross-sectional study was conducted in two main teaching hospitals. All adult Omani patients who were diagnosed with cancer and their nominated family members were invited to ‎participate. A tool developed by Cancer Care Outcomes Research and ‎Surveillance Consortium was used to identify the level of family involvement in TDM. A weighted kappa (k) was significant (p<.001) and showed almost full agreement between the patients' experiences and their preferences ‎(‎k=.98) and between family members' experiences and their preferences ‎(‎k=.96) ‎‎of family involvement in TDM. Binary logistic regression showed significant family-controlled TDM if the patient communicated‎ less with oncologists (OR=9.89; 95% CI: 3.79-25.81); financial dependence of the patient on their families ‎(OR=6.21; 95% CI: 2.19-17.10‎); and advanced stages of cancer at the time of diagnosis ‎(OR=3.10; 95% CI: 1.37-7.03). Oncologists in Oman should be aware of the strong family involvement in TDM to allow a successful cancer treatment.

Smoking Status and Survival Among a National Cohort of Lung and Colorectal Cancer Patients

The purpose of this study was to explore the association of smoking status and clinically relevant duration of smoking cessation with long-term survival after lung cancer (LC) or colorectal cancer (CRC) diagnosis. We compared survival of patients with LC and CRC who were never-smokers, long-term, medium-term, and short-term quitters, and current smokers around diagnosis. We studied 5575 patients in Cancer Care Outcomes Research and Surveillance (CanCORS), a national, prospective observational cohort study, who provided smoking status information approximately 5 months after LC or CRC diagnosis. Smoking status was categorized as: never-smoker, quit >5 years prior to diagnosis, quit between 1-5 years prior to diagnosis, quit less than 1 year before diagnosis, and current smoker. We examined the relationship between smoking status around diagnosis with mortality using Cox regression models. Among participants with LC, never-smokers had lower mortality risk compared with current smokers (HR 0.71, 95% CI 0.57 to 0.89). Among participants with CRC, never-smokers had a lower mortality risk as compared to current smokers (HR 0.79, 95% CI 0.64 to 0.99). Among both LC and CRC patients, current smokers at diagnosis have higher mortality than never-smokers. This effect should be further studied in the context of tumor biology. However, smoking cessation around the time of diagnosis did not affect survival in this sample. The results from our analysis of patients in the CanCORS consortium, a large, geographically diverse cohort, show that both LC and CRC patients who were actively smoking at diagnosis have worse survival as compared to never-smokers. While current smoking is detrimental to survival, cessation upon diagnosis may not mitigate this risk.

Proxy and patient reports of health-related quality of life in a national cancer survey

BackgroundProxy respondents are frequently used in surveys, including those assessing health-related quality of life (HRQOL). In cancer, most research involving proxies has been undertaken with paired proxy-patient populations, where proxy responses are compared to patient responses for the same individual. In these populations, proxy-patient differences are small and suggest proxy underestimation of patient HRQOL. In practice, however, proxy responses will only be used when patient responses are not available. The difference between proxy and patient reports of patient HRQOL where patients are not able to report for themselves in cancer is not known. The objective of this study was to evaluate the difference between patient and proxy reports of patient HRQOL in a large national cancer survey, and determine if this difference could be mitigated by adjusting for clinical and sociodemographic information about patients.MethodsData were from the Cancer Care Outcomes Research and Surveillance (CanCORS) study. Patients or their proxies were recruited within 3–6 months of diagnosis with lung or colorectal cancer. HRQOL was measured using the SF-12 mental and physical composite scales. Differences of ½ SD (=5 points) were considered clinically significant. The primary independent variable was proxy status. Linear regression models were used to adjust for patient sociodemographic and clinical covariates, including cancer stage, patient age and education, and patient co-morbidities.ResultsOf 6471 respondents, 1011 (16%) were proxies. Before adjustment, average proxy-reported scores were lower for both physical (−6.7 points, 95% CI -7.4 to −5.9) and mental (−6 points, 95% CI -6.7 to −5.2) health. Proxy-reported scores remained lower after adjustment (physical: −5.8 points, −6.6 to −5; mental: −5.8 points, −6.6 to 5). Proxy-patient score differences remained clinically and statistically significant, even after adjustment for sociodemographic and clinical variables.ConclusionsProxy-reported outcome scores for both physical and mental health were clinically and significantly lower than patient-reported scores for these outcomes. The size of the proxy-patient score differences was not affected by the health domain, and adjustment for sociodemographic and clinical variables had minimal impact.

Detecting Lung and Colorectal Cancer Recurrence Using Structured Clinical/Administrative Data to Enable Outcomes Research and Population Health Management.

Recurrent cancer is common, costly, and lethal, yet we know little about it in community-based populations. Electronic health records and tumor registries contain vast amounts of data regarding community-based patients, but usually lack recurrence status. Existing algorithms that use structured data to detect recurrence have limitations. We developed algorithms to detect the presence and timing of recurrence after definitive therapy for stages I-III lung and colorectal cancer using 2 data sources that contain a widely available type of structured data (claims or electronic health record encounters) linked to gold-standard recurrence status: Medicare claims linked to the Cancer Care Outcomes Research and Surveillance study, and the Cancer Research Network Virtual Data Warehouse linked to registry data. Twelve potential indicators of recurrence were used to develop separate models for each cancer in each data source. Detection models maximized area under the ROC curve (AUC); timing models minimized average absolute error. Algorithms were compared by cancer type/data source, and contrasted with an existing binary detection rule. Detection model AUCs (>0.92) exceeded existing prediction rules. Timing models yielded absolute prediction errors that were small relative to follow-up time (<15%). Similar covariates were included in all detection and timing algorithms, though differences by cancer type and dataset challenged efforts to create 1 common algorithm for all scenarios. Valid and reliable detection of recurrence using big data is feasible. These tools will enable extensive, novel research on quality, effectiveness, and outcomes for lung and colorectal cancer patients and those who develop recurrence.

Understanding the goals of chemotherapy for metastatic cancer: A survey of patients receiving palliative treatment in the Philippines.

28 Background: Chemotherapy for metastatic cancer is, for most cases, primarily given with palliative intent. An unrealistic expectation of cure with chemotherapy can influence a patient’s decision to receive treatment with significant physical, financial and psychological effects. This study describes how patients receiving palliative chemotherapy view their illness and treatment. Methods: Patients receiving chemotherapy for metastatic cancer were asked about their understanding of treatment goals using a questionnaire based on portions of the Cancer Care Outcomes Research &amp; Surveillance (CanCORS) survey. The prevalence of responses reflecting a belief of cure with chemotherapy was determined. Additional information gathered included other expectations and attitudes towards illness and treatment. Results: A total of 90 patients receiving treatment at St. Luke’s Cancer Institute participated. Ninety-five percent (n = 85) said they believed chemotherapy could, however likely, cure their cancer. The likelihood of having an unrealistic expectation about chemotherapy was high regardless of sex, age, civil status, social class, educational attainment, cancer type, illness duration, and number of lines of treatment received. As for other expectations of chemotherapy, majority agreed that chemotherapy was somewhat likely to prolong life (51.1%), achieve symptom control (51.1%), and have side effects (50%), yielding a pattern of responses almost identical to the ones about cancer cure. Patients said they worried most about treatment cost and side effects. Despite this, an overwhelming percentage said they would choose to pursue life-prolonging treatment no matter what the cost (physically and financially). Less than half (43.7%) expressed an openness to discuss advance directives with their doctor. This could be seen as an extension of their inaccurate understanding of prognosis, or conversely as a manifestation of avoidance or denial. Conclusions: Many factors influence a patient’s perception of his/her illness and treatment. Further study on specific patient and physician factors may identify key areas of improvement for effective communication.

The role of medical/nursing skills training in caregiver confidence and burden: A CanCORS study.

Informal cancer caregivers provide essential support to cancer patients, including performing direct medical/nursing tasks, assisting with activities of daily living, and offering social support. This study examined associations between the receipt of medical/nursing skills training and the caregiver burden as well as the mediation of caregiving confidence on this relationship in a sample of caregivers of lung and colorectal cancer patients. Caregivers who had been identified by cancer patients in the Cancer Care Outcomes Research and Surveillance consortium completed a questionnaire assessing the care provided, the type of medical/nursing skills training received, the burden (measured with the modified short-form Zarit Burden Interview), and the confidence in caring for their patient's physical needs. Regression models that had been adjusted for sociodemographic, caregiver, and care recipient characteristics assessed the relationship between training received and burden, and a mediation analysis assessed the role of confidence in this relationship. Six hundred forty-one caregivers performed some type of medical/nursing task, with 59% (n = 377) reporting that they did not receive training for all the care provided. Caregivers reported moderate levels of burden (mean summary score, 32.07; standard deviation, 12.66; possible range, 14-70), and a lack of receipt of training was associated with greater levels of burden (b = 2.60; standard error, 0.98; P = .01). Confidence partially mediated the relation between training and burden (Sobel's t = 1.90; P = 0.03). As the number of cancer patients and caregivers increases, understanding how best to reduce the caregiver burden is necessary. Skills training is a potential area for interventions, but research on how best to provide training for caregivers (ie, the content, mode of delivery, and timing) is needed. Cancer 2017;123:4481-7. © 2017 American Cancer Society.

Survival after recurrence of stage I–III breast, colorectal, or lung cancer

BackgroundThe experiences of patients with recurrent cancer are assumed to reflect those of patients with de novo stage IV disease; yet, little is truly known because most registries lack recurrence status. Using two databases with excellent recurrence and death information, we examined determinants of survival duration after recurrence of breast (BC), colorectal (CRC), and lung cancers (LC). MethodsRecurrence status was abstracted from the medical records of patients who participated in the Cancer Care Outcomes Research and Surveillance study and who received care at two Cancer Research Network sites—the Colorado and Northwest regions of Kaiser Permanente. The analysis included 1653 patients who developed recurrence after completing definitive therapy for stages I–III cancer. Multivariable modeling identified independent determinants of survival duration after recurrence, controlling for other factors. ResultsThrough 60 months’ average follow-up, survival after recurrence for BC, CRC, and LC were 28.4, 23.1 and 16.1 months, respectively. Several factors were independently associated with shorter survival for all three cancers, including higher initial stage (III vs. I: BC −9.9 months; CRC −6.9 months; LC −7.4 months; P≤0.01). Factors associated with shorter survival for selected cancers included: distant/regional recurrence for BC and CRC; current/former smoker for LC; high grade for CRC; and <4-year time-to-recurrence for BC. ConclusionsInitial stage predicts survival duration after recurrence, whereas time-to-recurrence usually does not. The impact of biologic characteristics (e.g., grade, hormone-receptor status) on survival duration after recurrence needs further study. Predictors of survival duration after recurrence may help facilitate patient decision-making.

Interrelationships Between Health Behaviors and Coping Strategies Among Informal Caregivers of Cancer Survivors.

Recent research among cancer survivors suggests that health behaviors and coping are intertwined, with important implications for positive behavior change and health. Informal caregivers may have poor health behaviors, and caregivers' health behaviors have been linked to those of survivors. This hypothesis generating study assessed the correlations among health behaviors and coping strategies in a population of lung and colorectal cancer caregivers. This cross-sectional study used data from the Cancer Care Outcomes Research & Surveillance Consortium. Caregivers ( n = 1,482) reported their health behaviors, coping, and sociodemographic and caregiving characteristics. Descriptive statistics assessed the distribution of caregivers' health and coping behaviors, and multivariable linear regressions assessed the associations between health behaviors and coping styles. Many informal caregivers reported regular exercise (47%) and adequate sleep (37%); few reported smoking (19%) or binge drinking (7%). Problem-focused coping was associated with greater physical activity and less adequate sleep (effect sizes [ESs] up to 0.21, p < .05). Those with some physical activity scored higher on emotion-focused coping, while binge drinkers scored lower (ES = 0.16 and 0.27, p < .05). Caregivers who reported moderate daily activity, current smoking, binge drinking, and feeling less well rested scored higher on dysfunctional coping (ES up to 0.49, p < .05). Health behaviors and coping strategies were interrelated among informal cancer caregivers. The relationships suggest avenues for future research, including whether targeting both factors concurrently may be particularly efficacious at improving informal caregiver self-care. Understanding the link between health behaviors and coping strategies may inform health behavior research and practice.

Differences between Proxy and Patient Assessments of Cancer Care Experiences and Quality Ratings.

To assess the impact of proxy survey responses on cancer care experience reports and quality ratings. Secondary analysis of data from Cancer Care Outcomes Research and Surveillance (CanCORS). Recruitment occurred from 2003 to 2005. The study was a cross-sectional observational study. The respondents were patients with incident colorectal or lung cancer or their proxies. Analyses used linear regression models with an independent variable for proxy versus patient responses as well as study site and clinical covariates. The outcomes were experiences with medical care, nursing care, care coordination, and care quality rating. Multiple imputation was used for missing data. Among 6,471 respondents, 1,011 (16 percent) were proxies. The proportion of proxy respondents varied from 6 percent to 28 percent across study sites. Adjusted proxy scores were modestly higher for medical care experiences (+1.28 points [95 percent CI:+ 0.05 to +2.51]), but lower for nursing care (-2.81 [95 percent CI: -4.11 to -1.50]) and care coordination experiences (-2.98 [95 percent CI: -4.15 to -1.81]). There were no significant differences between adjusted patient and proxy ratings of quality. Proxy responses have small but statistically significant differences from patient responses. However, if ratings of care are used for financial incentives, such differences could be exaggerated across practices or areas if proxy use varies.

Family Perspectives on Hospice Care Experiences of Patients with Cancer.

Purpose To determine whether hospice use by patients with cancer is associated with their families' perceptions of patients' symptoms, goal attainment, and quality of end-of-life (EOL) care. Methods We interviewed 2,307 families of deceased patients with advanced lung or colorectal cancer who were enrolled in the Cancer Care Outcomes Research and Surveillance study (a multiregional, prospective, observational study) and died by 2011. We used propensity-score matching to compare family-reported outcomes for patients who did and did not receive hospice care, including the presence and relief of common symptoms (ie, pain, dyspnea), concordance with patients' wishes for EOL care and place of death, and quality of EOL care. We also examined associations between hospice length of stay and these outcomes among hospice enrollees. Results In a propensity-score-matched sample of 1,970 individuals, families of patients enrolled in hospice reported more pain in their patient compared with those not enrolled in hospice. However, families of patients enrolled in hospice more often reported that patients received "just the right amount" of pain medicine (80% v 73%; adjusted difference, 7 percentage points; 95% confidence interval [CI], 1 to 12 percentage points) and help with dyspnea (78% v 70%; adjusted difference, 8 percentage points; 95% CI, 2 to 13 percentage points). Families of patients enrolled in hospice also more often reported that patients' EOL wishes were followed (80% v 74%; adjusted difference, 6 percentage points; 95% CI, 2 to 11 percentage points) and "excellent" quality EOL care (57% v 42%; adjusted difference, 15 percentage points; 95% CI, 11 to 20). Families of patients who received > 30 days of hospice care reported the highest quality EOL outcomes. Conclusion Hospice care is associated with better symptom relief, patient-goal attainment, and quality of EOL care. Encouraging earlier and increased hospice enrollment may improve EOL experiences for patients with cancer and their families.

Longitudinal Changes in Depression Symptoms and Survival Among Patients With Lung Cancer: A National Cohort Assessment.

Purpose Depression symptoms are common among patients with lung cancer; however, longitudinal changes and their impact on survival are understudied. Methods This was a prospective, observational study from the Cancer Care Outcomes Research and Surveillance Consortium from five US geographically defined regions from September 2003 through December 2005. Patients enrolled within 3 months of their lung cancer diagnosis were eligible. The eight-item Center for Epidemiologic Studies Depression scale was administered at diagnosis and 12 months' follow-up. The main outcome was survival, which was evaluated using Kaplan-Meyer curves and adjusted Cox proportional hazards modeling. Results Among 1,790 participants, 681 (38%) had depression symptoms at baseline and an additional 105 (14%) developed new-onset depression symptoms during treatment. At baseline, depression symptoms were associated with increased mortality (hazard ratio [HR], 1.17; 95% CI, 1.03 to 1.32; P = .01). Participants were classified into the following four groups based on longitudinal changes in depression symptoms from baseline to follow-up: never depression symptoms (n = 640), new-onset depression symptoms (n = 105), depression symptom remission (n = 156), and persistent depression symptoms (n = 254) and HRs were calculated. Using the never-depression symptoms group as a reference group, HRs were as follows: new-onset depression symptoms, 1.50 (95% CI, 1.12 to 2.01; P = .006); depression symptom remission, 1.02 (95% CI, 0.79 to 1.31; P = .89), and persistent depression symptoms, 1.42 (95% CI, 1.15 to 1.75; P = .001). At baseline, depression symptoms were associated with increased mortality among participants with early-stage disease (stages I and II; HR, 1.61; 95% CI, 1.26 to 2.04), but not late-stage disease (stages III and IV; HR, 1.05; 95% CI, 0.91 to 1.22). At follow-up, depression symptoms were associated with increased mortality among participants with early-stage disease (HR, 1.71; 95% CI, 1.27 to 2.31) and those with late-stage disease (HR, 1.32; 95% CI, 1.04 to 1.69). Conclusion Among patients with lung cancer, longitudinal changes in depression symptoms are associated with differences in mortality, particularly among patients with early-stage disease. Symptom remission is associated with a similar mortality rate as never having had depression.

How Does Caregiver Well-Being Relate to Perceived Quality of Care in Patients With Cancer? Exploring Associations and Pathways.

Purpose Perceived quality of care (QOC) is an increasingly important metric of care quality and can be affected by such factors among patients with cancer as quality of life and physician trust. This study sought to evaluate whether informal caregiver well-being was also associated with perceived QOC among patients with cancer and assessed potential pathways that link these factors. Methods This study used data from the Cancer Care Outcomes Research and Surveillance (CanCORS) consortium. Patients with lung and colorectal cancer enrolled in CanCORS (N = 689) nominated an informal caregiver to participate in a caregiving survey. Both groups self-reported sociodemographic, psychosocial, and caregiving characteristics; cancer characteristics were obtained from the CanCORS core data set. Multivariable logistic regression was used to assess the association between caregiver psychosocial factors and subsequent patient-perceived QOC, controlling for earlier patient-perceived QOC and covariates. Secondary analysis examined potential pathways that link these factors. Results Patients whose informal caregiver had higher levels of depressive symptoms were significantly more likely to report fair or poor QOC (odds ratio, 1.06; 95% CI, 1.01 to 1.13). When caregivers reported fair or poor self-rated health, patients were more than three times more likely to report fair or poor perceived QOC (odds ratio, 3.76; 95% CI, 1.76 to 9.55). Controlling for patient psychosocial factors and physician communication and coordination of medical care reduced the effect size and/or statistical significance of these relationships. Conclusion Informal caregivers are an important part of the care team and their well-being is associated with patient-perceived QOC. Engaging informal cancer caregivers as part of the care team and conducting ongoing risk stratification screening and intervention to optimize their health may improve patient-reported outcomes and QOC.