The Association between Medication Adherence and Visual Field Progression in the Collaborative Initial Glaucoma Treatment Study.

PURPOSE: To evaluate the relationship between medication adherence and visual field progression in participants randomized to the medication arm of the Collaborative Initial Glaucoma Treatment Study (CIGTS). DESIGN: The CIGTS was a randomized, multicenter clinical trial comparing initial treatment with topical medications to trabeculectomy for 607 participants with newly diagnosed glaucoma. PARTICIPANTS: Three hundred seven participants randomized to the medication arm of the CIGTS. METHODS: Participants were followed up at 6-month intervals for up to 10 years. Self-reported medication adherence and visual fields were measured. Medication adherence was assessed by telephone from responses to the question, "Did you happen to miss any dose of your medication yesterday?" The impact of medication adherence on mean deviation (MD) over time was assessed with a linear mixed regression model adjusting for the effects of baseline MD and age, cataract extraction, interactions, and time (through year 8, excluding time after crossover to surgery). Medication adherence was modeled as a cumulative sum of the number of prior visits where a missed dose of medication was reported. MAIN OUTCOME MEASURE: Mean deviation over time. RESULTS: Three hundred seven subjects (306 with adherence data) were randomized to treatment with topical medications and followed up for an average of 7.3 years (standard deviation, 2.3 years). One hundred forty-two subjects (46%) reported never missing a dose of medication over all available follow-up, 112 patients (37%) reported missing medication at up to one third of visits, 31 patients (10%) reported missing medication at one third to two thirds of visits, and 21 patients (7%) reported missing medication at more than two thirds of visits. Worse medication adherence was associated with loss of MD over time (P = 0.005). For subjects who reported never missing a dose of medication, the average predicted MD loss over 8 years was 0.62 dB, consistent with age-related loss (95% confidence interval [CI], 0.17-1.06; P = 0.007); subjects who reported missing medication doses at one third of visits had a loss of 1.42 dB (95% CI, 0.86-1.98; P < 0.0001); and subjects who reported missing medication doses at two thirds of visits showed a loss of 2.23 dB (95% CI, 1.19-3.26; P < 0.0001). CONCLUSIONS: This longitudinal assessment demonstrated a statistically and clinically significant association between medication nonadherence and glaucomatous vision loss.

Understanding the engagement of key decision support persons in patient decision making around breast cancer treatment.

BACKGROUND: Patients with breast cancer involve multiple decision support persons (DSPs) in treatment decision making, yet little is known about DSP engagement in decision making and its association with patient appraisal of the decision process. METHODS: Patients newly diagnosed with breast cancer reported to Georgia and Los Angeles Surveillance, Epidemiology, and End Results registries in 2014-2015 were surveyed 7 months after their diagnosis. The individual most involved in each respondent's decision making (the key DSP) was surveyed. DSP engagement was measured across 3 domains: 1) informed about decisions, 2) involved in decisions, and 3) aware of patient preferences. Patient decision appraisal included subjective decision quality (SDQ) and deliberation. This study evaluated bivariate associations with chi-square tests between domains of DSP engagement and independent DSP variables. Analysis of variance and multivariable logistic regression were used to compare domains of DSP engagement with patient decision appraisal. RESULTS: In all, 2502 patients (68% response rate) and 1203 eligible DSPs (70% response rate) responded. Most DSPs were husbands/partners or daughters, were white, and were college graduates. Husbands/partners were more likely to be more informed, involved, and aware (all P values < .01). English- and Spanish-speaking Latinos had a higher extent of (P = .02) but lower satisfaction with involvement (P < .01). A highly informed DSP was associated with higher odds of patient-reported SDQ (odds ratio, 1.46; 95% confidence interval, 1.03-2.08; P = .03). A highly aware DSP was associated with higher odds of patient-reported deliberation (odds ratio, 1.83; 95% confidence interval, 1.36-2.47; P < .01). CONCLUSIONS: In this population-based study, informal DSPs were engaged with and positively contributed to patients' treatment decision making. To improve decision quality, future interventions should incorporate DSPs.

Disparities in genetic services utilization in a random sample of young breast cancer survivors.

PURPOSE: Increasing use of genetic services (counseling/testing) among young breast cancer survivors (YBCS) can help decrease breast cancer incidence and mortality. The study examined use of genetic services between Black and White/Other YBCS, attitudes and knowledge of breast cancer risk factors, and reasons for disparities in using genetic services. METHODS: We used baseline data from a randomized control trial including a population-based, stratified random sample of 3000 potentially eligible YBCS, with oversampling of Black YBCS. RESULTS: Among 883 YBCS (353 Black, 530 White/Other) were significant disparities between the two racial groups. More White/Other YBCS had received genetic counseling and had genetic testing than Blacks. Although White/Other YBCS resided farther away from board-certified genetic counseling centers, they had fewer barriers to access these services. Black race, high out-of-pocket costs, older age, and more years since diagnosis were negatively associated with use of genetic services. Black YBCS had lower knowledge of breast cancer risk factors. Higher education and genetic counseling were associated with higher genetic knowledge. CONCLUSION: Racial inequalities of cost-related access to care and education create disparities in genetic services utilization. System-based interventions that reduce socioeconomic disparities and empower YBCS with genetic knowledge, as well as physician referrals, can increase access to genetic services.

Surveillance for cancer recurrence in long-term young breast cancer survivors randomly selected from a statewide cancer registry.

PURPOSE: This study examined clinical breast exam (CBE) and mammography surveillance in long-term young breast cancer survivors (YBCS) and identified barriers and facilitators to cancer surveillance practices. METHODS: Data collected with a self-administered survey from a statewide, randomly selected sample of YBCS diagnosed with invasive breast cancer or ductal carcinoma in situ younger than 45 years old, stratified by race (Black vs. White/Other). Multivariate logistic regression models identified predictors of annual CBEs and mammograms. RESULTS: Among 859 YBCS (n = 340 Black; n = 519 White/Other; mean age = 51.0 ± 5.9; diagnosed 11.0 ± 4.0 years ago), the majority (> 85%) reported an annual CBE and a mammogram. Black YBCS in the study were more likely to report lower rates of annual mammography and more barriers accessing care compared to White/Other YBCS. Having a routine source of care, confidence to use healthcare services, perceived expectations from family members and healthcare providers to engage in cancer surveillance, and motivation to comply with these expectations were significant predictors of having annual CBEs and annual mammograms. Cost-related lack of access to care was a significant barrier to annual mammograms. CONCLUSIONS: Routine source of post-treatment care facilitated breast cancer surveillance above national average rates. Persistent disparities regarding access to mammography surveillance were identified for Black YBCS, primarily due to lack of access to routine source of care and high out-of-pocket costs. IMPLICATIONS: Public health action targeting cancer surveillance in YBCS should ensure routine source of post-treatment care and address cost-related barriers. Clinical Trials Registration Number: NCT01612338.

The association between patient attitudes and values and the strength of consideration for contralateral prophylactic mastectomy in a population-based sample of breast cancer patients.

BACKGROUND: Little is known about how the individual decision styles and values of breast cancer patients at the time of treatment decision making are associated with the consideration of different treatment options and specifically with the consideration of contralateral prophylactic mastectomy (CPM). METHODS: Newly diagnosed patients with early-stage breast cancer who were treated in 2013-2014 were identified through the Surveillance, Epidemiology, and End Results registries of Los Angeles and Georgia and were surveyed approximately 7 months after surgery (n = 2578; response rate, 71%). The primary outcome was the consideration of CPM (strong vs less strong). The association between patients' values and decision styles and strong consideration was assessed with multivariate logistic regression. RESULTS: Approximately one-quarter of women (25%) reported strong/very strong consideration of CPM, and another 29% considered it moderately/weakly. Decision styles, including a rational-intuitive approach to decision making, varied. The factors most valued by women at the time of treatment decision making were as follows: avoiding worry about recurrence (82%) and reducing the need for more surgery (73%). In a multivariate analysis, patients who preferred to make their own decisions, those who valued avoiding worry about recurrence, and those who valued avoiding radiation significantly more often strongly considered CPM (P < .05), whereas those who reported being more logical and those who valued keeping their breast did so less often. CONCLUSIONS: Many patients considered CPM, and the consideration was associated with both decision styles and values. The variability in decision styles and values observed in this study suggests that formally evaluating these characteristics at or before the initial treatment encounter could provide an opportunity for improving patient clinician discussions. Cancer 2017;123:4547-4555. © 2017 American Cancer Society.

Treatment decisions and employment of breast cancer patients: Results of a population-based survey.

BACKGROUND: Many patients with breast cancer work for pay at the time of their diagnosis, and the treatment plan may threaten their livelihood. Understanding work experiences in a contemporary population-based sample is necessary to inform initiatives to reduce the burden of cancer care. METHODS: Women who were 20 to 79 years old and had been diagnosed with stage 0 to II breast cancer, as reported to the Georgia and Los Angeles Surveillance, Epidemiology, and End Results registries in 2014-2015, were surveyed. Of the 3672 eligible women, 2502 responded (68%); 1006 who reported working before their diagnosis were analyzed. Multivariate models evaluated correlates of missing work for >1 month and stopping work altogether versus missing work for ≤1 month. RESULTS: In this diverse sample, most patients (62%) underwent lumpectomy; 16% underwent unilateral mastectomy (8% with reconstruction); and 23% underwent bilateral mastectomy (19% with reconstruction). One-third (33%) received chemotherapy. Most (84%) worked full-time before their diagnosis; however, only 50% had paid sick leave, 39% had disability benefits, and 38% had flexible work schedules. Surgical treatment was strongly correlated with missing >1 month of work (odds ratio [OR] for bilateral mastectomy with reconstruction vs lumpectomy, 7.8) and with stopping work altogether (OR for bilateral mastectomy with reconstruction vs lumpectomy, 3.1). Chemotherapy receipt (OR for missing >1 month, 1.3; OR for stopping work altogether, 3.9) and race (OR for missing >1 month for blacks vs whites, 2.0; OR for stopping work altogether for blacks vs whites, 1.7) also correlated. Those with paid sick leave were less likely to stop working (OR, 0.5), as were those with flexible schedules (OR, 0.3). CONCLUSIONS: Working patients who received more aggressive treatments were more likely to experience substantial employment disruptions. Cancer 2017;123:4791-9. © 2017 American Cancer Society.

Decision-support networks of women newly diagnosed with breast cancer.

BACKGROUND: Little is known about the size and characteristics of the decision-support networks of women newly diagnosed with breast cancer and whether their involvement improves breast cancer treatment decisions. METHODS: A population-based sample of patients newly diagnosed with breast cancer in 2014 and 2015, as reported to the Georgia and Los Angeles Surveillance, Epidemiology, and End Results registries, were surveyed approximately 7 months after diagnosis (N = 2502; response rate, 68%). Network size was estimated by asking women to list up to 3 of the most important decision-support persons (DSPs) who helped them with locoregional therapy decisions. Decision deliberation was measured using 4 items assessing the degree to which patients thought through the decision, with higher scores reflecting more deliberative breast cancer treatment decisions. The size of the network (range, 0-3 or more) was compared across patient-level characteristics, and adjusted mean deliberation scores were estimated across levels of network size using multivariable linear regression. RESULTS: Of the 2502 women included in this analysis, 51% reported having 3 or more DSPs, 20% reported 2, 18% reported 1, and 11% reported not having any DSPs. Married/partnered women, those younger than 45 years, and black women all were more likely to report larger network sizes (all P < .001). Larger support networks were associated with more deliberative surgical treatment decisions (P < .001). CONCLUSIONS: Most women engaged multiple DSPs in their treatment decision making, and involving more DSPs was associated with more deliberative treatment decisions. Future initiatives to improve treatment decision making among women with breast cancer should acknowledge and engage informal DSPs. Cancer 2017;123:3895-903. © 2017 American Cancer Society.

Treatment-associated toxicities reported by patients with early-stage invasive breast cancer.

BACKGROUND: Patient-reported toxicities help to appraise the breast cancer treatment experience. Yet extant data come from clinical trials and health care claims, which may be biased. Using patient surveys, the authors sought to quantify the frequency, severity, and burden of treatment-associated toxicities. METHODS: Between 2013 and 2014, the iCanCare study surveyed a population-based sample of women residing in Los Angeles County and Georgia with early-stage, invasive breast cancer. The authors assessed the frequency and severity of toxicities; correlated toxicity severity with unscheduled health care use (clinic visits, emergency department visits/hospitalizations) and physical health; and examined patient, tumor, and treatment factors associated with reporting increased toxicity severity. RESULTS: The overall survey response rate was 71%. From the analyzed cohort of 1945 women, 866 (45%) reported at least 1 toxicity that was severe/very severe, 9% reported unscheduled clinic visits for toxicity management, and 5% visited an emergency department or hospital. Factors associated with reporting higher toxicity severity included receipt of chemotherapy (odds ratio [OR], 2.2; 95% confidence interval [95% CI], 2.0-2.5), receipt of both chemotherapy and radiotherapy (OR, 1.3; 95% CI, 1.0-1.7), and Latina ethnicity (OR vs whites: 1.3; 95% CI, 1.1-1.5). A nonsignificant increase in at least 1 severe/very severe toxicity report was observed for bilateral mastectomy recipients (OR, 1.2; 95% CI, 1.0-1.4). CONCLUSIONS: Women with early-stage invasive breast cancer report substantial treatment-associated toxicities and related burden. Clinicians should collect toxicity data routinely and offer early intervention. Toxicity differences observed by treatment modality may inform decision making. Cancer 2017;123:1925-1934. © 2017 American Cancer Society.

Treatment experiences of Latinas after diagnosis of breast cancer.

BACKGROUND: The authors examined racial/ethnic differences in patient perspectives regarding their breast cancer treatment experiences. METHODS: A weighted random sample of women newly diagnosed with breast cancer between 2013 and 2015 in Los Angeles County and Georgia were sent surveys 2 months after undergoing surgery (5080 women; 70% response rate). The analytic sample was limited to patients residing in Los Angeles County (2397 women). RESULTS: The pattern of visits with different specialists before surgery was found to be similar across racial/ethnic groups. Low acculturated Latinas (Latinas-LA) were less likely to report high clinician communication quality for both surgeons and medical oncologists (<69% vs >72% for all other groups; P<.05). The percentage of patients who reported high satisfaction regarding how physicians worked together was similar across racial/ethnic groups. Latinas-LA were more likely to have a low autonomy decision style (48% vs 24%-50% for all other groups; P<.001) and were more likely to report receiving too much information versus other ethnic groups (20% vs <16% for other groups; P<.001). Patients who reported a low autonomy decision style were more likely to rate the amount of information they received for the surgery decision as "too much" (16% vs 9%; P<.001). CONCLUSIONS: There appears to be moderate disparity in breast cancer treatment communication and decision-making experiences reported by Latinas-LA versus other groups. The approach to treatment decision making by Latinas-LA represents an important challenge to health care providers. Initiatives are needed to improve patient engagement in decision making and increase clinician awareness of these challenges in this patient population. Cancer 2017;123:3022-30. © 2017 American Cancer Society.

The impact of doctor-patient communication on patients' perceptions of their risk of breast cancer recurrence.

PURPOSE: Doctor-patient communication is the primary way for women diagnosed with breast cancer to learn about their risk of distant recurrence. Yet little is known about how doctors approach these discussions. METHODS: A weighted random sample of newly diagnosed early-stage breast cancer patients identified through SEER registries of Los Angeles and Georgia (2013-2015) was sent surveys about ~2 months after surgery (Phase 2, N = 3930, RR 68%). We assessed patient perceptions of doctor communication of risk of recurrence (i.e., amount, approach, inquiry about worry). Clinically determined 10-year risk of distant recurrence was established for low and intermediate invasive cancer patients. Women's perceived risk of distant recurrence (0-100%) was categorized into subgroups: overestimation, reasonably accurate, and zero risk. Understanding of risk and patient factors (e.g. health literacy, numeracy, and anxiety/worry) on physician communication outcomes was evaluated in multivariable regression models (analytic sample for substudy = 1295). RESULTS: About 33% of women reported that doctors discussed risk of recurrence as "quite a bit" or "a lot," while 14% said "not at all." Over half of women reported that doctors used words and numbers to describe risk, while 24% used only words. Overestimators (OR .50, CI 0.31-0.81) or those who perceived zero risk (OR .46, CI 0.29-0.72) more often said that their doctor did not discuss risk. Patients with low numeracy reported less discussion. Over 60% reported that their doctor almost never inquired about worry. CONCLUSIONS: Effective doctor-patient communication is critical to patient understanding of risk of recurrence. Efforts to enhance physicians' ability to engage in individualized communication around risk are needed.

Recurrence risk perception and quality of life following treatment of breast cancer.

PURPOSE: Little is known about different ways of assessing risk of distant recurrence following cancer treatment (e.g., numeric or descriptive). We sought to evaluate the association between overestimation of risk of distant recurrence of breast cancer and key patient-reported outcomes, including quality of life and worry. METHODS: We surveyed a weighted random sample of newly diagnosed patients with early-stage breast cancer identified through SEER registries of Los Angeles County & Georgia (2013-14) ~2 months after surgery (N = 2578, RR = 71%). Actual 10-year risk of distant recurrence after treatment was based on clinical factors for women with DCIS & low-risk invasive cancer (Stg 1A, ER+, HER2-, Gr 1-2). Women reported perceptions of their risk numerically (0-100%), with values ≥10% for DCIS & ≥20% for invasive considered overestimates. Perceptions of "moderate, high or very high" risk were considered descriptive overestimates. In our analytic sample (N = 927), we assessed factors correlated with both types of overestimation and report multivariable associations between overestimation and QoL (PROMIS physical & mental health) and frequent worry. RESULTS: 30.4% of women substantially overestimated their risk of distant recurrence numerically and 14.7% descriptively. Few factors other than family history were significantly associated with either type of overestimation. Both types of overestimation were significantly associated with frequent worry, and lower QoL. CONCLUSIONS: Ensuring understanding of systemic recurrence risk, particularly among patients with favorable prognosis, is important. Better risk communication by clinicians may translate to better risk comprehension among patients and to improvements in QoL.

Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry: a methodological study.

PURPOSE: Cancer genetic services (counseling/testing) are recommended for women diagnosed with breast cancer younger than 45 years old (young breast cancer survivors-YBCS) and at-risk relatives. We present recruitment of YBCS, identification and recruitment of at-risk relatives, and YBCS willingness to contact their cancer-free, female relatives. METHODS: A random sample of 3,000 YBCS, stratified by race (Black vs. White/Other), was identified through a population-based cancer registry and recruited in a randomized trial designed to increase use of cancer genetic services. Baseline demographic, clinical, and family characteristics, and variables associated with the Theory of Planned Behavior (TPB) were assessed as predictors of YBCS' willingness to contact at-risk relatives. RESULTS: The 883 YBCS (33.2% response rate; 40% Black) who returned a survey had 1,875 at-risk relatives and were willing to contact 1,360 (72.5%). From 853 invited at-risk relatives (up to two relatives per YBCS), 442 responded (51.6% response rate). YBCS with larger families, with a previous diagnosis of depression, and motivated to comply with recommendations from family members were likely to contact a greater number of relatives. Black YBCS were more likely to contact younger relatives and those living further than 50 miles compared to White/Other YBCS. CONCLUSION: It is feasible to recruit diverse families at risk for hereditary cancer from a population-based cancer registry. This recruitment approach can be used as a paradigm for harmonizing processes and increasing internal and external validity of large-scale public health genomic initiatives in the era of precision medicine.

Binocular Measures of Visual Acuity and Visual Field versus Binocular Approximations.

PURPOSE: To assess the relationship of binocular visual function tests with binocular approximations using data from the Collaborative Initial Glaucoma Treatment Study (CIGTS). DESIGN: Case series based on existing data from a clinical trial. PARTICIPANTS: Six hundred seven patients with newly diagnosed open-angle glaucoma from the CIGTS. METHODS: Monocular visual field (VF) and visual acuity (VA) tests were performed at baseline and every 6 months thereafter. Binocular tests of visual function (Esterman VF score, binocular VA) were added to the CIGTS protocol 3 years into the study. The binocular approximations of binocular visual function were better or worse eye, average eye, better or worse location, and binocular summation or pointwise binocular summation. Associations between binocular tests and binocular approximations to represent binocular visual function were assessed with Pearson's correlations (r), as was the relationship between vision-related quality of life (VR QOL; Visual Activities Questionnaire [VAQ] and the 25-item National Eye Institute Visual Function Questionnaire [NEI VFQ-25]) and binocular tests or binocular approximations of visual function. MAIN OUTCOME MEASURES: Binocular visual function (VF and VA) and VR QOL. RESULTS: Five hundred seventy-five patients underwent at least 1 binocular visual function test. The Esterman score was correlated significantly with all binocular approximations of VF, with r values ranging from 0.31 (worse-eye mean deviation [MD]) to 0.42 (better-eye MD; P < 0.0001 for all). Binocular VA showed stronger correlations with binocular approximations, with r values ranging from 0.65 (worse-eye VA) to 0.80 (binocular summation; P < 0.0001 for all). Correlations between the VAQ and Esterman score were stronger in 7 of 9 subscales (r = -0.14 to -0.25; P < 0.05 for all) than correlations with all 7 binocular approximations. In contrast, correlations between the VAQ and binocular VA (r = -0.07 to -0.21) were weaker in all subscales than those with better-eye, average-eye, and binocular summation of VA (r = -0.12 to -0.25), but not different from worse-eye values. These trends also were found in relevant subscales of the NEI VFQ-25. CONCLUSIONS: We found limited benefit in binocular testing of VA in the clinical setting as a means of approximating a patient's reported visual functioning. In contrast, we found some benefit in performing binocular VF testing, because the results correlated more closely with reported functioning than binocular approximations.

The relationship between illness representations, risk perception and fear of cancer recurrence in breast cancer survivors.

OBJECTIVE: Fear of cancer recurrence, although distinct from distress continues to be under-evaluated, captured, or treated when standard distress scales are used to assess concerns of cancer survivors. We tested a model assessing the association of demographic and clinical factors, illness representations, and perceived risk with fear of cancer recurrence in breast cancer survivors. METHODS: We recruited 117 breast cancer survivors at least one year after completing breast cancer treatment from Internet discussion boards for this cross-sectional, descriptive, correlational study. Participants completed a survey that assessed their level of fear of cancer recurrence as well as their illness representations, perceived risk of recurrence, and demographic and medical characteristics. RESULTS: Our model explained 62% of the variance in fear of cancer recurrence. Emotional representations (ß = .46, p < .01), symptom attribution (ß = .21, p < .01), timeline (ß = .23, p < .01), and consequences (ß = .16, p < .03) were significantly related to fear of recurrence. By contrast, the majority of clinical and demographic variables were not significant contributors to fear of recurrence. CONCLUSIONS: Upon completion of cancer treatment, survivors with more emotional representations of the experience and those who attribute unrelated symptoms to their breast cancer have a higher level of fear of recurrence. Evaluation of these factors during treatment may help mitigate fear of recurrence in the survivorship phase of the breast cancer trajectory. Copyright © 2016 John Wiley & Sons, Ltd.

Meaning-based coping, chronic conditions and quality of life in advanced cancer & caregiving.

OBJECTIVE: This study examined the relationship between the number of co-existing health problems (patient comorbidities and caregiver chronic conditions) and quality of life (QOL) among patients with advanced cancer and their caregivers and assessed the mediating and moderating role of meaning-based coping on that relationship. METHODS: Data came from patients with advanced cancers (breast, colorectal, lung, and prostate) and their family caregivers (N = 484 dyads). Study hypotheses were examined with structural equation modeling using the actor-partner interdependence mediation model. Bootstrapping and model constraints were used to test indirect effects suggested by the mediation models. An interaction term was added to the standard actor-partner interdependence model to test for moderation effects. RESULTS: More patient comorbidities were associated with lower patient QOL. More caregiver chronic conditions were associated with lower patient and caregiver QOL. Patient comorbidities and caregiver chronic conditions had a negative influence on caregiver meaning-based coping but no significant influence on patient meaning based coping. Caregiver meaning-based coping mediated relationships between patient comorbidities and caregiver health conditions and patient and caregiver QOL. No significant moderating effects were observed. CONCLUSIONS: Despite the severity of advanced cancer for patients and caregivers, the co-existing health problems of one member of the dyad have the potential to directly or indirectly affect the wellbeing of the other. Future research should consider how the number of patient comorbidities and caregiver chronic conditions, as well as the ability of patients and caregivers to manage those conditions, influences their meaning-based coping and wellbeing. Copyright © 2016 John Wiley & Sons, Ltd.

Functional status and quality of life among breast cancer survivors with heart failure: results of the Medicare Health Outcomes Survey.

PURPOSE: The purpose of this population-based study was to examine health-related quality of life (HRQOL) and functional status among breast cancer survivors with heart failure. METHODS: We examined Medicare Health Outcomes Survey data from women aged 65 and older diagnosed with breast cancer in the past 5 years. Surveys were linked to Surveillance, Epidemiology, and End Results cancer registries. Each woman identified with self-reported heart failure (n = 239) was matched to controls without heart failure (n = 685) using propensity scores. The Short Form-36/Veterans Rand-12 measured eight domains of HRQOL. Functional status impairment was measured by limitations in six activities of daily living (ADLs). Linear models estimated associations between heart failure status and HRQOL. Logistic regression models estimated odds ratios for associations between heart failure and ADL impairment. We examined associations for the total study population and subgroups stratified by cancer stage. RESULTS: Among all study participants, heart failure was associated with significant deficits in every HRQOL domain and impairment in all ADLs (p < 0.01, ORs ranged from 1.74 to 2.47). After stratification by cancer stage, heart failure was associated with physical HRQOL deficits across all cancer stages (physical function, vitality, general health) and mental HRQOL deficits only in women with stage I/II cancer (role-emotional, social function). Women with early stage cancer experienced the greatest HRQOL deficits associated with heart failure. CONCLUSIONS: Heart failure in breast cancer survivors is associated with substantial HRQOL deficits and functional status impairment, particularly in early stage cancer. Tailored interventions are needed to improve physical function and mental wellbeing in this high-risk population.

The influence of dyadic symptom distress on threat appraisals and self-efficacy in advanced cancer and caregiving.

PURPOSE: Physical and psychological symptoms experienced by patients with advanced cancer influence their well-being; how patient and family caregiver symptom distress influence each other's well-being is less understood. This study examined the influence of patient and caregiver symptom distress on their threat appraisals and self-efficacy to cope with cancer. METHODS: We conducted a secondary analysis of baseline data from an RCT that enrolled patients with advanced cancer and their family caregivers (N = 484 dyads). Structural equation modeling and the actor-partner interdependence mediation model (APIMeM) were used to examine two models: threat appraisals as a mediator of the relationship between symptom distress and individual and family-related self-efficacy; and, self-efficacy (individual and family dimensions) as mediators of the relationship between symptom distress and threat appraisals. RESULTS: Data suggest the self-efficacy mediation model was the preferred model. More patient and caregiver symptom distress was directly associated with their own lower self-efficacy and more threatening appraisals. Patient and caregiver individual self-efficacy also mediated the relationship between their own symptom distress and threat appraisals. There were also significant interdependent effects. More patient symptom distress was associated with less caregiver family-related self-efficacy, and more caregiver symptom distress was directly associated with more threatening patient appraisals. CONCLUSIONS: Patient and caregiver symptom distress influenced their own and in some cases each other's cognitive appraisals. Limitations of this study include the use of cross-sectional data and assessments of individually-focused (vs. family-focused) threat appraisals. These findings highlight the need to consider the management of patient and caregiver symptoms during advanced cancer.

Engagement in health-promoting behaviors and patient-caregiver interdependence in dyads facing advanced cancer: an exploratory study.

Diet and exercise are important for the wellbeing of people with cancer and their family caregivers. Unfortunately, little is known about their behaviors over time or factors that may influence their engagement in these behaviors. This exploratory study examined the influence of chronic conditions, symptom distress, and perceived social support on exercise and diet behaviors of patients with advanced cancer and their caregivers using the actor-partner interdependence mediation model (APIMeM) and interdependence theory as guiding frameworks. This secondary analysis uses self-report data from a large RCT (N = 484 patient-caregiver dyads) at three time points: baseline data was collected within three months of the diagnosis, at 3 months post-baseline, and 6 months post-baseline. A number of actor effects were observed: patient and caregiver prior exercise and diet were significant predictors of their own future exercise and diet behaviors; more patient-reported social support was associated with less patient exercise; more patient symptom distress was associated with poorer patient diet; and, more caregiver-reported social support was associated with more caregiver exercise and better caregiver diet. Partner effects were also observed: more patient exercise was positively associated with more caregiver exercise; more patient comorbidities were associated with better caregiver diet; more caregiver-reported social support was associated with better patient diet; and, more patient-reported social support was associated with better caregiver diet. Despite the challenges of advanced cancer and caregiving, past exercise and diet behavior remained a significant predictor of future behavior. Other health problems and perceptions of social support within the dyad may exert a positive or negative influence on patient/caregiver diet and exercise.

Worry about recurrence in a multi-ethnic population of breast cancer survivors and their partners.

PURPOSE: The objectives of this study are to describe racial/ethnic differences and clinical/treatment correlates of worry about recurrence and examine modifiable factors in the health care experience to reduce worry among breast cancer survivors, partners, and pairs. METHODS: Women with non-metastatic breast cancer identified by the Detroit and Los Angeles SEER registries between 6/05 and 2/07 were surveyed at 9 months and 4 years. Latina and Black women were oversampled. Partners were surveyed at time 2. Worry about recurrence was regressed on sociodemographics, clinical/treatment, and modifiable factors (e.g., emotional support received by providers) among survivors, partners, and pairs. RESULTS: The final sample included 510 pairs. Partners reported more worry about recurrence than survivors. Compared to Whites, Latinas(os) were more likely to report worry and Blacks were less likely to report worry (all p < 0.05). Partners of survivors who received chemotherapy reported more worry (OR = 2.47 [1.45, 4.22]). Among modifiable factors, survivors and pairs who received more emotional support from providers were less likely to report worry than those survivors and pairs who did not receive such support (OR = 0.56 [0.32, 0.97]) and (OR = 0.45 [0.23,0.85]), respectively. CONCLUSIONS: Early identification of survivors and partners who are reporting considerable worry about recurrence can lead to targeted culturally sensitive interventions to avoid poorer outcomes. Interventions focused on health care providers offering information on risk and emotional support to survivors and partners is warranted.

Sexual Health Concerns Among Cancer Survivors: Testing a Novel Information-Need Measure Among Breast and Prostate Cancer Patients.

While it is recognized that cancer treatment can contribute to problems in sexual function, much less is currently known about the specific sexual health concerns and information needs of cancer survivors. This study tested a new instrument to measure cancer survivors' sexual health concerns and needs for sexual information after cancer treatment. The Information on Sexual Health: Your Needs after Cancer (InSYNC), developed by a multidisciplinary team of experts, is a novel 12-item questionnaire to measure sexual health concerns and information needs of cancer survivors. We tested the measure with a sample of breast and prostate cancer survivors. A convenience sample of 114 cancer survivors (58 breast, 56 prostate) was enrolled. Results of the InSYNC questionnaire showed high levels of sexual concern among cancer survivors. Areas of concern differed by cancer type. Prostate cancer survivors were most concerned about being able to satisfy their partners (57 %) while breast cancer survivors were most concerned with changes in how their bodies worked sexually (46 %). Approximately 35 % of all cancer survivors wanted more information about sexual health. Sexual health concerns and unmet information needs are common among breast and prostate cancer survivors, varying in some aspects by type of cancer. Routine screening for sexual health concerns should be included in comprehensive cancer survivorship care to appropriately address health care needs. The InSYNC questionnaire is one tool that may help clinicians identify concerns facing their patients.