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We compared a tailored and a targeted intervention designed to increase genetic testing, clinical breast exam (CBE), and mammography in young breast cancer survivors (YBCS) (diagnosed <45 years old) and their blood relatives. A two-arm cluster randomized trial recruited a random sample of YBCS from the Michigan cancer registry and up to two of their blood relatives. Participants were stratified according to race and randomly assigned as family units to the tailored (n = 637) or the targeted (n = 595) intervention. Approximately 40% of participants were Black. Based on intention-to-treat analyses, YBCS in the tailored arm reported higher self-efficacy for genetic services (p = 0.0205) at 8-months follow-up. Genetic testing increased approximately 5% for YBCS in the tailored and the targeted arm (p ≤ 0.001; p < 0.001) and for Black and White/Other YBCS (p < 0.001; p < 0.001). CBEs and mammograms increased significantly in both arms, 5% for YBCS and 10% for relatives and were similar for Blacks and White/Others. YBCS and relatives needing less support from providers reported significantly higher self-efficacy and intention for genetic testing and surveillance. Black participants reported significantly higher satisfaction and acceptability. Effects of these two low-resource interventions were comparable to previous studies. Materials are suitable for Black women at risk for hereditary breast/ovarian cancer (HBOC).
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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.
Subject(s)
Antihypertensive Agents/therapeutic use , Glaucoma, Open-Angle/drug therapy , Medication Adherence/statistics & numerical data , Trabeculectomy , Vision Disorders/diagnosis , Visual Fields/physiology , Adult , Aged , Disease Progression , Female , Follow-Up Studies , Glaucoma, Open-Angle/physiopathology , Humans , Intraocular Pressure/physiology , Male , Middle Aged , Retrospective Studies , Tonometry, Ocular , Vision Disorders/physiopathology , Visual Acuity/physiology , Visual Field TestsABSTRACT
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.
Subject(s)
Breast Neoplasms/therapy , Decision Making, Shared , Decision Support Techniques , Registries , Surveys and Questionnaires , Adult , Age Factors , Aged , Breast Neoplasms/diagnosis , Cohort Studies , Confidence Intervals , Female , Georgia , Hispanic or Latino/statistics & numerical data , Humans , Logistic Models , Los Angeles , Middle Aged , Odds Ratio , Risk Assessment , Socioeconomic Factors , White People/statistics & numerical dataABSTRACT
PURPOSE: To characterize longitudinal trends and factors predictive of depressive symptoms following glaucoma diagnosis in Collaborative Initial Glaucoma Treatment Study (CIGTS) participants. DESIGN: Cohort study using follow-up data from a clinical trial. METHODS: A total of 607 participants with newly diagnosed open-angle glaucoma were enrolled at 14 clinical centers in the United States from October 1993 through April 1997, randomized to treatment with medication or surgery, and followed every 6 months through 2004. The 8-item Center for Epidemiologic Studies Depression Scale (CES-D) was administered at baseline and follow-up visits. Three outcome measures were investigated: overall CES-D depression score, presence of mild or worse depression (CES-D score ≥ 7), and number of depressive symptoms endorsed. RESULTS: The average baseline CES-D score was 2.4 (SD = 3.8), 12.5% of subjects reported symptoms associated with mild or worse depression, and 55.3% reported at least 1 depressive symptom. By 1 year posttreatment, depression measures decreased (1.5, 6.7%, and 38.4%, respectively), with modest decreases thereafter. Baseline factors predictive of mild or worse depression included worse vision-related quality of life (VRQOL) (odds ratio [OR] = 2.41), female sex (OR = 1.42), younger age (OR per 10 years younger = 1.24), and less than high school education (OR = 2.93); other outcomes showed similar results. CONCLUSIONS: Depressive symptoms decreased considerably during the first year after treatment initiation, but were elevated in those with impaired VRQOL. Given the potential of depression to reduce treatment adherence and thus increase the risk of glaucoma progression, eye care providers should ask patients about depressive symptoms, provide reassurance when appropriate, and make referrals as necessary.
Subject(s)
Depressive Disorder/etiology , Glaucoma, Open-Angle/psychology , Adult , Age Factors , Aged , Female , Humans , Logistic Models , Longitudinal Studies , Male , Middle Aged , Quality of Life , Risk Factors , Sex FactorsABSTRACT
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.
Subject(s)
Breast Neoplasms/genetics , Facilities and Services Utilization/trends , Health Knowledge, Attitudes, Practice/ethnology , Adult , Black People/genetics , Breast Neoplasms/psychology , Cancer Survivors , Ethnicity , Female , Genetic Counseling , Genetic Services , Genetic Testing/methods , Genetic Testing/standards , Humans , Race Factors , Socioeconomic Factors , White People/geneticsABSTRACT
Purpose This study was conducted to determine the effect of iCanDecide, an interactive and tailored breast cancer treatment decision tool, on the rate of high-quality patient decisions-both informed and values concordant-regarding locoregional breast cancer treatment and on patient appraisal of decision making. Methods We conducted a randomized clinical trial of newly diagnosed patients with early-stage breast cancer making locoregional treatment decisions. From 22 surgical practices, 537 patients were recruited and randomly assigned online to the iCanDecide interactive and tailored Web site (intervention) or the iCanDecide static Web site (control). Participants completed a baseline survey and were mailed a follow-up survey 4 to 5 weeks after enrollment to assess the primary outcome of a high-quality decision, which consisted of two components, high knowledge and values-concordant treatment, and secondary outcomes (decision preparation, deliberation, and subjective decision quality). Results Patients in the intervention arm had higher odds of making a high-quality decision than did those in the control arm (odds ratio, 2.00; 95% CI, 1.37 to 2.92; P = .0004), which was driven primarily by differences in the rates of high knowledge between groups. The majority of patients in both arms made values-concordant treatment decisions (78.6% in the intervention arm and 81.4% in the control arm). More patients in the intervention arm had high decision preparation (estimate, 0.18; 95% CI, 0.02 to 0.34; P = .027), but there were no significant differences in the other decision appraisal outcomes. The effect of the intervention was similar for women who were leaning strongly toward a treatment option at enrollment compared with those who were not. Conclusion The tailored and interactive iCanDecide Web site, which focused on knowledge building and values clarification, positively affected high-quality decisions largely by improving knowledge compared with static online information. To be effective, future patient-facing decision tools should be integrated into the clinical workflow to improve decision making.
Subject(s)
Breast Neoplasms/surgery , Decision Making , Adult , Aged , Aged, 80 and over , Female , Humans , Middle AgedABSTRACT
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.
Subject(s)
Breast Neoplasms/diagnosis , Carcinoma, Intraductal, Noninfiltrating/diagnosis , Mammography , Neoplasm Recurrence, Local/diagnosis , Aged , Breast/diagnostic imaging , Breast/pathology , Breast Neoplasms/epidemiology , Breast Neoplasms/pathology , Cancer Survivors , Carcinoma, Intraductal, Noninfiltrating/epidemiology , Carcinoma, Intraductal, Noninfiltrating/pathology , Female , Humans , Middle Aged , Neoplasm Recurrence, Local/epidemiology , Neoplasm Recurrence, Local/pathology , Registries , White PeopleABSTRACT
BACKGROUND: Breast cancer patients' misunderstanding of their systemic cancer recurrence risk has consequences on decision-making and quality of life. Little is known about how women derive their risk estimates. METHODS: Using Los Angeles and Georgia's SEER registries (2014-2015), a random sample of early-stage breast cancer patients was sent surveys about 2 to 3 months after surgery ( N = 3930; RR, 68%). We conducted an inductive thematic analysis of open-ended responses about why women chose their risk estimates in a uniquely large sub-sample ( N = 1,754). Clinician estimates of systemic recurrence risk were provided for patient sub-groups with DCIS and with low-, intermediate-, and high-risk invasive disease. Women's perceived risk of systemic recurrence (0% to 100%) was categorized as overestimation, reasonably accurate estimation, or underestimation (0% for invasive disease) and was compared across identified factors and by clinical presentation. RESULTS: Women identified 9 main factors related to their clinical experience (e.g., diagnosis and testing; treatment) and non-clinical beliefs (e.g., uncertainty; spirituality). Women who mentioned at least one clinical experience factor were significantly less likely to overestimate their risk (12% v. 43%, P < 0.001). Most women who were influenced by "communication with a clinician" had reasonably accurate recurrence estimates (68%). "Uncertainty" and "family and personal history" were associated with overestimation, particularly for women with DCIS (75%; 84%). "Spirituality, religion, and faith" was associated with an underestimation of risk (63% v. 20%, P < 0.001). LIMITATIONS: The quantification of our qualitative results is subject to any biases that may have occurred during the coding process despite rigorous methodology. CONCLUSIONS: Patient-clinician communication is important for breast cancer patients' understanding of their numeric risk of systemic recurrence. Clinician discussions about recurrence risk should address uncertainty and relevance of family and personal history.
Subject(s)
Breast Neoplasms/pathology , Breast Neoplasms/psychology , Neoplasm Recurrence, Local/psychology , Perception , Adult , Aged , Communication , Decision Making , Female , Humans , Middle Aged , Physician-Patient Relations , Risk Assessment , SEER Program , Spirituality , Uncertainty , Young AdultABSTRACT
Objectives: To evaluate the association between heart failure and overall survival up to 10 years after breast cancer diagnosis. Sample & Setting: Women aged 65 years or older diagnosed with invasive breast cancer, with and without self-reported heart failure, were examined for this retrospective cohort study using Surveillance, Epidemiology, and End Results cancer registries in the United States. Methods & Variables: Cox proportional hazards regression was used to examine the association between heart failure status and mortality, adjusting for comorbidity and other clinical or sociodemographic differences. Associations were examined overall and stratified by cancer stage. Results: In adjusted models, having heart failure was associated with increased likelihood of death up to 10 years after cancer diagnosis. In adjusted subanalyses by cancer stage, heart failure was associated with increased likelihood of death up to 10 years after cancer diagnosis in women with stage I or II cancer but not in women with stage III/IV cancer. Implications for Nursing: Although early-stage breast cancer is generally associated with better prognosis, the competing mortality risk of heart failure was greater for this group than for women with advanced cancer. Prevention and management of cardiovascular disease should be prioritized for this patient subgroup.
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Importance: Administration of a brief questionnaire to evaluate glaucoma symptoms would lend useful information for patient care. Objectives: To develop a shortened glaucoma symptom measure based on the Collaborative Initial Glaucoma Treatment Study (CIGTS) Symptom and Health Problem Checklist (SHPC) and evaluate its psychometric properties. Design, Setting, and Participants: This measure development study evaluated the factor structure of the 43-item SHPC that was obtained from CIGTS participants at baseline and every 6 months thereafter. These 607 participants were enrolled at 14 clinical centers in the United States and had newly diagnosed open-angle glaucoma. Their mean deviation (SD) from visual field testing was −5.5 (4.3) dB. Data were collected from October 1993 through April 1997. Main Outcomes and Measures: The factor structure of the SHPC, confirmatory factor analysis of the resulting 18-item questionnaire (SHPC-18), the reliability of the SHPC-18, and associations of the 2 symptom subscales (Local Eye and Visual Function) of the SHPC-18 with visual field severity and 25-item National Eye Institute Visual Function Questionnaire (NEI-VFQ25) subscales. Results: Among the 607 participants (mean [SD] age at enrollment, 57.5 [10.9] years), 334 (55.0%) were men and 273 (45.0%) were women; 231 (38.1%) were African American. Exploratory factor analysis and longitudinal growth modeling documented Local Eye and Visual Function symptom subscales. Cronbach α values for mean weighted internal consistency were 0.83 and 0.89 for the Local Eye and Visual Function subscales, respectively, and remained stable over time. Scores on each subscale significantly correlated with the NEI-VFQ25 total score (r = −0.41 and r = −0.59, respectively) and with all subscale scores (P < .01). Participants with more severe glaucoma had higher (worse) mean (SD) scores than those with mild glaucoma at baseline on the Local Eye (4.68 [6.62] vs 3.07 [5.60]) and Visual Function (8.44 [11.45] vs 4.42 [8.94]; P < .05) SHPC-18 subscales. Participants who underwent trabeculectomy reported a higher frequency of any Local Eye symptoms than those treated with topical medications (eg, at 12 months, 153 of 269 [56.9%] vs 11 of 276 [40.9%]; P < .001). Conclusions and Relevance: These results suggest that the SHPC-18 is a reliable, responsive, and psychometrically sound measure of patient-reported, glaucoma-related symptoms. The measure is responsive to treatment and discriminates the severity of glaucoma. This shorter version of the original SHPC measure may be useful in clinical and research settings to better understand the influence of glaucoma symptoms on patients' daily life.
Subject(s)
Antihypertensive Agents/therapeutic use , Glaucoma, Open-Angle/diagnosis , Sickness Impact Profile , Trabeculectomy/methods , Adult , Aged , Checklist/methods , Female , Glaucoma, Open-Angle/physiopathology , Glaucoma, Open-Angle/therapy , Humans , Intraocular Pressure/physiology , Male , Middle Aged , National Eye Institute (U.S.) , Psychometrics , Quality of Life , Reproducibility of Results , Surveys and Questionnaires , United States , Visual Acuity/physiology , Visual Field Tests , Visual Fields/physiologyABSTRACT
Young adult sexual minority women (YSMW) are at elevated risk for negative reproductive health outcomes, yet are less likely than heterosexual peers to utilize preventive health care. Medical and public health policy organizations advocate sexual orientation disclosure ("coming out") to health care providers as a strategy for increasing service utilization among YSMW. Limited research explores relationships between disclosure and receipt of sexual health services. YSMW (N=285) ages 21-24 participated in an online survey assessing their health behaviors and care utilization. We employed multivariable logistic regression models to examine the association between receipt of sexual health services and sexual orientation disclosure to provider, after adjusting for sociodemographic covariates. Thirty-five percent of YSMW were out to their provider. Less than half the sample had received Pap screening or STI testing in the previous year; approximately 15% had received at least one dose of the HPV vaccination. Disclosure was associated with increased likelihood of Pap screening (OR=2.66, p<.001) and HPV vaccination (OR=4.30, p<.001), but was not significantly associated with STI testing. Promoting coming out to providers may be a promising approach to increase sexual health care use among YSMW. Future research should explore causal relationships between these factors.
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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.
Subject(s)
Absenteeism , Breast Neoplasms/therapy , Decision Making , Employment/statistics & numerical data , Return to Work/statistics & numerical data , Adult , Aged , Breast Neoplasms/diagnosis , Breast Neoplasms/epidemiology , Chemotherapy, Adjuvant , Cross-Sectional Studies , Female , Georgia , Humans , Los Angeles , Mastectomy/methods , Middle Aged , Multivariate Analysis , Odds Ratio , Patient Preference , Radiotherapy, Adjuvant , SEER Program , Young AdultABSTRACT
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.
Subject(s)
Breast Neoplasms/prevention & control , Decision Making , Health Knowledge, Attitudes, Practice , Prophylactic Mastectomy/psychology , Women/psychology , Adult , Aged , Breast Neoplasms/epidemiology , Breast Neoplasms/psychology , Breast Neoplasms/surgery , Female , Follow-Up Studies , Humans , Insurance, Health , Middle Aged , Neoplasm Staging , Prognosis , SEER Program , Surveys and Questionnaires , United States/epidemiology , Young AdultABSTRACT
PURPOSE: To establish validity for the Pelvic Floor Disorders Network (PFDN) self-administered Adaptive Behavior Index (ABI) and to assess whether ABI assesses known discordance between severity of pelvic floor symptoms and self-reported bother. METHODS: In addition to the ABI questionnaire, participants in 1 of 6 Pelvic Floor Disorders Network trials completed condition-specific measures of pretreatment symptom severity (including Pelvic Floor Distress Inventory; PFDI) and health-related quality of life (Pelvic Floor Impact Questionnaire; PFIQ). The final survey was developed from an iterative process using subject and expert endorsement, factor analyses, and response distributions. Domains were created using a development cohort (n = 304 women), reliability and validity were established using a validation cohort (n = 596 women), and test-retest reliability was assessed (n = 111 women). RESULTS: Factor analyses supported an 11-item avoidance domain and a 6-item hygiene domain. Cronbach' alphas were 0.88 and 0.68, respectively. Test-retest reliability was 0.84 for both domains. Construct validity was demonstrated in correlations between the ABI domains and baseline PFDI and PFIQ (r values, 0.43-0.79 with all P values <0.0001). Moreover, the ABI accounted for 8% to 26% of unexplained variance between the symptoms severity measure and the impact on health related quality of life. After treatment, avoidance domain scores improved for urinary and fecal incontinence groups and hygiene scores improved for the fecal incontinence group. CONCLUSIONS: The ABI is a reliable and valid measure in women with pelvic floor disorders. Adaptive behaviors account in part for discordance between pelvic floor symptom severity and bother.
Subject(s)
Adaptation, Psychological , Health Surveys/methods , Pelvic Floor Disorders/psychology , Quality of Life , Adult , Aged , Aged, 80 and over , Cohort Studies , Factor Analysis, Statistical , Fecal Incontinence/psychology , Female , Humans , Middle Aged , Pelvic Organ Prolapse/psychology , Reproducibility of Results , Severity of Illness Index , Urinary Incontinence/psychology , Young AdultABSTRACT
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.
Subject(s)
Breast Neoplasms/therapy , Decision Making , Social Support , Adult , Black or African American , Age Factors , Aged , Female , Georgia , Humans , Linear Models , Los Angeles , Marital Status , Middle Aged , Multivariate Analysis , SEER Program , Surveys and QuestionnairesABSTRACT
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.
Subject(s)
Acculturation , Attitude to Health , Breast Neoplasms/therapy , Healthcare Disparities/ethnology , Hispanic or Latino , Oncologists , Physician-Patient Relations , Surgeons , Adult , Black or African American , Aged , Asian , Chemotherapy, Adjuvant , Communication , Decision Making , Female , Health Literacy , Humans , Los Angeles , Mastectomy , Mastectomy, Segmental , Middle Aged , Patient Satisfaction , Personal Autonomy , Radiotherapy, Adjuvant , White People , Young AdultABSTRACT
Importance: Guidelines assert that contralateral prophylactic mastectomy (CPM) should be discouraged in patients without an elevated risk for a second primary breast cancer. However, little is known about the impact of surgeons discouraging CPM on patient care satisfaction or decisions to seek treatment from another clinician. Objective: To examine the association between patient report of first-surgeon recommendation against CPM and the extent of discussion about it with 3 outcomes: patient satisfaction with surgery decisions, receipt of a second opinion, and receipt of surgery by a second surgeon. Design, Setting, and Participants: This population-based survey study was conducted in Georgia and California. We identified 3880 women with stages 0 to II breast cancer treated in 2013-2014 through the Surveillance, Epidemiology, and End Results registries of Georgia and Los Angeles County. Surveys were sent approximately 2 months after surgery (71% response rate, n = 2578). In this analysis conducted from February to May 2016, we included patients with unilateral breast cancer who considered CPM (n = 1140). Patients were selected between July 2013 and September 2014. Main Outcomes and Measures: We examined report of surgeon recommendations, level of discussion about CPM, satisfaction with surgical decision making, receipt of second surgical opinion, and surgery from a second surgeon. Results: The mean (SD) age of patients included in this study was 56 (10.6) years. About one-quarter of patients (26.7%; n = 304) reported that their first surgeon recommended against CPM and 30.1% (n = 343) reported no substantial discussion about CPM. Dissatisfaction with surgery decision was uncommon (7.6%; n = 130), controlling for clinical and demographic characteristics. One-fifth of patients (20.6%; n = 304) had a second opinion about surgical options and 9.8% (n = 158) had surgery performed by a second surgeon. Dissatisfaction was very low (3.9%; n = 42) among patients who reported that their surgeon did not recommend against CPM but discussed it. Dissatisfaction was substantively higher for those whose surgeon recommended against CPM with no substantive discussion (14.5%; n = 37). Women who received a recommendation against CPM were not more likely to seek a second opinion (17.1% among patients with recommendation against CPM vs 15.1% of others; P = .52) nor to receive surgery by a second surgeon (7.9% among patients with recommendation against CPM vs 8.3% of others; P = .88). Conclusions and Relevance: Most patients are satisfied with surgical decision making. First-surgeon recommendation against CPM does not appear to substantively increase patient dissatisfaction, use of second opinions, or loss of the patient to a second surgeon.
Subject(s)
Breast Neoplasms/prevention & control , Directive Counseling/statistics & numerical data , Neoplasms, Second Primary/prevention & control , Patient Participation/statistics & numerical data , Prophylactic Mastectomy , Referral and Consultation/statistics & numerical data , Aged , Breast Neoplasms/pathology , Breast Neoplasms/surgery , California , Communication , Female , Georgia , Health Care Surveys , Humans , Middle Aged , Patient Satisfaction/statistics & numerical data , Surgical OncologyABSTRACT
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.
Subject(s)
Glaucoma, Open-Angle/physiopathology , Vision, Binocular/physiology , Visual Acuity , Visual Fields/physiology , Adult , Aged , Antihypertensive Agents/administration & dosage , Cross-Sectional Studies , Female , Filtering Surgery/methods , Follow-Up Studies , Glaucoma, Open-Angle/diagnosis , Glaucoma, Open-Angle/therapy , Humans , Intraocular Pressure , Male , Middle Aged , Ophthalmic Solutions , Quality of Life , Surveys and Questionnaires , Time Factors , Vision Tests , Vision, Monocular/physiologyABSTRACT
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.
Subject(s)
Breast Neoplasms/psychology , Heart Failure/psychology , Quality of Life/psychology , Survivors/psychology , Aged , Aged, 80 and over , Breast Neoplasms/pathology , Female , Heart Failure/pathology , Humans , Medicare , Self Report , Surveys and Questionnaires , United StatesABSTRACT
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.