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Background: The aim of this study was to evaluate the wage losses incurred by spouses of women with nonmetastatic breast cancer in the 6 months after the diagnosis., Methods: A prospective cohort study of spouses of women diagnosed with nonmetastatic breast cancer who were recruited in 8 hospitals in the province of Quebec (Canada) was performed. Information for estimating wage losses was collected by telephone interviews conducted 1 and 6 months after the diagnosis. Log-binomial regressions were used to identify personal, medical, and employment characteristics associated with experiencing wage losses, and generalized linear models were used to identify characteristics associated with the proportion of usual wages lost., Results: Overall, 829 women (86% participation) and 406 spouses (75% participation) consented to participate. Among the 279 employed spouses, 78.5% experienced work absences because of breast cancer. Spouses were compensated for 66.3% of their salary on average during their absence. The median wage loss was $0 (mean, $1820) (2003 Canadian dollars). Spouses were more likely to experience losses if they were self-employed or lived 50 km or farther from the hospital. Among spouses who experienced wage losses, those who were self-employed or whose partners had invasive breast cancer lost a higher proportion of wages., Conclusions: Although spouses took some time off work, for many, the resulting wage losses were modest because of compensation received. Still, the types of compensation used may hide other forms of burden for families facing breast cancer., (© 2019 American Cancer Society.)

Background: We lack comprehensive information about the extent of out-of-pocket costs after diagnosis of early breast cancer and their effects on the family's financial situation., Methods: This longitudinal study assessed out-of-pocket costs and wage losses during the first year after diagnosis of early breast cancer among Canadian women and spouses. Out-of-pocket costs for treatments and follow-up, consultations with other practitioners, home help, clothing, and natural health products were estimated, with information collected from telephone interviews. Generalized linear models were used to identify women at risk of having higher costs and the effects of out-of-pocket costs on perceptions of the family's financial situation., Results: Overall, 829 women (participation, 86.2%) and 391 spouses participated. Women's median net out-of-pocket costs during the year after diagnosis were $1002 (2003 Canadian dollars; mean = $1365; SD = $1238), and 74.4% of these costs resulted from treatments and follow-up. Spouses' median costs were $111 (mean = $234; SD = $320), or 9% of couples' total expenses. In multivariable analyses, the percentage of women with out-of-pocket costs of $1773 or more (upper quartile) was statistically significantly associated with higher education, working at diagnosis, living more than 50 km from the hospital where surgery was performed, and having two and three different types of adjuvant treatment (all 2-sided P values ≤ .01). However, when considered simultaneously with wage losses, out-of-pocket costs were not associated with perceived deterioration in the family's financial situation; rather, wage losses were the driving factor., Conclusions: Overall, out-of-pocket costs from breast cancer for the year after diagnosis are probably not unmanageable for most women. However, some women were at higher risk of experiencing financial burden resulting from these costs.

Purpose: Patients with breast cancer incur out-of-pocket costs when they receive adjuvant radiation. These treatments are administered in dedicated centers on a daily basis over 4 to 5 weeks. We assessed the extent of out-of-pocket costs to access radiotherapy and identified women at risk of experiencing higher costs., Patients and Methods: This prospective study was conducted among 800 women from eight Quebec hospitals (participation, 86%), of whom 693 women received adjuvant radiotherapy. Costs to access treatment (transportation, parking, lodging, and meals) were estimated on the basis of information collected by telephone interviews. Generalized linear models were used to identify women at risk of having higher costs., Results: Mean and median total costs (including financial aid received) to access radiotherapy were 445 Canadian dollars (Can$; standard deviation, Can$407) and Can$311, respectively. Women who lived at home but far from the radiotherapy center had the highest risk of experiencing weekly costs of at least Can$122 (highest quartile; prevalence ratio [PR], 5.8; 95% CI, 4.7 to 7.1) followed by women who lived away from home and farther from the center (PR, 4.5; 95% CI, 3.4 to 6.0) and by women who lived away from home and closer to the center (PR, 2.14; 95% CI, 1.3 to 3.5). When women stayed at a cancer lodge during treatment, costs were reduced by 80%., Conclusion: Considered in and of themselves, out-of-pocket costs for access to radiotherapy appeared relatively modest. Financial assistance initiatives for women who lived away from home during treatments contributed to a substantial reduction of access costs. These efforts should be maintained, but financial assistance should also target patients with cancer who live at home during treatments but have to travel relatively long distances on a daily basis.

Purpose: We describe a method we developed for estimating cancer costs from the perspective of patients and caregivers and evidence supporting validity of estimates obtained., Methods: To increase validity, interview questions were anchored to treatments; costs were divided into their components; most questions focused on facts; and the research team combined responses into cost estimates. Evidence for validity comes from a prospective study of breast cancer costs using this method., Results: Estimates obtained using interview responses were similar to those from independent sources. Women reported being reimbursed $205 on average for prosthesis (government reimbursement =$200); paying $15.48 per night at cancer lodge (average rate =$17.52); receiving government illness insurance for 14.6 weeks at 53% of usual salary (governmental program covers 15 weeks at 55%). A priori hypotheses about relations of costs with other characteristics were also confirmed. For example, patients' weekly travel costs increased as a function of distance from the radiotherapy center, with patients living <25, 25-49 and ≥50 km away spending $54, $141 and $240, respectively (P<.0001); and the proportion of annual salary lost was 37% for self-employed workers compared to 18% for employees (P<.0001)., Conclusions: Evidence to date supports the validity of estimates obtained using this method., (© Springer Science+Business Media B.V. 2010)

Background: Wage losses after breast cancer may result in considerable financial burden. Their assessment is made more urgent because more women now participate in the workforce and because breast cancer is managed using multiple treatment modalities that could lead to long work absences. We evaluated wage losses, their determinants, and the associations between wage losses and changes for the worse in the family's financial situation among Canadian women over the first 12 months after diagnosis of early breast cancer., Methods: We conducted a prospective cohort study among women with breast cancer from eight hospitals throughout the province of Quebec. Information that permitted the calculation of wage losses and information on potential determinants of wage losses were collected by three pretested telephone interviews conducted over the year following the start of treatment. Information on medical characteristics was obtained from medical records. The main outcome was the proportion of annual wages lost because of breast cancer. Multivariable analysis of variance using the general linear model was used to identify personal, medical, and employment characteristics associated with the proportion of wages lost. All statistical tests were two-sided., Results: Among 962 eligible breast cancer patients, 800 completed all three interviews. Of these, 459 had a paying job during the month before diagnosis. On average, these working women lost 27% of their projected usual annual wages (median = 19%) after compensation received had been taken into account. Multivariable analysis showed that a higher percentage of lost wages was statistically significantly associated with a lower level of education (P(trend) = .0018), living 50 km or more from the hospital where surgery was performed (P = .070), lower social support (P = .012), having invasive disease (P = .086), receipt of chemotherapy (P < .001), self-employment (P < .001), shorter tenure in the job (P(trend) < .001), and part-time work (P < .001)., Conclusion: Wage losses and their effects on financial situation constitute an important adverse consequence of breast cancer in Canada.

The data obtained with two forms of the Impact of Event Scale were compared, one referring to a BRCA1/2 test result (IES-T) and another to cancer (IES-C). The sample consisted of 272 women with a family history suggestive of a BRCA1/2 mutation who underwent genetic testing and received results: noncarrier, carrier, or inconclusive. Globally, mean scores on the IES-C form were higher than those obtained on the IES-T form. Among carriers of a BRCA1/2 mutation, mean scores on the two forms were similar and agreement was good, as measured by the intraclass correlation coefficient (.83; 95% 95% CI=.72, .91). Agreement between the forms was poor to fair among noncarriers (ICC= .38; CI= .15, .57) and women with an inconclusive result (ICC= .40; 95% CI= .26, .52). Having had cancer increased total scores but had little influence on agreement between scores on forms. These findings highlight the importance of carefully selecting the form of the Impact of Event Scale in the context of genetic testing for breast cancer susceptibility.

Purpose: Little is known about factors increasing likelihood of not working among breast cancer survivors compared with women in the general population., Patients and Methods: A population-based retrospective cohort study was conducted in Quebec, Canada, based on the consecutive series of working women aged younger than 60 years when first treated for breast cancer (identified through the Quebec Tumor Registry), and on a group of randomly selected similar women, living in Quebec, who were working at the time of survivors' diagnoses, but who were without cancer (identified through provincial health care files). Data came from a telephone interview, 3 years after diagnosis for 646 survivors (73% of those eligible) or during a similar period for 890 comparison women (51%)., Results: Slightly more survivors were not working 3 years after diagnosis compared with women never diagnosed with cancer (21% and 15%, respectively). Older age (for survivors and comparison women, relative risk [RR] = 4.62, P < .0001 and RR = 4.98, P < .0001, respectively) and union membership (RR = 1.88, P = .0003 and RR = 1.40, P = .06, respectively) increased the likelihood of not working at the end of follow-up. In addition, income less than 20,000 dollars compared with > or = 50,000 dollars was associated with not working only among survivors (RR = 3.18; P = .0008). Adjuvant treatments did not predict work cessation, but any new cancer event during follow-up did (RR = 2.14; P < .0001)., Conclusion: Although reassuring that adjuvant treatments did not appear to play a role in survivors' not working, other aspects of the cancer experience might nonetheless have influenced the decision to reduce work effort after breast cancer.

Background: Absence from work after breast cancer diagnosis may be part of the burden of disease for women with cancer, but little research has addressed this. We examined work absences of 4 weeks or more among women who had had breast cancer during the 3 years after diagnosis and compared their absences with those of women who had never had cancer., Methods: Our 2 target study groups were women in Quebec 18-59 years of age who were working when they first received therapy for breast cancer between November 1996 and August 1997 and similarly aged women randomly selected from provincial health care files who had never had cancer and were working at the time of diagnosis in women who had cancer. We interviewed 646 women who had had breast cancer (73% of those eligible) and 890 women in the comparison group (51% of those eligible) by telephone 3 years after first diagnosis., Results: One year after diagnosis, 85% (459/541) of breast cancer survivors who remained free of disease during the 3-year study period were absent from work for 4 weeks or more compared with 18% (156/881) of healthy women (geometric mean total duration 5.6 v. 1.7 months, p < 0.001). By the third year, disease-free women were not absent more than women in the comparison group; however, more women who had experienced any new cancer event continued to be absent from work and to be absent from work for longer periods of time. Receiving adjuvant chemotherapy prolonged absence duration (9.5 v. 5.4 months among women not receiving chemotherapy). Compared with survivors belonging to a union, those who did not belong to a union (multivariate relative risk [RR] 7.54, 95% confidence interval [CI] 3.02-18.83) and those who were self-employed (RR 13.95, 95% CI 5.53-35.21) were more likely to report no work absence., Interpretation: Most of the women with breast cancer took time off work (almost 6 months on average) after receiving the diagnosis. Three years after diagnosis, breast cancer survivors who remained disease-free--a large proportion of women with nonmetastatic breast cancer--were not absent from work more often or for longer periods of time than other working women.

Assessment of economic burden of breast cancer to patient and family has generally been overlooked in assessing the impact of this disease. We explored economic aspects from the perspective of women and their caregivers. Focus groups were conducted in 3 Quebec cities representing urban and semi-urban settings: 3 with 26 women first treated for non-metastatic breast cancer in the past 18 months, and 3 with 24 primary caregivers. We purposefully selected participants with different characteristics likely to affect the nature or extent of costs. Thematic content analysis was conducted on verbatim transcripts. Costs of breast cancer could be substantial, but were not the most worrisome aspect of the illness during treatments. Some costs were considered unavoidable, others depended on ability to pay. Costs occurred over a long period, with long term impact, and were borne by the whole family and not just the woman. Principal cost sources discussed were those associated with accessing health care, wage losses, reorganization of everyday life, and coping with the disease. This study provided deeper understanding of cost dynamics and the experience of costs among Canadian women with non-metastatic breast cancer, whose treatment and medical follow-up costs are borne through a system of universal, publicly funded health care., (Copyright (c) 2004 John Wiley & Sons, Ltd.)

Background and Objective: Medical records are considered the gold standard for information on cancer treatments and prognosis. We compared survivor self-report and medical records for agreement on key treatment and prognostic characteristics., Study Design and Setting: A population-based study was conducted in Quebec assessing work experience among breast cancer survivors aged <60 years at diagnosis. Data came from a single telephone interview 3.4 +/- 0.2 years after diagnosis. Medical record data were available for 103 out of 646 participants., Results: Agreement of self-report with medical record data was very high for treatments (breast surgery, type of mastectomy, axillary dissection, radiotherapy, chemotherapy, hormone therapy, reconstruction, bone marrow transplantation). Kappa values varied from 0.89 for axillary dissection to 1.00 for breast surgery. Kappa values for number of invaded nodes (0, 1-3, >/=4, unknown) was slightly lower (0.85) but was still excellent. When accepting answers +/-1 month of the medical record date, >/=89% of women correctly reported different treatment dates., Conclusion: These results provide evidence of the validity of summary treatment and prognostic data reported by breast cancer survivors 3 years after diagnosis. Survivors can likely accurately describe the treatment trajectory and key prognostic information when medical record review is unfeasible. These findings may need replication among older women.

Background: Breast cancer may adversely affect work experience. We assessed whether there was evidence of discrimination at work, defined as negative or involuntary changes in employment situation (including changes in position, wages, and other conditions), associated with a breast cancer diagnosis in a population-based retrospective cohort study conducted in Quebec, Canada., Methods: The study was based on the consecutive series of women aged less then 60 years when first treated for breast cancer (identified through the Quebec Tumor Registry) and a random sample of frequency-matched women living in Quebec (identified from provincial health care files) who had never been diagnosed with cancer. Eligibility for the study was restricted to women who were employed at the time of diagnosis (for breast cancer survivors) or the same calendar period (for women in the comparison group). We conducted telephone interviews of eligible women 3 years after diagnosis for 646 survivors or after the matched calendar period for 890 women in the comparison group. Binomial regression was used to evaluate the relationship between having breast cancer and work situation. All statistical tests were two-sided., Results: Working conditions were similar between the two groups at the beginning of follow-up. After 3 years, slightly more survivors (21%) than women in the comparison group (15%) were unemployed (adjusted relative risk for being unemployed = 1.29, 95% confidence interval = 1.05 to 1.59), although most women who were not working (84% of unemployed survivors and 76% of unemployed women in the comparison group) said that the decision to stop working was their own. Among women still employed, no deterioration in working conditions was observed in either group., Conclusion: We found little evidence that women diagnosed with breast cancer experience discrimination at work. This information may be helpful for working women concerned about employment after breast cancer.

Purpose: Some women may try to cope with breast cancer by making lifestyle modifications, possibly in the hope of improving disease outcome. We assessed extent, predictors, and effect on psychological distress of dietary changes in the year after diagnosis among 250 women with newly diagnosed, nonmetastatic breast cancer., Patients and Methods: Data came from medical records, and from interviews 3 days and 12 months after initial treatment., Results: At 12 months, 41% (n = 103) reported dietary changes at some time since diagnosis, with decreases in meat (77%) and increases in fruit and vegetable intake (72%) being the most frequent. Women reporting changes were more likely to be younger, to have positive nodes, to be receiving adjuvant therapy, and to be more distressed initially. The mean 0 to 12 month decrease in psychological distress was greater in women who reported changes (9 points) than those who did not (4.7 points) (P =.03), although regression toward the mean cannot be excluded., Conclusion: A sizable proportion of women made dietary changes on their own initiative. Most changes reported were generally consistent with current scientific hypotheses about dietary changes that might favorably affect prognosis. The profile of women reporting changes suggests a group with more concerns about recurrence, who may have initiated dietary change to help cope with and gain a sense of control over the disease, and possibly to improve prognosis. Our results suggest that newly diagnosed women could be receptive to explicit attention to diet as part of psychosocial care. However, this interest in dietary change may not, as yet, have been maximally channeled into trying to improve the care and quality of life of women facing diagnosis, treatments, and fears about recurrence.