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Durant la période de recrutement, les infirmières de recherche des centres participants ont identifié 962 patientes qui répondaient aux critères d’admissibilité. De

ce nombre, 829 femmes (taux de participation 86,0%) ont consenti à participer. Enfin, 800 femmes ont répondu aux trois entrevues à 1, 6 et 12 mois suivant le premier traitement (taux de rétention 96,5%).

Parmi les 541 femmes qui vivaient avec un conjoint, 391 conjoints admissibles ont consenti à participer à l’étude (taux de participation 72,3%) et tous ont répondu aux trois entrevues (taux de rétention 100,0%). Les 279 conjoints qui travaillaient le mois précédent le diagnostic ont été retenus pour cette analyse.

Références

1. Bradley CJ, Dahman B. Time away from work: employed husbands of women treated for breast cancer. J Cancer Surviv. 2013;7(2):227-36.

2. Lauzier S, Maunsell E, De Koninck M, Drolet M, Hebert-Croteau N, Robert J. Conceptualization and sources of costs from breast cancer: findings from patient and caregiver focus groups. Psychooncology 2005;14(5):351-360. 3. Lauzier S, Maunsell E, Drolet M, Coyle D, Hébert-Croteau N. Validity of information obtained from a method for estimating cancer costs from the perspective of patients and caregivers. Qual Life Res. 2010;19(2):177-89. 4. Houts PS, Lipton A, Harvey HA, Martin B, Simmonds MA, Dixon RH, et al.

Nonmedical costs to patients and their families associated with outpatient chemotherapy. Cancer. 1984;53(11):2388-92.

5. Birenbaum LK, Clarke-Steffen L. Terminal care costs in childhood cancer. Pediatr Nurs. 1992;18(3):285-8.

6. Lansky SB, Cairns NU, Clark GM, Lowman J, Miller L, Trueworthy R. Childhood cancer: nonmecdical costs of the illness. Cancer. 1979;43(l):403-8. 7. Agency for Healthcare Research and Quality. Medical Expenditure Panel

Survey. 2001. [Cited January 5, 2017]. Available from:

http://www.meps.ahrq.gov/whatis.htm.

8. Houts PS, Lipton A, Harvey HA, Martin BA. A method for collecting detailed data on direct and indirect médical expenses of cancer patients. Prog Clin Biol Res. 1983;120:193-9.

9. Lauzier S. Coûts du cancer du sein pour la femme et sa famille [Thèse de doctorat]. Québec, Québec: Université Laval; 2007.

10. Vittinghoff E, Glidden DV, Shiboski SC, McCulloch CE. Regression Methods in Biostatistics: Linear, Logistic, Survival, and Repeated Measures Models. Second ed: Springer Science & Business Media; 2012.

11. De Veaux RD, Velleman PF, Bock DE, Vukov G, Wong A. Stats: Data and Models: Pearson Education Canada; 2011.

Chapitre 3

Wage losses incurred among spouses of

women with non-metastatic breast cancer in the

six months following diagnosis

Brittany Humphries, B.A. (candidate à la maîtrise)

Sophie Lauzier, Ph.D. Mélanie Drolet, Ph.D. Douglas Coyle, Ph.D. Benoît Mâsse, Ph.D.

Louise Provencher, M.D., M.A., F.R.C.S.C. André Robidoux, M.D., F.R.C.S.C.

Elizabeth Maunsell, Ph.D.

RÉSUMÉ

Problématique: Les proches fournissent souvent du soutien aux patients atteints de

cancer, ce qui peut les amener à s’absenter du travail et ainsi entrainer des pertes de salaire. Nous avons évalué les pertes de salaire occasionnées par le cancer du sein non- métastatique aux conjoints de femmes atteintes de cette maladie et ce, au cours des six mois suivant le diagnostic.

Méthodologie: Cette analyse inclut les conjoints des femmes diagnostiquées avec un

cancer du sein non-métastatique recrutées dans 8 hôpitaux du Québec. L’information pour calculer les pertes de salaire a été recueillie à partir d’entrevues téléphoniques réalisées 1 et 6 mois après le début des traitements. Des régressions log-binomiales ont été utilisées afin d’identifier les caractéristiques personnelles, médicales et professionnelles associées au fait d’avoir eu des pertes de salaire. Des régressions linéaires généralisés ont été utilisées afin d’identifier les caractéristiques associées à la proportion du salaire habituel perdu.

Résultats: Au total, 829 femmes (participation 86%) et 391 conjoints (72%) ont

participé à l’étude. Parmi les 279 conjoints ayant un emploi, 78,5% ont eu des absences du travail en raison du cancer du sein. En moyenne, les conjoints ont été compensés à 66,3% de leur salaire. En tentant compte de ces compensations, la valeur médiane des pertes de salaire était de 0$ (moyenne = 1 819$). Les conjoints étaient plus susceptibles d’avoir des pertes s’ils étaient des travailleurs autonomes ou vivaient à plus de 50km de l’hôpital. Une proportion plus élevée du salaire habituel perdu était associée au statut de travailleur autonome et au cancer du sein invasif.

Conclusion: Les absences du travail touchent la plupart des conjoints des femmes

atteintes d’un cancer du sein non-métastatique. Cependant, les pertes de salaire demeurent modestes pour la majorité des conjoints en raison des compensations reçues.

ABSTRACT

Background: Breast cancer affects patients and their spouses, who often assume

caregiving responsibilities. Consequently, employed spouses can experience work absences and wage losses. We evaluated the wage losses incurred by spouses of women with non-metastatic breast cancer in the six months after diagnosis.

Methods: This study includes women diagnosed with non-metastatic breast cancer

recruited in 8 Quebec hospitals, and their spouses. Information for estimating wage losses were collected by telephone interviews conducted 1 and 6 months after the start of treatment. Log-binomial regression models were used to identify personal, medical, and employment characteristics associated with experiencing wage losses, and general linear regression models to identify characteristics associated with the proportion of usual wages lost.

Results: Overall, 829 women (participation 86%) and 391 spouses (participation 72%)

were included. Among the 279 employed spouses, 78.5% experienced work absences because of breast cancer. Spouses were compensated for an average 66.3% of their salary during their absence. The median wage loss was $0 (mean = $1,819). Spouses were more likely to experience losses if they were self-employed or lived farther than 50 km from the hospital. A higher proportion of wages lost was associated with self-employment and invasive breast cancer.

Conclusion: Work absences affected the majority of spouses of woman diagnosed with

non-metastatic breast cancer. However, wage losses were modest for most spouses because of compensation received.

Background

Breast cancer is the most common form of cancer among women in Canada and it is estimated that 25,700 women received such a diagnosis in 20161. Treatment for non-

metastatic breast cancer can include surgery, chemotherapy, radiotherapy, hormone therapy and targeted therapy (trastuzumab). Often, these treatments are given in combination2,3. While multiple treatment modalities improve long-term survival4,5, they

result in more doctor visits and side effects6.

From an economic perspective, breast cancer treatments can cause wage losses for workers - whether for women who receive the treatments7 or spouses who take time

off work to provide care and support8,9. Studies indicate that caregiving activities have a

negative impact on the employment of spouses of breast cancer patients in terms of decreased productivity and work absences9-11. However, there is little information

available on the consequences of work absences in terms of wage losses.

We conducted a study to: 1) assess the extent of wage losses among spouses of non-metastatic breast cancer patients in the six months following the start of treatment, 2) describe the components of these wage losses (absence duration and compensation received), and 3) identify the sociodemographic, medical and employment characteristics influencing the proportion of usual wages lost because of the woman's breast cancer.

Methods

Subjects

This prospective cohort study was based on the consecutive series of women diagnosed with non-metastatic breast cancer and their relatives, recruited in 8 hospitals in different regions of the province of Quebec between January 1st and December 23rd,

2003. This cohort has been described more fully elsewhere3,7,12.

A designated nurse in each hospital examined operating lists and pathology reports to identify women with a first diagnosis of non-metastatic breast cancer

according to the classification of the Surveillance, Epidemiology and End Results (SEER) Program13. Whenever possible, the nurse approached the woman during her

hospital stay to explain the study, verify eligibility and solicit consent. If the nurse was unable to meet with the woman, this contact was made by telephone. Women were not eligible to participate if a telephone interview was not feasible (no access to a telephone, insufficient fluency in French, hearing or other physical or psychological problems).

The nurse asked women who agreed to participate to identify a cohabitating family member aged ≥18 years. If the family member was present when the nurse met with the woman at the hospital, the nurse explained the study to that person. If the family member was not present, they were contacted by telephone with the consent of the woman. Family members were not eligible to participate if a telephone interview was not feasible for the same reasons as patients.

If the woman had a spouse, that person was designated from the outset as the eligible family member. For the analysis presented in this article, we included only spouses. We did this because 93% of participating family members were the spouse of the woman, and this restriction resulted in a homogenous group of people. In addition, spouses had to be employed in the month prior to the woman's diagnosis.

Data collection

Data were collected using telephone interviews developed and validated by the research team12,14. The interviews were administered to women and their spouse

separately. Each participant completed 3 telephone interviews conducted 1,6 and 12 months after the start of treatment. Spouses’ wage losses were estimated using information from the 1- and 6-month interviews. The first 6 months after treatment start is an intensive phase of treatment for most women9 and therefore a time when wage

losses are likely to occur.

Information on spouses’ sociodemographic (age, level of education, living with children <18 years, home address) and employment (self-employment, number of hours usually worked, and years of experience on the job held at diagnosis)

characteristics in the month before diagnosis were collected during the 1-month interview. Information on the number and duration of each absence or reduction in work hours because of breast cancer, as well as any compensation received (paid sick leave, paid holidays or other compensation specified by the spouse) were collected during the 6-month interview. Information regarding the women's medical characteristics (type of breast cancer, type of mastectomy, radiotherapy and/or brachytherapy, chemotherapy, and endocrine therapy) were collected from medical records.

The ethics committees of participating hospitals approved the study. All participants provided signed informed consent.

Statistical analyses

Wage losses were estimated for a 6-month period starting when the woman received her first treatment. If a spouse stopped working for a reason other than his partner’s breast cancer, wage losses stopped at that time. Wage losses were not estimated if any element required for their calculation was missing.

The calculation for spouses’ wage losses involved several steps that combined information on usual wages before diagnosis, duration of absence, and compensation received7. First, we calculated the duration of spouses’ work absences during the 6-month

period by adding the number of days of each reported absence. Second, we estimated the wages that spouses would have earned had they not been absent from work. This was done by multiplying the average before-tax weekly wage earned in the month before diagnosis by 26 weeks (6 months). Third, we estimated the spouse’s actual wages by summing the dollar amount(s) received in work-related remuneration and/or compensation. Finally, to obtain the amount of wages lost, we subtracted any amount received in remuneration and/or compensation during the period from the amount that would have been earned had they not been absent from work. A similar approach was used to calculate wage losses resulting from reductions in work hours.

Wage losses are presented in 2003 Canadian dollars to be consistent with previous publications from this study. The appendix presents the formula for converting

2003 Canadian dollars to their value in 2014 dollars, the most recent year for which data are available15.

We calculated the proportion of usual wages lost to better understand the burden imposed by wage losses7. This was calculated by dividing wage losses during the 6-

month period by the usual wages the spouse would have earned had they not been absent from work.

We used descriptive statistics to characterize the extent of wage losses and the proportion of wages lost during the 6 months of follow-up (median, mean, standard deviation, and interquartile range). Because some spouses did not experience wage losses, two sets of analyses were conducted. First, we computed prevalence ratios (PR) and 95% confidence intervals (CI) using log-binomial regression models to identify the personal, medical, and employment characteristics associated with experiencing or not experiencing wage losses. Second, we conducted analysis of variance using the general linear model procedure on the group of spouses who experienced wage losses to identify the characteristics associated with the proportion of wages lost. For the analysis of the proportion of wages lost, a log-transformation was performed to normalize the distribution. Thus, results are presented as geometric means.

For each analysis, we first conducted univariate analyses with the outcome of interest (experience of wage losses, proportion of wages lost) in relation to each characteristic. Then, all characteristics were included in a single multivariable model and removed one by one, starting with the highest p-value from a maximum likelihood test. This process was repeated until only those characteristics with a p-value less than 0.05 remained. This method of variable selection was chosen because the identification of factors influencing wage losses requires an exploratory approach16,17.

The sample size for this cohort study was calculated to examine the effect of breast cancer costs on psychological distress. Power for this specific analysis was calculated a posteriori. We compared the mean proportion of wages lost in a group of 139 spouses to a group of 140 spouses using a two-sided t-test at an alpha level of 0.05

and a standard deviation of ±12.1%. The standard deviation was derived from the wage losses incurred among spouses in this study7. Using these parameters, there was 80%

power to detect a difference of 4.1 percentage points in the mean proportion of wages lost.

Analyses were performed using SAS software (SAS Institute, Cary, NC).

Results

During recruitment, 829 women (participation 86.0%) and 391 spouses (participation 72.3%) agreed to participate in the study, and 279 of these spouses were employed in the month before diagnosis (Table 1).

Overall, 78.5% of spouses (n=219) experienced at least one absence (n=206) or reduction in work hours (n=39) because of breast cancer (Table 2). These spouses missed an average of 23.4 days of work (SD=39.7) during the 6-month period. Spouses reported using various ways of compensating for wage losses during these absences. These included paid sick leave (n=48 spouses), paid holidays (n=49), paid leave for family reasons (n=10), salary insurance (n=3) and government employment insurance (n=3). Spouses also reported informal arrangements with their employers such as making up work hours later (n=32 spouses), using banked hours (n=26) or being paid regardless of the absence (n=26). Among the 219 spouses with work absences, 78 spouses (35.6%) said they did not use any form of compensation, while 104 (47.5%), 34 (15.5%) and 3 (1.4%) spouses reported using one, two or three different types of compensation, respectively. As a result, spouses who took time off work were compensated for an average of 66.3% (median=100.0)of the wages they would have earned had they not been absent because of breast cancer.

Among spouses who had a work absence or a reduction in work hours (n=219) wage losses after taking into account any compensation received (Table 2) were highly variable with a median of $0.0 (mean=$1,819.9). The loss represents on average 5.2% of the wages spouses would have earned during this 6-month period had they not been absent from work.

When restricted to only those spouses who experienced a wage loss (n=103, 36.9% of all spouses), the median wage loss was $1,009.7 (mean=$3,851.9). This loss is equivalent on average to 11.1% (SD=15.7%) of the wages spouses would have earned during this 6-month period had they not been absent from work.

In multivariate models, spouses were more likely to experience wage losses (Table 3) if they lived farther than 50 km from the hospital where the woman's first treatment was received (PR=1.40, 95% CI=1.10–1.80) or if the spouse was self- employed (PR=2.42, 95% CI=1.84–3.17).

Among spouses who experienced wage losses, those who were self-employed or whose partner had invasive breast cancer lost a higher proportion of wages (Table 4). Self-employed spouses had an estimated mean proportion of wages lost of 7.2% compared to 3.6% for spouses who were salaried employees (geometric means, p- value=0.007). If the woman had invasive cancer, spouses' estimated mean proportion of wages lost was 5.4% compared to 1.6% if the woman had DCIS (geometric means, p- value=0.002).

Conclusions

Our results can be summarized into three main findings. First, breast cancer led to work absences for over three quarters of spouses. Second, despite the frequency of work absence, wage losses resulting from work absences were modest for most spouses because of compensation received. Compensation came from a variety of sources including the spouses’ paid sick leave, accumulated overtime, and holidays. Third, among those spouses who experienced wage losses, the loss could be substantial. The estimated median wage loss was $1,009.7 (mean=$3,851.9) for the first 6 months after treatment start among these spouses – equivalent to $1,413.6 (mean=$5,392.6) in 2014 Canadian dollars – and represented an average of 11.1% of usual wages.

To date, few studies have explored the wage losses incurred by family members of cancer patients8,18-22. These studies have focused on different types of cancer and the

diagnosis20. While these studies indicate that cancer can affect the earnings of spouses,

they provide little information on the primary components affecting wage losses like the duration of time away from work and compensation received during time off. These studies also provided very little information on the characteristics that could influence the proportion of wages lost, such as stage of disease. Our results indicate that spouses who are self-employed and whose partner has invasive breast cancer are more likely to experience a higher proportion of usual wages lost.

Our study has several strengths. First, spouses were recruited from the consecutive series of patients coming into 8 hospitals in different geographic regions of Quebec. Participation among eligible spouses was high, minimizing the possibility of selection bias. Second, data were collected using telephone interviews specifically designed to assess the costs resulting from cancer, allowing us to gain a detailed understanding of wage losses. Considered with other publications from this study, these results contribute to a body of work from our group that has provided a relatively comprehensive picture of the wage losses7 and out-of-pocket costs3 incurred by women

diagnosed with non-metastatic breast cancer and their spouses.

This study also has limitations. First, our assumption when estimating wage losses was that wages earned by the spouses in the month prior to diagnosis would have been stable during the six months of follow-up if the woman had not been diagnosed with cancer. This assumption may not apply to temporary or seasonal workers and could have affected the accuracy of our estimates23. However, the proportion of spouses with

such jobs was small in our study. Second, there has been an increase in use of trastuzumab to treat HER2-positive breast cancer since these data were collected24. Our

results will therefore underestimate the wage losses associated with this treatment. Trastuzumab requires that women visit the hospital every three weeks to receive an intravenous infusion. Women must also have an echocardiography every three months.

Although a high proportion of spouses received some financial compensation during work absences and had relatively modest wage losses, our results suggest that the ways spouses coped with potential wage losses may contribute to overall strain on the

spouse and their family during the six months after diagnosis and beyond. A considerable number of spouses used their own paid holiday leave or sick leave. Although such leave may have mitigated the immediate financial impact of being absent from work, it could

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