Abstract
Purpose:
By 2020, the US population living with metastatic breast cancer (MBC) has exceeded 165,000. A knowledge gap exists regarding the factors affecting work ability for these individuals. We sought to characterize the work status, importance of work, and work-related information needs for women living with MBC.
Methods:
We conducted an online survey using an MBC listserv and clinic flyers in 2014–2015. Respondents working at time of MBC diagnosis were divided into “stably-working” and “no-longer-working” based on employment status at time of survey. Comparisons were made with chi-square or two-tailed t-test.
Results:
Respondents (n= 133) were predominantly non-Hispanic White (93.2%); 72 were stably-working, while 61 reported no longer working. Those no-longer-working were older (54.0 vs 49.5 years old, p<0.01, Cohen’s d = 0.55), further from initial diagnosis of MBC (4.6 vs 3.3 years, p< 0.01, Cohen’s d = 0.36), and reported high rates of life interference due to MBC (n= 51, 83.6% vs n= 39, 54.2%, p< 0.01, Cramer’s V = 0.32). Stably-working respondents considered work to be important (n= 58, 80.5% vs n=18, 29.5%, p<0.01, Cramer’s V= 0.57); the top reasons cited were financial and/or insurance (80.4%), importance of staying busy (67.9%), and desire to support themselves and family (64.3%). The stably-working respondents more often valued information on how to talk with employers or co-workers about diagnosis (n=38, 57.6% vs n=16, 27.1%; p< 0.01), legal rights in workplace (n= 43, 65.2% vs n= 22, 36.7%; p< 0.01), when to think about stopping work (n= 45, 68.2% vs n=18, 30%; p<0.01), and applying for disability (n= 42, 63.6% vs n=26, 42.6%; p<0.05), when compared to no-longer-working.
Conclusion:
The decision to stop working may represent a subsequent event driven by cancer progression. This research highlights the ongoing need of information targeting MBC to facilitate the management of employment and financial issues early in the MBC trajectory.
Keywords: Metastatic survivorship, return to work, breast cancer, employment, evaluation, work capacity, needs assessment
Introduction
By 2020, the US population of individuals living with metastatic breast cancer (MBC) was projected to exceed 165,000 [1]. Most of these individuals (72%) have metastatic disease as a subsequent cancer event during the cancer continuum (recurrence) [1,2] – an estimated 19% of those diagnosed with stage I-III breast cancer will develop metastatic disease [3]. That contrasts with those who have metastatic disease at presentation (de novo MBC) [1]. Based on both tumor biology and individual characteristics, survivors with MBC are a heterogeneous population [4]. Overall survival for MBC averages 20–31 months after diagnosis of metastatic disease, although certain subsets have median survivals that exceed 5 years [5]. As MBC has emerged as a priority for research, there is a need to identify interventions to improve survivorship outcomes such as distress, quality of life, and financial toxicity for the MBC population [6–8].
Survivors living with MBC may have unique needs related to their disease processes [7,9]. The disease is treatable but generally incurable, and those living with MBC will typically receive ongoing cancer treatment until close to the end of life. Disease as well as treatment factors may cause functional impairments resulting in work limitations and employment challenges [10]. Employment for survivors living with MBC has been shown to decrease following initial diagnosis [11,12]. Research on work-related needs for breast cancer often refers to “survivors” without differentiating between those individuals who are in active treatment with curative intent, who are in surveillance without evidence of disease, or who are living with known metastatic disease [11–13]. But the symptoms and treatment burdens differ from those living with localized disease, as survivors living with MBC frequently need to manage the direct effects of cancer as well as side effects from cancer therapy [7,9].
Survivors living with metastatic cancer may continue to work: up to 35% report working full- or part-time [14]. However, Verrill et al described how patients with metastatic HER2+ breast cancer, when compared to early stage, were more frequently unable to work, even part time [15]. Sociodemographic determinants and occupational characteristics (e.g., physical and cognitive demands, work-related stress, lack of flexibility) may affect the decision on how to manage employment while receiving cancer treatment [10]. Importantly, knowledge gaps exist regarding the motivations and priorities behind decisions about continuing to work and the resources needed to facilitate employment while living with MBC. It is necessary to understand the factors affecting work ability of survivors living with MBC to develop interventions that support employment-related needs and decision-making. As an initial step to addressing this knowledge gap, we conducted an online survey of women living with MBC. The objectives of the study were to describe the employment-related outcomes for patients living with MBC. We sought to characterize the work status and information needs, and explore the importance of work, including motivations impacting work-related decisions while living with MBC. We compared women who continue working with those who stop working, as needs may differ among these two groups.
Methods
Participant Population.
Women living with MBC were recruited through a breast cancer advocacy group and the Wisconsin Oncology Network [16]. Participants were recruited via an email sent to a listserv for women living with MBC and flyers posted at two community-based oncology clinics (thus, a response rate cannot be calculated). Eligible patients had to self-report being 18 years or older, diagnosed with MBC and willing to complete the survey. Consent to participate in the study was implied based on the participant proceeding with the electronic survey.
Employment Groups.
While the study population is comprised of women with MBC, from a clinical perspective, resources to support women who are still working may differ from resources offered to support women who are no longer working. Thus, we divided respondents into two “employment groups” based on self-reported employment level at time of metastatic diagnosis (“Were you working at the time of your metastatic diagnosis?”) and employment status at time of survey (“What best describes your level of employment currently?”). Individuals in Group A reported that they were (1) working at time of metastatic diagnosis and (2) working at time of survey (“stably-working”). Individuals in Group B reported that (1) they were working at time of metastatic diagnosis but were (2) no longer working at the time of survey (“no-longer-working”). Other respondents were excluded from the analysis (Figure 1).
Fig. 1.
Individuals in Group A reported that they were (1) working at time of metastatic diagnosis and (2) working at time of survey (“stably-working”). Individuals in Group B reported that (1) they were working at time of metastatic diagnosis but were (2) no-longer-working at the time of survey (“no-longer-working”). Other respondents were excluded from the analysis
Survey Tools and Measures.
All information was collected via UW-Madison Qualtrics electronic survey between November 2014 and February 2015, which is available in Supplementary Information 1. Questions collected information about demographics, employment status, work ability, work importance, and work and disability information needs but the exact number asked of each respondent differed due to branching logic. Work and employment factors were assessed with a variety of validated survey tools from the employment and work ability literature. This included the Work Ability Index (WAI) [17] and employment status questions from the Eastern Cooperative Oncology Group’s (ECOG) “Symptom Outcomes Assessment Practice Patterns” study [18]. For questions addressing the current overall work ability, current work ability related to the physical and mental demands of current or previous job, we provided the following instructions. For women in the stably-working group, “Think about the way you have felt over the past 4 weeks when answering the following questions” while for those in the no-longer-working group, “Think about the way they have felt over the past 4 weeks. Imagine that you were STILL doing the last job you had before you stopped working when answering the following questions”. In addition, the questionnaire surveyed the use of leave and disability benefits, accommodations, and potential problems experienced at work. The information needs assessment was modified based on the Silent Voices Survey, a thorough report of metastatic breast cancer patients’ unmet needs [19]. Questions were also asked about how useful it would be to receive information defined as “important information to receive” (5-point Likert scale from “very useless” to “very useful”, in addition to “I was unable to find the topic I looked for” and “not applicable”). Finally, we asked 7 open-ended free-text questions about the importance of work, any other information needed, and any other information that they would like to provide from a metastatic breast cancer patient perspective.
Data Analysis.
Descriptive statistics (i.e., percentages, means, and standard deviations) were calculated for sociodemographic factors, work-related factors, work-related problems and benefits, and reported unmet information needs and important information to receive. Comparisons were made between the stably-working and no-longer-working participants for sociodemographic factors, perceived work ability, encountered problems and benefits at work, and information needs. Differences between groups were analyzed using either chi-square for categorical variables or two-tailed t test for continuous variables. A p <0.05 was considered statistically significant. Effect size is estimated with Cohen’s d for continuous variables or Cramer’s V for categorical variables. All analyses were conducted with the software STATA/SE 14.2 (StataCorp LP, College Station, TX). The project was approved by the University of Wisconsin Institutional Review Board.
Results
Sociodemographic factors.
A total of 138 eligible self-identified women living with MBC completed the survey (a response rate cannot be calculated). Five respondents reported not working at the time of metastatic diagnosis and were excluded from analysis. Of those who worked at the time of MBC diagnosis (n=133), 72 continued to work (stably-working) at the time of survey while 61 had changed employment status and no longer worked (no-longer-working). As shown in Table 1, respondents were predominantly non-Hispanic White (n = 124, 93.2%), and majority had a college degree (n= 96, 72.7%). The overall average of age was 51.5 (SD± 8.5). Those in the no-longer-working group were older than those in the stably-working group (54.0 vs 49.5 years old, p<0.01, Cohen’s d = 0.55), had more time passed from metastatic breast cancer diagnosis (4.6 vs 3.3 years, p<0.01, Cohen’s d = 0.36), and reported high rates of life interference due to metastatic breast cancer (n=51, 83.6% vs n= 39, 54.2%, p<0.01, Cramer’s V = 0.32).
Table 1.
Sociodemographic factors of surveyed women with metastatic breast cancer
| Overall | Stably-working | No-longer-working | Effect size (p-value) | |
|---|---|---|---|---|
| (n=133) | (n=72) | (n=61) | ||
| Age, Mean (SD) | 51.5 (8.5) | 49.5 (8.3) | 54.0 (8.1) | 0.55 (p= 0.002) |
| Time from initial diagnosis of MBC (yr.), Mean (SD) | 3.9 (3.7) | 3.3 (3.4) | 4.6 (4.0) | 0.36 (p= 0.004) |
| Highest level of education (n, %) | 0.16 (p=0.20) | |||
| Less than college | 36 (27.3%) | 17 (23.9%) | 19 (31.2%) | |
| College graduate | 44 (33.3%) | 21 (29.6%) | 23 (37.7%) | |
| Post-graduate or professional degree | 52 (39.4%) | 33 (46.5%) | 19 (31.2%) | |
| Prefer not to answer | 1 | 1 | ||
| Household income (n, %) | 0.16 (p= 0.36) | |||
| $75,000 or less | 60 (45.1%) | 34 (47.2%) | 26 (42.6%) | |
| $75,001–150,000 | 44 (33.1%) | 12 (29.2%) | 23 (37.7%) | |
| $150,001 or more | 19 (14.3%) | 13 (18.1%) | 6 (9.8%) | |
| Unknown or prefer not to answera | 10 (7.5%) | 4 (5.6%) | 6 (9.8%) | |
| Race b (n, %) | 0.15 (p=0.468) | |||
| White | 128 (96.2%) | 71 (98.6%) | 57 (93.4%) | |
| Black | 2 (1.5%) | 0 | 2 (3.3%) | |
| Asian | 0 | 0 | 0 | |
| Other | 3 (2.3%) | 1 (1.4%) | 2 (3.3%) | |
| Prefer not to answer | 2 (1.5%) | 1 (1.4%) | 1 (1.6%) | |
| Ethnicity (Spanish/Hispanic/Latino origin) (n, %) | 0.18 (p=0.169) | |||
| Yes | 2 (1.5%) | 0 | 2 (3.3%) | |
| No | 129 (97%) | 70 (97.2%) | 59 (96.7%) | |
| Prefer not to answer | 2 (1.5%) | 2 (2.8%) | 0 | |
| Life interfered by metastatic breast cancer during past 6 months (n, %) | 0.32 (p= 0.001) | |||
| Never or rarely | 11 (8.3%) | 9 (12.5%) | 2 (3.3%) | |
| Sometimes | 32 (24.1%) | 24 (33.3%) | 8 (13.1%) | |
| Often | 90 (67.7%) | 39 (54.2%) | 51 (83.6%) |
Comparison between “stably-working” and “no-longer-working” groups using t-test for continuous variables and chi-square test for categorical variables; effect size is estimated with Cohen’s d for continuous variables or Cramer’s V for categorical variables.
This represents respondents who did not provide a response, as well as those who selected “prefer not to answer”
Response category permitted more than one selection (e.g., “all that apply”). Thus, column sum may exceed 100%.
Work-related factors and work ability.
Most of surveyed women (n=111, 83.5%) reported working full-time when they were diagnosed with metastatic breast cancer (Table 2). When asked “Currently, how important is work to you?” the majority of those stably-working at the time of our survey considered work extremely or very important when compared to those no-longer working (n=58, 80.5% vs n=18, 29.5%, p<0.01, Cramer’s V = 0.57). Although there were no differences between the groups regarding reasons for work being important, the top three cited reasons among stably-working women were financial and/or insurance reasons (n= 45, 80.4%), important to stay busy (n= 38, 67.9%), and desire to support themselves and family (n= 36, 64.3%). For those no-longer-working who considered work extremely or very important, the top three reasons were: important to have a worthwhile job (n= 13, 72.2%), important to stay busy (n= 13, 72.2%), and work was an important part of social life (n= 12, 66.7%). Among the stably-working group, less than 14% reported work as somewhat unimportant or not at all important, contrasting with the no-longer-working counterparts (n=10, 13.6% vs n=29, 47.6%). The top three cited reasons were similar for both groups: work becoming less important after diagnosis (n= 10, 100% vs n=16, 55.2%), and not needing to work for financial (n= 1, 10% vs n= 11, 37.9%) or insurance reasons (n= 3, 30% vs n= 10, 34.5%).
Table 2.
Work-related factors and work ability of surveyed women with metastatic breast cancer
| Overall | Stably-working | No-longer-working | Effect size (p-value) | |
|---|---|---|---|---|
| (n=133) | (n=72) | (n=61) | ||
| General factors | ||||
| Employment status at diagnosis of metastatic breast cancer | 0.12 (p= 0.381) | |||
| Full time | 111 (83.5%) | 63 (87.5%) | 48 (78.7%) | |
| Part time | 20 (15%) | 8 (11.1%) | 12 (19.7%) | |
| Employed but not working | 2 (1.5%) | 1 (1.4%) | 1 (1.6%) | |
| Current importance of work | 0.57 (p <0.001) | |||
| Extremely important | 25 (18.8%) | 24 (33.3%) | 1 (1.6%) | |
| Very important | 51 (38.3%) | 34 (47.2%) | 17 (27.9%) | |
| Neither important nor unimportant | 18 (13.5%) | 4 (5.6%) | 14 (23%) | |
| Somewhat unimportant | 15 (11.3%) | 6 (8.3%) | 9 (14.8%) | |
| Not at all important | 24 (18.1%) | 4 (5.6%) | 20 (32.8%) | |
| Work ability | ||||
| Work ability at diagnosis of metastatic breast cancer | 0.08 (p = 0.494) | |||
| Regular work activities | 124 (94.7%) | 66 (93%) | 58 (96.7%) | |
| Modified work activities/restricted duties | 7 (5.3%) | 5 (7%) | 2 (3.3%) | |
| Metastatic breast cancer affected… d | ||||
| My physical ability to work | 93 (72%) | 43 (63.2%) | 50 (82%) | 0.21 (p= 0.018) |
| My mental ability to work | 77 (59.7%) | 34 (50%) | 43 (70.5%) | 0.21 (p= 0.018) |
| My relationship with my employer | 22 (17%) | 14 (20.6%) | 8 (13.1%) | 0.10 (p= 0.26) |
| My ability to complete work in a timely manner | 44 (34.1%) | 20 (29.4%) | 24 (39.3%) | 0.10 (p= 0.235) |
| My relationship with my co-worker(s) | 33 (25.6%) | 16 (23.5%) | 17 (27.9%) | 0.05 (p= 0.573) |
| Overall current a work ability b, mean (SD) | 5.3 (3.3) | 7.3 (2.5) | 3.0 (2.5) | 1.73 (p< 0.001) |
| Current a work ability b with respect to the mental demands of current or previous work | 0.66 (p< 0.001) | |||
| Very poor | 25 (19.7%) | 4 (6.1%) | 21 (34.4%) | |
| Rather poor | 24 (18.9%) | 3 (4.6%) | 21 (34.4%) | |
| Moderate | 33 (26%) | 18 (27.3%) | 15 (24.6%) | |
| Rather good | 26 (20.5%) | 24 (36.4%) | 2 (3.3%) | |
| Very good | 19 (14.9%) | 17 (25.8%) | 2 (3.3%) | |
| Current a work ability b with respect to the mental demands of current or previous work | 0.57 (p< 0.001) | |||
| Very poor | 18 (14%) | 2 (3%) | 16 (26.2%) | |
| Rather poor | 25 (19.5%) | 6 (9%) | 19 (31.2%) | |
| Moderate | 31 (24.2%) | 14 (20.9%) | 17 (27.9%) | |
| Rather good | 37 (29%) | 30 (44.8%) | 7 (11.5%) | |
| Very good | 17 (13.3%) | 15 (22.4%) | 2 (3.3%) | |
| Importance of work c | ||||
| Reasons why work is important (among those reporting very or extremely important) d | (n= 74) | (n=56) | (n=18) | |
| Success is important to me | 24 (32.4%) | 17 (30.4%) | 7 (38.9%) | 0.08 (p= 0.501) |
| It means a lot for me to be able to support myself/my family | 45 (60.8%) | 36 (64.3%) | 9 (50%) | 0.13 (p= 0.28) |
| It is important that I have a worthwhile job | 47 (63.5%) | 34 (60.7%) | 13 (72.2%) | 0.10 (p= 0.378) |
| It is necessary for financial and/or insurance reasons | 56 (75.7%) | 45 (80.4%) | 11 (61.1%) | 0.19 (p= 0.098) |
| Work is an important part of my social life | 39 (52.7%) | 27 (48.2%) | 12 (66.7%) | 0.16 (p= 0.173) |
| Staying busy is important to me | 51 (69%) | 38 (67.9%) | 13 (72.2%) | 0.04 (p= 0.728) |
| Other | 11 (14.9%) | 8 (14.3%) | 3 (16.7%) | 0.03 (p= 0.805) |
| Reasons why work is unimportant (among those reporting somewhat unimportant or not at all important) d | (n=39) | (n=10) | (n=29) | |
| Work has never been very important to me | 1 (2.6%) | 0 | 1 (3.5%) | 0.10 (p= 0.552) |
| Work is less important to me since being diagnosed with metastatic breast cancer | 26 (66.7%) | 10 (100%) | 16 (55.2%) | (p= 0.01) 0.26 |
| Work is not important because I do not need to work for financial reasons | 12 (30.8%) | 1 (10%) | 11 (37.9%) | (p= 0.099) 0.04 |
| Work is not important because I do not need to work for insurance reasons | 13 (33.3%) | 3 (30%) | 10 (34.5%) | (p= 0.795) 0.14 |
| Work is not important because it does not provide social support | 2 (5.6%) | 0 | 2 (6.9%) | (p= 0.394) 0.08 |
| Other | 17 (43.6%) | 5 (50%) | 12 (41.4%) | 0.08 (p= 0.635) |
Comparison between “stably-working” and “no-longer-working” groups using t-test for continuous variables and chi-square test for categorical variables; effect size is estimated with Cohen’s d for continuous variables or Cramer’s V for categorical variables.
Current meaning: for women in the stably-working group, they were instructed to “Think about the way you have felt over the past 4 weeks when answering the following questions”. For those in the no-longer-working group, they were instructed to “Think about the way you have felt over the past 4 week. Imagine that you were STILL doing the last job you had before you stopped working when answering the following questions”.
Work ability: On a scale of 0–10, with 10 representing work ability at its best and 0 representing completely unable to work.
Importance of work was assessed through branching logic in the survey. Thus, each question was applied to a subset of stably-working and no-longer-working groups.
Response category permitted more than one selection (e.g., “all that apply”). Thus, columns sum may exceed 100%.
Most women reported being able to carry out regular work activities at the time of metastatic diagnosis in both groups – those no-longer-working were instructed to “Imagine that you were STILL doing the last job you had before you stopped working when answering the following questions”. More women from the no-longer-working group reported that metastatic breast cancer had affected physical (n= 50, 82.0% vs n= 43, 63.2%, p< 0.05, Cramer’s V = 0.21) and mental abilities (n=43, 70.5% vs n=34, 50.0%, p< 0.05, Cramer’s V = 0.21) to perform work. At the time of the survey, women with MBC reported an overall work ability score of 5.3 (SD ± 3.3). Those no-longer-working reported a lower overall work ability score when compared to stably-working counterparts (3.0 vs 7.3 on a scale of 0–10, with a higher score representing higher work ability, p< 0.01, Cohen’s d = 1.73). In addition, no-longer-working women more often reported poor work ability when compared to stably-working women with respect to the physical (n = 42, 68.8% vs n= 7, 10.7%, p< 0.01, Cramer’s V = 0.66) and mental demands of work (n= 35, 57.4%, vs n= 8, 12.0%, p< 0.01, Cramer’s V = 0.57).
Work-related problems and benefits.
No differences between groups were observed regarding reported work-related problems and benefits (Table 3). Among surveyed women, 66.9% (n= 89) did not report any problems at work, while 33.1% (n= 44) reported at least one work-related problem due to metastatic cancer or its treatment (e.g., being laid off, harassment, reduced wages, etc.). The most common work-related problems faced by stably-working and no-longer working women were similar: reduction in wages (n= 7, 10.3% vs n= 4, 6.6%, respectively) and being intimidated (n= 5, 7.4% vs n= 7, 11.5%, respectively). Stably-working women also reported being demoted or not being promoted (n= 6, 8.8%), while no-longer-working women reported being laid off (n= 5, 8.2%) among the top three work-related problems. At least one work-related benefit (e.g., sick leave, unpaid time off, disability) was utilized by 82% (n=109) of surveyed women. The most reported work-related benefits utilized by stably-working and no-longer-working women were sick leave (n= 34, 50.8% vs n= 34, 55.7%, respectively) and short-term disability (n= 21, 31.3% vs n= 26, 42.6%, respectively). Stably-working women also reported unpaid time off (n=17, 25.4%), while no-longer-working women reported long term disability (n= 18, 29.5%) among the three most common benefits utilized. A free text response option was available regarding other problems and work-related benefits. Examples of problems reported included “being placed on a leave of absence”, “interviewing for positions and being judged”, “unable to participate in a better health plan”, “being fired”, “lack of understanding for taking sick leave/working a modified work schedule”, “being forced to resign”. Other benefits reported as free-text included “Family and Medical Leave Acta (FMLA)”, “receiving one paid day off a week”, “sick ‘days’ on and off for doctor appointments, chemo treatments, etc.”, “PTO donated from co-workers”.
Table 3.
Work-related problems and benefits reported by surveyed women with metastatic breast cancer
| Overall (n=133) |
Stably working (n=72) |
No longer working (n=61) |
p-value | |
|---|---|---|---|---|
| Encountered problems at work due to metastatic cancer or its treatment, (n, %) | (n=129) | (n= 68) | (n=61) | |
| Being demoted or not being promoted | 7 (5.4%) | 6 (8.8%) | 1 (1.6%) | 0.07 |
| Being given less desirable work assignments | 7 (5.4%) | 4 (5.9%) | 3 (4.9%) | 0.81 |
| Being intimidated | 12 (9.3%) | 5 (7.4%) | 7 (11.5%) | 0.42 |
| Being laid off | 5 (3.9%) | 1 (1.5%) | 5 (8.2%) | 0.07 |
| Being suspended | 1 (0.8%) | 0 | 1 (1.6%) | 0.29 |
| Denial of benefits/insurance | 6 (4.7%) | 3 (4.4%) | 3 (4.9%) | 0.89 |
| Denied reasonable accommodations | 7 (5.4%) | 3 (4.4%) | 4 (6.6%) | 0.59 |
| Encouraged to obtain pension | 5 (3.9%) | 1 (1.5%) | 4 (6.6%) | 0.14 |
| Harassment | 5 (3.9%) | 2 (2.9%) | 3 (4.9%) | 0.56 |
| Reduction in wages | 11 (8.5%) | 7 (10.3%) | 4 (6.6%) | 0.45 |
| Other | 12 (9.3%) | 5 (7.4%) | 7 (11.5%) | 0.42 |
| Received work-related benefits, (n, %) | (n=128) | (n=67) | (n=61) | |
| Compassionate allowance | 10 (7.8%) | 4 (6%) | 6 (9.8%) | 0.42 |
| Long term disability benefits | 31 (24.2%) | 13 (19.4%) | 18 (29.5%) | 0.18 |
| Short term disability benefits | 47 (36.7%) | 21 (31.3%) | 26 (42.6%) | 0.19 |
| Sick leave | 68 (53%) | 34 (50.8%) | 34 (55.7%) | 0.57 |
| Unpaid time off | 33 (25.8%) | 17 (25.4%) | 16 (26.2%) | 0.91 |
| Other | 21 (16.4%) | 13 (19.4%) | 8 (13.1%) | 0.34 |
Response category permitted more than one selection (e.g., “all that apply”). Thus, columns sum may exceed 100%.
Unmet information needs.
Stably-working and no-longer-working women reported similar unmet information needs (Table 4). When to think about stop working (n=22, 34.4% vs n=13, 20.3%, respectively) and where to find information about financial assistance (n= 14, 21.9% vs n= 16, 25.4%, respectively) were among the most reported unmet information needs. Stably-working women also looked for information on holistic medicine (n=18, 28.1%), health insurance (n=16, 25%), and applying for disability (n= 14, 21.9%). Among no-longer-working women other frequently reported unmet information needs were Counseling (n= 15, 24.6%), and who to talk about financial assistance (n=14, 22%).
Table 4.
Unmet information needs
| Overall (n=133) |
Stably working (n=72) |
No longer working (n=61) |
p-value | |
|---|---|---|---|---|
| Talk with family or friends about diagnosis | 10 (7.5%) | 7 (10.9%) | 3 (5%) | 0.225 |
| Talk with employer(s) or co-worker(s) about diagnosis | 10 (7.5%) | 8 (12.5%) | 2 (3.3%) | 0.061 |
| Talk with oncologist about work | 7 (5.3%) | 3 (4.7%) | 4 (6.6%) | 0.649 |
| Legal rights in workplace | 20 (15%) | 13 (20.3%) | 7 (11.9%) | 0.205 |
| When to think about stopping work | 35 (26.3%) | 22 (34.4%) | 13 (20.3%) | 0.082 |
| Applying for disability | 20 (15%) | 14 (21.9%) | 6 (10.2%) | 0.079 |
| Compassionate allowance and application | 14 (10.5%) | 10 (15.6%) | 4 (6.8%) | 0.123 |
| Cost of treatment | 19 (14.3%) | 9 (14.1%) | 10 (15.3%) | 0.852 |
| Where to find info about financial assistance | 30 (22.6%) | 14 (21.9%) | 16 (25.4%) | 0.643 |
| Who to talk about financial assistance | 25 (18.8%) | 11 (17.2%) | 14 (22%) | 0.498 |
| Short- and long-term disability insurance | 23 (17.3%) | 13 (20.6%) | 10 (17%) | 0.603 |
| Health insurance | 26 (19.5%) | 16 (25%) | 10 (16.7%) | 0.255 |
| Medicare and or Medicaid | 23 (17.3%) | 11 (17.2%) | 12 (20%) | 0.687 |
| Potential disease side effects | 9 (6.8%) | 5 (7.9%) | 4 (6.7%) | 0.787 |
| Potential treatment side effects | 10 (7.5%) | 5 (7.8%) | 5 (8.3%) | 0.915 |
| How to manage stress | 21 (15.8%) | 12 (19.1%) | 9 (15%) | 0.551 |
| Holistic medicine | 30 (22.6%) | 18 (28.1%) | 12 (19.7%) | 0.269 |
| Counseling | 21 (15.8%) | 6 (9.4%) | 15 (24.6%) | 0.023 |
| Spirituality | 17 (12.8%) | 7 (10.9%) | 10 (16.4%) | 0.374 |
| Childcare options | 5 (3.8%) | 4 (6.3%) | 1 (1.6%) | 0.189 |
| Transportation options | 12 (9%) | 4 (6.3%) | 8 (13.1%) | 0.193 |
Important information to receive.
Overall, women with MBC valued information about potential disease and treatment side effects (Table 5). Differently, stably-working women valued receiving information on when to think about stopping work (n= 45, 68,2%, p< 0.01), legal rights in workplace (n= 43, 65.2%, p< 0.01), and how to talk with employer(s) or co-worker(s) about diagnosis (n= 38, 57,6%, p<0.01), while for those no-longer-working, information on Medicare and Medicaid (n= 45, 93.3%, p< 0.05) and transportation options (n= 16, 26.2%, p< 0.05) were frequently reported as important.
Table 5.
Important information to receive
| Overall (n=133) | Stably-working (n=72) | No-longer-working (n=61) | p-value | |
|---|---|---|---|---|
| Talk with family or friends about diagnosis | 84 (63.2%) | 40 (60.6%) | 44 (73.3%) | 0.13 |
| Talk with employer(s) or co-worker(s) about diagnosis | 54 (40.6%) | 38 (57.6%) | 16 (27.1%) | 0.001 |
| Talk with oncologist about work | 61 (45.9%) | 37 (56.1%) | 24 (39.3%) | 0.06 |
| Legal rights in workplace | 65 (48.9%) | 43 (65.2%) | 22 (36.7%) | 0.001 |
| When to think about stopping work | 63 (47.4%) | 45 (68.2%) | 18 (30%) | <0.001 |
| Applying for disability | 68 (51.1%) | 42 (63.6%) | 26 (42.6%) | 0.018 |
| Compassionate allowance and application | 67 (50.4%) | 41 (63.1%) | 26 (43.3%) | 0.027 |
| Cost of treatment | 84 (63.2%) | 45 (69.2%) | 39 (63.9%) | 0.529 |
| Where to find info about financial assistance | 81 (61%) | 43 (66.2%) | 38 (62.3%) | 0.651 |
| Who to talk about financial assistance | 78 (58.6%) | 40 (62.5%) | 38 (62.3%) | 0.981 |
| Short- and long-term disability insurance | 64 (48.1%) | 40 (61.5%) | 24 (40%) | 0.016 |
| Health insurance | 87 (65.4%) | 47 (73.4%) | 40 (66.7%) | 0.41 |
| Medicare and or Medicaid | 85 (64%) | 40 (78.1%) | 45 (93.3%) | 0.016 |
| Potential disease side effects | 106(79.7%) | 50 (82.8%) | 56 (93.9%) | 0.073 |
| Potential treatment side effects | 109 (82%) | 53 (62.5%) | 56 (75%) | 0.134 |
| How to manage stress | 94 (70.7%) | 45 (70.3%) | 49 (81.7%) | 0.14 |
| Holistic medicine | 73 (54.9%) | 36 (56.3%) | 37 (61.7%) | 0.54 |
| Counseling | 70 (52.6%) | 31 (48.5%) | 39 (63.9%) | 0.081 |
| Spirituality | 62 (46.6%) | 31 (48.4%) | 31 (50.8%) | 0.79 |
| Childcare options | 16 (12%) | 8 (12.5%) | 8 (13.1%) | 0.618 |
| Transportation options | 22 (16.5%) | 6 (9.4%) | 16 (26.2%) | 0.013 |
As a woman living with metastatic breast cancer, is there anything else you would like to tell us?
Our respondents were also asked open-ended questions. The responses to the question “is there anything else you would like to tell us?” brought more clarity on their needs. We grouped the quotes in 3 main domains of response noted: challenges, needs, and feelings (Supplementary information 2). One respondent described that MBC “(…) completely turns one’s world upside down (…)”, while another mentioned “It seems as though we are forgotten, since we can’t be cured.” Living with MBC can be a difficult experience and having to quit the workforce may be an additional challenge: “Quitting work was the most difficult part of my journey.”
Discussion
As individuals with MBC live longer, they may want and/or need to continue working. Their expectations and needs may differ substantially from individuals receiving treatment with curative intent, where the ability and limitations to work would tend to improve over the time following the end of curative treatment [20]. This study presents the results of a survey designed to capture the unmet needs of survivors living with MBC related to work ability, and highlights important issues imposed by dealing with this treatable but generally incurable disease. Not surprisingly, the women no-longer-working were older, with more time having passed since metastatic breast cancer diagnosis and reported more life interference related to metastatic breast cancer. These results are not unexpected considering that individuals living with MBC typically receive multiple lines of treatment, often extending up to the end of life [4]. As time passes, the cumulative impact of multiple lines of therapy as well as progressive disease may affect different aspects of these patients’ lives, ultimately interfering with the ability to work. They also reported lower work ability as a whole and poor work ability with respect to the physical and mental demands of work at the time of survey. These findings suggest that the decision to stop working may represent a subsequent event driven by cancer progression [6]. All surveyed women were interested in information on potential disease and treatment side effects. Although no-longer-working women valued information on Medicare and Medicaid and transportation options, and stably-working women reported that it was important to receive information about employment-related topics such as how to manage the disease at work environment and how to enroll for benefits. The differences indicate that information needs may change among survivors with MBC depending on employment status, and providers should be aware of these differences. These findings also highlight the importance of offering resources to empower survivors living with MBC to manage their financial and insurance issues earlier in the disease trajectory [21,22], especially considering that financial burden can negatively affect health-related quality of life and increase distress [15,22]. While maintaining employment after a breast cancer diagnosis is associated with wellbeing and increased health-related quality of life [23,24]. Multidisciplinary interventions could help to address the patients’ needs and facilitate work environment interactions [22,25]: distress screening, tailored physical exercise training, pain and treatment side effects management, vocational orientation are strategies that have been found to benefit cancer survivors in general [22–26]. Additional studies promoting interventions to facilitate MBC patients to navigate their employment and financial health are needed [21–25].
Among those considering work to be important, women working stably reported the current importance of work was related to financial and/or insurance reasons, while the importance of work for no-longer-working women was related to having a worthwhile job. Our findings suggest that most survivors living with MBC who continue to work do so for financial or insurance reasons, although working was also considered important because it provided meaning, feelings of worth, distraction, and social interaction. Symptom burden may also have a major impact in determining whether participants continued to work. In our sample, many of those who were no-longer-working stated that they could no longer work due to unmanageable symptoms and other problems in their workplace. More than three-quarters of those who did manage to continue working still experienced symptom interference, and almost a third performed modified or restricted work duties. Furthermore, nearly one-third of respondents also reported at least one problem at their workplace such as being denied accommodations, being laid off due to cancer, etc. Such problems might be more common in a more diverse population with a different racial/ethnic, education or income mix [27–30] – our respondents were majority White, college educated and with incomes exceeding $75,000. Samuel et al. studying racial differences in employment and cost-management attitudes among survivors living with MBC, described higher prevalence of work change by women of color when compared to white counterparts, as well as higher treatment interruption rates as a strategy to cope with the financial burden among the same group [30]. Reported problems at work highlight the ongoing need for interventions specifically addressing survivors living with MBC.
Limitations include a predominantly White and well-educated population. The sample size is limited (n=133), and when separating the cohort into two groups, we often observed small numbers. Thus, the differences between the groups may be difficult to observe. Meanwhile, this study can be considered as a pilot, and our results can be utilized to support future studies seeking to evaluate the differences between stably-working and no-longer-working women with MBC. Additionally, the use of a listserv means that we cannot calculate a response rate, and respondents self-selected to complete the survey, which might introduce a bias in over-sampling individuals who are actively searching for information and reporting concerns about work outcomes or income, increasing the number of reported problems with work. Given the dearth of research on employment needs for MBC, however, the intent of the study was not to elucidate the magnitude of the problems, but instead to identify areas for further investigation and future intervention. Because of this, we did not specifically query respondents about current symptoms, symptom burden or quality of life. Despite having free response boxes available for open-ended responses regarding information needs and problems, this is a heterogenous population and additional needs and problems exist beyond what this survey identified. For instance, we did not capture information about changes from full to part-time employment, or whether reaching retirement age was a driver of the change in employment.
Important take-aways from this survey include an improved understanding the motivations of those women who want to continue working while living with MBC. This information could be used to (1) fuel future research prospectively evaluating MBC who are initially working at diagnosis, but including clinical information about treatment, performance status and sites of metastasis as well as symptoms, quality of life and information about changes in work and work ability, as well as (2) to tailor effective interventions to address modifiable factors negatively impacting work ability. This study expands the breadth of knowledge about the problems faced, importance, and information needs regarding working while living with MBC. The identified topics and problems provide insight on more areas for investigation as well as what challenges and information can be targeted by oncology clinicians to improve the working lives of this unique population.
Supplementary Material
Funding:
This work was supported by the NCI Cancer Center Support Grant P30 CA014520 and the SMPH Shapiro Summer Research Program.
Footnotes
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Declarations
Conflicts/Disclosures: The authors have no conflicts of interest to declare that are relevant to the content of this article.
Availability of data and material: The data generated and analyzed during the current study will be available upon direct request to the corresponding author (MES) to ensure that we protect subject’s privacy.
Code availability: Not applicable.
Ethics approval: Approval was obtained from the Institutional Review Board of the University of Wisconsin. The procedures used in this study adhere to the tenets of the Declaration of Helsinki.
Consent to participate: Written informed consent was waived by the institutional review board (IRB).
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