Managing Work and Cancer Treatment: Experiences Among Hematological Cancer Survivors

Abstract

Purpose

To characterize the employment status of hematological cancer survivors with an informal caregiver, from diagnosis through the first 6 months of treatment.

Methods

Using a mixed methods approach, semi-structured interviews with hematological cancer survivors were conducted within six months of starting cancer treatment. Interviews assessed cancer treatment status, barriers and facilitators of employment, financial and insurance status, and relationship with the primary caregiver. These results are part of a longitudinal study of cancer survivors and informal caregivers.

Results

171 patients were enrolled. Within 6 months of beginning cancer treatments, 35% were no longer employed. Reasons to remain employed included financial need, employee benefits, and a sense of purpose and normalcy. Employer accommodations and supportive colleagues facilitated continued employment. Logistic regression revealed that higher household income, a desire to work, non-physical job tasks and congruent survivor-caregiver communication were associated with greater odds of remaining employed.

Conclusions

Within six months of commencing cancer treatment, most hematological cancer survivors had maintained employment. Because of the limitations imposed by the physical stress of cancer treatments, as well as the need to maintain employment to continue receiving employee benefits to cover such treatments, hematological cancer survivors would likely benefit from employment accommodations that are sensitive to their unique needs.

Introduction

Employment outcomes among cancer survivors has become an important outcome for several reasons, including the economy’s ability to retain productive workers and the continuing reality that most Americans obtain their health insurance through their employers¹. Maintaining labor market participation is required by many patients to retain access to and continuity of care². Moreover, the rise in the numbers of survivors is an indicator of the increased success of earlier detection and cancer treatment. By 2026, estimates suggest there will be 20 million cancer survivors, an increase of almost 30% from 2016 ³. Thus, cancer survivors comprise a significant segment of the working population.

Early detection and improved treatment options have enabled many cancer survivors to decrease the amount of time spent out of the workforce after a cancer diagnosis, with a growing number of survivors opting to work throughout treatment⁴. Minimizing the impact of a cancer diagnosis and treatment on employment guards against lost income or disruption of health insurance benefits ^5,6. For example, a recent population based analysis of employment outcomes among cancer survivors ⁷ found that within the first year of diagnosis, employed survivors lost an average of 5 weeks worth of paid work. These interruptions can have additional deleterious implications for promotion and earning trajectories ⁸. However, cancer survivors whose employers accommodate their unique needs, including flexible expectations about productivity, job roles and workday schedules, as well as those who offer employer-sponsored healthcare plans, paid sick leave, and Family Medical Leave benefits, experience better outcomes in terms of productivity, absenteeism, and maintenance of employment status ^6,9.

A number of studies have evaluated employment outcomes among cancer survivors, but these studies have focused primarily on solid tumors, and particularly, breast cancer ^10–12. Employment-related issues confronting hematological cancer survivors are relatively understudied despite their higher likelihood of leaving the workforce than survivors of other cancers (e.g., breast, prostate, melanoma, thyroid and uterine cancers) ¹³. Hematological cancers have a variety of subtypes that differ in terms of age at onset, aggressiveness, and survival rates¹⁴. However, treatment advancements, including options for curative treatment, have dramatically improved 5-year survival rates among myelomas and non-Hodgkin’s lymphoma, cancers typically diagnosed in mid-life¹⁵. Further, while the median age at diagnosis for these hematological subtypes is 67–70 years ^16,17, approximately 40% of survivors are diagnosed between 35–64 years ^16,17, and thus are at risk for costly employment disruptions. Hematological cancer patients also often experience nonlinear care trajectories characterized by lengthy periods of cancer remission and then relapse¹⁵. Nonlinear care trajectories complicate the ability of survivors to plan for and cope with disruptions to employment, factors that put this group at greater risk for employment strain¹⁸.

Understanding how hematological cancer survivors cope with cancer treatment initiation and employment demands are lacking ¹⁹. Using a mixed methods longitudinal study of hematological cancer survivors who had an informal caregiver, we examine how facets of survivors’ jobs, communication with informal caregivers, and demographic characteristics are associated with survivors’ employment status. Informed by the Transactional Model of Stress and Coping (TMSC), this study explored the barriers and facilitators to maintaining employment among hematological cancer survivors within the first six months of initiating cancer treatment. Specific research questions addressed the following: a) what is the employment status of hematological patients who had a caregiver after the initiation of cancer treatment and, b) are there demographic, familial (i.e., communication), or employment factors that differentiate between those who maintain employment and those who stop working.

Methods

Participants

Recruited to this longitudinal study were 171 cancer survivors. Study participants were adults (18+years) diagnosed with 1 of 3 hematological cancers (Multiple Myeloma, Non-Hodgkin’s Lymphoma, Chronic Lymphocytic Leukemia) at any stage, who had begun initial systemic treatment, were employed immediately prior to their cancer diagnosis and could identify an informal caregiver who could also participate. Survivors were excluded if they had cognitive impairments, were receiving hospice care, spoke a language other than English, or did not have an informal caregiver. Approval from the institutional review board for human subjects research was obtained.

Recruitment

Survivors were recruited from eight oncology clinics located in one of two states, Pennsylvania or Virginia. Survivors were identified using electronic medical records. Preliminary eligibility was confirmed by clinic staff (cancer diagnosis, no cognitive impairment or hospice care) and these patients were mailed invitation letters followed by a phone call from research staff to recruit survivors. Interested survivors provided contact information for an unpaid caregiver and once eligibility was determined baseline interviews were scheduled. Of the 818 individuals contacted, 21% declined participation, 57% were ineligible (primarily due to unemployment or absence of a caregiver) and 21% provided informed consent. The final sample size was 171 patient-caregiver dyads.

Interviews

Survivors agreed to be interviewed up to 5 times across a 2-year period. Interviews with survivors were conducted either in the participants’ home or a private room at the cancer center. The current analysis is based on baseline data only. Baseline interviews, completed between 2013–2016, were semi-structured, used standardized probes and lasted approximately 90 minutes. Interviews were audio recorded and performed by trained graduate level research staff. Interview questions were designed to explore participant’s current treatment status, difficulties and challenges associated with employment, financial and insurance status, and the relationship and quality of communication between the patient-caregiver dyad since diagnosis. In addition to open-ended research questions, the interview included standardized scales (see below). Participants were provided a $50.00 honorarium.

Job Content, Satisfaction and Commitment Scales

Participants were asked to complete two scales assessing job content (physical and mental task loads) ¹² and job attachment as measured by satisfaction and commitment ²⁰. Individual items were scored on a 4 point Likert scale (all/none of the time or strongly agree/strongly disagree). These measures have been used previously to assess job characteristics among cancer survivors ¹². For this analysis responses were dichotomized (all or most vs. some/none of the time; agree/ disagree).

Employment Pre-and Post Treatment Initiation

Employment status was assessed with a single question at the time of the interview. All survivors were employed prior to diagnosis thus providing a pre-diagnosis employment variable for survivors. Employment was defined as receiving pay and/or benefits received from paid work; individuals who were on sick leave were considered employed. We also obtained information about the kind of employment both pre-and post diagnosis.

Caregiver Employment

Whether or not the caregiver was employed was assessed at the time of interview and is included as a potential covariate.

Communication Congruence

The Cancer Communication Assessment Tool for Patients and Families (CCAT-PF)²¹, developed for use with cancer patients and survivors, was administered to measure the level and type of communication concordance or discordance regarding cancer treatment and care decisions between survivors and caregivers. This measure represents the differences between survivor and caregiver perceptions and expectations. Both survivors and caregivers independently completed the scale. The final absolute difference score has a possible range of 0–90 with higher scores indicating greater communication discordance²¹.

Data analysis

Pearson χ² statistics were used to compare employment status with job content, satisfaction and commitment scale items. Individual scale items that were significantly associated with employment status at the bivariate level were entered into a logistic regression model with key demographic variables of age, annual household income, cancer type (NHL, MM, CLL), gender, race, marital status, caregiver employment status (yes/no) and communication congruence.

Audio recordings for baseline interviews were transcribed verbatim. A codebook was developed using a directed qualitative content analysis designed to quantify answers from semi-structured interviews into an exhaustive list of codes that represent the range of answers provided by all interview participants. This method has been used extensively to analyze large samples of semi-structured interview data ^22,23. All interviewers and two investigators independently read and coded the first ten transcripts to identify an exhaustive list of response codes for each open-ended question. The team convened to compare and contrast individual open codes, developing an unanimously agreed upon set of codes that was used to code the next set of ten interviews. This process was iteratively repeated until saturation and a unitary set of codes was established. A study coding manual was developed and guided the coding thereafter. The research team met weekly to resolve any questions and to guard against coder drift (departures from the agreed upon code definitions). The code categories included in this analysis describe survivor responses to questions about working status and the experience of barriers and facilitators to employment.

Results

A total of 171 participants were enrolled at baseline and were primarily male (63%), white (71%), married or partnered (75%), and were on average 54 years old (SD=12.1). Survivors had generally high levels of attained education with 45% having completed a bachelor’s degree or higher and 63% reported an annual household income of $60,000 or higher. The majority were diagnosed with Non-Hodgkin Lymphoma (n=107; 63%), 25% with Multiple Myeloma (n=43) and 12% with Chronic Lymphocytic Leukemia (n=21). Sixty-three percent of caregivers were employed at baseline. The mean communication congruence score was 24.5 (SD=7.2) with a range of 10–47. Caregivers were mostly female (74%), white (73%) and married or partnered (83%). Caregivers were highly educated with over 70% reporting completion of a bachelor degree or higher and 61% (n=104) reporting an annual household income over $60,000. Full patient sample demographic data is displayed in Table 1.

Table 1.

Patient Demographics

Variable	(n=171) n(%)
Education Level
Did Not Graduate High School	8 (5)
Graduated High School	86 (50)
Technical School or College Degree	77 (45)
Sex
Male	108 (63)
Female	63 (37)
Income
Less than $15,000	12 (7)
$15,000 to less than $29,999	11 (6)
$30,000 to less than $49,999	20 (12)
$50,000 to less than $74,999	32 (19)
$75,000 or more	87(51)
Missing	9 (5)
Race
White	122 (72)
African American or Black	37 (22)
Multiracial or Other	11 (6)
Marital Status
Married or In a Relationship	129 (76)
Never Married	21 (12)
Separated, Widowed or Divorced	21(12)
Employment Prior to Diagnosis (Survivor)
Yes	171 (100)
Employment within 6 months of treatment start (Survivor)
Yes	111 (65)
Health Insurance
Group plan through employer	105 (61)
Medicaid/Medicare	44 (26)
Uninsured	13 (8)
Self-insured	21 (12)
COBRA	3 (2)
Cancer Type
NHL	107(63)
MM	43(25)
CLL	21(12)
Site
Virginia	134 (78)
Pennsylvania	37 (22)
Age
	54.8 years (SD = 12.1)
Caregiver Employment within 6 months of treatment start
Yes	108 (63)
Communication Congruence
	24.5 (SD=7.2)

Working Status

Immediately prior to the patient’s cancer diagnosis all survivors reported working an average of 39.6 hours each week (SD=16.5). Within six months of beginning their first cancer treatment, 35% were no longer working. The primary reason for discontinuing employment was feeling too sick and/or being physically unable to work (n=45; 75%). Survivors also reported physician recommendations to stop working (n=13; 22%) and a lack of employer accommodation (n=8; 13%). Employer sponsored health insurance plans were accessible to 55% of survivors with an additional 19% receiving health insurance from a family members’ employer plan. Access to paid sick leave was reported by 48% and 8% of survivors reported access to employer sponsored disability benefits. Among the 65% of survivors who maintained employment, financial reasons (n=70; 63%) and the ability to maintain eligibility for employee benefits (n=11; 10%) were described as reasons they chose to keep working.

Continuing to Work Throughout Treatment Initiation

Discussions about working while on treatment were expressed as either factors that facilitated or challenged the decision to remain at work. The two primary factors that cancer survivors credited with helping them to remain at work were employer accommodations and supportive colleagues. Table 2 displays the most common ways in which employers were accommodating, all of which were alterations to when and how work was completed.

Table 2.

Accommodations By Employers

(n=111)	n(%)
Shifted work schedule	n=77 (69)
Leave provided to attend appointments	n=55 (50)
Decreased work related travel expectations	n=24 (21)
Telecommuting	n=30 (27)
No accommodations sought	n=26 (23)

In addition to income and employee benefits, survivors who remained employed also reported that their jobs provided a sense of purpose and personal fulfillment (n=64; 58%) and served as a way to maintain normalcy in their daily routine (n=76; 68%). Survivors discussed the importance of colleagues offering social support (n=52; 47%) in a range of different ways including respecting the survivors’ privacy, providing an outlet for expressing emotions or opportunities for distraction from cancer related worry. The following quotes demonstrate the responses provided by participants.

Everyone was one hundred percent, do what you have to do, if you need help doing something, we’ll take care of it. Don’t worry about anything, that’s, that’s how it’s been. Um, from the corporate level, down to my boss at my location, to my coworkers to my clients, yes, support, one hundred percent. Patient 101

It was a little bit difficult during um, treatment just from the standpoint that I was tired a lot. Uh, fatigue. Uh, but my employer was very supportive also. So uh, they didn’t dump a lot of things on me. They kind of let me alone, left me alone, and understood what I was going through so, I felt very fortunate. Patient 88

Despite employer and colleague support, survivors who maintained employment after beginning cancer treatment described a series of key barriers that hampered continued employment. Survivors discussed difficulties dealing with symptoms and side effects from treatment (n=63; 57%). Moreover, in addition to the toll of symptoms and side effects on the physical aspects of survivors’ daily lives, the indirect effects of increasing absenteeism (n=24; 21%), noticeable decreases in personal productivity (n=10; 9%) and having a stressful, highly demanding job (either physically or mentally demanding) (n=22 ; 20%) were described as causing survivors to worry about the viability of remaining at work. Only 13% of employed survivors did not report experiencing any barriers to continued employment. The following quotes represent these conversations regarding the challenges to remaining employed throughout treatment initiation.

I would just say a little sluggish and tired. And you know, my, I wasn’t doing my work up to my performance really. Patient 91

I have a lot of doctor’s appointments so I’m off more than I’ve ever been. Attending doctor’s appointments, of course the chemotherapy. That’s basically three days that week. So I think that’s the biggest challenge is still, to me, the demand of the job and be off. Yeah. Cause the job is pretty intense. Patient 20

Associations with Employment Status

Table 3 presents survivor responses to individual scale items examining job content and commitment. No significant bivariate differences were found for job satisfaction items. Pearson χ² statistics identified six scale items that had significant bivariate relationships to survivor employment status: the amount of physical effort (x²=12.47(1): p<.0001), stooping, kneeling, crouching (x²=4.61(1): p=.032), and factors associated with job commitment (being a perfectionist about their work (x²=4.51(1): p=.034), arrive at work early (x²=5.78(1): p=.016) and working regardless of monetary need (x²=9.16(1): p=.002)).

Table 3.

Job Content, Commitment and Satisfaction Responses

Item	All/Most of the time %
My job requires:
Physical effort	361
Lifting Heavy loads	18
Stooping kneeling crouching	311
Intense concentration or attention	86
Analyze data or information	73
Keep pace with others	59
Learn new things	59
Good eyesight	84
I’m a perfectionist about work	881
I lived, ate, breathed my job	29
Involved personally in my work	86
Stay overtime to finish, without pay	72
You can measure a person by how good a job they do	88
Arrive at work early	751
Other activities more important than work	73
Often feel like staying home from work	30
Avoid extra duties	14
Satisfaction from job	45
Most important things involved work	30
Mornings fly by	85
Thinking about next work day	54
Felt depressed when I failed at my job	53
Working regardless of monetary need	671
Work was only a small part of who I am	67
Kick myself for work mistakes	36

¹Associations with working status p< .05

A logistic regression analysis was conducted to examine the outcome of survivor employment status (yes/no) after starting initial treatment with the following independent variables: job content and commitment items significant at the bivariate level, demographic factors of age, annual household income, gender, race, cancer type, and marital status, caregiver employment and communication congruence. The logistic regression model was significant (x²=65.7 (15); p<0001) and is displayed in Table 4. Higher household income (OR=1.44; p<0001) and high job attachment as expressed through the desire to work regardless of monetary need (OR=6.3; p<0001) were both associated with greater odds of working. More congruent communication with family (e.g., having shared understandings regarding cancer treatment and care decisions) was also associated with maintaining employment (OR=0.92; p=.03). A job that required substantial physical effort was associated with a 1 in 5 chance of being unemployed within 6 months of cancer treatment initiation (OR=.19; p=.008).

Table 4.

Logistic Regression Assessing Patient Employment Status (n=171)

Dependent Variables	β	Odds Ratio	95%CI
1 Married or Partnered	0.41	1.51	0.49–4.54
2 Cancer Type
Non Hodgkin’s Lymphoma	0.01	1.01	0.24–4.23
Multiple Myeloma	−0.69	0.50	0.11–2.24
3 White	−1.08	0.34	0.11–1.02
Job Content and Commitment
Physical effort	−1.62	0.19	0.06–.66
Stooping, kneeling, or crouching	0.12	1.12	0.35–3.55
Perfectionist	−.1.23	0.29	0.05–1.60
Arrive early at work	−0.63	0.53	0.61–1.73
Working regardless of monetary need	1.85	6.39	2.46–16.5
Income	0.36	1.44	1.17–1.75
Age	−0.02	0.98	0.94–1.02
Male	0.42	1.52	0.59–3.93
Education	−0.18	0.82	0.59–1.14
Caregiver Employed	0.18	1.19	0.46–3.06
Communication Congruence	−0.08	0.92	0.87–0.99

¹compared to never married, divorced, widowed

²compared to Chronic Lymphocytic Leukemia

³compared to Africa American, Multiracial and Other

Discussion

Most of the survivors remained employed within the first six months of treatment initiation. Cancer survivors who maintained employment were less likely to report work that entailed physically demanding tasks, were more likely to report higher annual household income, and were more likely to respond that they would work regardless of financial need. They also reported better communication regarding cancer treatment and care decisions with their informal caregiver. Viewed through the framework of the Transactional Theory of Stress and Coping, employment represents both a primary coping effort to maintain financial stability throughout cancer treatment and a secondary, meaning-based coping effort to maintain a sense of self outside of the cancer patient label. These are discussed in detail below.

Maintenance of Financial Stability

Survivors cited financial stability and maintenance of benefits, particularly healthcare, as the primary reasons for maintaining employment through treatment. These results are in line with prior literature^6,24 and are unsurprising, as even out of pocket costs incurred for cancer treatment and lost wages can be quite significant²⁵. Also, similar to recent research^6,9, employer accommodations were credited with a considerable role in enabling survivors to remain employed throughout treatment initiation. Survivors described key accommodations including flexible schedules, leave allowances to attend appointments, and telecommuting options. Previous studies have identified concerns among survivors in which changes in work productivity or asking for accommodations may result in job loss ^5,9. While 23% of survivors in our sample did not ask for accommodations, which may be due to apprehension or fear, this was not specifically mentioned in our qualitative interviews.

Survivors in our sample who reported lower annual household incomes and greater amounts of physical labor as part of their jobs, had lower odds of being employed within six months of treatment initiation. Survivors who have greater physical tasks as part of their jobs may be a particularly vulnerable subgroup of hematological cancer survivors and may benefit from employer accommodations and pre-planning of return to work expectations. Because these jobs also tend to indicate lower wage potential, this population of survivors also have a higher risk of losing insurance coverage and access to quality care. Survivors in our sample reported financial concerns and maintenance of benefits as the primary reasons for continued employment. Therefore, improved communication and pre-planning of employer/employee work expectations including accommodations that can eliminate or minimize physically difficult tasks need to be considered.

Meaning-based Coping through Work

Survivors discussed using employment to cope with the cancer diagnosis. Working provided a sense of fulfillment and routine and was considered critical to retaining a sense of normalcy, even among those who were no longer working. Indeed, survivors who had stopped working after treatment initiation cited these benefits as reasons for contemplating a return to work. Positive associations between employment, quality of life, self-esteem, and satisfaction have been shown among cancer survivors ²⁶. Swanberg et al ⁶ found that breast cancer survivors reported a sense of responsibility that included the need for normalcy as an influential reason for continued employment throughout cancer treatment. Working, in this sample, represented a form of meaning based coping that was reinforced through, a) the provision of collegial social support and, b) maintenance of a sense of self outside the label of ‘cancer patient’.

Collegial Social Support

Social support (or lack thereof) has been associated with critical health outcomes among cancer survivors including symptomatology, depression and quality of life ^27–29. In our sample of survivors, 47% described social support from colleagues as an important aspect of remaining at work. Indeed, others have shown that survivors who disclose their diagnosis to work colleagues are more likely to continue working during treatment ³⁰. While survivors who do not work after a cancer diagnosis may have lower functional status and ongoing symptom burden, social psychological factors may also be contributing. Lindbohm et al found that breast cancer survivors who retired early or did not go back to work also reported lower supervisor and colleague support ³¹ after controlling for anxiety, depression, pain, and fatigue.

Sense of Self

We found that survivors who stated that they would work regardless of financial need were more likely to remain working throughout the six months of treatment. Together with participant descriptions of work as providing stability, normalcy and reprieve from the sick role, our sample suggests that beyond financial stability, work provides a form of meaning-based coping in which survivors are able to maintain a sense of self. However, this is likely to depend on many interrelated socioeconomic and individual factors. For example, individuals who have poorer labor market opportunities ⁸, job types that rely on physical tasks with little room for accommodation, or individuals who have lesser attachments to work, may not see the benefits of remaining employed. There may even be negative consequences. In a study of breast cancer patients, stress increased with return to work when they were unable to adequately alter their personal expectations or job tasks, ¹¹ offering a possible explanation of the association of perfectionism with unemployment six months post treatment initiation. Further research is required in order to fully understand the ways in which employer accommodations can play a role in supporting survivors who wish to remain working or return to work after the initial treatment transition.

Finally, we identified that shared or congruent communication with caregivers regarding the expectations of cancer treatment and care-related decisions were associated with greater odds of remaining employed. Good communication is a cornerstone for coping in the family system³² providing opportunities for the needs and expectations of individual members to be understood. Thus, it is not surprising that having shared understandings and expectations regarding cancer treatment and care decisions are associated with greater odds of working. Such communication would enable caregivers to understand and provide the supports needed by survivors to continue their employment. However, we cannot rule out reverse correlation in that having fewer barriers to return to work may be associated with better communication.

This study has limitations. Employment at the time of the cancer diagnosis was an inclusion criterion for hematological patients, therefore these results exclude experiences of cancer patients who may have been experiencing more severe symptoms prior to diagnosis that may have already limited their ability to work. Employer accommodations are likely influenced by additional employer based characteristics that were unmeasured such as employer size and job type and role within an organization as these factors may affect the extent to which different types of job modification or other accommodations are available or possible. However, although physically demanding jobs are correlated with increased rates of disability, they were not associated with likelihood of quitting ¹³. Finally, given the open-ended and participant driven nature of the questions, the way in which participants characterized employer accommodations was likely different depending on the nature of the job.

Conclusion

In our sample of hematological cancer patients, employment was described as playing a crucial role in their attempts to maintain financial and psychological stability during the initial treatment transition. Future analyses from this longitudinal study will seek to identify how these initial employment choices change in response to subsequent treatment outcomes over the course of the cancer trajectory, with emphasis on identifying individuals who may be at greater risk.