Financial burden and quality of life among early‐onset colorectal cancer survivors: A qualitative analysis

Abstract Background Colorectal cancer (CRC) diagnosed at ages <50 years old (early‐onset CRC) has been increasing in the United States, resulting in a growing number of early‐onset CRC survivors who may face significant financial and quality of life (QOL) challenges. Objective Identify themes from a patient advocate discussion about the impact of CRC on financial burden and QOL among early‐onset CRC survivors. Methods We conducted a semi‐structured, stakeholder discussion among 14 early‐onset CRC survivors and one caregiver who were members of an advocacy group. The discussion focused on the financial and overall QOL impacts of CRC. The meeting was recorded, transcribed and coded in ATLAS.ti, using a thematic analysis approach. Results Cancer stage at diagnosis among advocates with CRC ranged from 2 to 4; about half of the attendees had no evidence of disease, and about half were undergoing treatment. Employment (career trajectory, lost wages, health insurance/benefits, performance) emerged as the dominant theme of the financial impacts discussion. Lifestyle impacts of disease and survivorship included both emotional and physical side‐effects. Diagnosis experience, missing information about CRC treatment and side‐effects, financial stress and strain on relationships were the primary themes for the overall QOL impacts. Conclusion Given the growing incidence of CRC in those under 50, it is particularly important for providers to be aware of these patients' financial, emotional and QOL needs, and to develop care plans that specifically address these areas of concern for early‐onset CRC survivors.


| INTRODUC TI ON/PURP OS E
In 2019, over 140 000 cases of colorectal cancer (CRC) will be diagnosed in the United States and there is a growing number of cancer survivors who report unmet needs. 1,2 While the incidence of CRC among older adults has been declining, the incidence of early-onset (defined as being diagnosed under age 50) CRC is on the rise in the United States. 3 CRC survivors of all ages may experience profound physical and emotional side-effects, impacting their overall quality of life (QOL). The physical side-effects of CRC include long-term nerve damage, incontinence, problems with fertility, changes in sexual function and lifestyle changes associated with ostomy. [4][5][6][7][8][9] Emotional side-effects result from responses to the physical side-effects, stress, changes in relationships, confidence and changes in identity. 9 It is possible that younger CRC survivors experience these side-effects differently than older survivors. Further, those diagnosed with CRC at a young age may face difficult financial challenges. 10 A systematic review of work-related issues among young cancer survivors found that those who returned to work struggled with reduced work productivity that ultimately impacted their income. 11 A cancer diagnosis results in high financial burden, [12][13][14][15][16] and there is an increase in the risk of bankruptcy following a cancer diagnosis. 16 For cancer patients who are <50 years old, the risk of bankruptcy following their cancer diagnosis is particularly high.
To address the unique needs of the growing population of earlyonset CRC patients, health systems must understand the specific challenges that these patients face. This includes both the shortand long-term consequences associated with CRC and its treatment. While prior studies have examined QOL indicators in CRC survivors, [17][18][19][20] few studies have evaluated how CRC may specifically impact the QOL of early-onset CRC patients. Similarly, little is known about the drivers behind the financial stress that is particularly high in those diagnosed with cancer under the age of 50.
This study examines QOL and financial impacts of a cancer diagnosis among early-onset CRC survivors.

| Study setting
In December 2015, HSF, ABH, SM, AD and EBB met with a group of early-onset CRC survivors and one caregiver who were at-

| Meeting structure
Prior to the meeting, researchers specializing in CRC (HSF, ABH and AD) met to discuss how to best use the opportunity of meeting with the advocates. Based on gaps in the existing research, the researchers decided to ask the panel about concerns and challenges related to employment, financial impacts, lifestyle and resumption of meaningful activities. A researcher trained in patient engagement and qualitative research (SM) moderated and used these topics to guide the 2-hour patient advocate meeting using focus group methods to engage all advocates in a discussion of these topics. 24 In order to provide context for the meeting, one researcher (HSF) presented information on the research that led up to the meeting and described the demographics of a cohort of 16 000 people diagnosed with CRC. 2 HSF explained that the purpose of the meeting was to hear directly from the advocates about research topics that were important to them that could be studied in this large cohort of CRC survivors.
Starting the meeting with a presentation on the facilitators' research could have introduced a small bias, but providing context for the researchers experience and reason for the meeting was important for setting the stage to elicit feedback. The presentation was followed by a semi-structured discussion led by the moderator, SM (See Figure 1). To foster discussion, SM used probes to solicit additional information without biasing advocate responses. Each advocate was asked to respond to ensure that all members had an opportunity to provide input about each topic. When non-verbal communication was expressed by advocates throughout the discussion, it was noted.
The meeting recording was transcribed, and all names were masked using pseudonyms. The final transcript was reviewed for accuracy by comparing the transcript against the original recording.

| Generating codes and identifying themes
Two investigators (SM and EBB) conducted an inductive qualitative analysis of the discussion using a thematic analysis approach. [25][26][27] First, the transcript was reviewed for overall understanding and first impressions. 28 Then, the first 10 minutes of the discussion was opencoded 26 independently by each investigator to identify patterned responses to generate initial codes. The resulting code lists were compared and discussed, and a master code list was created that reflected the themes identified by each coder in a standardized manner. 21 The transcript was then imported into ATLAS.ti (Version 8), and the final master code list was used to independently code the entire meeting. Coding was conducted using a thematic analysis approach. 27 Consistent with this method, we iteratively compared coding, revised codes to establish agreement among analysts and recorded the evolving definitions of the existing codes, adding new codes that emerged as necessary. When there was disagreement, it was resolved by discussion and referencing of the code definitions.
Over the course of the team coding process, the researchers sorted many of the codes into sub-themes that were grouped under overarching themes. As a final step, coding was reviewed by the study team for consistency. Overarching themes that carried the most importance in relation to the research questions and contributed to the conceptual map emerged from this process (See Figure 2).

| Themes
Several sub-themes emerged within two overarching themes: financial impacts and QOL.

Career trajectory
Advocates described a CRC diagnosis impacting their employment at pivotal moments in their careers. They described how CRC had interrupted their career trajectories, slowed their professional development and impacted their inability to take on additional

| Lost earning potential
Colorectal cancer resulted in lost earnings for advocates, as well as a setback in their earning potential. The diagnosis interrupts career trajectories as described above and is compounded by the cost of treatment. One advocate expressed gratitude for his continued employment as a financial analyst, but noted that complicated disability policies, insurance expenses and other outside costs related to CRC kept him at a static income level. He said: The amount I pay for my cost-share portion of the premium is going up every year. My deductibles and co pays and out of pocket maxes are going up each year. My salary isn't changing that much and the portion that disability pays is locked in to what my salary was two years ago and even when my employer is generous enough to give me a 1% raise, that's money I earn that reduces the disability payment so I'm basically at a static income level with all of these other costs going on. That's just the new reality.
One advocate found the concept of lost earnings to be particularly important, re-directing the discussion on finances at one point by saying: We talk about the nitty gritty of paying [for care and treatment] and I understand that that's important, but we have to talk about lost earnings, too. Especially at this age… Many people save for retirement and plan financially without accounting for the possibility of catastrophic illness. Even if they do plan for the possibility, they may still spend their savings on cancer-related costs before reaching retirement. One of the meeting advocates shared that after being diagnosed, she thought she was going to die so did not think she needed to continue saving. Another advocate echoed a similar sentiment by highlighting the natural disregard for future planning when hit with a cancer diagnosis saying: Once you realize "I'm going to survive this," you need to worry about how you're going to pay for everything.

| Health insurance/Benefits
Advocates described how health insurance and work benefits were inadequate to support their treatment and the resulting F I G U R E 2 Themes identified during the qualitative analysis of meeting transcript [Colour figure can be viewed at wileyonlinelibrary.com] financial impacts that occur with early-onset CRC. More than one advocate mentioned that prior to their diagnosis, they had been hesitant to sign up for more advanced health insurance benefits because they never thought they would get sick. Others said they did not sign up because of poor communication about risks from insurance companies or from the employer providing the benefits.
One advocate had been thinking about short-term disability insurance for years because of pre-existing asthma. Fortunately, she completed the paperwork for short-term disability just 3 months before she was diagnosed with CRC. She said: …if it wasn't for that, I would have had zero income.

| Performance
Several advocates discussed how the physical side-effects of disease and treatment impacted their work performance. One advocate

| QOL impacts
Advocates described how a CRC diagnosis and the subsequent treatment had significant impacts on their QOL due to both emotional and physical side-effects. Emotional side-effects were particularly emphasized when participants brought up their (a) stress associated with financial burdens of survivorship, (b) relationship changes and strain and (c) missing information/resources from providers.

Stress
While there are many different sources of stress for all cancer survivors, meeting advocates emphasized the emotional stress that came along with the financial burdens of being diagnosed with CRC at a younger age. One advocate said: So, we're talking about the stress of being sick, yeah that's there because I was sick for real but the financial aspect of it is just so stressful and no one tells you… You're already… you're going through so much.

Missing information about 'what to expect'
Advocates expressed frustration about the lack of information from their providers and insurance companies regarding the impacts of [Laughter, murmurs] And so you know, it's really hard.

| Physical side-effects
Physical side-effects of CRC and treatment were described throughout the discussion and often seemed to be a point of comradery among the participants in the room. One participant noted a benefit of being in this group of advocates was the ability to speak openly about physical side-effects, which were often considered taboo in other settings. Participants implied that there is a layer of emotional shame that coincided with the stigmatized physical side-effects specific to CRC.
The list of physical side-effects that surfaced among participants during the discussion was long: the short-term and lasting effects of chemo and radiation, adjusting to life with ostomy, sexual dysfunction, problems with bowel and bladder control, and neuropathy. The The way that participants equated the physical side-effects to having a job highlights the scale of the impacts, the time they take up and the unwanted responsibility of adjusting to their new lives.

| D ISCUSS I ON
While survivorship issues are well documented for older-onset patients, there is a significant gap in our understanding of the distinct challenges younger CRC patients may face. This discussion with patient advocates illuminated details of financial and QOL impacts resulting from a CRC diagnosis among early-onset survivors and raised questions about how these may affect early vs. late onset survivors differently. All the meeting participants commented on the profound financial impacts of a CRC diagnosis. Employment emerged as a dominant theme around which many of their concerns revolved. The ways participants described impacts related to employment can be broken down further into four inter-related themes: career trajectory, lost earnings, performance and availability of adequate health insurance coverage and benefits. The participants also described how a CRC diagnosis impacted their overall QOL, highlighting both emotional and physical side-effects of the disease. The emotional side-effects described were related to overall stress, challenges in their interpersonal relationships and a general lack of information and resources to help them cope with the challenges of disease and survivorship. The physical side-effects that affected their QOL resulted from both the cancer itself and the subsequent treatment.
Our study is unique in its focus on CRC survivors with early-onset disease. Most prior studies have reported on financial burden of cancer in general across all age groups. 29 Previous studies also have shown that those diagnosed at younger ages are more susceptible to financial hardships. Zafar et al, found that 'significant or catastrophic subjective financial burden' afflicted 42% of cancer patients, with younger patients more likely than older patients to experience financial hardships. 29 Ramsey, et al, reported that younger cancer patients had higher rates of bankruptcy compared with cancer patients ages 65 or older, 16 and a survey on financial hardship among 1,202 adult cancer survivors found that financial hardship was more common among those aged less than 65 years compared with those 65 and older. 10 Research focusing specifically on CRC survivors also finds high risks for financial distress and lower associated QOL, but this work was not focused on early-onset CRC. According to Regenbogen, et al, CRC patients who experienced post-surgery complications had significantly higher financial burden than those without, worried more about their finances, were much later to return to work and used more compensation strategies such as taking out loans, spending savings and not making credit card payments. 32 Others have reported work-related limitations such as changes in work functioning, attitudes of employers and colleagues, financial pressures and emotional responses. 33 The advocates in our analysis echoed these findings, emphasizing that their financial hardships were unique to being diagnosed with CRC at a younger age.
However, our analysis does not reveal whether the financial impact among these patient advocates is unique to CRC as compared to other cancer types.
Although prior CRC QOL studies have focused on decreased QOL associated with colostomy, 8 the advocates in this discussion only referred to their ostomy in relation to how it impacted their personal and sexual relationships. The physical side-effects of colostomy were not discussed in this group, but the emotional impacts were prevalent. Thus, future research should evaluate personal and relationship counselling interventions that help CRC survivors cope with the emotional side-effects that accompany colostomy, including embarrassment and decreased feelings of intimacy.

| Limitations
The limitations of our study should be acknowledged. Participants in this discussion were not representative of all early-onset CRC survivors. They were members of a CRC-focused advocacy group, and thus, they are individuals who sought out support and a way to 'give back.' They were also all employed and had health insurance at the time of their diagnosis and had the means to incur some travel costs for the advocacy training. It is likely that the financial burdens expressed in this group may be even more pronounced in CRC survivors with less reliable employment, insurance and access to health care. While this group of CRC advocates is not completely representative of all early-onset CRC patients, this analysis highlights important themes of financial burden and QOL that may be unique to patients diagnosed with CRC under the age of 50 and, thus, warrant further study.

| CON CLUS ION
We applied a qualitative analysis to better understand the unique challenges of early-onset CRC survivors and to identify topics which may warrant further qualitative and quantitative research in larger populations to help health systems provide better cancer care. The advocates exposed important gaps that fall clearly within a traditional scope of health-care delivery, including a need for more resources to help patients better understand what to expect at different points during the cancer experience. Advocates wanted more information on a wide range of lifestyle topics including how CRC treatment could result in dietary changes, how to cope with changing relationships, how to manage employer expectations and help with managing finances. Some of the emotional and relationship impacts that were mentioned highlight a need for increased social and mental health services to support the patients throughout their survivorship experience. Thus, our results highlight important gaps in the care and support of early-onset CRC patients. Given the growing incidence of CRC in those under 50, 3 it is particularly important to address these gaps through additional research and to identify ways to develop care plans that address early-onset patients' financial, emotional and QOL needs.

CO N FLI C T O F I NTE R E S T
The authors declare that they have no conflict of interest.

DATA AVA I L A B I L I T Y
The data that support the findings of this study are available upon request from the corresponding author. The data are not publicly available due to ethical or privacy restrictions.