Financial hardship after cancer: revision of a conceptual model and development of patient-reported outcome measures

Figures & data

Table 1. Model constructs and exemplar quotes.

Model construct	Definition	Quotes
Causes of financial hardship
Employment factors	Employment practices primarily center on support for maintaining employment and income during the cancer, such as whether leave is paid or unpaid, availability of reasonable accommodations and the ease with which paid leave and accommodations can be accessed	• “He [boss] was like just go home, you know, just those little things. Like, just go home now, no take the day. You don't have to take off hours today and if you feel good, you know, just check your email or write up a little summary of something you know and that'll count and like just those little graces.” • “They [workplace] were very supportive, but my health insurance was through my employment, which meant I had to stay working the whole time.”
Insurance factors	Insurance practices includes health insurance and other types of insurance (disability, life) and encompasses requirements to access coverage and the level of coverage	• “I was probably on the phone with them [health insurance company] once every three or four weeks trying to figure out what it was that they were doing on some of their explanation of benefits resubmitting things. Just it was really painful.” • “Because although I could have COBRA'd, I couldn't have afforded all my expenses.” • “But when I was going through this I had to go on disability. My disability insurance tried to screw me. Oh, they tried to mess with how much they were giving me…Yes, they tried to short me. Yes, it was thousands of dollars”
Out of pocket care costs	Costs for healthcare and from treatment side effects. Medical system practices that affect costs includes how procedures are coded, billing practices such as whether a provider will send a bill to collections, locations of clinics and how many appointments a patient need	• “Other types of therapy. You know, acupuncture, that type of thing, and that was all out of pocket.” • “The plastic surgery center wanted all of its money up front for the reconstruction surgery.” • “Clothes wise, certainly when I was in chemo, I had to get clothes that were a little bit smaller.”
Living costs	Costs for basic needs and non-essentials (gym memberships, hobbies)	• “And there were things that we didn't have available to us any longer that. Maybe our idea of our life together just it wasn't possible, more like travel and bigger purchases.”
Dimensions of financial hardship
Financial coping	Participants' actions to afford care and living costs	• “We have not currently delayed retirement, but probably will be doing that.”
Financial consequences	Financial events that happen to participants due to trouble coping	• “I was not able to do much savings then for retirement personally.”
Financial depression	Symptoms of depression due to finances	• “I'm angry or mad because of money.”
Financial worry	Worry and anxiety due to finances	• “There was a lot of uncertainty about what things would cost.” • “So, the idea was would I have enough? Vacation or leave or how was I gonna do this without losing my job?”
Context and individual factors
Positive support	Resources others provide that can buffer the effects of context	• “There was a physical fitness program that they (cancer center) had for those in chemo.” • “My boss even paid for house cleaning and stuff like that and they came to visit and brought food.”
Social and caregiving context	The patient's role as a caregiver to others and the ability of caregivers to support the patient	• “The first time I got breast cancer, I was a single mom with a 9 year old.” • “I was married at the time, so we had two incomes, no kids.”
Time and location	Location of care centers and changes in causes of financial hardship over time	• “And the bus…when I was doing chemo, I was a little bit paranoid about taking a bus with all those other potentially sick people.”
Cancer symptom burden and financial hardship	Cancer and cancer treatment symptoms that led to financial hardship	• “I think clearly because it was a huge swath of, you know 8-9 months of my life that I wasn't progressing at my work. Uh, it certainly has put me behind on my career track.”
Luck	Random chance or another providing support that reduced financial hardship	• “I was lucky in that I had a 4/10 schedule.” • “And I was very lucky in that the insurance I was covered by my spouse at the time was very generous and so took care of most of [the costs].”
Individual factors	Includes financial status before the cancer; pre-cancer financial habits; pre-cancer health; cancer symptoms and treatment side effects	• “[before the cancer diagnosis] We took vacations and saved and paid that off. So I mean, there's a hardship in the sense of- I mean, we made those personal lifestyle choices to go on vacation or do those kind of things [after cancer diagnosis].”
Effects of financial hardship
Non-financial consequences	Indirect effects of financial hardship on participants' mental, emotional and physical health	• “Meaningful financial support would have meant that I could have the rest time I needed, the recovery time I needed.”
Caregiver effects	Financial hardship experienced by caregivers	• “I'm pretty sure whatever we sold off for assets was mine alone. And so in the vein of, we would have both jointly had that, had it existed in retirement, and we'd still been together, yes.”
Health behaviors	Interaction of financial hardship and actions patients take to improve their health	• “Definitely tried to improve my diet after diagnosis, so there is a cost I would say I tried to eat more organic, definitely more local foods.”

Figure 1. Revised conceptual model of financial hardship after cancer diagnosis.

Data taken from [13].

Jones SM, Henrikson NB, Panattoni L, Syrjala KL, Shankaran V. A theoretical model of financial burden after cancer diagnosis. Future Oncol. 16(36), 3095–3105 (2020).

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