Qualitative Study of Factors Affecting Patient, Caregiver and Physician Preferences for Treatment of Myeloma and Indolent Lymphoma

Figures & data

Table 1 Baseline Characteristics

Participants	Interviews	Hospital		Gender		Diagnosis		Treatment		Matched Pairs
		NUH	SGH	Male	Female	Myeloma	Lymphoma	1st line	>1
Patients	12	10	2	9	3	8	4	7	5	4
Caregivers	12	10 (+1)*	2	5	7 (+1)*	7 (+1)^	4	6 (+1)^	5
Physicians	6	4	2	4	2
Total	30	24(+1)*	6	18	12(+1)

Notes: *A paired interview was conducted with two caregivers of the same patient. Although there were two caregivers as participants, they are counted as one because they both care for one unique patient. ^{^}Two interviews were conducted with different caregivers of the same patient. They are counted as one because they both care for one unique patient.

Table 2 Select Quotes from Patients

Theme	Patient	Quote
Efficacy	6	“What you have to tolerate is only temporary. If they tell me this thing can cure me 100%, I would probably still go for it”
Cost	1	“Clinical trial doesn’t cost … maybe I will go for that”
Cost	2	“Because at the initial stages I, had medical insurance … and I didn’t renew it. It lapsed … So when these three options were given to me, the cheapest option available was chemo, which is which is the toughest option because it has the most side effects. Very terrible.”
Cost	3	“Alright, if I prolong my life for 5 years, say max tops 5 years, what am I going to do in 5 years? I rather save 100k for my kids who can use it for their studies. So another 5 more years, I only think I’ll watch one more world cup, that’s all. [laughs]”
Cost	9	“If I have to go, I rather go now than cause a strain, financial for my family and then go”
Least burden to loved one	12	“And then uh, especially show that the- you mustn’t- in order not for them to worry-you- you must really look okay-you know?”
Side effects	2	“I don’t think I can cope with another round of chemo because this chemo, I fainted and collapsed. Blood count dropped and had an infection, my blood pressure dropped, and I had to go to ICU. So I told the doctor, never mind, I don’t think I can go through it.”
Doctor recommendation	1, 2	“I have full faith in the doctors.”
Doctor recommendation	12	“I strictly follow [name of current hospital] doctor. [Name of current hospital] doctor advise, what is the planning, I just follow strictly. I didn’t go anywhere else to check.”
Conflict between caregiver	4	“Though my wife and kids will say, no, no you use the money. I don’t think so. As I said, adding another 4–5 years to my life, I don’t think there’s something great I can do.”
Where treatment is	1	“To me, I would go whatever the treatment requires me to go - not a problem.”

Table 3 Select Quotes from Caregivers

Theme	Caregiver	Quote
Cost	1	“I mean for the financial parts it’s more about how she feels. I spent all my savings on the first treatment”
Cost	11	“I apply for no pay leave and come late … Then I quit my job [laughs]. Then it becomes a concern you know … more for the money part.”
Cost	10	“I feel significantly burdened by the cost because the cost is significant. It is not something that is minor.”
Side-effects	4	“She couldn’t even smell people cooking … In a way, it’s spoiling her chance of recovery, it really takes away the quality-of-life from the patient. Technically it worsens the situation.”
Patient autonomy	9	“It really depends on the situation of what the patient wants, and if the patient wants a different kind of outcome or different design of the treatment, then we are more than happy to discuss with the doctors.”
Withholding from patient	2	“For example, my biggest concern I don’t tell him, (…) Yes. That was, that could be a problem in the long run.”
Withholding from patient	10	“My frustration is that she may not make the same rational decisions that we would make when given the same choices.”
Withholding from physician	6	“We don’t discuss financial stuff with the doctor, but yeah we just trust that the doctors will do their job. We believe they will do their job and give her the best treatment possible.”
Doctor recommendation	11	“Definitely you know for us the doctor communicates with us very well. When the doctor said, you are performing well, she is happy. But if I say: ‘you’re recovering well’, I’m not the doctor, she won’t trust me. ‘I don’t believe you. You are not the doctor.”
Where treatment is	4	“ … home environment where he might be still free to roam around in the house, it’s a big concern for us because if we pick the home-based, my mum will be like, to what extent of cleanliness are we talking about for cleanliness.”

Table 4 Select Quotes from Physicians

Theme	Physician	Quote
Cost	5	“We are trying to figure out where you can get the money to treat them and whether you can treat them or not. That’s very unfair, to base decisions on financial reasons.”
Cost	4	“And quite often if it’s cost, they they’ll tell me the cost is it. I say okay see if there are ways and means to get around it, let’s just discuss with the social worker. Let’s see what funding they can provide, what support we can harness for you.”
Need to treat	2	“Usually if they do not want treatment I can always say, “Let’s start one with a little bit only, you don’t want then we stop.”
Patient factors	3	“We keep it patient-centric, for example, some patient might have something more about their disease uh or, or a non-disease-related factor, for example patient with heart problems or patient with liver problems, when they come in we say, this is what we use normally but unfortunately given your disease, this I think is going to be a bit tricky so I would suggest this.”
Patient autonomy	5	“Sometimes views conflict and my worry is sometimes I don’t actually know what the patients want, because they are deferring to their caregivers”
Patient autonomy	2	“There’s a cultural difference in how patients and carers make decisions about the treatment and I don’t think in our society we are capturing that at the moment and we are allowing enough information in the correct way to go out to the patients so that they can actually be involved in the shared decision-making.”
Patient autonomy	1	“I think the patients should be given a chance to express their opinions independently and that doesn’t always happen.”