Table 2.
Illustrative quotes of key themes
| Theme 1. Gaps in patient knowledge, communication, and experience of being overlooked in cardiovascular care | |
| Limited awareness and misattributed symptoms | “I knew that there were heart attacks, I knew that there were strokes, and I had heard of open heart surgery … someone tells you that you’re having a heart attack … that’s just what came to my mind because I was not educated on anything cardiac-related.”—women, late 50s |
| “My friend told me, ‘You should go down to the emergency room,’ and I said, no, it’s just maybe an indigestion… There was a doctor next door… he said, ‘Okay, I am going to send you to the emergency room.’”—woman, mid 70s | |
| “I didn’t even know what she was talking about. I was like, what do you mean, and the minute I said, where are we going, I got a sharp pain on the left side of my jaw. It went straight down my shoulder to my arm and I knew something was wrong, but I didn’t know it was a heart attack”—women, late 50s | |
| Misconceptions about who is at risk | “Cardiovascular disease was something that happened to old White men… I was in shape, I exercised, I was eating fairly well—I did not expect heart issues to be in my future.”—woman, early 50s |
| “I know tons now, but when this first started for me, I didn’t know anything. I had given birth five days before and I had a massive heart attack. I was thrust into this arena really unprepared. I was a young mother. I had two other children and then this new five-day-old baby and I had a massive heart attack”—woman, mid 50s | |
| Communication barriers and perceived clinical dismissal | “Cardiovascular disease was something that happened to old White men… I was in shape, I exercised, I was eating fairly well—I did not expect heart issues to be in my future.”—woman, early 50s |
| “[The doctor] came in, in front of my family, saying, ‘She is having a mild heart attack. This is related to stress. I told her that she needed to quit her job. I told her that she needed to lose weight.’ Brought me back for another echocardiogram and while he was doing it I was crying. He was like, ‘Why are you crying?’ And I said, ‘because I feel like you’re not doing everything that you are supposed to do. I just feel like there is something wrong and you’ve missed me.”—woman, mid 40s | |
| “My sister came in and they were going to dismiss me, and she was like, ‘No, something is wrong. You have to do the tests again…You cannot let her leave. She can’t even move her leg and her arm.’ So, she was persistent…that’s when everything kind of changed because that’s when they did the second tests and they found that I had an ischemic stroke, but before that they were about to kick us out of the hospital”—woman, mid 50s | |
| Recommendations for accessible cardiovascular education | “Yes, they gave me a little figure, like an ID card. So, I could keep it, and they explained that it was to improve my health, to open up the artery… there was also a video with a heart. They showed the camera and the stent. It was like a little movie.”—woman, mid 70s |
| “I went from my primary care physician to a physician there, and they showed you videos that say, for you, education for you. Yeah, so I learned a lot about that because he’s put that information at my disposal.”—woman, mid 60s | |
| Theme 2. Concerns about QoL and independence in decision making | |
| Prioritizing QoL in decision making | “I would like to know if it’s absolutely necessary for the surgery. I would like to know how long I’m going to be out of it. Am I going to be able to work?” —man, mid 60s |
| “Because what matters most is not just quantity, but living with quality. A lot of people have many years, but I want to live with quality, not just quantity.”—woman, mid 60s | |
| Fear of long-term dependence and disability | “I immediately think of being dependent. If I am a dependent… that doesn’t last as long as you may need, especially if it’s ongoing and it’s months and years, and I couldn’t handle that because I love people too much to make them responsible for me.” —woman, early 60s |
| “Not being able to take care of things at home—my kids, my job, all of that worried me. Having to depend on someone else… It was a tough time in the hospital.” —woman, mid 50s | |
| Anxiety about postoperative support and recovery | “I had nobody to take care of me. They did not tell me when they cut you open you don’t have any muscles anymore… I had to learn how to get out of bed. Nobody told me nothing, nothing.” —woman, mid 60s |
| “The wound leaked constantly… The dressings would have to be changed regularly. I was sent home with no wound care and no follow-up visiting nurse. I was sent home with no wound care and no follow-up visiting nurse. I couldn’t do much for myself at that time, and my home was a wreck.”—man, early 60s | |
| Theme 3: Hesitations around randomization for CABG vs PCI | |
| Concerns around randomization for CABG vs PCI | “It does depend on your insurance. It depends on what you can pay for what they will give you… If you can afford open heart surgery, and they can give you a stent, you are about to get your chest cracked open. That’s just the bottom line.”—73-year-old Hispanic woman |
| “There are different treatments—our body reacts certain ways differently—and to do everything randomized, in a sense, if everybody is on an equal playing field, but we are not; it’s not equal.”—woman, mid 40s | |
CABG, coronary artery bypass grafting; PCI, percutaneous coronary intervention; QoL, quality of life.