Table 2.
Topic | Exemplar Narrative |
---|---|
What quality of life (QoL) means for patients with mBC | “So quality of life is very important. In particular, as for metastatic breast cancer patients, there's no cure. So the focus becomes how long they extend their life, what kind of treatment is available to extend their life. So when you think about that, getting a very strong treatment, but when you -- can't get out of bed, is that a good quality of life? No. It's, rather, what they think is, by continuing the treatment, but they want to live the way they have lived, and they want to have a future, think about the future as well.“- Japanese Interview Participant |
“I think quality of life is very important, and quality of life, certainly, isn't always the same for all patients. I think it means not having too many side effects or at least a good management of side effects and, also, how I can manage my daily life. Can I take care of my children? Can I still go to work or work and fulfill my daily tasks at home? Things like that. I think these two parts are very, very important.” – ECPC Participant | |
Aspects of treatment that strongly impact QoL for patients with mBC |
“So many people with mBC that I work with have ongoing, untreated pain, and it impacts their day-to-day life significantly. It impacts them physically, mentally, emotionally.” – MBCN/SHARE Participant “And if you lose hair, you can use a wig, for instance, and other things can be dealt with somehow. But according to the patients that I've seen also, to them, when they are fatigued and feel lethargic, that's a very major issue for their life.” – Japan Interview Participant “If you want to keep up your daily life and you cannot move, it's not easy to wash yourself, to do your daily things, to get out … it's really hard to … tackle it because, very often, it doesn't go away. They can't think anymore. They can't do things anymore because they're just [in] pain.” – ECPC Participant |
QoL is individualized and dynamic | “With mBC there is a certain “toll” that I think most patients recognize they will pay – [be] it neuropathy, fatigue, etc. Maintaining a base QOL is very important, yet the level of QOL will be very individualistic.” – MBCN/SHARE Participant |
“I'd like to say that quality of life is very age specific. My breast cancer was not the same as my mother's breast cancer primarily because I was originally diagnosed with the early stage at age 31 and then with metastatic at age 44. At 31, I was trying to maintain a career. I was single. I was still dating. At age 44, I had a two-year-old at home. I was midcareer. I was looking at a promotion to director. My mother, who almost had the same trajectory but was 20 years older, had a completely different set of priorities. Going to the opera was important to her, but she didn't have a full schedule. She didn't have a toddler at home.” - MBCN/SHARE Participant | |
Mode of treatment administration | “So many patients appreciate oral medication … IV treatment takes time and is very time consuming, and yet time has to be given for that treatment. You have to give up time for the treatment.” – Japan Interview Participant |
Educating providers on QoL | “I remember when I was being treated and I saw five different consultants. Not one of them ever asked me what I did for my job. Not one of them had any interest in my life outside of the immediate hospital or clinic where I was being seen.” –ECPC Participant |
“I also think it's important to bring in quality of life concerns in the treatment presentation and options because I have run into many patients where they have decided to just forgo [i.e. stop] treatment altogether because of those quality-of-life concerns and thinking it's just gonna be too disruptive to my life, I'd rather not even take it on.” – MBCN/SHARE Participant |