Abstract
Purpose
Patients with multiple chronic conditions (multimorbidity) often require ongoing treatment and complex self-care. This workload and its impact on patient functioning and well-being are, together, known as treatment burden. This study reports on factors that patients with multimorbidity draw on to lessen perceptions of treatment burden.
Patients and methods
Interviews (n=50) and focus groups (n=4 groups, five to eight participants per group) were conducted with patients receiving care in a large academic medical center or an urban safety-net hospital. Interview data were analyzed using qualitative framework analysis methods, and themes and subthemes were used to identify factors that mitigate burden. Focus groups were held to confirm these findings and clarify any new issues. This study was part of a larger program to develop a patient-reported measure of treatment burden.
Results
Five major themes emerged from the interview data. These included: 1) problem-focused strategies, like routinizing self-care, enlisting support of others, planning for the future, and using technology; 2) emotion-focused coping strategies, like maintaining a positive attitude, focusing on other life priorities, and spirituality/faith; 3) questioning the notion of treatment burden as a function of adapting to self-care and comparing oneself to others; 4) social support (informational, tangible, and emotional assistance); and 5) positive aspects of health care, like coordination of care and beneficial relationships with providers. Additional subthemes arising from focus groups included preserving autonomy/independence and being proactive with providers.
Conclusion
Patients attempt to lessen the experience of treatment burden using a variety of personal, social, and health care resources. Assessing these factors in tandem with patient perceptions of treatment burden can provide a more complete picture of how patients fit complex self-care into their daily lives.
Supplementary material
Additional patient quotes
Theme 1: problem-focused strategies
Subtheme 1: routinizing self-care
And then, as far as remembering to take medications, the medications that I need to take in the morning, well, they’re on that counter where I’m going to be, you know, next to the kitchen sink where I’m going to be. [Mayo Clinic FG #1]
As long as you’re structured, it’s okay. Like Monday through Friday, I’m good; but Saturday and Sunday, it’s […] you know, you sleep a little later. You don’t have the same structure, and it makes […] makes for confusion. [Mayo Clinic FG #1]
You get in a routine and you just kind of do it. It is just part of your day. [59 YR WF]
Subtheme 3: planning for the future
When we think about retirement and having health coverage, knowing that we are going to definitely need that because obviously the medications that I take will continue into my future, so we will need that. [54 YR WF]
Subtheme 4: using technology
If you’ve got a problem, send [the doctor] an email. [Mayo Clinic FG #2]
I’ve got on my computer and my phone, I put reminders, sort of ‘take your pills, dummy.’ I mean, because there are times if I don’t have that, I will forget. [Mayo Clinic FG #1]
The cool thing now, with the [endocrinologist] that I have, we e-mail back and forth every week when there is something going on. Right now we are working with the insurance company trying to navigate everything through […]. This morning I got on my Blackberry and sent him a message and he will pick it up on his Blackberry and then get back to me to figure out what the next steps are going to be. [41 YR WM]
Subtheme 5: preserving autonomy/independence
I don’t need anybody to be concerned about me. As long as I worry about me, I’m fine. [HCMC FG #2]
Subtheme 6: being proactive with providers
If I need to get a hold of the doctor about something that’s going on in my body that we haven’t discussed before, I can call his nurse […] and they will eventually get to the doctor, and the doctor will get back to you. [Mayo Clinic FG #2]
If you don’t take charge and have one doctor, one doctor that controls all the doctors, you have a problem. [HCMC FG #1]
I also think, sometimes, when you have to be your own advocate, sometimes, the doctor doesn’t believe you or doesn’t understand what you’re going through. [Mayo Clinic FG #1]
I used to not want to bother my doctor too much, or oh, we’re going over time. Well, hey, it’s about me […] getting the optimal out of the health care situation to enhance my life. [Mayo Clinic FG #1]
Theme 2: emotion-focused coping
Subtheme 1: maintaining a positive attitude
Well no, but the thing is you’ve got to get to a positive place. If you stay negative or think so much, it becomes crazy making. […] you’re not gonna do the things you need to do to be healthy. [HCMC FG #1]
I think if you don’t have a sense of humor with some of these things that we all deal with, that’ll kill you […] you know, taking yourself too seriously. [HCMC FG #1]
You know, maybe there are also good aspects of this. I was never a patient person. I’ve learned patience. [HCMC FG #1]
Subtheme 2: focusing on other life priorities
I’ve got grandchildren that I love dearly and I have many good friends. I love my job. Those kinds of things keep me motivated. [60 YR WF]
Theme 3: questioning the notion of burden
Subtheme 1: adaptation/normalizing self-care
It is a small percentage of my life that has been taken out by taking pills or going to the doctor. […] that is not a major part […] so I don’t look at it as a dramatic burden. It is just something that I got to do. [36 YR AAM]
Theme 4: receiving support from others
Subtheme 1: Informational support
[Wife] is a nurse at [clinic] so I just kind of ask her what she has seen. […] she is pretty knowledgeable with what other people have taken. […] she is pretty knowledgeable, yeah. [43 YR WM]
Subtheme 2: instrumental support
My kids know I have it and they see me give shots, they see me test my blood sugar, they see me getting food to eat and they ask me if I am low or if I need something. [41 YR WM]
Subtheme 3: emotional and companionship support
It really helps if I talk to other people that have experienced just being a heart patient […] that really does help because sometimes you think ‘Oh man, I’m the only one. I have to do this, this, and this, and I have to avoid this, this, and this’. [Mayo Clinic FG #2]
Yah, both my wife and I probably have a need to lose weight so we support each other by trying to go for walks and get the kids to the park and keep the kids active. [43 YR WM]
That’s the place [support group] I go where we get to be with people and they’ve got like the same illnesses like me. We understand one another, so that helps me out a lot. [38 YR AAM]
Theme 5: positive aspects of health care
Subtheme 1: systemic aspects
It’s a big circle they got. Everybody is in contact with everybody, and I’m the ball in the middle. [56 YR WM]
Most of the care is done with your primary physician, and if you have a good relationship with him, things just go real smooth. And if another doctor has to be involved, he gets [that] person involved and then you go see the person and they send the results back to [the primary physician]. [74 YR WF]
Subtheme 2: individual-provider aspects
[…] then he’ll explain almost all details – this, that, and this is what’s going to come out of it, and you know, just make sure you take your medication and that. And you don’t mind hearing that, you know, as long as it’s explained to you. What does it mean […] if they explain it so you understand it more, then it’s more relaxing. [61 YR WF]
And if they think that I need something and I don’t want to have it, but they think I need it, then of course, I’ll just go with it […]. But we come up to a conclusion together. [44 YR AAM]
You have some of those doctors that’ll be like, ‘Oh I’m a doctor, I know what I’m talking about,’ and they really don’t hear what you’re saying. She hears what you’re saying. [45 YR AAF]
Acknowledgments
The research reported in this publication was supported by the Sponsorship Research Board of St Marys Hospital (Rochester, MN); the Mayo Clinic Center for Translational Science Activities through grant number UL1 RR024150 from the National Center for Research Resources, a component of the National Institutes of Health; and the National Institute of Nursing Research of the National Institutes of Health under award number R21NR012984. DRdO, VMM, and DTE are part of the International Minimally Disruptive Medicine Workgroup. Workgroup members include Gene Beyt, Amy Bodde, Kasey Boehmer, Juan Pablo Brito, David Eton, Katie Gallacher, Michael Gionfriddo, Leona Han, AnneRose Kaiya, Maya Kessler, Aaron Leppin, Sara Macdonald, Frances Mair, Carl May, Victor Montori, Megan Morris, Djenane Oliveira, Nilay Shah, Nathan Shippee, Amit Sood, Robert Stroebel, Kristin Vickers Douglas, and Kathleen Yost.
Disclosure
The authors report no conflicts of interest in this work.