Support Systems for AML: What Patients and Care Partners Need to Know

Lisa Hatfield:

Dr. Khan, there is often an unseen potential barrier that I wanted to ask about. Research indicates that care partner support is crucial for AML patients’ treatment success, yet many families feel unprepared for this role. What key information should families request from the healthcare team to effectively advocate for their loved one throughout the AML treatment journey?

Dr. Irum Khan:

I think that understanding all the resources available to a patient, I don’t think the vast majority of us have no idea what our insurance covers until we really need it, right? So I think educating yourself about the resources available to you through your insurance, as well as just in general, how to balance being a care provider with your job, your life obligations. And so, you know, when a patient’s in the hospital, it’s kind of a time when they have all these people very close at hand. I think it would be starting as early as possible and not waiting for things to start to pile up.

So asking about FMLA, asking about disability, asking about available grants for mitigation of co-pays, asking about other social supports, understanding the breadth of coverage of the insurance for things like transportation, what kind of transportation does your insurance, if any, provide? And home services, you know, what kind of home health can you get? A lot of these home health services really offload the caregiver a little bit, even if it’s for a few hours a day. Can you get some sort of a home health aide, if you don’t need a home health nurse? Home physical therapy, if a patient is not strong enough to go to a physical therapy, or maybe doesn’t want to expose themselves to that infectious risk.

So I think for the patient, but the patient may not feel up to it, so for the caregiver really to advocate, I think really exploring all the resources available to you through your insurance, as well as through all these foundations and support systems that the institution taking care of you may have. It’s never too early to start looking into those.

Lisa Hatfield:

Do you have any recommendations regarding one of the key pieces of an AML diagnosis, it takes a significant emotional toll, it’s life-changing. Do you have any suggestions for patients on trying to access resources for mental health, or for that emotional support, not only for the patients, but their support system also?

Dr. Irum Khan:

I would say, of course, the medical team taking care of you, including the longitudinal relationship you’ll have with your oncologist, is probably where a lot of patients share that, and again, it’s sort of building that trust to where they’re willing to share their deeper emotions, and that definitely takes a little while to build. And I think it’s a little bit on us as the physicians to kind of elicit that and recognize when that’s a struggle and to keep asking about it. But, you know, I think that your oncologist is always a good first resource to express any anxiety or mood that is gonna affect your ability to take your treatment, and handle your treatment, and how you tolerate your treatment.

I think for the adolescent and young adult population, this is particularly challenging. We actually recently did a study and are in the process of wrapping it up to try and interview patients as they begin their treatment journey for acute leukemia across the age spectrum, and it’s interesting, you know, as we look at extracted themes from these interviews, we find that our adolescent and young adult patients really struggle with this cancer identity that they just want to put in a box and not look at it. They don’t want it to become their identity, and I think that having an AYA-specific team where usually—like, we have a social worker and a nurse that’s our AYA team that our leukemia team docs talk to every week, and we say, well, we see this patient struggling a little bit, so they come and they see them, and they spend some one-on-one time with them. So I think that where possible, some sort of model like that, where there is a resource that the oncologist can call in, and recognizing that, you know, those adolescent and young adult patients are oftentimes a little more susceptible to some of these, especially sort of perception and self-image issues as they’re dealing with this diagnosis, rightly so, of course.

And I think one of the other things I’ll add is that, whether the patient is inpatient or outpatient, for the family and the caregivers, as well as the patient themselves, to try and normalize things as much as possible. You know, so if a patient’s coming in for an admission that’s going to be extended for a month or something, trying to live out their lives as much as possible like they would at home, if there’s some people have hobbies like music, you know, we have patients that bring their guitars or their keyboards, or some people want to immerse themselves in their work to kind of normalize the experience. And so whatever it is that gives the patient that sense of control, I think is important, and also key to mental health. A lot of patients enjoy doing things like art or music, or building, and things like that, just creative outlets which are ways of sort of self-expressing, I think, are also low-risk ways to ensure the mental health balance during the experience.