A treatment plan that works well during one stage of life may not be right during another. Going away to college, becoming a parent, changing jobs, taking up a new hobby, traveling more often, or simply getting older all can affect how well a treatment fits.
That doesn’t necessarily mean your treatment isn’t working. There simply may be something better suited for a new phase of your life.
Health care providers often talk about treatment burden — the weight of all the work needed to manage a chronic condition. As life changes, that burden can change, too. That’s why conversations at hemophilia treatment centers (HTCs) often extend beyond bleeding episodes and medication schedules.
“We don’t just talk about diagnosis and medications,” says Joanna Larson, a family nurse practitioner at UTHealth’s Gulf States Hemophilia and Thrombophilia Center. “We talk about their lives — their kids, their hobbies, their school, their work, and their day-to-day demands.”
Is Your Life Different Than It Was a Year Ago?
Some life changes are obvious, such as a teenager preparing to leave home and manage treatment independently for the first time, or a new parent adjusting to sleepless nights and new responsibilities. Other changes are subtler, such as a person traveling more or starting a more active hobby.
Larson sees these transitions as opportunities to ask about whether a particular treatment is still the best one.
She points to a common scenario among young adults heading off to college: “They won’t have the support they used to have from their parents close by,” she says. “Maybe they’re concerned about storing vials in the dorm, or about how busy they’ll be. They might ask, ‘What can I do to make things simpler at this time in my life?’”
Having a baby is another season that prompts people to reevaluate their treatment, but that doesn’t always mean making adjustments.
“Some people say, ‘I don’t want to change anything. A lot’s going on. Let’s just keep everything the same,’” Larson says. “And then some people say, ‘I’ve got to make things easier. What can I do to simplify things?’”
Aging can bring additional health concerns that warrant a chat about treatment planning.
“You’re going to have more comorbidities, and maybe more surgeries down the road,” she says. “Venous access can be harder as you age. Those target joints are not going to get any better. Maybe you want to get a hip or knee replacement. It’s a lot to consider.”
Regardless of what’s going on in your life, “anytime you’re having bleeds for whatever reason,” Larson says, “we have to have the conversation of what can be better, what can change, because the goal is always zero bleeds.”
Don’t Wait Until Something Goes Wrong to Revisit Treatment Plans
You shouldn’t assume that the only time to bring up treatment concerns is when you’re experiencing more bleeds. Providers want to hear about issues long before they become medical problems.
Sometimes, the challenge is treatment fatigue. Work, school, caregiving duties, and everyday stress can make it harder to stay on schedule. Larson says that as discussions unfold, she’ll ask whether treatment is still manageable, which can open the door to talking about other options.
“I just want to know, ‘Is this working for you? Are you able to keep up — are you having any late doses or missed doses?’” she says.
“If you are tired or stressed out with other things, giving your medication on time is just one more burden you have to take,” she adds. “It’s definitely worth talking about what can lessen that burden and make you more capable of treating when you’re supposed to.”
Bring Your Providers Into the Conversation
Your HTC’s comprehensive care team can best help you navigate developments when they know about them in advance.
A new job, for example, often comes with new insurance coverage and new approval requirements. Early communication can help avoid treatment disruptions, Larson says.
“Some think, I’ll just stretch out my factor, it’ll be fine, and then I’ll get new insurance — but there are better ways,” she says. “Include us, because we help you get through the transition.”
Travel can present challenges as well. An upcoming vacation might have you walking much more than normal, which can aggravate a target joint. Larson recalls one patient who backpacks in Colorado every year and must carry supplies into remote areas, so she makes sure he is OK with his current plan.
“I like to know what they’re doing, and what their plans are, so we can work around it,” she explains.
It’s good to bring in a provider when you find out about newer therapies — after talking with friends or attending the National Bleeding Disorders Foundation’s annual Bleeding Disorders Conference, for instance.
“People get all this information, and they come to me with questions, and I think it’s great,” Larson says. “‘Let’s talk about it. It might not be the option for you, but we can at least explore it and see if it is.’”