Walking a Mile in My Painful Shoes

When providers attempt to identify and eliminate some of the barriers to successful treatment of psoriatic arthritis (PsA), they quickly realize that there is no shortage of hurdles to overcome. Some of the barriers that patients encounter are reasonably within the control of providers and patients, such as education, lifestyle choices, and the ability to foster positive, mutually- respectful relationships. Others, such as insurance coverage, cost of medications, and medication efficacy/safety, are not so easy to remedy. It is an unfortunate fact that some patients with PsA have limited support systems and are forced to manage their pain on their own. In many cases, there are multiple comorbid conditions to manage as well. It’s a lot, and it can be overwhelming for many patients.

However, that doesn’t mean that rheumatology practices should simply throw up their hands and say, “I give up,” when dealing with patients who arrive with a slew of challenging barriers to successful care. There is a lot that providers can do to help even the neediest of patients, and it doesn’t always require a tremendous amount of effort. In my experience, the core issue for providers is the inability to identify and communicate realistic expectations of successful treatment for each patient.

Why do I feel that way? And more importantly, what can be done about it? Let’s take a look.

What is “Success” in Treating PsA?

No one wants to be the bad guy. Having honest, difficult conversations about anything—whether it’s at home, at work, or in the exam room—isn’t anyone’s idea of a good time. I truly believe that most people in the medical field try their best to remain positive for their patients. My rheumatologist fights for me at every turn, reminding me not to give up and that we have other options we can try if what I’m currently taking stops working. She continues to make changes to my treatment plan based on my feedback and the ever- changing landscape of PsA medications.

And yet, at the same time, I’ve learned that I should have had a realistic and honest conversation with my rheumatologist about what a “successful” treatment would look like for me right at the beginning of my healthcare journey. It would most certainly have changed many aspects of my treatment choices, especially in those precious first few years immediately after diagnosis.

I remember sitting in my doctor’s office very clearly on the day of my initial diagnosis of PsA. More than anything, more than shock or fear, I felt relief. It wasn’t necessarily relief because I finally had a diagnosis after years of traversing from specialist to specialist, but relief that I was finally, FINALLY going to get better.

“It wasn’t just the physical aspect of my condition that was difficult, but also the mental turmoil of managing the emotions that come with failing medicine after medicine.”

And then I took my medicine, starting with methotrexate and then following down a path of biologic agents. Each time, month after month rolled by as I waited to get better. I reminded myself to be patient and just follow my rheumatologist’s instructions. That’s the only way, I told myself, that things would get better. That’s the whole point of healthcare, right? You get sick, you go to the doctor, you get a prescription, and you get better.

It never occurred to me that the pain and stiffness I felt as a result of my PsA wouldn’t go away once I started taking medication. I knew enough by then to understand that my disease would never be “cured”—at least not with what we currently have available to treat it—but I was also quite certain that the treatment my rheumatologist had prescribed would at least be somewhat helpful.

But here’s the problem—I had no idea what “better” was supposed to mean. My interactions with healthcare providers earlier in my life were much simpler. Something was wrong—a fever that wouldn’t go down, a rash that suddenly appeared—so you went to the doctor. They figured out the problem, sent you home with a prescription, and a few days or weeks later, all better!

PsA, as I learned, is a very different animal, but no one at my rheumatology practice had spelled out for me the fact that I may only see a certain percentage of improvement in my symptoms, or even no improvement at all. Yes, I knew there was no cure. But I had no idea how far short of my expectations my treatment would fall. Even if someone had told me that, “The average patient with PsA will see a XX% of improvement in their symptoms from their initial treatment with a biologic,” I could have been better prepared. I would have known what to truly expect. Instead, the only thing I had to go on were the smiling faces on the medication advertisements and the assurance from my rheumatology that we would find something that “made me better.” If only I’d known what was coming…

Taking Our “Failures” Personally

Months went by, and yes, on some days, I did feel marginally better. I spent those early months hoping that as long as I remembered to take my prescribed medicine every day, I’d be able to start putting the pieces of my life back together again. Unfortunately, it felt like a personal failure when things didn’t get better after 6 months, then 12, then 18. It became more and more difficult to pick myself up and keep going every day. It wasn’t just the physical aspect of my condition that was difficult, but also the mental turmoil of managing the emotions that come with failing medicine after medicine. I began to notice major changes in my emotional well-being and mental health that I did not like.

But here’s the kicker—to my rheumatologist, I was “getting better.” Because I told her that my pain was slightly improved and my morning stiffness lasted only 1 hour each day instead of 2, she thought I was happy with how I was doing. But that wasn’t how I was thinking. At all.

So then what can rheumatology practices do to address this mismatch in perception?

  1. State and adhere to realistic expectations for treatment
    Every patient will base their expectations on their previous healthcare experiences. Because I had been a reasonably healthy individual prior to being diagnosed with PsA and had interactions with healthcare providers that typically resulted in alleviation of all of my symptoms, I was expecting that my treatment would essentially make me “all better.” Obviously, that isn’t the case for most patients with rheumatic disease, but my rheumatologist didn’t prepare me for that likelihood. Letting patients know exactly what to realistically expect can break down one of the main barriers to achieving a clinician-defined, “successful” treatment.
  2. Clearly outline parameters for improvement
    If they are honest with you, most patients will tell you that those checklists and pain scales you have us fill out at the beginning of every office visit are a total joke (sorry to burst your bubble). They don’t even begin to tell the story of the previous 3 months. They often don’t include symptoms that are unique to any of us. For example, one of the ways that I can tell if my medicine is helping or not is by fluctuations in my hearing. That isn’t tracked by any pain scale and yet, it is a major part of my identification of successful treatment.
  3. Show patients how to clearly track the symptoms that are important to them
    Whether it is journaling, charting, or simply checking boxes, having patients track specific symptoms can make all the difference when it comes to making informed decisions about the success or failure of any given treatment regimen. Patients who are able to take some ownership of their health are more likely to adhere to treatment plans, seek the help of support systems, and make the necessary lifestyle changes for better outcomes.
  4. Make fostering the constantly-evolving doctor-patient relationship a priority
    Like it or not, we are all held solidly in the grip of insurance companies. We know that it affects your decisions too. The clinician-to-patient ratio is astronomical in many areas of the United States, and especially within rheumatology. As much as many providers may want to sit with every patient for as long as is needed, we understand that there are limits. Honest, straightforward, open communication needs to be a priority. Without it, patient treatment will completely fall apart.

Patients know that there is a lot that falls outside the control of rheumatology offices that impacts the success or failure of treatment. As much as you may sometimes be frustrated when a patient stops taking their medication or doesn’t show up for scheduled appointments, know that we are frustrated too. There are steps that both parties can take to proactively identify and prevent key barriers to successful treatment. Identifying and communicating realistic expectations of “successful” treatment is a great place to start.

AUTHOR BIO: Leanne Donaldson writes about her experiences as a mom and parent with a chronic illness on her blog, Smiles and Sundays.

Participants will receive 2.75 hours of continuing nursing contact hours, including 1.75 pharmacotherapeutic contact hours, by completing the education in our course: Rheumatology Nurse Practice: Doing the Most for Our Patients with Psoriatic Arthritis Take The Course