People living with psoriatic arthritis deserve to be informed about ways to approach disease management holistically and with a personalized approach.
Managing a chronic disease such as psoriatic arthritis (PsA) can be challenging—just when one element of the disease seems under control, another can pop up. This can be a source of frustration for health care providers and their patients, as they seek symptom relief to help improve well-being, which can include physical and mental health.
Given the unpredictable nature of PsA, an often debilitating immune-mediated disease characterized by swollen joints and stiffness,many patients can feel disappointed by how the disease interferes with their ability to do daily tasks or how they are responding to treatment, for example, if they are experiencing short-term symptomatic relief but not long-term symptomatic relief. Many patients adapt to the ebb and flow of periods of time in which they feel better and when they experience painful symptoms.
But people living with PsA deserve more. They deserve to be informed about ways to approach PsA management holistically and with a personalized approach, so they can relieve symptoms, slow disease progression, and feel their best.
Optimal PsA management does not involve only symptom relief of the joints and the spine; it also addresses patient-reported outcomes that might not be as apparent on the surface or in test results but impact their physical and emotional well-being. Making overall wellness a key consideration begins with changing our understanding of PsA and then shifting how we support patients along the way.
Broadening the Understanding of PsA
Addressing the physical symptoms of PsA, such as joint stiffness, pain, and swelling, is critical. Given the toll these symptoms can take on one’s everyday activities, it is natural that PsA care and treatment options to-date have focused on these physical aspects of the disease.
But the reality is that PsA impacts much more than just the joints. For example, we know that people living with PsA can experience other challenges associated with a chronic disease. We also know that fatigue is a leading symptom of PsA, but one that may get less attention. In fact, patients with PsA consistently cite fatigue as the second-most reported symptom of their disease—second only to pain—describing it as an overwhelming feeling of exhaustion, in which even the smallest tasks take up all their energy.Others note the negative effects that fatigue has on their emotional and mental well-being.
It is time to have a more holistic conversation about PsA that includes discussion around symptoms such as fatigue and how that could potentially impact daily activities.It is time to send the message that managing PsA is not only about reduced joint pain or smaller plaques.
It’s also about finding solutions, including medication, lifestyle changes, and strategies to empower people to take charge of their disease. Managing PsA can help them feel better in the day-to-day.
The good news is that health care providers and the PsA community are increasingly creating the space for patients to discuss the impact of their disease beyond inflammation and pain. In fact, a recent cross-sectional web-based survey in 332 adult patients with PsA in the ArthritisPower registry revealed that joint pain was the most bothersome symptom for adult patients with PsA, followed by other musculoskeletal pain and fatigue.1 The survey also found that adult patients with PsA were most focused on how their treatment plan could improve their ability to perform daily activities and function independently.1
The results of the study reinforce the need for PsA management to reflect the unique needs, experiences, and wellness goals of each patient because there is no one-size-fits-all treatment plan. It is encouraging to see how providers are also doing their own research to better understand how symptoms such as fatigue and overall wellness fit into PsA to help advance care.
Changing the Treatment Discussion
Along with this positive shift in holistic disease management, science is also advancing. Various treatments are available to patients to address a range of symptoms such as inflammation, stiffness, and pain. These treatments include non-steroidal anti-inflammatory drugs, disease-modifying antirheumatic drugs, and biologics. Furthermore, some biologic agents have clinical evidence around improving symptoms of fatigue.
Because of this, there is an opportunity to give patients more options, which is essential, considering PsA is a chronic disease with no cure. The severity of PsA can vary from patient to patient, symptoms may feel invisible and be hard to describe, and it’s a progressive disease, so it’s important to help patients understand that it can take time to get a treatment plan just right, and it’s not a failure if adjustments need to be made over time. This gives patients and providers the chance to have an open dialogue about what is and isn’t working to tailor their treatment plan to better fit their specific needs— from medication and lifestyle changes to strategies that support mental and emotional health.
Going Beyond Treatment and Supporting the Journey
To truly incorporate well-being into PsA treatment, there is one last critical component to address—continuing to support patients outside of the physician’s office and throughout their care journey. We may assume that a patient’s journey ends once they leave the physician’s office with a prescription in hand.
But for many, that’s just the beginning. Often, patients must work through the fulfillment process, which can be lengthy, complicated, and overwhelming, before they can get started on therapy.
At Janssen, we are committed to being there for patients throughout that process. After a patient has been prescribed one of our products, we offer a support program to help them on their journey from finding the care they need to receiving guidance to start and stay on treatment, such as 1:1 access to a dedicated nurse, medication education, and financial support.
Additionally, we understand the critical role biologic coordinators play in the PsA patient journey, which is why Janssen established an annual National Biologic Coordinators Day on November 1, 2021, to recognize the essential role these individuals play in helping patients to navigate the sometimes-complex process of obtaining access to prescribed biologic medications. Biologic coordinators are some of the most important advocates for patients in health care—yet too often their work goes unrecognized.
PsA of the Future
In my view, our responsibility to empower patients living with PsA is more urgent than ever before. As we increasingly understand the full breadth of PsA symptoms and as more treatment options become available, we can work to make feeling just “ok” or “good enough” a thing of the past. It’s time for people living with PsA to feel empowered to expect more and to help them prioritize their overall well-being.
At Janssen, we’re up for the challenge. We are building on our 20-year legacy by investing in a growing research and development program, with the goal of ushering in a new era of treatment for PsA and other immune-mediated diseases. Through scientific research and patient support efforts, we are focused on our mission of relentlessly advancing care in PsA and look forward to working with the community along the way.
1. Ogdie, A., Myers, K., Mansfield, C. et al. Experiences and Treatment Preferences in Patients With Psoriatic Arthritis: A Cross-Sectional Study in the ArthritisPower Registry. Rheumatol Ther 9, 735–751 (2022). https://doi.org/10.1007/s40744-022-00436-x