Managing Patient Concerns in Axial Spondyloarthritis

People with back pain face some uncertainty in diagnosis that is unsettling to patients and physicians alike. But once a diagnosis of axial spondyloarthritis (axSpA) is made, concerns often shift to both disease-specific questions and more general issues about disease chronicity and healthcare interactions.

“Given the chronic and often progressive nature of the disease, there are some key concerns and strategies for addressing them,” said Elaine Husni, MD, MPH, of the Cleveland Clinic.

“Rheumatologists should adopt a patient-centered approach, acknowledging these concerns and providing education, empathy, and practical solutions,” Husni told MedPage Today. “Addressing the psychological, social, and physical dimensions of axSpA is vital to fostering a therapeutic relationship and improving patient outcomes.”

Many axSpA patients have experienced significant diagnostic delays, which may lead to frustration, mistrust, and anxiety about the progression of their disease, Husni pointed out.

“Take time to explain the diagnostic process and reassure patients about how evolving criteria and imaging have improved detection,” she suggested. “Educate them on the disease course and emphasize that early treatment can help manage symptoms and slow progression.”

Addressing Patient Concerns

Literature about axSpA patient concerns has identified several opportunities to improve care.

A 2023 study examined the concerns of people with chronic diseases including axSpA, psoriatic arthritis, psoriasis, or inflammatory bowel disease. Patients rated concepts that were generated in workshops on issues related to their specific diagnoses.

The highest rated concept for axSpA patients was a lack of understanding and not being heard or seen by healthcare professionals. The second most important concept was consequences or limitations in work or life.

Concerns among axSpA patients that overlapped with psoriatic arthritis patients included the difficulty of having an invisible disease and not being taken seriously.

“The psychosocial impact of axSpA — including anxiety, depression, and social isolation — is often substantial, especially when patients feel misunderstood or dismissed by others,” Husni said.

Clinicians should screen for mental health concerns and be proactive in integrating mental health support into the treatment plan, she noted. This may include connecting patients with support groups, both in-person and online, to foster a sense of community.

“Rheumatologists can benefit from collaborating with mental health professionals to provide comprehensive care that addresses the mind-body aspect of managing axSpA,” Husni said.

Improving Quality of Life

In 2022, Marco Garrido-Cumbrera, PhD, of the University of Seville in Spain, and co-authors published a comprehensive survey of over 2,000 patients with axSpA in Europe.

Survey respondents said their most common disease-related fears were disease progression, suffering pain, and loss of mobility and independence. Their hopes were to stop disease progression, eliminate pain, receive effective treatments, and improve their quality of life.

One in three survey respondents said they had not spoken with their clinician about their personal treatment goals, Garrido-Cumbrera and colleagues noted.

“These insights into what is relevant for patients may reflect unmet treatment needs and key gaps in the information given about their disease, its outlook, and its management that could be addressed through improved education,” they wrote.

Patients with axSpA frequently report chronic pain, morning stiffness, and fatigue as limitations to their quality of life, Husni observed. Physical limitations due to pain, stiffness, or joint damage can significantly affect a patient’s ability to work, exercise, and maintain an active lifestyle.

“Fatigue, in particular, can be an underrecognized burden that affects daily functioning and emotional well-being,” she said.

Physicians and patients can work collaboratively on a tailored pain and fatigue management plan, she added. This may involve integrative medicine specialists, chronic pain doctors, physical therapists, and others to improve exercise and sleep hygiene.

“Work with patients on strategies to maintain functionality, including referrals to physical and occupational therapy,” Husni said. “Regular exercise tailored to individual capabilities can improve mobility and reduce stiffness. Encourage goal-setting to maintain autonomy and provide resources for adaptive equipment when needed.”

Making Treatment Decisions

Patients often worry about the side effects of long-term medications, particularly when using biologics or other immunosuppressive therapies, Husni noted. They may also have concerns about the potential lack of efficacy over time.

In a 2020 study, Brennan Spiegel, MD, MSHS, of Cedars-Sinai Medical Center in Los Angeles, and co-authors presented 397 axSpA patients with a series of side‐by‐side profiles of unbranded hypothetical treatments differing in important clinical dimensions like cost, adverse events, chance of symptom improvement, and route of administration. Choices generated a treatment preference profile.

The top three treatment priorities were medication efficacy (importance score of 26.8%), cost (26.3%), and route of administration (13.9%). There were few significant associations between patients’ treatment preferences and their sociodemographic or axSpA characteristics, the researchers noted.

The results underscore the need to develop online treatment decision tools to enhance communication and shared decision-making between patients and providers, Spiegel and co-authors said.

There are numerous treatments for axSpA ranging from nonsteroidal anti‐inflammatory drugs to biologics. It can be difficult for patients to navigate the array of options and choose a therapy that aligns with their preferences, Spiegel and colleagues noted.

“Adding to this complexity is that even within medication classes, particularly for biologics, there are varying mechanisms of action, modes of administration, effectiveness, and side effects,” they wrote.

Discussing treatment options openly — including potential side effects, benefits, and realistic outcomes — is important, Husni maintained.

“Encourage patients to express any concerns about their treatment plan and discuss the possibility of adjusting medications if side effects become burdensome,” she said. “Find ways to educate the patient beyond signs and symptoms.”