Lack of understanding adds to disease burden in AS: Study
Patients face multiple challenges in living with ankylosing spondylitis
People with ankylosing spondylitis (AS) face difficulties in diagnosis and treatment, must deal with the debilitating effects of disease symptoms, and handle adjustments in social roles, often while contending with a lack of understanding and support — all factors that add to an increased disease burden for patients.
That’s according to a review and meta-analysis of several published studies, which found that chronic pain and fatigue associated with AS affect a person’s physical, psychological, and social functioning. Overall, living with AS increases the economic burden and reduces the quality of life of individuals with the disease and their families, the study found.
Further, data showed that a lack of understanding of AS among healthcare professionals and the public contributed to many of these challenges.
“Healthcare professionals should leverage the internet to enhance public awareness and inclusion of AS,” the scientists wrote, adding that the AS community “should leverage its strengths to effectively disseminate knowledge about [the disease] and create an optimal environment for patient rehabilitation.”
Titled “Experiences and perceptions of patients with ankylosing spondylitis: A systematic review and meta-synthesis of qualitative studies,” the study was published in PLOS One.
Study sparked by ‘growing interest’ in AS patient experiences
AS is a type of arthritis marked by inflammation of the spaces between the bones of the spine, or vertebrae, which causes back pain and stiffness. Inflammation of the sacroiliac joints, where the base of the spine connects to the pelvis, is a hallmark sign of AS.
Symptoms, including chronic back pain and stiffness, typically emerge in early adulthood and gradually worsen, with severity usually varying from person to person. Severe AS can lead to spinal fusion, which can be debilitating.
While most research has focused on understanding the biology of AS and on developing treatments, “there has been growing interest in the experiences of AS patients in various countries” in recent years, according to the scientists.
That led a team of researchers in China to pool and analyze the findings of several studies on the experiences and perceptions of people with AS. The goal of this resulting meta-analysis was to “[provide] a foundation for clinical staff to develop coping strategies and construct personalized patient care management plans,” the team wrote.
Following a database search, the researchers identified 11 studies with 40 findings, which the team grouped into four main themes: difficulties in diagnosis and treatment; the effects of disease symptoms, particularly pain; maladjustment of social roles; and lack of support for disease response.
That first theme focused on problems patients experienced in getting a correct diagnosis and finding effective treatment. Because early AS symptoms often were subtle, these disease signs frequently were ignored by patients and misdiagnosed by clinicians. Patients routinely faced many referrals before getting properly diagnosed, which wasted time and energy. Although prescribed medications reduced pain and helped patients maintain a normal life, side effects often lowered compliance, and online information about these medications was confusing.
“AS is characterized by an insidious onset, with early symptoms that are not obvious enough for detection,” the researchers wrote.
Regarding the second theme, about the impact of AS symptoms, the team noted that patients often felt negative emotions after their diagnosis, including fear, confusion, helplessness, and frustration. Some experienced depression, and many worried about their future and the hereditary nature of AS.
“Upon learning that the disease is hereditary, [patients] become concerned about its impact on the next generation,” the team wrote.
Among patients, chronic pain from AS was found to limit daily activities, affect independence and work, and, in some cases, lead to job loss. Chronic pain also impacted patients’ walking abilities and resulted in poor sleep quality. Fatigue was also a common issue affecting quality of life, as it was marked by low energy and problems with memory and self-image.
Clinicians, patients must work together to ease disease burden
In the third theme, AS was seen to weaken family function and alter original roles. Men often struggled with unemployment, and women changed their plans for marriage and children. Some unmarried women wanted marriage and children sooner, before AS worsened, while a number of married women no longer wanted more children. Concerns about the hereditary nature of AS also influenced couples’ willingness to have children.
Certain individuals faced disruptions in their career paths, while some were unable to continue their previous jobs or work full-time due to physical limitations. Social isolation also occurred as patients sometimes avoided friends and activities, leading to severed connections. Moreover, friends often misunderstood the patients’ condition.
Some “patients actively avoid socializing with friends due to physical sensitivity,” but “when friends do not understand the disease, patients may be excluded from group activities,” the researchers noted.
It is evident that both healthcare professionals and the public have an insufficient understanding of AS. … It is important to enhance knowledge of the disease.
The fourth theme described patients’ lack of emotional support and understanding from parents, partners, friends, family, and colleagues. Patients said having insufficient assistance aggravated their struggles with work and treatment, adding to their disease burden. Many spent considerable effort explaining their situation to the staff at employment centers. The high cost of nondrug therapies, such as hydrotherapy, or special exercises in warm-water pools, was also limiting.
Overall, according to the researchers, “it is evident that both healthcare professionals and the public have an insufficient understanding of AS.” Thus, “it is important to enhance knowledge of the disease,” the team wrote.
The researchers called for new initiatives to increase awareness of AS and highlight the need for support for people with the disease. They noted that such efforts should “leverage the internet along with print, screen, and mobile media to provide the public with information through texts, posters, and videos, thus enhancing the impact of disease education.”
Healthcare professionals also need to do more to “prioritize the mental well-being of diagnosed patients, support active self-management, deliver personalized interventions, and promote rehabilitation and overall quality of life improvement,” the team concluded.
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