The vast gap between disease onset & diagnosis in Ankylosing Spondylitis patients

There is an urgent need to raise awareness about Ankylosing Spondylitis (AS), a condition which affects the younger population, impacting the most productive years of their lives. AS can be disabling as it can lead to immobility amongst patients. Research has indicated that amongst various other rheumatological diseases, the longest delay between disease onset and diagnosis is amongst  AS patients.***

Poor quality of life in AS patients

A study published in the Indian Journal of Rheumatology, has revealed that Indian patients suffering from Ankylosing Spondylitis have poorer quality of life in comparison to patients with rheumatoid arthritis and other healthy individuals, owing to poor disease management. The study uses the World Health Organization – Quality of Life (WHO QoL-BERF) Index as a  benchmark. It also revealed that Ankylosing Spondylitis patients’ lives are impacted negatively with physical, psychological and environmental factors, due to restriction in mobility, that the disease entails. Delay in diagnosis further leads to structural damage progression and fusion of bones.

Challenges in diagnosis in early-stage AS patients

In an early stage AS patient, who is typically at the pre-radiographic stage, diagnosis becomes particularly challenging because of the following reasons^]:

• Chronic back pain as the leading symptom is very common in the general population, whereas AS (pre-radiographic and radiographic) accounts for not more than 5% of all patients with chronic back pain

• The type of back pain that is typical in early AS (i.e., IBP) is present in 70 – 80% of AS patients, but it is also present in 20 – 25% of patients with ‘mechanical’ back pain

• Till date, there are no widely accepted diagnostic guidelines for early, pre- radiographic AS

Reasons for delayed diagnosis

Owing to its most common symptom that is back pain, the symptoms of AS are often ignored by patients as a negative impact of sedentary lifestyle, incorrect posture and long hours of sitting while working. Once the pain aggravates and starts interrupting daily routine, patients generally seek consultation from their family doctor, an orthopedician or physiotherapist.

Several treatment options like analgesics, anti-inflammatory drugs are prescribed to provide symptomatic relief from the pain and stiffness at the primary care level. Most patients tend to stop medication once they experience symptomatic relief and go back to their regular routine, until the pain strikes again. Therefore, it becomes important for the consulting doctor to reach the definite diagnosis rather than bank on symptomatic treatment.

The average gap between the onset of symptoms and diagnosis is 5-7 years, in most AS patients in India. Back pain and stiffness that lasts for more than 90 days, especially after waking up in the morning, could be an alarming sign of AS. Primary care physicians and the general public must be made aware about inflammatory backache. Once patients and doctors are sensitized, this gap in diagnosis can be bridged, and early treatment can be provided to patients.

Treatment should focus on slowing down disease progression

While pain relief is the first aim of the treatment, it is important to focus on slowing down disease progression in AS patients. Treatment with biologics has shown to slow down structural damage progression, by delaying the fusion of spinal bones. Recent studies indicate that almost 80 percent of AS patients treated with an IL-17A inhibitor biologic had no radiographic progression of the spine at 4 years and exhibited sustained improvement in signs and symptoms.

The long-term goal of treatment in AS patients should extend beyond pain relief, to preventing disability, maintaining mobility for a longer time and ensuring improved quality of life.

***Braun J et al. Secukinumab demonstrates low radiographic progression and sustained efficacy through 4 years in patients with active ankylosing spondylitis. Late breaking abstract presented at the 2017 ACR/ARHP Annual Meeting, San Diego, USA. 7th November 2017.

About the Author: Dr Shashank Akerkar is a Rheumatologist and has an experience of 13 years in this field. He completed MBBS from Grant Medical College, JJ Group of Hospitals Mumbai in 2000 and MD – Medicine from Seth G.S. Medical College and King Edward Memorial Hospital, Mumbai in 2004. He is a member of Indian Rheumatology Association and American College of Rheumatology.

*The view expressed by the author are his own.