Survey Reveals Delayed Diagnosis and Heavy Disease Burden Among Filipinos With Axial Spondylitis

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On average, Filipinos with axial spondyloarthritis (axSpA) are diagnosed 5.8 years after developing the disease. axSpA has a significant functional, psychosocial and economic impact on patients, highlighting the heavy burden of axSpA.

These are among the key findings of the Philippine Map of Axial Spondyloarthritis (PMAS), an online survey conducted by the Philippine Rheumatology Association (PRA) and the patient advocacy group Axial Spondyloarthritis Association of the Philippines (ASAPh). PMAS is the first comprehensive survey describing the demographics, disease characteristics and disease patterns, diagnosis and treatment of patients with axSpA in the Philippines. A total of 128 Filipinos living with axSpA participated in the survey from July to October 2021, with the preliminary survey report being completed in March 2022.1

AxSpA is a chronic inflammatory disease that primarily affects the spine and the sacroiliac joints that connect the spine to the pelvis.2 Symptoms usually manifest as chronic inflammatory back pain, stiffness and fatigue in the pelvis and lower back, although any area of ​​the body can be affected. AxSpA occurs in approximately 1% of the general population and can affect both men and women, with patients usually being in their 20s when they first develop symptoms.3

Most survey respondents were from the National Capital Region (42.2%) and surrounding areas (45.4%). The age of the respondents varied between 18 and 77 years old, with an average of 39 years old. The majority were men (76.6%) and more than half were married (54.7%). Almost half (44.3%) were overweight or obese. Hypertension (35.6%), uveitis or ocular inflammation (33.6%) and hypercholesterolemia (28.2%) were the most frequently reported comorbidities.

Delayed diagnosis

The majority (75.8%) were diagnosed by rheumatologists; the rest by orthopedic specialists. Before being diagnosed, most respondents had multiple consultations with a rheumatologist (44.5%), an orthopedic specialist (43.8%) or a general practitioner (27.3%). Delay in axSpA

“Although this still requires validation, one possible explanation for the longer diagnostic delay in women is the misconception that axSpA is a male-specific disease. For women, more common medical conditions are considered before ‘a diagnosis of axSpA is made,’ said Dr. Bernadette Heizel M. Reyes, Professor, Division of Rheumatology, Department of Medicine, University of the Philippines-Philippines General Hospital

Only 1 in 5 respondents (19.5%) had a diagnostic delay of more than 10 years, while 34.4% had a diagnostic delay of less than 2 years. Time to diagnosis was shorter in respondents who developed symptoms of axSpA more recently; 73.4% were diagnosed between 2011 and 2021.

“The shorter time to diagnosis observed in the PMAS study reflects improved awareness and access to a rheumatologist. However, we can still do better by educating and collaborating with primary care physicians and specialists to further shorten the time to diagnosis. In addition, the PMAS study can improve the patient-doctor relationship. Because axSpA is a multifaceted condition, the rheumatologist has the opportunity to discuss important patient concerns that are often not addressed during a clinic visit,” said PRA Chairman, Dr. Juan Javier Lichauco.

Heavy burden of disease

Many respondents had active disease, spinal stiffness, and inflammation of the lumbar and cervical spine and hips. Three out of four (75%) complain of moderate to severe stiffness in the lumbar spine. Many reported having difficulty performing routine daily tasks and needing assistance; physical activity, using public transport and tying shoelaces were the most frequently affected daily activities.

A significant proportion of respondents reported mental health issues that affected their productivity. These include sleep problems (28%), anxiety (25.9%) and depression (25%). In addition, survey results showed a correlation between mental health and disease activity. Respondents also reported that axSpA had a negative impact on their family relationships and social life.

“We hope that the preliminary results of the survey can help healthcare professionals, policy makers and pharmaceutical companies better understand the impact of axSpA from a patient perspective, and help improve the quality of care.” , treatment access and health outcomes for patients with axSpA,” said ASAPh President, Ing. Clark Ferrer.

From left to right: Dr. Bernadette Heizel M. Reyes, Professor, Division of Rheumatology, Department of Medicine, UP-PGH, Eng. Clark Ferrer, President, Axial Spondyloarthritis Association of the Philippines, Dr. Juan Javier Lichauco, President, Philippine Rheumatology Association, Dr. Gio Barangan, Scientific Director, Novartis Healthcare Philippines, Dr. Dominic Maddumba, Head, Strategy and Campaign Management Division , Health Promotion Office Department of Health, Christine Fajardo, Patient Engagement Manager, Novartis Healthcare Phils., Inc.

“The Ministry of Health commends the Philippine Axial Spondylitis Association and the Philippine Rheumatology Association for producing the Philippine Axial Spondylitis Map. This groundbreaking, patient-focused survey aligns with DOH’s agenda to improve health literacy, quality of care, and appreciation of primary care nationwide,” said Dr. Beverly Ho, Concurrent Director IV of the Bureau. DOH health promotion and disease prevention. and control office.

“Congratulations to PRA and ASAPh for completing this important investigation and for shedding light on a disease still poorly understood in the world. Together with our partners, we want to elevate the voice of Filipino patients with axSpA, help prevent diagnostic delays, and expedite the diagnosis of axSpA for better treatment outcomes,” said Mr. Jugo Tsumura, President and Managing Director of Novartis Healthcare Philippines, Inc..

“Novartis is working with its partners to help reduce diagnostic delays and shorten the patient journey by taking a multidisciplinary approach to patient care and providing patients with inflammatory back pain with tools and health information via Clarrio app,” said Ms. Christine Fajardo, Head of Patient Engagement, Novartis Healthcare Philippines, Inc.

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