Filipinos with axial spondyloarthritis face delayed diagnosis and heavy disease burden
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 disease burden of axSpA.
In celebration of World Axial Spondyloarthritis Day, the Philippine Rheumatology Association (PRA) and patient advocacy group Axial Spondyloarthritis Association of the Philippines (ASAPh) presented key findings of the Philippine Map of Axial Spondyloarthritis (PMAS). PMAS is the first comprehensive survey describing the demographic, disease characteristics, patterns of disease, diagnosis, and treatment of patients with axSpA in the Philippines. A total of 128 Filipinos living with axSpA participated in the online survey from July to October 2021, with the preliminary survey report completed in March 2022.
Patients with Axial Spondyloarthritis had to wait for six painful years before getting a diagnosis. Medical experts, support groups and the healthcare industry aims to change this. In celebration of World Axial Spondyloarthritis, Dr. Heizel Reyes, Professor, Division of Rheumatology, Dept. of Medicine UP-PGH, Engr. Clark Ferrer President, Axial Spondyloarthritis Association of the Philippines, Dr. Juan Javier Lichauco, President, Philippine Rheumatology Association, Dr. Gio Barangan, Chief Scientific Officer, Novartis Healthcare Philippines, Dr. Dominic Maddumba, Chief, Campaign Strategy and Management Division, Health Promotion Bureau at Department of Health, and Christine Fajardo, Patient Engagement Head, Novartis Healthcare Phils. Inc. presented the findings of the first Philippine Map of Axial Spondyloarthritis survey results. The study, funded by Novartis, aims to expand the knowledge of axSpa by gathering perspectives of patients diagnosed with the disease.
PMAS aimed to shine the spotlight on possibility and hope by listening to the voices and understanding the experiences of ALS patients.
PMAS key findings
AxSpA is a chronic inflammatory disease that primarily affects the spine and sacroiliac joints that connect the spine to the pelvis. Symptoms typically manifest as chronic inflammatory back pain, stiffness, and fatigue of the pelvis and lower back – although all regions of the body can be affected. AxSpA occurs in approximately 1% of the general population and can affect both men and women, with patients typically being in their twenties when they first develop symptoms.
Most of the survey respondents were from the National Capital Region (42.2%) and nearby regions (45.4%). Respondents’ age ranged from 18 and 77 years, with an average of 39 years. The majority were male (76.6%) and over half were married (54.7%). Almost half (44.3%) were overweight or obese. Hypertension (35.6%), uveitis or eye inflammation (33.6%), and high cholesterol (28.2%) were the most frequently reported comorbidities.
“What we have learned from listening to our patients in this Philippine Map is that there is a significant number of patients with comorbid conditions and extra manifestations. Most of them still have active disease, significant spine stiffness, and sometimes functional limitation,” noted Dr. Heizel Reyes, Professor, Division of Rheumatology, Dept. of Medicine UP-PGH and chief investigator of PMAS. “We’ve learned that the disease also negatively impacts mental, emotional, and psychological health as well as work functions. The preliminary information from the PMAS provides us with valuable data to further understand the impact of the disease on the patient, according to their perspective.”
The burden of the disease
Active disease, spinal stiffness, and hip inflammation were common among respondents. The majority of patients (75%) complain of moderate to severe back pain. People reported difficulty doing routine daily tasks and requiring assistance; physical activity, using public transportation, and tying shoelaces were the most commonly affected daily activities.
The productivity of a significant number of respondents was negatively affected by mental health issues. The top three of these are sleep problems (28%), anxiety (25.9%), and depression (25%). Furthermore, the survey results indicated a relationship between mental health and disease activity. Additionally, respondents reported that axSpA negatively affected their family relationships and social lives.
“We hope the patients with axSpA have access to mental health services. The psychological and psychosocial dimensions of our condition is very important,” noted Engr. Clark Ferrer, President of the Axial Spondyloarthritis Association of the Philippines. “We believe that having the right information will provide us with the opportunity to discuss our condition and treatment options. We want to be empowered so that we can participate in its management. PMAS will be very useful in raising our voices. This local evidence will also help in raising awareness so that our family, friends, colleagues and the general public will understand us better. We also hope that the PMAS results will provide us opportunities for health policies so that we can get access to better healthcare services.”
Using data to improve health services
PMAS results provide baseline data for healthcare experts and find ways to improve the diagnosis and treatment of patients with axSpa.
“We can do a lot to improve and shorten the diagnostic delay. The Philippine Rheumatology Association has incorporated certain strategies in the pipeline. We have been supporting through certain programs and activities to improve patient awareness. We also are supporting the initiative of Novartis Philippines in terms of the Clario app, which is an easily downloadable app on the phone for patients who have back pain. This provides the opportunity for a person to have educational materials about how to manage back pain, and also to fill up a quick inflammatory back pain questionnaire, to screen for patients with potential axial spondyloarthritis and they can easily get connected with our website to see consultation with a rheumatologist,” explained Dr. Juan Javier Lichauco, President of the Philippine Rheumatology Association.
“We want an action that reduces the delay in diagnosis and event acceleration of patients. Patients can no longer wait to be relieved from suffering brought by axSpa. The role of the pharma industry in research and development is focused in building innovative partnerships with different healthcare organizations and academia to improve patient outcomes,” noted Dr. Gio Barangan, Chief Scientific Officer of Novartis Healthcare Philippines
Patients diagnosed with axSpA can use the referral and diagnosis network program that helps connect patients to rheumatologists spine, orthopedic surgeons, radiologists, and other important specialists such as ophthalmologists and gastroenterologists.
The Department of Health is also taking the lead in promoting prevention and early intervention through public health education and awareness. Dr. Dominic Maddumba, Chief, Campaign Strategy and Management Division of the Department Of Health (DOH) Health Promotion Bureau, explained that the department is working with local government units to educate and equip local healthcare providers with the right knowledge to effectively perform the decision-making process in the management of axSpA patients.
“It is part of our project now to include key information about axSpA on the Healthy Pilipinas website and include it in our A-Z compendium,” emphasized Dr. Maddumba. “We will also underscore the importance of improving health-seeking behavior through immediate consultation with the primary care provider and promoting services for early screening and detection of back pains.”
Novartis Healthcare Philippines continues to support patients by providing a platform to raise awareness, investing in research and development, and ensuring access to diagnosis and treatment of axSpA. Through PMAS and its succeeding surveys, medical experts and patient support groups hope to get one step closer to finding better ways to manage axSpA. For more information, visit https://www.novartis.com/ph-en/.
ADVT.
