AB0923-PARE WHAT IS THE IMPACT ON THE QUALITY OF LIFE (QOL) OF PEOPLE LIVING WITH SPONDYLOARTHRITIS (SPA*)?

Abstract

Background: SpA describes a group of chronic inflammatory arthritic diseases with common features including inflammation of the spine, eyes, skin and gastrointestinal tract. These conditions can be painful and debilitating for many. Delayed diagnosis and treatment can lead to irreversible damage to the spine and other joints. Diagnosis of these conditions can take, on average, 7 years or more. We don't know what causes SpA and there is no cure. The onset of symptoms can be in early childhood and expands throughout one's lifespan. It affects children, women and men worldwide. Objectives: To understand how living with SpA impacts QOL (including relationships, work and day-to-day life) and what is important to patients in order to help the CSA∗ ∗ prioritize advocacy focus and resource development. Methods: The CSA surveyed the community virtually from 11/19/19 to 01/21/20. The results of 838 respondents were analyzed after the survey closed. Results: 66% of respondents had been diagnosed with Ankylosing Spondylitis and 24% with Psoriatic Arthritis. 22% were diagnosed with more than one form of SpA. Over 70% reported their day-to-day life was negatively impacted by SpA. Only 7% indicated no impact on their daily life and 22% said it was somewhat impacted. Ability to remain in the workplace was impacted and 16% reported being on long-term disability and 4% on short-term disability. There were 7% who retired early due to their disease. Sleep loss/interruption was reported by 89% and 74% said they avoid social events. 41% of participants are highly restricted by SpA when it comes to tasks like outdoor yard work. Other highly restricted tasks include exercise (36%) and cleaning (31%). Tasks of medium restriction include preparing meals (31%) and engaging in intimate relations (30%). Upon diagnosis and disease progression, many reported less frequent participation in exercise, travel, intimate relationships, social outings and family activities. Some even said they stopped participating in these all together. When asked to rank what was most important regarding QOL, most ranked living with no/reduced pain as most important, followed by improved sleep/no fatigue. The least important were returning to work and going out with friends. Conclusion: SpA conditions have a negative impact on QOL and are a burden causing patients to constantly assess their situation, worry about tomorrow and adjust different aspects of their lives. Results confirmed every aspect of life is impacted, both physically and mentally, leaving people feeling hopeless and without a purpose. Many can no longer work or do their favorite hobbies which leads to emotional and mental difficulties. People struggle with maintaining social and intimate relationships, intensifying social isolation and low self-confidence. Many indicated that their loved ones have difficulties understanding chronic pain and illness, making patients feel like a burden. This may be attributed to general lack of knowledge about SpA. The unpredictability of the disease impacts QOL leaving patients hesitant to make social plans in advance. Even those who are undergoing successful treatment and have improved QOL worry about the future. QOL can be improved with proper treatment, management and support. Many expressed frustrations of being limited by their disease and indicated that it is often the chronic pain that causes these limits. It is clear that by living with less pain, patients can improve all aspects of their lives and be happier. The CSA is committed to educating, supporting and advocating on behalf of Canadians impacted by SpA to improve health outcomes and QOL. It doesn't have to be visible to be real. Together we are stronger! Footnotes: ∗SpA conditions include: Ankylosing Spondylitis, Psoriatic Arthritis, non-radial SpA, Axial and Peripheral Spondyloarthritis, Enteropathic Arthritis, Reactive Arthritis and Juvenile Onset Arthritis ∗ ∗The Canadian Spondylitis Association (CSA) is a national non-profit patient association supporting and advocating for those living with SpA.