Background/Purpose: While severe pain and stiffness are common hallmarks of ankylosing spondylitis (AS), disease progression is slow and not always visible; however, the quality of life (QoL) of patients with AS is still significantly impacted. We aimed to assess patient-reported impact of AS on QoL in the physical, discomfort, social, and emotional domains among US patients with AS in a real-world setting.

Methods: Descriptive data on demographics and QoL were collected from a random sample of patients associated with the Spondylitis Association of America (SAA). QoL measures were based on the Evaluation of Ankylosing Spondylitis Quality of Life (EASi-QoL) questionnaire (scale, 0-80, with higher score indicating more severe impact). Between July 7 and December 31, 2017, 820 interviews were conducted with SAA contacts via web survey or follow-up over the phone. Of 820 participants who completed the survey, 716 self-reported receiving a diagnosis of AS from their doctor and were included in this study. Participants were queried on the impact of AS on their QoL within the day of survey participation with regard to the physical domain, and within the past week prior to participation with regard to the discomfort, social, and emotional domains. A 3:1 (male to female) weighting was performed to reflect the reported prevalence of spondyloarthritis in US adults.

Results: The mean age of the 716 respondents was 55.5 years; 46.9% were male. The most common locations of pain reported were the lumbar spine (86.8%), neck (84.1%), and hip joint (80.2%). The mean total EASi-QoL score was 28.9; overall, 33.7%, 31.7%, and 34.7% of respondents, respectively, reported low (EASi-QoL score 0-17), medium (18-35), and high (≥ 36) impact of AS on QoL (weighted). Physical aspects of the disease contributed the most impact, with 41.9% of respondents (weighted) reporting high impact of AS on the physical domain (EASi-QoL score ≥ 10). The proportion of respondents reporting high impact of AS (ie, the top 2 levels of impairment for each question) in the 4 QoL domains is shown in Figure 1A. Women were significantly more likely than men to report high impact of AS in several aspects in all QoL domains, such as lifting a child or heavy objects (43.2% vs 27.8%), worrying about the future (37.3% vs 23.5%), feeling tired or lacking in energy (46.4% vs 33.4%), sleep interference (32.7% vs 23.4%), trouble keeping physically active (35.9% vs 26.6%), standing for 30 minutes (34.9% vs 26.0%), and traveling by car or public transport (19.2% vs 10.5%). AS also impacted their lifestyle, as shown in Figure 1B. 

Conclusion: Negative impacts in all QoL domains were reported, with a mean overall EASi-QoL score of 28.9. Sex differences were also pronounced in several aspects, including lifting a child or heavy objects, and worrying about the future. Incorporating subjective measures of disease via patient-reported outcomes should be considered with evaluation of disease progression.