Ankylosing spondyltitis instruments lacking in patient's perspective

The classic disease-specific instruments for evaluating ankylosing spondylitis (AS) are geared toward the needs of researchers and clinicians. Therefore, they often do not cover aspects of the disease that are important to patients and those factors are neglected.

Boonen and associates used the International Classification of Functioning, Disability, and Health (ICF), a universal approach to understanding and classifying functioning and health, as a starting place to qualitatively identify the concepts that are important to functioning for persons with AS. The investigators also explored whether the concepts that matter most to patients are covered by existing AS-specific instruments.

Based on information gathered during 4 focus group interviews of 19 patients each, the investigators concluded that the classic AS-specific assessment instruments do not cover aspects of functioning that are important to patients. The main areas in which the patients thought that these instruments could be improved included the influence of AS on socializing, leisure pursuits, and environmental and personal variables.

The authors noted that using the list of ICF categories important for patients might help broaden the scope of problems in functioning with AS for researchers and for physicians assessing health in those with the disease.