Ankylosing spondylitis self-help organisations - do members differ from non-members?

Area of Science:

• Rheumatology
• Patient Support Systems
• Health Outcomes Research

Background:

• Patient self-help organizations are recommended for ankylosing spondylitis (AS) management.
• Understanding the comparative characteristics and outcomes of AS patients in self-help groups versus non-members is crucial for assessing membership benefits.

Purpose of the Study:

• To compare members and non-members of an AS self-help organization on disease-specific and patient-related factors.
• To identify potential benefits associated with self-help organization membership for AS patients.

Main Methods:

• A comprehensive questionnaire was administered to AS patients, assessing demographics, lifestyle, disease information, activity, functioning, and treatment.
• Data from 1273 respondents were analyzed, with a matched population (n=549) used for detailed comparison between members and non-members.

Main Results:

• AS members reported higher education, felt better informed, had less physically demanding jobs, and smoked less than non-members.
• Members showed similar disease activity (BASDAI) but better functional status (BASFI) and significantly fewer sick leave days (15.1 vs. 31.2).
• Non-members appeared to have more severe disease, indicated by less frequent NSAID use and more frequent TNF-blocker use.

Conclusions:

• AS patients in self-help organizations demonstrate higher educational attainment and greater disease awareness.
• While potential benefits like improved function and reduced sick leave are suggested, confounding factors limit definitive conclusions on disease outcome measures.