Arthritis & Rheumatism, Volume 62,
November 2010 Abstract Supplement
Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Atlanta, Georgia November 6-11, 2010.
Ankylosing Spondylitis Patient OrganisationsAre There Benefits of Membership?
Song1, In-Ho, Brenneis1, Cornelia, Hammel2, Ludwig, Feldtkeller2, Ernst, Listing3, Joachim, Sieper1, Joachim, Rudwaleit1, Martin
Patient organisations for ankylosing spondylitis (AS) exist in many countries. The aims of these patient organisations are to inform and to educate patients in order to help them better deal and cope with the disease, to organize supervised physiotherapy groups, to support the exchange of experiences, and to represent the interests of patients in society and law (see www.spondylitis-international.org).
To evaluate differences between AS patients who are members of a patient organisation and AS patients who are not such members.
The German Ankylosing Spondylitis Society (DVMB) is a large patient organisation with more than 14,000 members in Germany. A cross-sectional survey based on a questionnaire was performed between December 2008 and April 2009. The questionnaire consisted of 82 questions regarding demographics, diagnosis, smoking, acquisition of information about the disease, disease activity, mobility, functional status, patient satisfaction, quality of life, treatment and disability to work and educational level. The questionnaire was distributed to AS patients by rheumatolgists in 51 hospitals and/ or private practices. In addition, the questionnaire was sent to 3400 randomly selected members of the German AS society. Data collection and analysis was done anonymously.
In total, 1273 patients responded (1068 members of the patient organisation and 205 non-members). As DVMB members and non-members were not comparable regarding age (mean 54.9 vs. 46.6 years) and disease duration (mean 30.2 vs. 20.1 years) we performed a 2:1-matching of members to non-members regarding age, disease duration and also sex. In the matched population (n=549), members (n=366, mean age 47.0 years, mean disease duration 21.1 years, 63.9% male, HLA-B27 positive 89.0%) and non-members (n=183, mean age 46.3 years, mean disease duration 20.1 years, 63.9% male, HLA-B27 positive94.6%) differed in the following aspects: members more often felt that they were well informed (62.2% vs. 35.4%, p= < 0.001), more often used the information provided by the patient organisation (58.5% vs. 11.5%, p< 0.001), and more often had a positive family history for AS (34.4% vs. 23.3%, p= 0.004). There were nodifferences regarding disease activity (BASDAI 4.0 vs. 4.2, p= 0.172) or in the percentage of patients taking NSAIDs, DMARDs or anti-TNF-blocking agents.
Members as opposed to non-members had a better functional status (BASFI 3.4 vs. 3.9), p= 0.021), had less work days missed during the last year (15.1 days vs. 31.2 days, p= 0.003), were more often non-smokers (55.9% vs. 71.0%, p= 0.001). However, significantly more members had a higher educational status (e.g. percentage with university diploma 26.0% vs. 12.4%, p< 0.001).
There are numerous benefits associated with the membership in an ankylosing spondylitis patient organisation. AS patients who are members feel better informed about AS, have a better functional status and a healthier life style, and, overall, seem to cope better with the disease than non-members. Whether the educational status and the degree of physically challenging jobs influence the findings needs further examination.
To cite this abstract, please use the following information:
Song, In-Ho, Brenneis, Cornelia, Hammel, Ludwig, Feldtkeller, Ernst, Listing, Joachim, Sieper, Joachim, et al; Ankylosing Spondylitis Patient OrganisationsAre There Benefits of Membership? [abstract]. Arthritis Rheum 2010;62 Suppl 10 :1923