Differences in patients with systemic sclerosis recruited from associations and tertiary care settings

To compare patients with systemic sclerosis (SSc) recruited from a patient association or a tertiary care setting.

We evaluated 248 SSc patients attending 4 annual meetings of a patient association between 2004 and 2007 (177) or during hospitalization (71). health-related quality of life (HRQoL) was assessed by the SF-36, global disability by the health assessment questionnaire (HAQ), hand disability by the Cochin Hand Function Scale (CHFS), mouth disability by the Mouth Handicap in Systemic Sclerosis (MHISS) scale, global hand and wrist mobility by the Kapandji index.

As compared with hospitalized patients, those from the patient association were significantly older (mean age 58.73 ± 12.04 vs 53.818 ± 13.1; p=0.001) and had a longer disease duration (10.98 ± 8.7 vs 7.13 ± 6.723 p=0.0001). Association patients had significantly increased disability of the hand (CHFS 21.8 ± 19.8 vs 9.8 ± 14.1; p=0.0001) and mouth (MHISS 20.65 ± 10.8 vs 13.25 ± 9.3; p=0.0001) and impaired hand and wrist mobility (Kapandji score 38.05 ± 10.26 vs 43.90 ± 8.26, p=0.001). The 2 groups did not differ in global disability or physical and mental scores of the SF36.

Patients recruited from a patient association have more severe SSc than do hospitalized patients. This finding must be taken into account in the design of surveys and clinical trials.