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Sjögren's syndrome (SS), a chronic immune mediated disease associated with xerostomia and keratoconjunctivitis sicca, may occur alone (primary SS) or with other autoimmune diseases (secondary SS).1 The benefits of substitution treatment for dry eyes and mouth seem very variable. This survey assessed patients' experience of the wide variety of tear and saliva substitutes available.
Patients with SS, from Cannock Chase Hospital, University Hospital Birmingham, City Hospital Birmingham, or Birmingham Heartlands and Solihull Hospitals, completed a questionnaire, returned at their clinic visit or by prepaid post. SS was defined by the presence of four from six EC diagnostic criteria, with the modification that patients with primary SS must have anti-Ro antibodies (by enzyme linked immunosorbent assay (ELISA) or countercurrent immunoelectrophoresis) and/or have had a lip biopsy demonstrating features typical of SS.2 The questionnaire asked patients to identify, from a comprehensive list, all tear and saliva substitutes that they had ever heard of, had ever used, or were currently using, to identify useful source(s) of information about substitute treatment, and to rate the effectiveness of any treatments they had ever used, on 10 cm visual analogue scales (VAS). The duration of any substitute treatment was not recorded. Demographic, clinical, and laboratory data for each patient were obtained by chart review. The Mann-Whitney U test was used to compare results between groups. Research ethics committee approval was obtained for this survey.
Fifty patients (two male), including 40 with primary SS, were included in the survey. Mean age (range) was 57 (33–82) years and disease duration 5 (0–14) years. Forty three patients had symptomatic dry eyes, 36 had gritty eyes, and 31 patients used tear substitutes three or more times each day. All complained of a dry mouth, 42 had difficulty swallowing dry food, and 23 patients had recurrent or persistent salivary gland swelling. Thirty two patients had positive anti-Ro antibodies and 39 patients had undergone a diagnostic labial salivary gland biopsy. On a 10 cm VAS, the mean rating of disease severity was 6.2 cm (range 0.0–9.8).
Non-proprietary hypromellose eye drops and Viscotears were the most widely known and used tear substitute treatments (table 1). Four patients had never heard of any of the tear substitutes listed, despite two having symptomatic dry eyes; six had never used any and 11 were not currently using any. Oralbalance, Glandosane spray, Saliva Orthana spray and lozenges, and Salivix pastilles were the most widely known and used saliva substitute treatments. Eight patients had never heard of any of the saliva substitutes listed, despite all having a symptomatic dry mouth; nine had never used any and 22 were not currently using any. Patients' rated the effectiveness of any replacement product they had used (fig 1). The median (range) VAS score for all tear products was 5.35 (0.25–9.8), which was significantly higher than for saliva products where the median (range was 3.15 (0.2–9.5) (p<0.002)). There was no significant difference between the effectiveness ratings of any of the tear or saliva products, except that Salivix pastilles were rated significantly higher than Glandosane spray (p<0.05). Seventeen patients viewed their general practitioner as a good source of information about substitution treatments, 34 highlighted the important role of hospital staff, 16 nominated local and national patient support groups, and smaller numbers had received information from their dentist (seven subjects), optician (two), and pharmacist (three).
This survey has shown that a relatively select number of replacement products are regularly used in SS. Only two tear replacement products were widely used, though most patients had heard of other products and had tried some. It seems likely that patients have continued to use the product that they found most effective. Some patients were taking no tear replacement treatment, including two who denied ever hearing about such treatment, despite having dry eyes. In these patients, there is a concern that their health professionals might have failed to advise of potential symptom relieving treatments. A wider variety of saliva replacement products were used, but by a smaller proportion of patients. This may suggest that they were less helpful overall, because many were known to and tried by the patients though clearly not continued. Reports on the effectiveness of these products comprise small placebo controlled studies and an occasional comparison of two active treatments.3 A survey of their use in routine clinical practice has not previously been described. Although it has limitations, this study suggests that patients need better information about the products available. There are few published guidelines even for medical personnel,4 though the internet may help to remedy this for doctors and patients (http://www.dry.org/ss95gui.html). This study has also shown the gulf remaining between the many available tear and saliva replacement products and their use by patients.
We thank Dr L Rankin, Dr P Jobanputra, and Dr R Jubb for allowing us to survey their patients at Selly Oak Hospital, Birmingham.
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