190 Chapter 9 The seventh part of questionnaire was about potential side-effects of saliva substitutes. For each side-effect, the patient could indicate if they would experience it as unpleasant by using a 5-point Likert scale ranging from 1 = “Not unpleasant” to 5 = “Very unpleasant”. Table 4 presents the investigated potential side-effects of salivary substitutes. Finally, a question was included about the preferred method of administration of the saliva substitutes, whereby patient could choose a mouth gel, a mouth spray, an oral rinse, or a tablet. Data analysis The data were statistically analysed with SPSS, version 28.0 (IBM Corp SPSS statistics, Armonk, NY, USA). The Shapiro–Wilk test was used to assess the normality of the data. As not all variables were normally distributed, the data are presented as medians and their interquartile range (IQR). To clarify relatively small differences, the mean and standard deviation (SD) are also reported. The respondents were dichotomized based on their age and the severity of their xerostomia. The two xerostomia groups were used to test the hypothesis whether Sjögren’s syndrome patients with less severe dry-mouth experience prefer other flavours than patients with more severe dryness. The median of these two parameters was used to divide them into two groups: birth year ≤ 1958 versus birth year ≥ 1959 and mouth dryness with a XI score ≤ 46 versus mouth dryness with a XI score ≥ 47. A Mann–Whitney U test was used to explore whether the subgroups of respondents varied based on their respective answers. All significance levels (α) were set at 0.05. RESULTS At the time the questionnaire was distributed to the patients, the patients’ association had 2115 members. In the period when the questionnaire was available online, the association’s website was visited by 1485 people. During this period, 59 Sjögren’s syndrome patients completed the questionnaire. Almost all respondents were women (N = 58, 98%). The mean age of the respondents was 55.7 ± 12.0 years, ranging from 25 to 79 years. The respondents reported that the Sjögren’s syndrome had been diagnosed between 1 and 36 years ago. The total XI score of all patients had a median of 47.0 with IQR of 43.0–51.0.
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