179 Oral dryness and use of dry-mouth interventions Sjögren’s syndrome is an autoimmune disease that predominantly affects women. The female to male ratio of Sjögren’s syndrome is 10:1 [35]. This means that vast majority of female respondents in the present study (89%) is a good representation of the gender distribution of Sjögren’s syndrome in the Dutch population. A possible limitation of the present study could be that the recruitment of the participants may have introduced a certain bias into the study. It can be assumed that Sjögren’s syndrome patients who visited the annual meeting of the patient federation suffer significantly from their disease and want their stories and problems to be heard. The response rate of these participants was 52%, whereas a response rate of 70–80% is envisaged to be ideal to eliminate a potential nonresponse bias [36], though the current response rate is comparable with the response rates of a previous study using a questionnaire (56%) which investigated health problems, health information sought and attendance of general practice in elderly patients with approximately the same age as our study sample(70 years vs 64 ± 10 years in the current study) [37]. If a reminder was sent to the participants, then it could positively have affected the response rate. Several studies have shown that sending a reminder increased the response rate [38, 39]. However, sending reminders was not possible in the current study due to the General Data Protection Regulation (GDPA) restrictions with regard to collect personal data such as name and address. Therefore, it is possible that the study sample in the present study is not representative for the total Sjögren’s population, as part of the opinion of the silent part of the population may not be present. Additionally, patients attending the annual meetingmay be more interested in their oral health than other Sjögren’s syndrome patients. This may have introduced an additional bias in the questionnaire responses that may have led to an overestimation of their perceived oral dryness. A limitation of the current study could be that some specific interventions were not included in the questionnaire. For example, the low number of patients that reported the use of Xylimelts could be due to the fact that this intervention was not included. Also, the frequency and efficiency of the drymouth interventions were not included in the questionnaire. E.g., it is possible that Sjögren’s syndrome patients drank water many times a day, while they moistened their lips only one or twice a day. The perceived effectiveness of the dry-mouth interventions should also be evaluated, for example by asking the patients to rate this on a Likert scale. As the effectiveness of dry-mouth interventions might be related to the degree to which the salivary glands are still sensitive to stimulation [31], it is important that prospective studies 8
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