ABSTRACT
Background. The National Sjogren's Patient Association (NVSP), the only Sjogren's patient association in the Netherlands, was founded on 10 December 1986 and currently has 2150 members. Our goals are to represent the interests of our members and to provide patients and their families with information. Objectives. The NVSP receives questions through several channels from patients with Sjogren's and non-Sjogren sicca. They are worried about the consequences of the restrictions on daily life and work and what corona can do to their disease. Methods. An attempt was made to get a picture of what the patients think by means of a survey. The results of the survey can lead to recommendations. In this way, their concerns can be addressed and the continuity of care among the many care providers with whom a Sjogren's patient comes into contact can be guaranteed also during the corona pandemic. Results. A total of 95 patients completed the survey in the period from 26 May to 20 July 2020, between the first and second lockdown. Concerns about corona in relation to daily life and work: 73% of respondents adjusted their daily activities during the pandemic due to government guidelines and the fear of getting corona. Hobbies outside the home and voluntary work have been drastically reduced. Working at home increased because employers did not consider it wise to come to work. Continuity of healthcare: A quarter of the participants think that healthcare has changed a lot to very much (Fig. 1). Relatively many appointments with GPs, dentists, oral hygienists, ophthalmologists and physiotherapists were cancelled, rescheduled or postponed compared to the other disciplines. The GP was virtually unavailable by phone. Concerned more than others: Corona contributes to uncertainty in Sjogren's patients for several reasons. It is not clear in which case the condition leads to a higher risk of corona and what it means for work. Conclusions. Concerns about corona in relation to daily life and work: people have started to work more inside than outside, both in business and in private. Continuity of healthcare: due to the sudden pandemic, many decisions were made about the patient and not with the patient. Even though many appointments continued, albeit in a different way, the patients were very satisfied with this. Alternatives to maintain face-to-face contact with patients (such as video calling) were not sufficiently explored. Concerned more than others: 66% indicated that they consider themselves vulnerable to corona because they have Sjogren's disease (Fig. 2), or take immunosuppressive medication, or because the specialist indicates that they are in a high-risk group. Several of the above factors may apply to a patient. (Figure Presented).