POS0094-PARE NOVEL TOOL “THE SJÖGREN’S SYMPTOMS CARD AND THE POSITIVE HEALTH SPIDER WEB’
Authors: J. Koelewijn-Tukker, A. Baert-Jansen, M. Visser-Noordegraaf, W. Wissink, S. Blokland
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Sjögren's disease is heterogeneous; symptoms of dryness, fatigue, pain, organ involvement and impact on quality of life differ between patients. During follow-up visits rheumatologists/clinical immunologists and nurses try to identify the patient's needs. Symptoms, including organ involvement, risk of lymphoma are analyzed and the disease burden and consequences for the patient's prognosis and quality of life are assessed. A complete overview of the symptoms and effective communication are essential for a high quality and meaningful follow-up visit for both the patient and the doctor. A patient needs to be able to share concerns, ask questions and understand information and advice. Shared decision making is important to determine treatment and follow up. Barriers including limited amount of time, miscommunication and patient factors including anxiety and brain fog may impair quality and satisfaction of a follow-up visit. <h3>Objectives:</h3> The objective is to develop a tool to improve communication between patients and care providers in order to improve quality of care and satisfaction for both the patients and doctors/nurses. The aim is to enable patients to prepare for the follow-up visit, prioritize subjects to discuss, and for care providers to efficiently assess symptoms and effectively address the issues in the patient's well-being. <h3>Methods:</h3> Members of the National Sjögren's Patients Association [1] developed the Sjögren's Symptoms Card and adapted the Positive Health questionnaire and the corresponding spider web – a diagram that incorporates the six dimensions of positive health [2]. The most common Sjögren's disease associated symptoms are indicated on the Sjögren's Symptoms Card on which the patient scores his/her symptoms on a scale of 0 (no complaints) to 10 (most complaints). The spider web (score 0 – 10, 0 indicating the most complaints – 10 indicating no complaints) gives insight into how the patient is functioning in daily life. The method of scoring corresponds to the methods for international questionnaires and questionnaires of other types of diseases. To improve accessibility for patients all texts were adjusted to level B1 language (Dutch). <h3>Results:</h3> The Sjögren's Symptoms Card (Figure 1A) and the Positive Health questionnaire with corresponding spider web (Figure 1B) were developed and shared with members of the NVSP and via national networks of clinicians. <h3>Conclusion:</h3> The Dutch Sjögren's disease patient organization develop the Sjögren's Symptoms Card and incorporated the Positive Health spider web as tools to improve communication during follow-up visits. This tool provides an overview of symptoms and the severity and what the patient suffers from in daily life. Completing the set gives the patient an active role, it helps the patient to prepare questions and encourages the patient to achieve a better quality of life. The preparation by the patient also helps the healthcare professional to achieve a meaningful consultation. The next step will be to evaluate whether these tools indeed improve collaborative patient-doctor/nurse communication during follow-up visits resulting in improved quality of care and satisfaction. <h3>REFERENCES:</h3> [1] National Sjögren's Patients Association: www.NVSP.nl. [2] Positive Health: www.iph.nl. <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> <b>None declared.</b>