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AB0471 FIRST SYMPTOMS AT THE ONSET OF PRIMARY SJÖGREN’S SYNDROME – THE PATIENTS’ PERSPECTIVE OF A SNEAKY DISEASE

Primary Sjögren Syndrome (PSS) is an autoimmune disorder with a diverse spectrum of clinical manifestations ranging from sicca symptoms to severe systemic organ involvement. Little is known about the symptoms at the onset of PSS, as these are often ignored by both, patients and physicians leading to a substantial delay of diagnosis.The aim of this study was to investigate patients’ recollection of the first symptoms before diagnosis of PSS in qualitative interviews. The second aim was to verify and quantify these aspects in a representative cohort.All PSS patients fulfilled the EULAR/ACR 2016 classification criteria. In the first part of the study, consecutive PSS patients were recruited for individual, semi-structured interviews. A discussion guide with five open-ended questions was developed to explore patients’ experiences on the onset of PSS. All interviews were audio-recorded and transcribed verbatim, and an inductive thematic data analysis was performed using MAXQDA software (VERBI, Berlin, Germany).In the second part, the identified aspects of the qualitative analysis were grouped to a checklist with ten items. Patients were asked to complete the checklist before their routine clinical assessment.One-hundred and thirty-four patients participated in the study. The qualitative part was completed by 31 PSS patients; 90.3% (n=28) were female and patients had a mean disease duration of 6.9 years (±5.7(SD)) and a mean age of 58.1 years (±12.6).Four different major aspects emerged of how patients experienced the beginning and first symptoms of PSS: (1) sicca symptoms started after initial swelling of parotis and/or lymph nodes (2) “Classic” PSS symptoms (fatigue, pain, dryness): patients reported wandering joint pain before diagnosis with a long time apart from first symptoms until diagnosis. Patients described joint pain, chronic malaise, and fatigue over months. (3) Hormonal changes (e.g. after birth, hysterectomy) or infections before the onset of PSS symptoms. (4) Slowly progressing discomfort due to sicca: patients reported a slow progression of symptoms with no initial recognition of sicca discomfort. In these patients recurrent dental problems and loss of teeth in the years prior to diagnosis was common.In the second part of the study, the four themes were verified in an independent cohort of 103 PSS patients. Patients were 59.9 (±13.7) years old and six patients were male. The main symptom before diagnosis was dryness (n=77, 74.8%) with wandering joint pain (n=51, 49.5%) and fatigue (n=47, 45.6%). In 38.8% (n=40), patients reported a swelling/inflammation of the parotid gland at the onset of disease.We identified four themes describing the initial symptoms of PSS. Raising awareness of these symptoms among physicians and among the general public may allow earlier diagnosis of PSS.None declared