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  1. A. Alunno1,
  2. F. Carubbi1,
  3. F. M. Mariani1,
  4. J. Cipollone1,
  5. M. Rossi1,
  6. C. Ferri1
  1. 1Internal Medicine and Nephrology Division, University of L’Aquila, Department of Life, Health and Environmental Sciences, L’Aquila, Italy


Background Dysphagia is the most frequent symptom reported by pSS patients with gastrointestinal involvement and may be related to a combination of hyposalivation and oropharyngeal/oesophageal dysmotility.

Objectives To explore the burden of dysphagia and related symptoms and the access to specialist care in patients with pSS.

Methods Consecutive patients with pSS fulfilling the 2016 ACR-EULAR classification criteria and referring to our institution were interviewed. Patients reporting swallowing problems filled the Swallowing Quality of Life (SWAL-QOL) questionnaire. The SWAL-QOL includes 10 domains: food selection, burden, mental health, social functioning, fear, eating duration, eating desire, communication, sleep, and fatigue. It also explores presence and frequency of various symptoms such as cough, choke on food or liquids). Patients having sought for specialist care for dysphagia filled the SWAL Quality of Care (SWAL-CARE) questionnaire. The SWAL-CARE includes 2 domains to report on the clinical and general advice received (e.g. on food/drinks to avoid) and on the patient satisfaction. The scores of each domain (Likert scales) are transformed to a 0–100 metric with 100 indicating the most favorable state and 0 the least favorable state. Disease activity (ESSDAI) and patient reported symptoms (VAS scales, ESSPRI, xerostomia inventory (XI) and Oral Health Impact Profile (OHIP)-14) were calculated at the time of enrollment.

Results An interim analysis on 108 recruited patients as of December 4, 2022 was performed. Twenty-five patients (23%) reported swallowing problems. All SWAL-QOL domain scores and the total SWAL-QOL score were very low while symptom presence and frequency were very high. The most affected domains (mean value <30) were fear, mental health, fatigue and sleep (Table 1). The “mental health” and “social functioning” domains were more affected in people with shorter disease duration regardless of age (p<0.01). Conversely, the “burden” domain, reflecting the capability to cope with dysphagia, was more affected in younger people (p=0.03). A proportion of patients ranging between 48 to 84% reported having symptoms often or almost always and none of the patients responded “never” for any of the symptoms (Figure 1). When exploring how the extent of dryness relates to dysphagia, the VAS scales for xerostomia and xerotrachea did not differ between patients with or without dysphagia. However, patients with dysphagia had significantly higher scores of the XI and the OHIP-14 compared to those without (both p<0.01). No differences in terms of age, disease duration, autoantibody profile and disease activity emerged between pSS patients with or without dysphagia. Focusing on ESSDAI domains, we observed that all patients with dysphagia also had articular manifestations (p<0.01) while haematological manifestations were more frequent in patients without dysphagia (p=0.03). Of the 25 patients with dysphagia only 10 (40%) sought specialist care. Most of the patients judged the advice received poor (mean =10.4) and overall patient satisfaction was very low (mean= 28.5).

Conclusion Our study demonstrated that dysphagia and related symptoms are frequent and severe in pSS, heavily impact on the patient quality of life and satisfactory specialist care remains an unmet need. Younger people and those with a shorter disease duration seem those whose QoL is more affected. We are currently increasing the patient cohort and planning further investigations in patients with dysphagia (e.g. oesophageal manometry) to better characterise the mechanisms underlying this problem in pSS.

Reference [1]McHorney CA et al. Dysphagia 2002;17:97-114

Table 1.

Domains and total SWAL-QoL score in pSS patients with dysphagia

Figure 1.

Frequency of dysphagia-related symptoms

Acknowledgements: NIL.

Disclosure of Interests None Declared.

  • Gastrointestinal tract
  • Sjögren syndrome
  • Quality of life

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