SAT0635-HPR THE BURDEN OF SCLERODERMA FROM PATIENTS’ PERSPECTIVE
Authors: A. Opinc, O. Brzezińska, J. Makowska
Journal: Annals of the Rheumatic Diseases (2020)

Background: Scleroderma can significantly impair daily functioning by leading to multi-organ involvement and profound fatigue. Recent studies suggest that objective measures of the disease severity may not necessarily correspond with the patients’ perception 1 . Objectives: To evaluate the degree of disability and fatigue in patients with scleroderma, distinguish the most troublesome activities and assess which clinical symptoms had mostly impact on daily functioning. Methods: An online questionnaire was created and distributed to English-speaking patients with scleroderma by means of online support groups. The questionnaire contained inquiries about demographical data, clinical symptoms as well as the Scleroderma Health Assessment Questionnaire (SHAQ, comprised of HAQ-DI and specific VAS scales) and Functional Assessment of Chronic Illness Therapy – Fatigue (FACIT-F). Standard and Alternative Disability Indexes (SDI and ADI) were counted based on answers in HAQ-DI part. Degrees of disability and fatigue, reflected by SDI, ADI and FACIT-F scores, were compared between subgroup of patients with and without particular clinical symptoms. Responses were analysed statistically. Results: Questionnaire was completed by 85 responders (mean age 48,93±14,4; 98,82% were female). Mean SDI was 1.09±0.66 with 41.18% of patients fulfilling the criteria of mild to moderate difficulty (SDI&lt;1), 50.59% classified as moderate to severe disability (1≤SDI&lt;2) and 8.24% being severely or very severely disabled (SDI≥2). Mean value of ADI was 0.93±0.61. 56.47 % of responders needed aid of the caregivers while gripping/opening, 31.76% while reaching and 29.41% while running errands and chores. Most frequently used facilitating devices included devices for gripping/opening (32.94%) and for maintaining hygiene (21.18%). Mean value of overall disease severity was estimated by VAS as 52.06±0.66. The mean values of VAS assessing the impact on daily living were respectively 48.16±29.28 for pain related to the disease, 43.34±34.94 for Raynaud’s, 41.86±34.59 for gastrointestinal problems, 31.60±31.38 for breathing difficulties and 20.85±33.47 for finger ulcers. Mean FACIT-F score was 23.62±11.88 yet 71.76% of patients fulfilled the criteria of severe fatigue. Both SDI and ADI correlated with FACIT-F score (respectively r=-0.5684, p&lt;0.0001 and r=-0.5711, p&lt;0.0001). SDI, ADI and FACIT-F correlated with VAS scores for overall disease severity, pain, gastrointestinal and breathing problems. Patients with symptoms such as arthralgia, muscle weakness, dysphagia, blurred vision, hair loss, unintentional weight loss and hoarseness were statistically more disabled and fatigued as compared to patients without such symptoms. Responders with skin ulcers/non-healing wounds (other than finger ulcers), Raynaud’s or erythema/rash were more disabled than responders without such symptoms, yet no differences were observed in the degree of fatigue. Conclusion: Majority of patients with scleroderma are moderately to severely disabled yet cope with the impairments with the widespread use of facilitating devices or aid of caregivers. Profound fatigue, observed in the majority of patients, may contribute to the high overall perception of disease severity. References: [1]Jaeger VK, Distler O, Mauer B et al. Functional disability and its predictors in systemic sclerosis: a study from the DeSScipher project within the EUSTAR group. Rheumatology (Oxford). 2018 Mar 1;57(3):441-450. doi: 10.1093/rheumatology/kex182 Disclosure of Interests: None declared