Abstract

BackgroundIdiopathic Inflammatory Myopathies (IIMs) are rare, multisystemic and complex diseases, often impacting on patients’ quality of life (QoL). Patient Reported Outcomes (PROs) assess the overall health status of patients, particularly for emotional and functional domains. In clinical practice the administration of PROs might have some limitations, because they tend to be time-consuming and sometimes difficult to be filled in by patients. The International Myositis Assessment & Clinical Studies Group Disease Activity Core Set Measures (IMACS-CSM) are a tool created to specifically assess disease activity and QoL in IIMs.ObjectivesTo evaluate the ability of IMACS-CSM in assessing IIMs patients’ QoL in comparison with both generic and IIMs specific PROs.MethodsConsecutive adult patients with an established diagnosis of IIM (2017 EULAR/ACR criteria) followed at our Myositis Clinic were enrolled and evaluated during scheduled follow-up visits. Demographic and clinical data (age, sex, disease subset and duration, organ involvement) were collected. IMACS-CSM [Physician Global Activity (PhGA), Patient Global Activity (PGA), 8-items Manual Muscle Testing (MMT8), Health Assessment Questionnaire (HAQ), CPK values, Myositis Disease Activity Assessment Tool (MDAAT)] were used to evaluate both disease activity and QoL. Patients’ perspective was evaluated also by administration of PROs not included in the IMACS-CSM: Short-Form 36 Items Health Survey (SF-36), Functional Assessment of Chronic Illness Therapy Fatigue Subscale (FACIT-F), Myositis Activity Profile (MAP), MD Anderson Dysphagia Inventory (MDADI). Results were expressed as mean±SD for continuous variables and as percentage for categorical variables. Intergroup comparisons were assessed by using Chi-square, t-test and ANOVA. Pearson coefficient was used to analyse the correlations between IMACS-CSM variables and the other PROs. P values <0.05 were considered significant.ResultsSixty patients (65% female, mean age 59.9±13.5 years, mean disease duration 7.7±6.1 years), 37 (61.7%) with polymyositis, 20 (33.3%) with dermatomyositis and 3 (5%) with inclusion body myositis, were enrolled. Among IMACS-CSM, the mean HAQ and PGA scores were significantly worse in case of muscle (p=0.017) and oesophageal involvement (p=0.017), respectively; as expected, MMT8 score was associated with muscle involvement (p=0.017); MDAAT score was instead associated with oesophageal dysfunction (p<0.001). No associations were found between IMACS-CSM and others clinical and demographic parameters. FACIT-F correlated positively with MMT8 (r 0.432, p=0.001) and negatively with PhGA, PGA, HAQ and MDAAT (all r <-0.404 and p≤0.002 except for PhGA with r=-0.338 and p=0.016). SF-36 domains correlated positively with MMT8 (all r >0.259, p≤0.05) and negatively with PGA (all r <-0.393, p≤0.001), HAQ (all r <-0.422, p≤0.001) and MDAAT (all r <-0.276, p≤0.05). Opposite correlations were found for MAP domains: MMT8 all r <-0.297, p≤0.05; PGA all r >0.326, p≤0.05; HAQ all r >0.483, p≤0.001; MDAAT all r >0.268, p≤0.05. Similarly, MDADI scores correlated negatively with MMT8 (r <-0.363, p=0.005) and positively with PGA, HAQ and MDAAT (all r >0.318, p≤0.015). Notably, no correlations emerged between these PROs and CPK values.ConclusionEven if IMACS-CSM offer a partial evaluation of patients’ perspective, our data show how not only HAQ and PGA, but also PhGA, MMT8 and MDAAT (expressing rheumatologist’s point of view) seem to adequately reflect overall health status of IIMs patients, thus giving to clinicians a reliable assessment of their QoL. Therefore, the core set should be routinely used in clinical practice during every outpatient visit, while more accurate and complex PROs might be administered at larger time intervals or during disease flares, to optimize IMACS-CSM’s analysis.Disclosure of InterestsNone declared

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