EXPLORING the IMPACT of the PANDEMIC on ITALIAN RHEUMATIC DISEASE PATIENTS: A PATIENT ADVOCACY SURVEY

ABSTRACT

Background: Patients with rheumatic diseases show impaired quality of life (QoL) disease activity, comorbidities and treatment-related side effects contributes to decrease physical, emotional, and social functioning. The COVID-19 pandemic challenged health care systems and patients with chronic conditions hospital and outpatient clinics delayed access, unpredictable changes like non-adherence to medication, but also negative emotions, psychological conditions recognized as risk factors for the poor QoL [1-2]. Objectives: To describe the impact of the COVID-19 pandemic on the Qol of Italian patients with rheumatic diseases in the frst period of the national lockdown. Methods: APMARR (Associazione Nazionale Persone con Malattie Reu-matolgoche e Rare) invited Italian patients and caregivers to participate to an online structured survey in the period March-June 2020. Informed consent was retrieved. The questionnaire, promoted by the patient advocacy website, collected demographics, emotional and healthcare pattern information. Results: 87,44% (N=215) complete questionnaires were retrieved (96.3% patients;3.7% caregivers;87.77% female;2% aged <18 years, 16% aged 18-30 years, 82% aged >31 years;0.53% missing data). Respondents were illustrative of the Patient Advocacy regional distribution (Puglia Region predominant). Rheumatoid arthritis regarded 29% of respondents, ankylosing spondylitis 17%, psoriasis 16%, remaining 38% other rheumatoid diseases. 96% of respondents were employed, 39% of which had to discontinue/change working activity during pandemics. 60% of respondents reported being worried about their disease. The deriving sense of fragility was the main cause of anxiety, which was not controlled even by compliance to the treatment plan (88%). 30% of respondents was worried about virus infection. Irritability, appetite and sleep disorders were also reported anxiety had effects on irritability (46% sometimes more irritable) and sleep quality (38% always disturbed). GPs visits access was limited (40% considered it absent and 76% had to postpone it). Only 32% of specialist centers provided facilitated patterns of care. Respondents suggested possible solutions to improve QoL during COVID-19 pandemic and over it. Psychologist support was suggested as useful by 44% of respondents to manage therapies and by 56% to effort daily life. The home infusion would be of support according to 44% of respondents (18% already got access to it). Patient Advocacy had a main role in the new care and life context 80% would consider it useful to participate to and 81% was satisfed by the prompt and continuous support received during pandemics. Conclusion: Similar results as far as distress were reported by Italian and foreign evidence, which demonstrated considerable COVID-19 related psychosocial burden in rheumatic disease patients [3-5]. Potential solutions are also with EULAR recent guidelines, which underlined how psychological interventions were found to reduce pain and fatigue even in difficult-to-treat patients [6] and how mental health needs should be periodically assessed, due to the link between better emotional well-being and better self-management [7]. Besides, the reported picture of reorganised care during pandemic corresponded to the real-world experience of the Italian Regions [8]. New approaches of care like home infusions and telemedicine supported by patient organisations should become routinary and may therefore beneft patients.