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.
ABSTRACT
Background: Covid-19 has had an important impact on the mental health conditions of over 5 million Italians suffering from one of the over 150 rheumatic diseases. In order to understand the psychological impact of the Covid-19 emergency and the restrictions imposed to counter it, the Italian National Association of People with Rheumatic and Rare Diseases -APMARR APS launched the research Living with a rheumatic pathology. Objectives: Gather data directly from Italian patients about the impact of the COVID-19 and consequent restrictions on their mental health and feelings;evaluate the most effective intervention to be implemented to face the pandemic by Patients organization. Methods: A qualitative-quantitative survey was carried out through a questionnaire administered throughout the national territory to a sample of N = 1,001 people. The people invited to complete the questionnaire were women (55,9%) and men (44,1%), aged 18-85 years (age 18-41=26,7%;age 42-65=64%;age >65=9,3%) with at least one rheumatic pathology. The questionnaire was made up of 39 questions, of which 29 were closed and 10 were open. For the administration of the questionnaires, the CAWI (Computer Aided Web Interview) methodology of on-line survey was used. The 1,001 interviews were carried out from 7 to 14 August 2020. Results: More than 4 out of 10 people (total sample 44.2%;male 60%, female 35,7%;age 18-41=39,1%;age 42-65=45,9%;age >65 = 50%) declared that the emergency period has somehow caused a worsening of their health condition. People declared that the deterioration of their health is due to the emergency period for the following reasons: 1) Psychological: such as stress and anxiety: Too much stress and anxiety made the symptoms worse.;The stress of the quarantine affected my problem;Insomnia. Nervousness. General ailments. Depression. Strong stress 2) Inability to perform physiotherapy and motor activities due to the lockdown 3) Postponement of examinations, visits and checks 4) remote working, in some cases described as harmful for people's mental and physical health: Due to Covid19 I had to do remote working and I worked even 12 hours a day including holidays to the detriment of my family life. Furthermore, from January 31, 2020 a significant increase emerged in communication problems with rheumatology specialist compared to the period before the emergency due to Covid-19. The sharp increase may be due to the situation of severe psychological stress to which also the doctors were subjected in the emergency phase: people could not find the comfort of being empathically listened to. Conclusion: The research shows that the most frequent symptoms among people with rheumatic diseases were depression and high levels of anxiety due to strong emotional stress. Psychological malaise caused direct effects in worsening the symptoms of rheumatic disease as well as other related effects, for example, insomnia. The forced isolation due to the lockdown has made people lack the social support that is fundamental for the psychological well-being especially for those suffering from some chronic pathology. Starting from the data collected, APMARR promptly activated a completely free psychological support service with 6 professional psychologists, two of them specialized in emergency psychology. The service is accessible online and is still going on for all who are not able to overcome the anxiety and fear related to the pandemic and its evolution. Thousands of accesses to the service have been measured to date. References: S Mingolla1, A Celano1, M Santopietro2 [1] NATIONAL ASSOCIATION OF PEOPLE WITH RHEUMATIC AND RARE DISEASES -APMARR APS [2] WeResearch. Ricerche di marketing.