ABSTRACT
While most borders in Latin America were closed during the COVID-19 pandemic, the dynamics of mobility and immobility in the region did not stop. In this extreme context, there was a growing need to understand how the pandemic impacted migrant and refugee populations, as well as the long-lasting effects of measures implemented to mitigate its effects. With many migrants facing exacerbated conditions of vulnerability and with new working modalities affecting all members of society, especially those who were key respondents to protect migrants in the first year of the pandemic, key ethical questions emerged about how, when and where, should research be conducted. This paper reflects on the ethical challenges we faced - such as interviewees' research fatigue, negotiation of access, researcher's positionality and the strategies to create rapport - and the methodological decisions we made in the context of a regional project (CAMINAR) that conducted online interviews with governmental and non-governmental actors working with migrants between June and August 2020. © 2023 Transnational Press London Ltd. All rights reserved.
ABSTRACT
Objectives: Health systems resilience (HSR) is generally understood as the capacity to absorb, adapt or transform in order to maintain essential functions when faced shocks. Following the COVID-19 pandemic, the concept of HSR has gained popularity, and there is now greater recognition of the importance of HSR among healthcare professionals and policymakers. A deep understanding of factors affecting HSR and practical strategies to achieve it, is still a matter of debate. Therefore, the present study aims at exploring HSR in the field of rare diseases, a vulnerable group exhibiting unique demands and particular requirements for ongoing care. Method(s): By a scoping review of the literature, we identified 53 characteristics relevant toHSR. by classifying characteristics according to the WHO building blocks, we developed a survey directed to healthcare professionals dealing with rare diseases. The survey aims to understand to which extent each characteristic matters for achieving HSR in this context. After the preliminary development of the survey, comprehensiveness and clarity were assessed, sharing the survey with a restricted group of experts working and not with rare diseases. Based on their feedback, the survey was revised and. Result(s): Feedback from the restricted groups was generally positive, and minimal changes were introduced to improve the clarity of the survey and to include specific questions in addition to characteristics found in the literature review (i.e., the importance of being part of a large network dealing with a rare disease). The survey was implemented online and then shared using social media and directly mailing the link to an expert in the treatment of rare diseases. Conclusion(s): We expect to figure out a comprehensive set of characteristics that are appropriate to define resilience in the context of rare diseases. Our framework will help to suggest strategies to deal with shocks within such a context effectively. Copyright © 2022
ABSTRACT
Background: The COVID-19 pandemic, with its uncertainties, fears of contagion, mass lockdowns and containment measures, has dramatically impacted on people's everyday lives leading to an increased risk of mental disorders, particularly Post-Traumatic Stress Disorder (PTSD). Despite evidence in general population and healthcare workers1,2, scant data emerged on vulnerable populations, such as of patients with chronic illness, particularly rheumatic and musculoskeletal diseases (RMDs)3,4, who also underwent difficulties in the management and treatment of their disorders. Objectives: To assess PTSD and post-traumatic stress symptoms in a sample of patients with RMDs, during the COVID-19 pandemic in Italy. Methods: PERMAS is a monocentric prospective observational study led by the Rheumatology Unit, the Psychiatric Clinic and the Institute of Management of the School of Advanced Studies. Patients with a RMD diagnosis, were consecutively enrolled from May 2021 to January 2022. During the visit, sociodemographic characteristics and psychopathological data were collected through online survey, whereas clinical data were collected by physician. The survey included the Trauma and Loss Spectrum-Self Report (TALS-SR) and the Impact of Event Scale-Revised (IES-R), aimed to assess symptomato-logical PTSD and post-traumatic stress symptoms related to the impact of the COVID-19 pandemic. Results: A total of 194 eligible patients, with a mean age of 50.3±12.17 years, was included: 142 (73.19%) were females;112 (57.74%) patients reported connective tissue diseases (CTD), 63 (32.47%) arthritis and 19 (9.8%) vasculitis. A total of 33 (17%) subjects reported a symptomatological PTSD by means of the TALS-SR. The prevalence of Partial PTSD (defned by at least 2 out of the 4 criteria for DSM-5 diagnosis of the disorder) was 56.7%, with signifcant higher rates among females (90, 81.8%) with respect to males (20, 18.2%) (p=.013). Accordingly, a IES-R mean total score of 21.90 ±15.98 was found in the total sample and a gender difference emerged, with higher mean scores among females rather than males (23.42 ±16.26 vs 21.90 ±15.98, p=.031). Conclusion: The present fndings point out high prevalence rates of symptoma-tological PTSD among patients suffering from RMDs, highlighting the potentially traumatic burden of the COVID-19 pandemic in this particular population, especially among females, suggesting the need of further investigations to address tailored prevention and intervention strategies.
ABSTRACT
Background: Management of the health emergency caused by COVID-19 pandemic majorly disrupted the delivery of healthcare services to patients with chronic conditions like Systemic Autoimmune Diseases (SAD), both because resources were mainly channeled towards the care of infected patients, but also because patients tended to avoid seeking medical care for fear of becoming infected. PER-MAS is a 2-year project aimed at assessing the clinical, psychopathological, and socio-economic impact of COVID-19 in a cohort of patients with SAD. Objectives: To assess the impact of COVID-19 pandemic on drug withdrawal, disease fares and hospitalizations for disease exacerbation in a cohort of patients with SAD through an interim analysis of data from the PER-MAS project. Methods: A sample of 214 consecutive patients was recruited in a reference center for rare and complex autoimmune diseases from April 2021 to January 2022. Inclusion criteria were definite diagnosis of SAD (Connective Tissue Disease (CTD), Inflammatory Arthritis (IA) or Vasculitis), regular follow-up and at least 2 years of disease. Patients were asked to fill out an extensive self-administered questionnaire on disease activity and healthcare resource use during the pandemic (March 2020-moment of assessment). Pre-pandemic (March 2019-February 2020) and early pandemic (March 2020-February 2021) clinical data were recorded through retrospective chart review and patient interview. Results: At enrolment, 119 patients were affected by CTDs (55.6%), 71 by IA (33.18%), 24 by vasculitis (11.21%), with mean age 50.44± 12.97, and mean disease duration 11.17 ± 8.94. 30.37% took steroids, 39.7% hydroxy-chloroquine, 61.68% DMARDs, and 9.3% vasoactive drugs. Overall, disease course was similar in pre-pandemic and early pandemic phase: in the first period, rheumatologic condition was stable in 57.35% of patients, persistently active in 27.3% and 35.61% had ≥ 1 episode of disease exacerbation (mean 0.665±1.15, range 0-6);in the second period, 60.56% of patients was stable, 24.88% persistently active, and 39.44% had ≥1 exacerbation (mean 0.49 ±0.77, range 0-4). Mean number of visits (2.56±2.57 and 2.61±2.79), hos-pitalizations (0.168±0.698 and 0.14±0.473, p=0.6), number of patients with outpatient visits=0 (7.47 vs 7%), and number of patients with ≥ 1 hospital admission (10.28 vs 11.6%) were also similar, while the number of patients with hospital admissions for disease exacerbation was significantly higher in the second period (6.1 vs 11.21%, p=0.001). 170 patients completed the survey: from March 2020 to enrolment, 18.2% suspended ≥1 anti-rheumatic drug (6.25% of them for fear of contracting COVID-19 disease, 15.6% for difficulty in obtaining medications), 20% self-managed ≥ 1 disease exacerbation, and 40% had ≥ 1 telemedicine consult. From March to July 2020, 41.76% had their visit rescheduled (35.23% for hospital access restrictions, 5.3% for travel restrictions, 1.17% for fear). Conversely, only 14.7% of patients had their visit rescheduled (8.23% for hospital access restrictions, 4.7% for other reasons) from July 2020 to enrolment. Conclusion: In the early pandemic phase, overall disease course was similar to the pre-pandemic phase, but we observed an increase in the number of patients with ≥ 1 hospitalization for disease. Moreover, despite our efforts, patients reported a non-negligible rate of drug discontinuation for non-medical indication and difficulty to get access to rheumatologic consultation, highlighting the need of alternative organizational models in case of future pandemics.