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1.
Lupus ; 32(8): 974-982, 2023 Jul.
Article in English | MEDLINE | ID: covidwho-20231677

ABSTRACT

OBJECTIVES: This study aimed to evaluate depression and anxiety in patients with systemic lupus erythematosus (SLE) in the post-coronavirus disease-2019 (COVID-19) period and their potential association with the disease activity and related organ damage. PATIENTS AND METHODS: This is a case-control study including 120 adult Egyptian patients with SLE: sixty patients with SLE who were proven previously to be positive for severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) by polymerase chain reaction (PCR) and recovered during the 3 months prior to the study were included in the case group and an equal number of age- and sex-matched patients with SLE and no evidence of SARS-CoV-2 infection were included in the control group. Patients' clinical history was collected, and they underwent clinical evaluation, including SLE disease activity, damage assessment, and psychological assessment. RESULTS: The mean depression and anxiety scores were significantly higher in cases than in the control group. Both scores showed a significant positive correlation with age, disease duration, the Systemic Lupus International Collaborating Clinics/American College of Rheumatology (SLICC/ACR) Damage Index for SLE (SDI), and SLE disease activity index (SLEDAI) and a significant negative correlation with education years. Hierarchical multivariate regression analyses revealed that COVID-19 infection was a predictor for severe depression and moderate-to-severe anxiety. CONCLUSIONS: Patients with SLE, who are already vulnerable to physiological stressors, are especially predisposed to more risk of anxiety and depression when they are contracted with COVID-19 disease. Furthermore, anxiety and depression are associated with SLE activity and damage scores, and COVID-19 infection is a significant predictor for their severity. These results suggest that healthcare providers should give special attention to the mental health of SLE patients, especially during the COVID-19 pandemic.


Subject(s)
COVID-19 , Lupus Erythematosus, Systemic , Adult , Humans , Lupus Erythematosus, Systemic/complications , Lupus Erythematosus, Systemic/epidemiology , Lupus Erythematosus, Systemic/psychology , Depression/epidemiology , Depression/etiology , Case-Control Studies , Pandemics , COVID-19/complications , COVID-19/epidemiology , SARS-CoV-2 , Anxiety/epidemiology , Severity of Illness Index
2.
J Prev Med Public Health ; 56(2): 154-163, 2023 Mar.
Article in English | MEDLINE | ID: covidwho-2302340

ABSTRACT

OBJECTIVES: Systemic lupus erythematosus (SLE) or lupus patients usually experience various physical and psychological challenges. Since the coronavirus disease 2019 pandemic, these challenges have become even harsher. Using the participatory action research approach, this study evaluated how an e-wellness program (eWP) impacted SLE-related knowledge and health behaviors, mental health, and quality of life among lupus patients in Thailand. METHODS: A 1-group, pretest-posttest design study was conducted among a purposive sample of lupus patients who were members of Thai SLE Foundation. The 2 main intervention components were: (1) online social support, and (2) lifestyle and stress management workshops. Sixty-eight participants completed all the study requirements, including the Physical and Psychosocial Health Assessment questionnaire. RESULTS: After being in the eWP for 3 months, participants' mean score for SLE-related knowledge increased significantly (t=5.3, p<0.001). The increase in sleep hours was statistically significant (Z=-3.1, p<0.01), with the percentage of participants who slept less than 7 hours decreasing from 52.9% to 29.0%. The percentage of participants reporting sun exposure decreased from 17.7% to 8.8%. The participants also reported significantly lower stress (t(66)=-4.4, p<0.001) and anxiety (t(67)=-2.9, p=0.005). The post-eWP quality of life scores for the pain, planning, intimate relationship, burden to others, emotional health, and fatigue domains also improved significantly (p<0.05). CONCLUSIONS: The overall outcomes showed promising results of improved self-care knowledge, health behaviors, mental health status, and quality of life. It is recommended that the SLE Foundation continues to use the eWP model to help the lupus patient community.


Subject(s)
COVID-19 , Lupus Erythematosus, Systemic , Humans , Quality of Life , Thailand , Lupus Erythematosus, Systemic/therapy , Lupus Erythematosus, Systemic/psychology , Health Promotion , Surveys and Questionnaires
3.
Lupus ; 32(6): 737-745, 2023 May.
Article in English | MEDLINE | ID: covidwho-2291948

ABSTRACT

OBJECTIVE: During the COVID-19 pandemic, many research studies were adapted, including our longitudinal study examining cognitive impairment (CI) in systemic lupus erythematosus (SLE). Cognitive testing was switched from in-person to virtual. This analysis aimed to determine if the administration method (in-person vs. virtual) of the ACR-neuropsychological battery (ACR-NB) affected participant cognitive performance and classification. METHODS: Data from our multi-visit, SLE CI study included demographic, clinical, and psychiatric characteristics, and the modified ACR-NB. Three analyses were undertaken for cognitive performance: (1) all visits, (2) non-CI group visits only and (3) intra-individual comparisons. A retrospective preferences questionnaire was given to participants who completed the ACR-NB both in-person and virtually. RESULTS: We analysed 328 SLE participants who had 801 visits (696 in-person and 105 virtual). Demographic, clinical, and psychiatric characteristics were comparable except for ethnicity, anxiety and disease-related damage. Across all three comparisons, six tests were consistently statistically significantly different. CI classification changed in 11/71 (15%) participants. 45% of participants preferred the virtual administration method and 33% preferred in-person. CONCLUSIONS: Of the 19 tests in the ACR-NB, we identified one or more problems with eight (42%) tests when moving from in-person to virtual administration. As the use of virtual cognitive testing will likely increase, these issues need to be addressed - potentially by validating a virtual version of the ACR-NB. Until then, caution must be taken when directly comparing virtual to in-person test results. If future studies use a mixed administration approach, this should be accounted for during analysis.


Subject(s)
COVID-19 , Lupus Erythematosus, Systemic , Rheumatology , Humans , United States , Lupus Erythematosus, Systemic/complications , Lupus Erythematosus, Systemic/psychology , Retrospective Studies , Longitudinal Studies , Pandemics , COVID-19/complications , Cognition
4.
Int J Environ Res Public Health ; 19(23)2022 Nov 30.
Article in English | MEDLINE | ID: covidwho-2200244

ABSTRACT

Systemic lupus erythematosus (SLE) is a chronic and multi-systemic autoimmune disease, which has a deleterious impact on patients' psychological well-being. This paper aims to review the existing literature on empirical research on psychological outcomes of SLE and psychological interventions to improve well-being in SLE patients. A search of significant English language articles was conducted in PubMed, Medline, ScienceDirect, Scopus, and ResearchGate databases. Titles and abstracts were screened for the relevant terms, including "systemic lupus erythematosus", "childhood-onset systemic lupus erythematosus", "juvenile systemic lupus erythematosus", "lupus nephritis", and their respective synonyms along with "depression", "anxiety", "fatigue", "medical adherence", "health-related quality of life", "self-management" or "intervention". The articles were evaluated by independent reviewers and the lists of eligible publications were compared whilst disagreements were settled by discussion. Of the 59 publications sought for retrieval, 35 papers were shortlisted based on predefined inclusion/exclusion criteria. They were classified according to their content and the methodology applied. Research topics including "anxiety and depression in SLE" and "self-management interventions for SLE patients" were identified and are presented in this review. As the prognosis and life expectancy of SLE patients are improving, further research on the psychological outcomes of SLE and the evidence-based psychological interventions to improve patients' well-being are justified.


Subject(s)
Lupus Erythematosus, Systemic , Quality of Life , Humans , Child , Quality of Life/psychology , Lupus Erythematosus, Systemic/therapy , Lupus Erythematosus, Systemic/psychology , Anxiety Disorders , Anxiety
5.
Lupus ; 30(12): 1879-1887, 2021 Oct.
Article in English | MEDLINE | ID: covidwho-1378111

ABSTRACT

OBJECTIVE: To determine the factors associated with anxiety, depression, and concern within the COVID-19 pandemic in a population with autoimmune diseases. METHODS: A telephonic survey was conducted during the early stages of the pandemic in a tertiary care center, which included patients with systemic autoimmune diseases. Mental health variables were assessed with Patient Health Questionnaire 2, General Anxiety Disorder 7 scores, and pandemic-related concern questions. Sociodemographic aspects were also evaluated. RESULTS: Of the total 334 participants, 291 (87.1%) were women, with a median age of 46 years; systemic lupus erythematosus (SLE) was the most frequent diagnosis (144, 43.2%); 44 patients (13.2%) showed depression and 32 (9.6%) anxiety. The variables associated with depression were all the pandemic concern items, body mass index, anxiety, and a higher COVID-19 symptom score. Anxiety was associated with depression, all pandemic concern items, and a higher COVID-19 symptom score. Women presented higher scores in all concern items. The SLE group presented higher scores in concern questions and difficulty finding medication. CONCLUSION: During the COVID-19 outbreak, rheumatic patients are vulnerable to psychiatric conditions, which makes it imperative for physicians who treat these patients to pay careful attention in order to detect them promptly and to settle coping strategies.


Subject(s)
COVID-19 , Lupus Erythematosus, Systemic , Mental Health , Rheumatic Diseases , Anxiety/epidemiology , COVID-19/epidemiology , COVID-19/psychology , Depression/epidemiology , Female , Humans , Latin America , Lupus Erythematosus, Systemic/epidemiology , Lupus Erythematosus, Systemic/psychology , Male , Middle Aged , Pandemics , Rheumatic Diseases/epidemiology , Rheumatic Diseases/psychology , Tertiary Care Centers
6.
Lupus ; 30(11): 1747-1755, 2021 Oct.
Article in English | MEDLINE | ID: covidwho-1319451

ABSTRACT

OBJECTIVE: The aim of this study was to evaluate the initial impact of the COVID-19 pandemic on individuals with systemic lupus erythematosus (SLE). METHODS: Patients with SLE participating in a multi-center longitudinal cohort study in New York and Boston were invited to complete a supplemental web-based questionnaire in the summer of 2020. Participants completed standardized patient-reported outcome (PRO) measures and a combination of Likert scale and open-ended questions exploring the impact of the COVID-19 pandemic on their health and access to health care. Changes in PROs were evaluated with paired t-tests and frequencies of worsened symptoms were calculated. A thematic qualitative analysis was conducted on free text responses. RESULTS: Of 97 patients invited, 63 (65%) completed a supplemental questionnaire. Nearly 50% of respondents exhibited increases in anxiety (47.5%) and depression (48.3%) and over 40% scored worse in measures of pain interference, fatigue, and cognitive abilities. Respondents with pre-existing diagnoses of anxiety did not differ from other participants in PRO scores, but were more than three times as likely to report worsened health status. Patients denied difficulties accessing medications (85%) or medical care (84%) and over 50% participated in telehealth visits. Anxiety and increased health risks due to immunosuppression were recurring themes in free text responses. CONCLUSIONS: SLE patients experienced a significant physical and emotional toll in the initial months of the COVID-19 pandemic. Comprehensive patient-centered care, including monitoring and addressing anxiety and health-related quality of life, is critical to improving health outcomes in this population during the ongoing health crisis.


Subject(s)
Anxiety/psychology , Depression/psychology , Lupus Erythematosus, Systemic/psychology , Pain/psychology , Quality of Life , Adult , Aged , COVID-19/epidemiology , Humans , Longitudinal Studies , Male , Middle Aged , Pandemics , Patient Reported Outcome Measures , Prospective Studies , SARS-CoV-2 , Telemedicine/statistics & numerical data
7.
Lupus Sci Med ; 8(1)2021 04.
Article in English | MEDLINE | ID: covidwho-1194228

ABSTRACT

OBJECTIVE: To report the results of a survey exploring the experience of patients with SLE facing hydroxychloroquine (HCQ) shortage that occurred during the early phases of the COVID-19 pandemic. METHODS: A survey was designed by Lupus Europe's patient advisory network and distributed through its social media, newsflash and members' network. People with lupus were asked about their last HCQ purchases and their level of anxiety (on a 0-10 scale) with regard to not being able to have access to HCQ, once in April 2020 (first wave) and after 11 August (second wave). The results were compared. RESULTS: 2075 patients responded during the first wave; 1001 (48.2%) could get HCQ from the first place they asked, 230 (11.1%) could get the drug by going to more than one pharmacy, 498 (24.0%) obtained HCQ later from their usual pharmacy and 126 (6.1%) from other sources. 188 (9.1%) could not get any; 32 (1.5%) did not respond to this question. All countries showed significant improvement in HCQ availability during the second wave. 562 (27.4%) patients reported an extremely high level of anxiety in wave 1 and 162 (10.3%) patients in wave 2; 589 (28.7%) and 268 (17.1%) patients reported a high level of anxiety in wave 1 and wave 2, respectively. CONCLUSIONS: The HCQ shortage had a significant impact on patients with SLE and has been responsible for psychological consequences including anxiety. Indeed, despite an objective improvement in drug availability, the event is leaving significant traces in patients' mind and behaviours.


Subject(s)
Anxiety , COVID-19 Drug Treatment , COVID-19 , Community Pharmacy Services/statistics & numerical data , Health Services Accessibility , Hydroxychloroquine , Lupus Erythematosus, Systemic , Antirheumatic Agents/supply & distribution , Antirheumatic Agents/therapeutic use , Anxiety/diagnosis , Anxiety/etiology , COVID-19/epidemiology , Civil Defense/methods , Civil Defense/standards , Europe/epidemiology , Health Services Accessibility/standards , Health Services Accessibility/statistics & numerical data , Humans , Hydroxychloroquine/supply & distribution , Hydroxychloroquine/therapeutic use , Lupus Erythematosus, Systemic/drug therapy , Lupus Erythematosus, Systemic/epidemiology , Lupus Erythematosus, Systemic/psychology , Psychological Distress , SARS-CoV-2 , Self Report/statistics & numerical data , Surveys and Questionnaires
8.
Med Clin (Barc) ; 156(8): 379-385, 2021 04 23.
Article in English, Spanish | MEDLINE | ID: covidwho-1057062

ABSTRACT

BACKGROUND AND OBJECTIVE: Patients with systemic lupus erythematosus (SLE) are more vulnerable to higher levels of stress and psychopathological symptoms than the general healthy population. Therefore, the COVID-19 outbreak could alter their psychological state. The objective was to analyze the psychological impact of the pandemic and confinement on stress levels and psychopathological symptoms in patients with SLE. PATIENTS AND METHOD: In this cross-sectional study, stress levels were compared with the Perceived Stress Scale, the Stress Vulnerability Inventory and psychopathological symptoms of the SCL-90-R Symptom Inventory in patients with SLE during the period of confinement (group 1; n=276) in comparison to patients with SLE evaluated in a period before the pandemic (group 2; n=152). RESULTS: The comparison between both groups showed there were statistically significant differences in vulnerability to stress (P<.0001), depression (P≤.05), anxiety (P≤.05), phobic anxiety (P<.0001), interpersonal sensitivity (P≤.043), and psychoticism (P≤.023). In these variables, the group of patients with lupus in confinement obtained higher scores. CONCLUSIONS: The confinement and threat of the COVID-19 outbreak had important repercussions on the psychological state of patients with SLE with high levels of stress, anxiety, and depression. These findings show their vulnerability to a public health alert and indicate the need to carry out a psychological approach to these patients while the state of health emergency lasts as well as to possible outbreaks of the virus.


Subject(s)
COVID-19 , Lupus Erythematosus, Systemic/psychology , Quarantine/psychology , Stress, Psychological/epidemiology , Anxiety/epidemiology , Cross-Sectional Studies , Depression/epidemiology , Humans , Lupus Erythematosus, Systemic/complications
9.
Lupus ; 30(1): 158-164, 2021 Jan.
Article in English | MEDLINE | ID: covidwho-817981

ABSTRACT

INTRODUCTION: The ongoing pandemic of COVID-19 has led to severe disruption of healthcare services worldwide. We conducted this study to assess the impact of COVID-19 pandemic on the management of Systemic Lupus Erythematosus (SLE) patients who were enrolled in the nation-wide inception cohort. METHODS: A questionnaire was administered to the SLE patients enrolled in the inception cohort. Questions related to the effect on disease activity, preventive measures adopted against COVID-19, the incidence of COVID-19, hardships faced in getting access to health care professionals and availability of medicines, adherence, fear of COVID-19 and the potential benefits of being part of the registry. RESULTS: A total of 1040 (90% females) patients completed the questionnaire. The mean age was 27.5 ± 19.1 years and the mean disease duration was 1.25 years. Twenty-Four (2.3%) patients had developed fever (>1 day) during this period, including one patient with additional symptoms of diarrhoea and anosmia, however, none of the patients developed COVID-19 infection. 262 patients (25.2%) reported financial difficulty during this period and patients reported an average excess expenditure of at least 2255.45 INR ($30) per month. 378 patients (36%) reported problems in getting their prescribed medicines due to lockdown. Of these, 167 (40%) patients needed to change their medication schedule due to this non-availability. Almost 54% of patients missed their scheduled follow up visits during the lockdown period and 37% of patients were unable to get their investigations done due to closure of laboratories and hospitals. 266 patients (25.5%) reported worsening of various symptoms of SLE during this period. Almost 61% patients felt confident that being associated with the inception cohort had helped them in managing their disease better during this period of lockdown as they received help in the form of timely and frequent telephonic consults, assistance in making the medicines available, and regular counselling resulting in abetment of their fears and anxieties. CONCLUSION: The current COVID-19 pandemic has made a huge impact on our SLE patients. Patients faced difficulty in the availability of medicines, missed the doses of medicines, had financial constraints, and spent more money on health during the pandemic.


Subject(s)
COVID-19 , Lupus Erythematosus, Systemic/psychology , Pandemics , Registries , Adolescent , Adult , Female , Humans , India , Male , Middle Aged , Young Adult
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