Transition to Adulthood through Coaching and Empowerment in Rheumatology (TRACER): A feasibility study protocol.

The transition from pediatric to adult care for patients with chronic disease is a vulnerable period, with risks of disengagement from care and subsequent complications of inadequately managed disease. This period comes at a time when there are many other transitions occurring in the young person's life, including changes to vocation, social supports, and to their physiology. The aim of the TRACER study is to assess the feasibility of conducting a multi-center, randomized-controlled trial of a virtual Transition Coach Intervention in youth transferring from pediatric to adult rheumatology care. Patients are being recruited at their last pediatric rheumatology visit from McMaster Children's Hospital and Children's Hospital, London Health Sciences Centre in Ontario, Canada. Participants are then randomized to standard of care or to eight transition coaching sessions, covering topics around health management, future planning, and self-advocacy. The primary outcomes of the study are to demonstrate protocol feasibility, including optimal recruitment and consent rates, ≥ 90% coaching session completion, and complete data collection with ≤ 5% missing data. Baseline demographics, transition readiness, global functional assessment, disease activity, and self-efficacy will be collected to characterize the study population. Recruitment has begun and is estimated to last 19 months. This study will inform the design of a robust, multi-centered, randomized-controlled study to investigate the impact of a virtual transition coaching program in supporting the physical, mental, and social well-being of youth with rheumatic disease transitioning into adult care. Clinical trial registration: ClinicalTrials.Gov protocol ID: 14499.

Sexual dysfunction among female patients with rheumatic diseases.

To demonstrate the burden of sexual dysfunction (SD) among females with rheumatic diseases, we conducted a cross-sectional comparative study in patients with systemic sclerosis (SSc), systemic lupus erythematosus (SLE), and Behçet's syndrome (BS) along with suitable healthy controls (HCs). Age-matched female patients with SSc (n = 50), SLE (n = 49), and BS (n = 54), along with 52 female HCs were included in this study between April and October, 2021. Sociodemographic features were recorded, and psychometric tests, i.e., female sexual function index (FSFI), Beck depression inventory (BDI), body cathexis scale, and marital adjustment test (MAT) were performed. Scale scores were compared, and binary logistic regression was used to identify predictors for SD in the whole group. The total FSFI and body cathexis scores among the patient groups were significantly lower than those of the HCs (p < 0.001). Depression was significantly more frequent in the patient groups. MAT scores did not differ significantly between the study groups. Patients with SSc had the worst scores in each psychometric index, including MAT. Decreased body cathexis score [OR 0.974, 95% CI (0.957-0.991), p = 0.003] and low MAT score [OR 0.937, 95% CI (0.896-0.980), p = 0.005], and being diagnosed with SSc [OR 6.6, 95% CI (1.975-22.498), p = 0.002], SLE [OR 2.7, 95% CI (0.998-7.753), p = 0.050], and BS [OR 2.8, 95% CI (1.100-7.359), p = 0.031], were identified as independent predictors for SD. Body cathexis seems to be the most important independent predictor for SD, and the burden of SD appears heavier in patients with SSc, probably due to poor body image satisfaction.

Impact of the COVID-19 pandemic on psychosocial health in rheumatic patients: A longitudinal study.

AIM: To describe the impact of the COVID-19 on the psychosocial health of patients with rheumatoid arthritis (RA), spondyloarthritis (SpA), and systemic lupus erythematosus (SLE). DESIGN: Longitudinal observational study of a series of patients with rheumatic disease. METHODS: The main outcome measure was impairment of the ability to participate in social activities, as measured using the PROMIS-APS instrument Short Form-8a. We evaluated social activities in various settings and performed a multivariate analysis to study the association between worsening of social participation during the COVID-19 pandemic and implicated factors. RESULTS: One hundred and twenty-five patients had completed the prospective follow-up: 40 with AR (32%), 42 with SpA (33.6%), and 43 with SLE (34.4%). Overall, poorer mean PROMIS scores were recorded after the COVID-19 pandemic for: satisfaction with social roles (p=0.029), depression (p=0.039), and ability to participate in social activities (p=0.024). The factors associated with ability to participate in social activities after the COVID-19 pandemic were older age (ß=-0.215; p=0.012), diagnosis of SLE (ß=-0.203; p=0.015), depression (ß=-0.295; p=0.003) and satisfaction with social roles (ß=0.211; p=0.037). CONCLUSION: The ability to participate in social activities after the COVID-19 pandemic is affected in patients with rheumatic disease, especially in SLE.

Self-esteem, self-concept, and body image of young people with rheumatic and musculoskeletal diseases: A systematic literature review.

OBJECTIVE: Despite the growing interest in psychological variables and mental health in young people with rheumatic diseases (RMDs), the impact of these conditions on self-concept, self-esteem, or body image is unclear. The purpose of this study was to synthesize existing research related to these domains in young people with RMDs. METHODS: Review registered on PROSPERO as CRD42023444009. The search strategy includes all articles up to September 2023, to collect qualitative and quantitate studies assessing self-concept, self-esteem, or body image in young people with RMDs. All identified articles were described, rated and Risk of bias was assessed. RESULTS: We identified 350 studies, of which 11 were analysed in this study. Our results indicated that self-concept, body image and self-esteem were a common challenge in young people with RMDs and might negatively impact physical and psychosocial health-related quality of life (QoL). The social domain of self-concept was impaired, mainly in female patients. Although studies that evaluated self-esteem show varied results, it seems that self-esteem was worse in females and was associated mainly with depression, but also with poorer QoL. Glucocorticoids consistently were associate with poor body image in all conditions due to visible side-effects of medication. Visible signs of the disease also might lead to poor body image. CONCLUSION: This review identifies important gaps and areas of improvement for future research in these issues in young patients with RMDs. This review highlights the need to actively engage patients and ensure that their psychological concerns are addressed to improve their healthcare and long-term quality of life outcomes.

The Role of Psychology in Pediatric Rheumatic Diseases.

Pediatric rheumatic diseases (PRDs) are a heterogeneous group of diseases that can have a chronic unpredictable disease course that can negatively affect mood, functioning, and quality of life. Given the range of difficulties faced in managing PRDs, as well as the psychosocial issues youth with these diseases experience, pediatric psychologists can be well suited to address concerns that arise in care for youth with PRDs including adherence, cognitive assessment, pain management, functional disability, and mood. Potential ways that pediatric psychologists can address these concerns and be embedded within an interdisciplinary treatment plan for youth with PRDs are described.

COVID-19 and autoimmune rheumatic disease: behavioural changes adopted by patients amid the pandemic.

BACKGROUND: Amid concerns about severe COVID-19 in patients with autoimmune rheumatic disease (AIRD) during the outbreak, it is crucial to explore behavioural changes, whether healthy or unhealthy, arising from this patient population in response to the changing healthcare environment. AIM: To investigate COVID-19-driven behavioural changes in patients with AIRD. METHODS: This observational study invited patients who attended the rheumatology clinic of the Korle Bu Teaching Hospital from 1 August 2020 to 1 July 2021, to respond to a survey questionnaire distributed on the patient's WhatsApp platform. Variables observed were changes in patient behaviour and decision-making related to medication, healthcare service utilisation and clinical advice. RESULTS: Results for 233 patients were analysed in the study, the majority (89.7%) of whom were women. The most significant behavioural changes were a reduction in hydroxychloroquine (HCQ) dosage, adoption of telemedicine for clinical consultation and keen adherence to protective/preventive health measures. Patients also expressed anxiety regarding the risk of contracting COVID-19 (52.5%), infecting their families (66.5%) and losing income (50.2%) due to the pandemic. Women and students were more likely to engage in self-isolation/shielding behaviour. Employed participants practised social distancing more, reduced HCQ dosage and had more fear of losing income. Having mixed connective tissue disease is associated with being anxious about the risk of COVID-19 infection. CONCLUSION: The COVID-19 pandemic has resulted in behaviour changes among patients with AIRD. Despite the perceived risk, most of these patients continue to adhere to their prescribed medication regimens, especially maintaining the dosage of traditional immunosuppressive agents.

Pain catastrophizing in rheumatic diseases: prevalence, origin, and implications.

Pain is a crucial factor in rheumatic disorders, and reducing it is a primary goal of successful treatment. Adaptive pain-coping strategies can enhance this improvement, but maladaptive approaches such as pain catastrophizing may worsen overall patient well-being. This narrative review aims to provide a concise overview of the existing knowledge on pain catastrophizing in the most prevalent specific rheumatic disorders. The objective of this study was to improve understanding of this phenomenon and its implications, as well as to pinpoint potential directions for future research. We conducted searches in the MEDLINE/PubMed, SCOPUS, and DOAJ bibliography databases to identify articles related to pain catastrophizing in rheumatoid arthritis, psoriatic arthritis, axial spondylarthritis, systemic sclerosis, systemic lupus erythematosus, Sjögren's syndrome, juvenile idiopathic arthritis, and osteoarthritis (non-surgical treatment). Data extraction was performed on November 1, 2023. The investigators screened the identified articles to determine their relevance and whether they met the inclusion criteria. Following a bibliography search, which was further expanded by screening of citations and references, we included 156 records in the current review. The full-text analysis centred on pain catastrophizing, encompassing its prevalence, pathogenesis, and impact. The review established the role of catastrophizing in amplifying pain and diminishing various aspects of general well-being. Also, potential treatment approaches were discussed and summarised across the examined disorders. Pain catastrophizing is as a significant factor in rheumatic disorders. Its impact warrants further exploration through prospective controlled trials to enhance global patient outcomes.

Qualitative interview study of rheumatology patients' experiences of COVID-19 shielding to explore the physical and psychological impact and identify associated support needs.

OBJECTIVE: Many clinically extremely vulnerable rheumatology patients have only recently ceased shielding from COVID-19, while some continue to minimise in-person contact. The objective of this study was to understand the impact of shielding and associated support needs in patients with rheumatic conditions and to understand how rheumatology teams can meet these needs both currently and in future pandemics. DESIGN, PARTICIPANTS AND SETTING: The study was conducted in the Southwest of England using a case-study design. The participants were 15 patients with rheumatic conditions who were advised to shield and/or chose to shield at any time during the COVID-19 pandemic. METHODS: Qualitative data collected via telephone and online semi-structured interviews and analysed using reflexive thematic analysis. RESULTS: Fifteen interviews were conducted. Three main themes represent the data:'Just shove them over there in the corner' captures changes in patients' self-perception. They felt different to most other people, vulnerable and left behind. The initial sense of shock was followed by a sense of loss as changes became long term.'A long and lonely road' captures patients' psychological isolation due to a perceived lack of understanding and support. This included having to prove their health status and justify their shielding behaviours, which impacted their relationships. At times, they felt abandoned by their healthcare providers.'You can't just flip a switch' captures the difficulty of getting back to pre-pandemic normal after shielding. Patients did not recognise themselves physically and mentally. They wanted to collaborate with health professionals and identified the need for specific guidance to support their recovery. CONCLUSION: Patients are dealing with lasting physical and mental effects from shielding and consequences of delayed healthcare. Health professionals need time and resources to ask about patients' well-being, identify their health needs and refer/signpost to appropriate sources of support.

Factors Associated With Distress Related to Perceived Dignity in Patients With Rheumatic Diseases.

BACKGROUND: The loss of perceived dignity is an existential source of human suffering, described in patients with cancer and chronic diseases and hospitalized patients but rarely explored among patients with rheumatic diseases (RMDs). We recently observed that distress related to perceived dignity (DPD) was present in 26.9% of Mexican patients with different RMDs. The study aimed to investigate the factors associated with DPD. METHODS: This cross-sectional study was performed between February and September 2022. Consecutive patients with RMDs completed patient-reported outcomes (to assess mental health, disease activity/severity, disability, fatigue, quality of life [QoL], satisfaction with medical care, and family function) and had a rheumatic evaluation to assess disease activity status and comorbidity. Sociodemographic variables and disease-related and treatment-related variables were retrieved with standardized formats. DPD was defined based on the Patient Dignity Inventory score. Multivariate regression analysis was used. RESULTS: Four hundred patients were included and were representative of outpatients with RMDs, while 7.5% each were inpatients and patients from the emergency care unit. There were 107 patients (26.8%) with DPD. Past mental health-related comorbidity (Odds Ratio [OR]: 4.680 [95% Confidence Interval [CI]: 1.906-11.491]), the number of immunosuppressive drugs/patient (OR: 1.683 [95% CI: 1.015-2.791]), the physical health dimension score of the World Health Organization Quality of Life-Brief questionnaire (WHOQOL-BREF) (OR: 0.937 [95% CI: 0.907-0.967]), and the emotional health dimension score of the WHOQOL-BREF (OR: 0.895 [95% CI: 0.863-0.928]) were associated with DPD. CONCLUSIONS: DPD was present in a substantial proportion of patients with RMDs and was associated with mental health-related comorbidity, disease activity/severity-related variables, and the patient QoL.

Collating the voice of people with autoimmune diseases: Methodology for the Third Phase of the COVAD Studies.

INTRODUCTION: The growing recognition of holistic patient care highlights the various factors shaping the quality of life of individuals with autoimmune and rheumatic diseases (AIRDs). Beyond the traditional disease measures, there is an emerging acknowledgment of the less-explored aspects, including subjective well-being, social determinants of health, comorbidities, mental health, and medication adherence. Moreover, digital health services have empowered patients to engage actively in decision-making alongside clinicians. To explore these domains within the context of AIRDs, the "Collating the Voice of People with Autoimmune Diseases" COVAD survey was conceived, a successor of the previous two COVAD surveys. In this document, we present the study protocol in comprehensive detail. METHODS: The COVAD-3 survey is a cross-sectional patient self-reported e-survey incorporating multiple widely accepted scales/scores to assess various aspects of patients' lifestyles objectively. To ensure the survey's accuracy and usability across diverse regions, it will be translated into multiple languages and subjected to rigorous vetting and pilot testing. It will be distributed by collaborators via online platforms and data will be collected from patients with AIRDs, and healthy individuals over eight months. Data analysis will focus on outcome measures related to various social, demographic, economic, and psychological factors. CONCLUSION: With the increasing awareness to adopt a holistic treatment approach encompassing all avenues of life, the COVAD-3 survey aims to gain valuable insights into the impact of social, demographic, economic, and psychological determinants of health on the subjective well-being in patients with AIRDs, which will contribute to a better understanding of their overall health and well-being.

Individual outcomes after tailored versus generic self-management strategies for persistent fatigue in youth with a fatigue syndrome or rheumatic condition: A multiple single-case study.

OBJECTIVE: To examine individual outcomes after tailored lifestyle (PROfeel) or generic dietary advice as self-management intervention for persistent fatigue in adolescents and young adults with a chronic condition, to compare participants who did and did not benefit and to explore changes to factors in the biopsychosocial model of fatigue after PROfeel. METHOD: A multiple single-case AB-phase design was embedded in a randomized crossover trial (N = 45). Intensive longitudinal data (ILD) on outcomes 'fatigue severity', 'self-efficacy' and 'quality of life' (QoL) were collected through weekly smartphone measurement for 20 weeks. ILD on biopsychosocial factors were collected through experience sampling methodology for 28 days pre-post first intervention. Baseline characteristics were compared with t-tests and chi-square tests. Permutation distancing tests were used to assess change over time in all ILD. RESULTS: Regarding weekly measurements, nineteen participants (42.22%) showed small to large positive outcomes (drange = .05 to 2.59), mostly after PROfeel. Eleven participants (24.44%) showed small to moderate negative outcomes (drange = -.02 to -2.46), mostly after dietary advice. Fatigue severity improved most, followed by self-efficacy. Participants who benefitted showed higher QoL levels and lower fatigue and pain levels compared with others at baseline (all p < .02). When positive outcomes were observed after PROfeel, typically ≥1 biopsychosocial factor had been targeted successfully. CONCLUSION: Self-management advice has more potential when tailored to individual characteristics, including the biopsychosocial model of fatigue. PROfeel appears particularly useful as fatigue intervention for individuals with relatively less severe symptoms.

Pain mechanisms for the practicing rheumatologist.

Pain in rheumatic diseases transcends the traditional nociceptive paradigm, incorporating complex interactions between nociceptive, neuropathic, and nociplastic mechanisms, as well as significant psychosocial factors. Advances in understanding chronic pain highlight the role of peripheral and central sensitization, and the emergence of nociplastic pain-a result of altered central nervous system processing. This modern perspective acknowledges the influence of mood disorders, environmental stressors, and cognitive patterns like catastrophizing, revealing the intricate interplay between biological, psychological, and social determinants of pain. Research emphasizes the brain's pivotal role in pain perception, underscoring the importance of comprehensive approaches that integrate medical, psychological, and social interventions to address the multifaceted nature of chronic pain in rheumatic diseases effectively.

Is there an Association between Complementary and Alternative Medicine use and Trust in Physicians in Patients with Rheumatic Diseases?

INTRODUCTION: Generally, patients with chronic rheumatic diseases use complementary and alternative medicine (CAM) in addition to their conventional treatments to manage their health. Discussing these treatments with their physician is still rare, which might be directly related to patients' trust toward them. AIM: The primary objective of this study was to assess the association between patients' trust in their physician and the use of complementary and alternative medicine among patients with chronic inflammatory rheumatic diseases. As secondary objectives, to estimate the prevalence of CAM use, and to identify the associated factors with their use and with trust in physicians. METHODS: This is a cross-sectional study, which included patients with established chronic inflammatory rheumatic diseases, at the University Hospital Center in Tangier. The questionnaire included demographic and clinical information, use of conventional therapy, complementary and alternative therapy, as well as interpersonal trust in patient-physician relationships using the Trust in Physician Scale (TPS). A regression analysis was conducted to identify factors associated with CAM use and with trust in physicians. RESULTS: The study included 189 patients. 57.14% of patients reported using complementary medicine at least once, most patients were women (77.78%), mean age was 46.67 ± 13.25 years with an average course of the disease of 11.11 ± 9.23 years. The most frequently used CAM treatments were cupping therapy, massage and the ingestion of a mixture of plants. Mean ± SD Trust in Physician Scale was 47.64 ± 7.2. There was no significant difference between CAM users vs. non-users (48.08 ± 6.9 vs 47.04 ± 7.4; p = 0.35). In uni and multivariate analysis, a low level of education was significantly associated with the use of CAM. However, no statistically significant difference was found with trust in physicians (OR = 1.020, 95% CI (0.978-1.063), p = 0.354). CONCLUSION: CAM therapy is common in patients with chronic inflammatory rheumatic diseases. No statistically significant association was found with trust in physicians, it was rather observed with level of education.

Influencia psicoemocional de la pandemia por COVID-19 en la experiencia farmacoterapéutica de los pacientes con patologías reumáticas / Psycho-emotional influence of COVID-19 pandemic on medication experience of patients with rheumatic diseases

Objetivo: Realizar una revisión bibliográfica para conocer el impacto de la influencia psicoemocional de la pandemia sobre la experiencia farmacoterapéutica de pacientes con patologías reumáticas tratados con fármacos antirreumáticos modificadores de la enfermedad. Métodos: Se seleccionaron artículos con metodología cualitativa, cuantitativa o mixta disponibles en inglés o castellano. Las bases de datos consultadas fueron Medline, Cochrane Library y PsycInfo. Se eligieron como términos MeSH para realizar la búsqueda: “COVID-19”, “Rheumatic Diseases”, “Qualitative”. Resultados: Se localizaron 8 publicaciones. Se examinaron títulos y resúmenes incluyendo 3 artículos y excluyendo 5. Emergieron otros 3 artículos que cumplían criterios de inclusión pero carecían de los términos MeSH seleccionados. Se analizaron un total de 6 artículos. Conclusiones: La pandemia y el aislamiento social han impactado en la salud mental de los pacientes con patologías reumáticas desencadenando como respuestas emocionales ansiedad, fatiga y estrés. En la mayoría de casos éstos han mantenido su tratamiento. Se distingue su autogestión y conocimiento de la enfermedad y la conciencia acerca de la importancia de continuar con su tratamiento para mantener la estabilidad de su patología. (AU)

Objective: To review the scientific literature concerning psycho-emotional impact of the COVID-19 pandemic on the medication experience of patients with rheumatic diseases treated with disease-modifying antirheumatic drugs. Methods: Articles selected were qualitative, quantitative or mixed methodology available in English or Spanish. Databases consulted were Medline, Cochrane Library and PsycInfo. «COVID-19», «Rheumatic Diseases», «Qualitative» MeSH terms were chosen to perform the search. Results: 8 publications were located. Titles and abstracts were examined including 3 articles and excluding 5. Another 3 articles emerged that met the inclusion criteria but lacked the selected MeSH terms. A total of 6 articles were analyzed. Conclusions: Pandemic and social isolation have impacted on mental health of patients with rheumatic diseases, triggering anxiety, fatigue and stress as emotional responses. In most cases they maintained their treatment. Self-management and knowledge about their disease and awareness of the importance of continuing treatments to maintain the stability of their pathology are distinguished. (AU)

Isolation in patients with inflammatory rheumatic diseases during COVID-19 pandemic compared to healthy individuals: a questionnaire survey.

As a result of the pandemic, many patients with an inflammatory rheumatic disease (IRD) have isolated themselves. The lack of disease management together with fear of infection could lead to changes in physical- and mental health. The aim of this study was to evaluate the social- and health behaviour in patients with an IRD compared with the behaviour of healthy individuals during the COVID-19 pandemic. The study was a questionnaire survey answered by patients with an IRD and healthy individuals (HI). The questionnaire contained seven sections with questions regarding COVID-19 and quality of life including SF-36, EQ-5D-5L, and visual analogue scale (VAS) pain, fatigue and global health. Of 1663 invited participants, 661 patients with IRD and 266 HI were included in the analyses. Patients with an IRD felt more isolated during the COVID-19 pandemic compared with HI (IRD: 9.5% (61/644), HI: 3.1% (8/259), p-value = 0.001). More HI (5.4%) had been infected with COVID-19 than patients with an IRD (1.7%). Among patients with an IRD those with worse self-reported disease activity outcomes (VAS pain, fatigue and global health, all p-value < 0.001), worse social functioning and emotional well-being were more isolated than individuals with low disease activity. Patients with an IRD feel more isolated during the COVID-19 pandemic compared to HI. Isolation seems to be most pronounced in patients with worse disease related patient-reported outcomes and lower quality of life.

Exploring the intersection of adverse childhood experiences, pediatric chronic pain, and rheumatic disease.

BACKGROUND: While the general relationship between ACEs and the development of chronic pain has become increasingly clear, how ACEs may shape a child's clinical presentation with regards to chronic pain has yet to be fully expounded. We aimed to determine the association between ACEs and clinical manifestations of pediatric chronic pain and explore the interaction of ACEs and pediatric rheumatic disease among youth with chronic pain on health-related outcomes. METHODS: We conducted a cross-sectional cohort study of patients aged ≤18 years with chronic pain seen in a pediatric rheumatology amplified pain clinic between August 2018 and July 2020. We stratified subjects into three groups: no ACEs, one ACE, and ≥ 2 ACEs. We assessed clinical signs and symptoms associated with the presence of ACEs using Chi-square or Wilcoxon-rank test. The association between ACEs as well as other variables of interest with functional impairment was tested using simple and multivariable linear regression. RESULTS: Of the 412 patients included, more than 75% of patients reported at least one ACE. Most frequent included history of mental illness in a first degree relative (56%) and parental divorce or separation (20%). Those with ≥2 ACEs had more somatic symptoms, worse functional disability, and a higher proportion of mental health conditions. There appeared to be a dose dependent interaction between ACEs and functional disability from co-morbid rheumatologic disease. In multivariable regression, higher verbal pain score, symptom severity score (SSS), and presence of autonomic changes were associated with estimated average increase in FDI score (ß = 1.05, 1.95 and 4.76 respectively; all p < 0.01). CONCLUSION: Children with chronic pain and/or rheumatologic diseases who are exposed to ACEs are at increased risk of greater symptomatology, functional disability, and somatization of symptoms. Our findings indicate an ongoing need for systemic evaluation of ACEs in children with chronic pain and/or rheumatic disease and incorporation of trauma-based care.

Quality of life of patients with rheumatic diseases during the COVID-19 pandemic: The biopsychosocial path.

BACKGROUND: Previous models that assess quality-of-Life (QoL) in patients with rheumatic diseases have a strong biomedical focus. We evaluated the impact of COVID-19 related-health care interruption (HCI) on the physical, psychological, social relationships and environment QoL-dimensions, and explored factors associated with QoL when patients were reincorporated to the outpatient clinic, and after six-month follow-up. PATIENTS AND METHODS: Study phase-1 consisted of a COVID-19 survey administered from June 24th-October 31st 2020, to outpatients with rheumatic diseases who had face-to-face consultation at outpatient clinic reopening. Study phase-2 consisted of 3 consecutive assessments of patient´s QoL (WHOQOL-BREF), disease activity/severity (RAPID-3), and psychological comorbidity/trauma (DASS-21 and IES-R) to patients from phase-1 randomly selected. Sociodemographic, disease and treatment-related information, and comorbidities were obtained. Multiple linear regression analysis identified factors associated with the score assigned to each WHOQOL-BREF dimension. RESULTS: Patients included (670 for phase-1 and 276 for phase-2), had primarily SLE and RA (44.2% and 34.1%, respectively), and all the dimensions of their WHOQOL-BREF were affected. There were 145 patients (52.5%) who referred HCI, and they had significantly lower dimensions scores (but the environment dimension score). Psycho-emotional factors (primarily feeling confused, depression and anxiety), sociodemographic factors (age, COVID-19 negative economic impact, years of scholarship, HCI and having a job), and biomedical factors (RAPID-3 score and corticosteroid use) were associated with baseline QoL dimensions scores. Psycho-emotional factors showed the strongest magnitude on dimensions scores. Most consistent predictor of six-month follow-up QoL dimensions scores was each corresponding baseline dimension score, while social determinants (years of scholarship and having a job), emotional factors (feeling bored), and biomedical aspects (RAPID 3) had an additional impact. CONCLUSIONS: HCI impacted the majority of patient´s QoL dimensions. Psycho-emotional, sociodemographic and biomedical factors were consistently associated with QoL dimensions scores, and these consistently predicted the QoL trajectory.

(Un)disclosed. Disease disclosure in people living with rheumatic diseases: An exploratory study.

OBJECTIVE: Little is known about disease-related disclosure (DD) in patients with rheumatic musculoskeletal diseases (RMDs). We aim to investigate DD behaviors and to explore which socio-demographic, clinical and psychological factors play a role in this self-disclosure process among patients with RMDs. METHODS: A cross-sectional Italian nationwide study captured DD in RMDs in different contexts (workplace, family, friends, partner, social networks). An ad hoc survey was developed and disseminated by the Patients' Association ALOMAR ODV (Lombard Association for Rheumatic Diseases) between June and July 2020. Patient demographics, clinical data, and questionnaires assessing anxiety, depression, anticipated stigma, patient health engagement, perceived social support, and perceived general health status were collected. RESULTS: There were 376 rheumatic patients who completed the survey. There were 73.9% of the participants who talk to others about their RMD "sometimes"; 18.7% disclose their RMD "always/very often", while 7.4% "never" talk about their RMD. A significant association was detected between DD and both perceived visibility (P = .04) and psychological support (P = .01). Moreover, participants who never/sometimes disclose their RMD reported significantly lower scores in the "Total" Social Support (P < .01) and in the "Friends" subscale (P < .001) compared to others. Psychological support and the "Friends" subscale were the only significant predictors of DD (both P = .002). CONCLUSIONS: The majority of RMD patients disclosed their disease "sometimes". The DD behavior is not associated with any specific demographic or clinical variables. Further research on the subject might help to foster better DD decision-making processes for rheumatic patients in different contexts of daily life.

Attitudes of patients with a rheumatic disease on drug use in the COVID-19 pandemic.

BACKGROUND: Anti-rheumatic drugs can increase the predisposition to infection, and patients may be unaware of continuing their treatment during the COVID-19 pandemic. OBJECTIVE: This study aimed to assess whether patients maintain their treatment for rheumatic conditions during the pandemic period and determine the factors responsible for discontinuation. METHODS: Patients were randomly selected from the prospectively collected database of our tertiary referral center. The patients were interviewed by telephone through a standardized closed-ended questionnaire, which is targeting the continuity of the treatment plan and the considerations related to the individual choice. The patients were asked whether they hesitated to visit the hospital for follow-up or intravenous drug administration. RESULTS: A total of 278 patients completed the questionnaire. While 62 of the patients (22.3%) had reduced or interrupted the treatment, only 11 patients (3.9%) stopped the treatment completely. A significant difference was observed between the duration of illness and the discontinuation of treatment. (p = 0.023) There was a significant difference in disease activity between the group that stopped treatment and continued treatment. (p = 0.001) There was no statistically significant difference in other demographic characteristics. One hundred thirty-five patients (48.6%) made the treatment decision by themselves, and 80% continued the treatment. Reasons for stopping the treatment were anxiety (48.4%), not being able to go to the hospital for intravenous treatment (45.1%), and not being able to find the drug (6.5%). CONCLUSION: Since patients with long-term illnesses were found to be significantly more likely to stop their treatment, this group of patients should be monitored.

Mental health in patients with rheumatic diseases related to COVID-19 pandemic: Experience in a tertiary care center in Latin America.

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.