Perceived dignity is an unrecognized source of emotional distress in patients with rheumatic diseases: Results from the validation of the Mexican version of the Patient Dignity Inventory.

INTRODUCTION: Dignity has rarely been explored in patients with rheumatic diseases (RMDs), which contrasts with patients´ observations that dignity is a relevant area for research focus. The study's primary objective was to adapt and validate the Mexican version of the Patient Dignity Inventory (PDI-Mx) in patients with RMDs, and to estimate the proportion of patients with distress related to perceived dignity (DPD) assessed with the PDI-Mx. METHODS: This cross-sectional study was developed in 2 phases. Phase 1 consisted of pilot testing and questionnaire feasibility (n = 50 patients), PDI-Mx content validity (experts' agreement), construct validity (exploratory factor analysis), discriminant validity (Heterotrait-Monotrait correlations' rate [HTMT]), criterion validity (Spearman correlations) and PDI-Mx reliability with internal consistency (Cronbach's alpha) and test-retest (intra-class correlation coefficients [ICC]) in 220 additional outpatients (among whom 30 underwent test-retest). Phase 2 consisted of quantifying DPD (PDI-Mx cut-off ≥54.4) in 290 outpatients with RMDs. RESULTS: Overall, patients were representative of typical outpatients with RMDs from a National tertiary care level center. The 25-item PDI-Mx was found feasible, valid (experts' agreement ≥82%; a 4-factor structure accounted for 68.7% of the total variance; HTMT = 0.608; the strength of the correlations was moderate to high between the PDI-Mx, the Depression, Anxiety, and Stress scale dimensions scores, and the Health Assessment Questionnaire Disability Index score) and reliable (Cronbach's ɑ = 0.962, ICC = 0.939 [95%CI = 0.913-0.961]). DPD was present in 78 patients (26.9%). CONCLUSIONS: The PDI-Mx questionnaire showed good psychometric properties for assessing DPD in our population. Perceived dignity in patients with RMDs might be an unrecognized source of emotional distress.

Sleep quality and predictors of optimal sleep in patients with rheumatoid arthritis: data from a recent-onset cohort.

OBJECTIVES: Sleep disorders are part of the symptomatology of rheumatoid arthritis (RA) patients and are related to disease characteristics and comorbidities. The study describes sleep quality among RA patients and identifies predictors of optimal sleep. METHODS: Patients whose data were analysed were identified from the recent-onset RA cohort initiated in 2004. In 2010, the Medical Outcome Study Sleep Scale (MOS-SS) was incorporated into the patients' assessments. Up to December 2019, the cohort comprised 187 patients with at least one MOS-SS application (in 78 patients at cohort entry) and six months of outcomes behaviour (cumulative) previous to the MOS-SS application: DAS28-ESR, pain-VAS, fatigue, HAQ-DI, SF-36, treatment (corticosteroids, DMARDs/patient and adherence), Charlson score, and major depressive episodes. A trained data abstractor retrospectively reviewed their charts. Multiple logistic regression analysis estimated odds ratios (95% confidence interval) to define baseline and cumulative variables predictive of optimal sleep (dichotomised variable derived from the quantity of sleep dimension of the MOS-SS). RESULTS: At the first MOS-SS application, patients were primarily middle-aged women with short disease duration and low disease activity. They scored higher on the "snoring" and "sleep non-adequacy" MOS-SS dimensions. There were 96 patients (51.3%) with optimal sleep. Lower baseline BMI, better baseline fatigue score, longer follow-up at the clinic, and better SF-36 physical summary score were predictors of optimal sleep (mental summary score also remained in the model when switched to the physical summary score). CONCLUSIONS: Optimal sleep is achieved by half of the RA patients and predicted by BMI, patient-reported outcomes, and follow-up.

Impact of a hybrid medical care model in the rheumatoid arthritis patient-reported outcomes: A non-inferiority crossover randomized study.

OBJECTIVE: Patients and physicians can naturally adopt hybrid healthcare models that combine face-to-face consultations with telemedicine. The study's objective was to compare the impact of two healthcare interventions, hybrid care modality and face-to-face consultation, on the patient-reported outcomes of rheumatoid arthritis patients, during the COVID-19 pandemic. METHODS: Consecutive outpatients reincorporated to a clinic previously in lockdown were invited to a non-inferiority, randomized study (October 2020--May 2022). Patients were randomized to 6 months of face-to-face consultation or hybrid care modality (intervention period-1) and then the converse modality (intervention period-2). The primary outcome was disease activity/severity behavior (Routine Assessment of Patient Index Data 3). Additional patient-reported outcomes were disability (Health Assessment Questionnaire Disability Index), quality-of-life (World Health Organization quality of life questionnaire-brief version), adherence and satisfaction with medical care, and treatment recommendation. Sample size calculation established 55 patients/healthcare interventions. RESULTS: There were 138 patients invited to participate, 130 agreed and 121 completed their study participation. Sixty-one and 60 patients respectively, received face-to-face consultation and hybrid care modality over intervention period-1. Patients were primarily middle-aged females (90.1%), with (median, IQR) 12 (9-16) years of education, long-standing disease, working (62.8%), receiving disease-modifying anti-rheumatic drugs (96.7%), and corticosteroids (61.2%). Patients had low disease activity (median Routine Assessment of Patient Index Data 3: 2.7) and Health Assessment Questionnaire Disability Index score that translated into the absence of disability, while quality of life was compromised. Baseline characteristics were similar between patients assigned to each healthcare intervention. Differences in Routine Assessment of Patient Index Data 3 behavior were below the non-inferiority margin. Results considered the order in which patients received the intervention and baselines scores, and extended to the patient-reported outcomes left. CONCLUSIONS: Hybrid care modality was non-inferior to in-person consultations in achieving patient-reported outcomes during the COVID-19 pandemic in rheumatoid arthritis patients.

Comparison of Teleconsultations and In-Person Consultations from Outpatients with Rheumatoid Arthritis, During the COVID-19 Pandemic: An Internal Audit of Medical Notes.

Introduction: The objectives of this study were to compare the quality-of-care and compliance with medical record regulations between in-person consultations (QIP and CIP) and telephone consultations (QTP and CTP), from rheumatoid arthritis (RA) outpatients, during the COVID-19 pandemic, and to explore the impact of the consultation modality on the treatment. Methods: Data from 324 medical notes corresponding to rheumatic consultations between July and December 2020 were abstracted. Notes were selected considering a stratified (in-person and telephone consultations) random sampling strategy. QIP, CIP, QTP, and CTP were scored based on prespecified criteria as percentages, where higher numbers translated into better standards. Logistic regression analysis investigated the association between the consultation modality and the treatment recommendation (dependent variable). Results: There were 208 (64.2%) medical notes related to in-person consultations and 114 (35.2%) to telephone consultations. Overall, medical notes corresponded to middle-aged women with long-standing disease. QIP was superior to QTP (median, interquartile range): 60% (60-75%) versus 50% (25-60%), p ≤ 0.001, and differences were related to disease activity and prognosis documentation (81.3% vs. 34.5% and 55.8% vs. 33.6%, respectively, p ≤ 0.001) and the prolonged prescription of glucocorticoids with a documented management plan (58.5% vs. 30.4%, p = 0.045). Meanwhile, CIP and CTP were similar. Telephone consultation was a significant risk factor for no changes in the treatment recommendation (odds ratio: 2.113, 95% confidence interval: 1.284-3.479, p = 0.003), and results were consistent in the 142 medical notes with documented absence of disease activity. Conclusions: In the clinical context of RA, the quality-of-care provided by telephone consultations is below the standard of care and impacts the treatment.

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.

Clinical and bioethical implications of health care interruption during the COVID-19 pandemic: A cross-sectional study in outpatients with rheumatic diseases.

BACKGROUND: To determine the impact of health care interruption (HCI), on clinical status of the patients reincorporated to an outpatient clinic for rheumatic diseases (OCDIR), from a tertiary care level center who was temporally switched to a dedicated COVID-19 hospital, and to provide a bioethical analysis. METHODS: From March to June 2020, the OCDIR was closed; since June, it is limited to evaluate 25% of the ongoing outpatients. This cross-sectional study surveyed 670 consecutive rheumatic outpatients between June 24th and October 31th, concomitant to the assessment of the rheumatic disease clinical status by the attendant rheumatologist, according to disease activity level, clinical deterioration and adequate/inadequate control. Multiple logistic regression analysis identified factors associated to HCI and to clinical deterioration. RESULTS: Patients were middle-aged females (86.7%), with median disease duration of 10 years, comorbidity (38.5%) and 138 patients (20.6%) had discontinued treatment. Primary diagnoses were SLE and RA, in 285 (42.5%) and 223 (33.3%) patients, respectively. There were 344 patients (51.3%) with HCI. Non-RA diagnosis (OR: 2.21, 95%CI: 1.5-3.13), comorbidity (OR: 1.7, 95%CI: 1.22-2.37), patient's need for rheumatic care during HCI (OR: 3.2, 95%CI: 2.06-4.97) and adequate control of the rheumatic disease (OR: 0.64, 95%CI: 0.45-0.9) were independently associated to HCI. There were 160 patients (23.8%) with clinical deterioration and associated factors were disease duration, substantial disease activity previous HCI, patients need for rheumatic care and treatment discontinuation. CONCLUSIONS: HCI during COVID-19 pandemic impacted course of rheumatic diseases and need to be considered in the bioethical analysis of virus containment measures.