Lupusqol

OBJECTIVE: To identify determinants of medication non-adherence in a Swedish population of systemic lupus erythematosus (SLE). METHODS: Patients with SLE from Karolinska and Örebro University Hospitals participated in a survey-based cross-sectional study. Demographics, disease activity, organ damage, HRQoL (LupusQol, EQ-5D-5 L), medication non-adherence (<80% on CQR-19 or MASRI) and beliefs about medicines (BMQ) were registered. MASRI was used to report adherence to different drugs/drug classes, categorised into (i) antimalarial agents (AMA), (ii) glucocorticoids and (iii) other SLE medications...

OBJECTIVES: To measure the association between systemic lupus erythematosus (SLE) remission and scores of patients reported outcome measures (PRO). METHODS: We performed a prospective cohort study of SLE patients with a 2-year follow-up, recording LupusPRO, LupusQol, SLEQOL, and SF-36 questionnaires. Remission was defined as remission-off-treatment (ROFT) and remission-on-treatment (RONT) according to the DORIS consensus. Mixed models accounting for repeated measures were used to compare groups as follow: ROFT and RONT versus no remission, and Lupus Low Disease activity state (LLDAS) versus no LLDAS...

The neutrophil-to-lymphocyte ratio (NLR) emerged as a potential biomarker in SLE, but its association with several outcomes remains unclear. We aimed to evaluate the relationship between NLR and SLE disease activity, damage, depression, and health-related quality of life. A cross-sectional study was conducted, including 134 patients with SLE who visited the Division of Rheumatology between November 2019 and June 2021. Demographics and clinical data including NLR, Safety of Estrogens in Lupus Erythematosus National Assessment-Systemic Lupus disease activity index (SELENA-SLEDAI), Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI), physician global assessment (PhGA), patient global assessment (PGA), patient health questionnaire (PHQ)-9, patient self-rated health, and lupus quality of life (LupusQoL) scores, were collected...

AIM: This quasi-experimental study aimed to explore effects of walking exercise on disease activity, sleep quality, and quality of life among individuals with systemic lupus erythematosus. METHODS: After recruiting people with systemic lupus erythematosus from a hospital in Taiwan between October 2020 and June 2021, participants were free to opt to receive one walking exercise programme plus standard care for 3 months or to membership of a control group receiving routine care...

OBJECTIVES: To assess the reliability and validity of two disease-specific questionnaires that assess the quality of life (QoL) among patients with Systemic Lupus Erythematosus (SLE); SLEQoL and LupusQoL in Malay language. This study also identified the factors affecting each domain of the questionnaires. METHODS: This cross-sectional study was conducted from June 2021 until April 2022, and SLE patients were recruited to complete the SLEQoL, LupusQoL and Short Form Health Survey (SF-36) in Malay language...

BACKGROUND: Observations with rituximab suggest B-cell independent mechanisms of cutaneous lupus erythematosus (CLE) in systemic lupus erythematosus (SLE), especially discoid lupus erythematosus (DLE). Type-I interferon receptor blockade with anifrolumab shows efficacy in SLE, but efficacy for cutaneous disease of specific morphologies has not been studied. Interferon has pleotropic immune effects and it is unknown which of these are critical to therapeutic response. OBJECTIVES: We evaluated clinical efficacy and quality-of-life impact of type-I interferon-blockade in: (i) rituximab-refractory CLE; (ii) DLE and other morphologies and (iii) transcriptomic and flow cytometric biomarkers...

OBJECTIVES: Mediation analyses were conducted to measure the extent to which Musculoskeletal (MSK) flares and depression affected physical health through excessive fatigue. METHODS: Mediation analyses were performed in a large multicentre cohort of SLE patients. Domains of LupusQoL and SLEQOL questionnaires were selected as outcomes, MSK flares according to the SFI-R score and depression defined by CES-D scale as exposures and different fatigue domains from MFI-20 and LupusQoL questionnaires as mediators...

BACKGROUND: Self-disclosure may enhance positive illness perceptions, whereas patients with systemic lupus erythematosus (SLE) always facing negative illness perceptions due to multiple reasons, so elucidation of factors affecting self-disclosure may facilitate the development of quality of life. METHODS: A total of 161 hospitalized patients with SLE were recruited. Scales on demographic and clinical characteristics, self-disclosure, psychosocial status (e.g. Social Support Rating Scale - SSRS) and quality of life were used to collect related information from clients...

BACKGROUND/AIM: Despite remission or low disease activity non-inflammatory complaints like exhaustion, fatigue, and pain persist in a significant proportion of patients with systemic lupus erythematosus (SLE) and have a considerable impact on health-related quality of life. This study evaluated the effects of balneotherapy on non-inflammatory complaints, quality of life, and work productivity of patients with SLE. PATIENTS AND METHODS: SLE patients in remission/low disease activity in three rheumatology centers were included in this randomized, controlled, follow-up study...

OBJECTIVE: SLE and lupus nephritis (LN) have significant impacts on the health-related quality of life of patients living with the condition, which are important to capture from the patient's perspective using patient-reported outcomes (PROs). The objectives of this study were to evaluate the content validity of PROs commonly used in SLE and LN (36-Item Short Form Health Survey (SF-36), Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) and Lupus Quality of Life (LupusQoL), as well as novel PRO symptom severity items measuring skin rash, joint pain, joint stiffness and swelling of the legs and/or feet, in both populations...

The evidence on the relationship between social support and quality of life in female systemic lupus erythematosus (SLE) patients is complex. The purpose of this study was to explore the impacts of distress disclosure and anxiety on the association between social support and quality of life among Chinese women with SLE. A cross-sectional study was conducted, and 237 samples were obtained. Measures included demographic characteristics, Lupus Quality of Life (LupusQoL), social support rate scale (SSRS), distress disclosure index (DDI), and self-rating anxiety scale (SAS)...

INTRODUCTION: LupusQoL is a questionnaire specifically designed to assess health-related quality of life (HRQoL) in SLE patients. We report on the translation and cross-cultural adaptation of LupusQoL into European Portuguese. METHODS: Translation and cultural adaptation were performed according to standard protocol described by the original developers. LupusQoL-PT was administered to patients during a routine visit from an outpatient clinic at a university hospital in Portugal...

OBJECTIVE: The aim of this study was to investigate the association of demographic factors, clinical manifestations and disease activity of systemic lupus erythematosus (SLE) with intimate relationships in female patients with SLE. DESIGN: This was a cross-sectional study based on questionnaires. SETTING: This study was conducted at a regional teaching hospital in southern Taiwan from April to September 2019. PARTICIPANTS: Adult patients with SLE recruited from the outpatient rheumatology clinics of the study hospital...

BACKGROUND: Flares in patients with SLE, regardless of their severity, have been associated with damage accrual. However, their impact on health-related quality of life (HRQoL) has not been fully evaluated. In fact, disease activity is only minimally associated with HRQoL. OBJECTIVE: To determine the association between flares and HRQoL. METHODS: Patients from the Almenara Lupus Cohort were included. Visits occurring between December 2015 and February 2020 were evaluated...

In this study we systematically investigated the health-related quality of life (HRQoL) tools, which have been most often used over the last five years to evaluate the QoL in patients with systemic lupus erythematosus (SLE), focusing on their items and applications. A detailed literature search was conducted: the inclusion criteria were as follows: 1) studies including at least 50 patients; 2) studies including at least 25 patients with SLE; 3) quality of life testing with validated measures. The systematic review was based on 119 studies for a total of 32,449 SLE patients and 3092 controls...

BACKGROUND: The 2009 Food and Drug Administration (FDA) patient-reported outcome (PRO) guidance outlines characteristics of rigorous PRO-measure development. There are a number of widely used PRO measures for Systemic Lupus Erythematosus (SLE), but it is unknown how well the development processes of SLE PRO measures align with FDA guidance; including updated versions. The objective of this study was to assess how well the LupusQoL and LupusPRO, and corresponding updated versions, LupusQoL-US and LupusPROv1...

OBJECTIVE: The Systemic Lupus International Collaborating Clinics Frailty Index (SLICC-FI) was developed to assess health deficits including disease activity, organ damage, comorbidities and functional status. We examined any relationship between SLICC-FI and objective physical function measures, activities of daily living (ADL) performance, and quality of life in Systemic Lupus Erythematosus (SLE). METHODS: SLICC-FI was estimated using data from patient files and patient-reported questionnaires...

BACKGROUND: We have here assessed the impact of demographic, clinical, and treatment compliance characteristics on health-related quality of life (HRQoL) of Venezuelan patients with systemic lupus erythematosus (SLE). We have used a disease-specific questionnaire, the Lupus Quality of Life (LupusQoL), validated in our patient population, to measure HRQoL. METHODS: A cross-sectional study was conducted among 100 patients with SLE from outpatient clinics. Patients completed a form with demographic, clinical, and treatment compliance data, and the LupusQoL questionnaire...

OBJECTIVE: To assess whether the care model (comprehensive vs regular) has any impact on the clinical outcomes of systemic lupus erythematosus patients. METHODS: Between August 2019 and January 2020, we evaluated SLE patients being cared for at two Peruvian hospitals to define the impact of care model on disease activity state and health-related quality of life (HRQoL). Disease activity was ascertained with the SLEDAI-2K and the Physician Global Assessment (PGA) which allows to define Lupus Low Disease Activity State (LLDAS) and Remission...

Objectives: This study aims to determine the factors associated with absenteeism, presenteeism, and overall work impairment in patients with systemic lupus erythematosus (SLE). Methods: A total of 133 consecutive working patients with SLE were assessed between October 2017 and December 2018, using a standardized data collection form. Sociodemographic, disease, and work-related variables were collected. Work productivity and activity impairment (WPAI) was assessed with the respective questionnaire; absenteeism and presenteeism due to overall health and symptoms during the past 7 days were scored...