Validation of the LupusQoL in Venezuela: A specific measurement of quality of life in patients with systemic lupus erythematosus

Carrión‐Nessi, Fhabián S.; Marcano-Rojas, María V.; Freitas-DeNobrega, Diana C.; Arocha, Sinibaldo Romero; Antuarez-Magallanes, Allen W.; Fuentes-Silva, Yurilís

doi:10.1016/j.reumae.2021.02.005

Cited by 3 publications

(3 citation statements)

References 24 publications

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“…In this regard, we find in the literature some studies and surveys conducted in cohorts of lupus patients outside the Spanish territory that assess the “burden” of the disease on the different patient outcomes. Some examples are the SLE-UPDATE survey that mainly assesses patient satisfaction with treatments [ 10 ], assessment of quality of life using the LupusQol (Lupus Quality of life) questionnaire in Venezuela [ 11 ] and Turkey [ 12 ], the 2014 LUPUS UK Members survey [ 13 ], some international multicenter studies [ 14 , 15 ], a French survey [ 16 ], different questionnaires that assess how the disease affects work productivity [ 15 , 17 ] and fatigue [ 17 , 18 ]. Nationally and to our knowledge, this is the survey with the largest number of participants ( N = 1263) conducted in patients with lupus.…”

Section: Discussionmentioning

confidence: 99%

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An online survey of the Spanish Lupus Patient Association (FELUPUS): patient perceptions and experiences

et al. 2023

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Objectives A survey conducted by the Spanish Lupus Federation (FELUPUS) shows the results on perceptions and experiences of the people who live with lupus in Spain. The information was gathered anonymously from May 21 st to June 30 th , 2020. The aim of the study was to monitor the impact of the disease on quality of life, as well as to measure the impact of organ damage in lupus patients. Methods A national survey was conducted among people with lupus living in Spain who belong to the Spanish Lupus Patient Association (FELUPUS). Online interviews of approximately 25 min were completed. The information was gathered anonymously from May 21 st to June 30 th , 2020. Results One thousand two hundred sixty-three interviews were completed. 92% had a diagnosis of Systemic Lupus Erythematosus (SLE) and 8% of Cutaneous Lupus Erythematosus (CLE); 95% of the patients surveyed were female. Most of the patients claimed they stay up late, exercising and work/study were the most limited actions due to the disease. 73% of patients considered that there was little knowledge of the disease by society and at the time of diagnosis, the patient’s level of knowledge about lupus was low in 92% of them. Regarding organ damage, many patients did not understand the concept of chronicity and irreversibility of the term, relating it erroneously to acute symptoms like fatigue (38%), joint pain (47%) and even to the presence of cutaneous symptoms such as the presence of oral ulcers (17%). Conclusions The survey highlighted the need for disease awareness campaigns, greater involvement of healthcare professionals and the need to provide more information to lupus patients from the time of diagnosis. Nationally and to our knowledge, this is the survey with the largest number of participants ( N = 1263) conducted in patients with lupus. Key Points • A national survey was conducted among people with lupus living in Spain and belonging to patient associations in Spain (FELUPUS). • Nationally and to our knowledge, this is the survey with the largest number of participants (N = 1263) conducted in patients with lupus. • Most of the patients claimed they stay up late, exercising and work/study were the most limited actions due to the disease. • 73% of patients considered that there is little knowledge of the disease by society and at the time of diagnosis, the patient’s level of knowledge about lupus was low in 92% of them. Supplementary Information The online version contains supplementary material available at 10.1007/s10067-023-06500-3.

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Section: Discussionmentioning

confidence: 99%

“…A relevant finding is the lack of agreement on disease control between physicians and SLE patients [ 21 – 25 ]. In general, once the treatment has been established, different studies show that patient satisfaction with the treatment is high in most patients [ 10 , 16 , 26 ].…”

Section: Discussionmentioning

confidence: 99%

An online survey of the Spanish Lupus Patient Association (FELUPUS): patient perceptions and experiences

et al. 2023

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“…LupusQoL is an SLE-specific instrument measuring HRQoL that has undergone extensive validation in the UK and has been widely adapted to other cohorts [21]. It has been validated in a US sample of SLE patients [22] and also cross-culturally with cohorts from Spain [23], Iran [24], Turkey [25], Italy [26], France [27], Venezuela [28] and China [29]. LupusQoL is a 34-item questionnaire that covers eight domains including physical health, pain, planning, intimate relationships, burden to others, emotional health, body image and fatigue.…”

Section: Lupusqolmentioning

confidence: 99%

Patient-Reported Outcomes for Quality of Life in SLE: Essential in Clinical Trials and Ready for Routine Care

Nguyen

Huang

O’Neill

2021

JCM

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Patient-reported outcome (PRO) instruments are widely used to assess quality of life in Systemic Lupus Erythematosus (SLE) research, and there is growing evidence for their use in clinical care. In this review, we evaluate the current evidence for their use in assessing quality of life in SLE in both research and clinical settings and examine the different characteristics of the commonly used PRO tools. There are now several well-validated generic and SLE-specific tools that have demonstrated utility in clinical trials and several tools that complement activity and damage measures in the clinical setting. PRO tools may help overcome physician–patient discordance in SLE and are valuable in the assessment of fibromyalgia and type 2 symptoms such as widespread pain and fatigue. Future work will identify optimal PRO tools for different settings but, despite current limitations, they are ready to be incorporated into patient care.

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Global excellence in rheumatology in Latin America: The case of systemic lupus erythematosus

et al. 2023

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Systemic lupus erythematosus (SLE) affects more severely non-White populations, due to their genetic background and sociodemographic characteristics. Several studies have evaluated Latin American SLE patients to determine their genetic and clinical characteristics as well as prognostic factors; these studies have not only allowed the development of treatment guidelines aimed at the region but also to support regional and global projects. Additionally, educational activities in Spanish and Portuguese have been started to reduce our patients’ health illiteracy. Despite the relatively low research output from Latin American countries, we consider that studies from our region coupled with the networks developed to increase our capabilities, could be a model for other rare autoimmune diseases.

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Validation of the LupusQoL in Venezuela: A specific measurement of quality of life in patients with systemic lupus erythematosus

Cited by 3 publications

References 24 publications

An online survey of the Spanish Lupus Patient Association (FELUPUS): patient perceptions and experiences

An online survey of the Spanish Lupus Patient Association (FELUPUS): patient perceptions and experiences

Patient-Reported Outcomes for Quality of Life in SLE: Essential in Clinical Trials and Ready for Routine Care

Global excellence in rheumatology in Latin America: The case of systemic lupus erythematosus

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