Characteristics and information searched for by French patients with systemic lupus erythematosus: A web-community data-driven online survey

Meunier, B.; Jourde-Chiche, Noémie; Mancini, Julien; Chekroun, M; Rétornaz, F.; Chiche, Laurent

doi:10.1177/0961203315610644

Cited by 14 publications

(13 citation statements)

References 12 publications

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“…Seven of these studies (33.3%) identified a need for more interactive educational platforms with high-quality information, two (9.5%) demonstrated a need for the development of novel methods of disease monitoring, and two (9.5%) established a need for sources of support such as virtual communities. [24][25][26][27][28]30,32,34,35,39 Randomized Trials using mHealth technologies for SLE-The first randomized trial identified in the review compared the effects of cellular text messaging reminders with education on adherence to clinic visits (standard of care) in a cohort of 70 patients with childhood-onset SLE. Authors demonstrated that the use of text messaging reminders improved visit adherence, but not adherence to hydroxychloroquine.…”

Section: Literature Reviewmentioning

confidence: 99%

“…Of the included studies, 10 (48%) were observational, 4 (19%) were qualitative, 3 (14%) were reviews, 2 (9.5%) were randomized trials, and 2 (9.5%) were study protocols for future randomized trials. 10,[22][23][24][25][26][27][28][29][30][31][32][33][34][35][36][37][38][39][40][41] The detailed characteristics of the included studies are described in Table 4. Among studies specifying a sample size, the median (range) number of SLE patients included was 84 (1-153).…”

Section: Literature Reviewmentioning

confidence: 99%

Section: Literature Reviewmentioning

confidence: 99%

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Mobile health technologies for the management of systemic lupus erythematosus: a systematic review

Dantas

Weber

Osani

et al. 2020

Lupus

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Objective We aimed to perform a standardized review of available mobile health (mHealth) applications (apps) for systemic lupus erythematosus (SLE) and to conduct a systematic review of the literature on mHealth technologies in SLE. Methods Google Play and AppStore in the United States of America were queried and the quality of eligible mHealth apps was assessed using the Mobile App Rating Scale (MARS). Web of Science, EMBASE, Medline, and Cochrane databases were systematically searched from inception through June 2019. Results Of 324 mHealth apps found, 20 were eligible for inclusion; 10 focused on education, 7 offered tools to track patient-reported symptoms, 5 included interactive online communities, and 1 enabled emoji sharing. The reviewed apps scored poorly on the MARS quality scale with a mean score 2.3 (0.6) out of 5. Of 1147 studies identified in the literature review, 21 were eligible for inclusion; 11 studies (52.4%) focused on the development and use of mHealth for providing patient information, while only 2 (9.5%) were randomized trials of mHealth interventions. Conclusions Although there is growing interest in the development of mHealth technologies to support SLE patients, currently available tools are of poor quality and limited functionality, and the literature examining this area is sparse.

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Section: Literature Reviewmentioning

confidence: 99%

Section: Literature Reviewmentioning

confidence: 99%

Section: Literature Reviewmentioning

confidence: 99%

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Mobile health technologies for the management of systemic lupus erythematosus: a systematic review

Dantas

Weber

Osani

et al. 2020

Lupus

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“…There is a growing literature demonstrating that most patients, irrespective of demographics and underlying disease, prefer extensive disclosure of information related to treatments. 4,11 This is particularly important for physicians caring for patients with lupus and other chronic rheumatic diseases. In addition to efforts to provide more targeted therapies with fewer side-effects, efforts are needed to involve all patients in treatment decision-making as distinct preferences were documented in different patient groups.…”

Section: Discussionmentioning

confidence: 99%

“…Carenity is used by healthcare professionals as a vector to share online patient surveys. 4,5 The lupus community was created in France in 2011 and currently comprises 1568 patients.…”

Section: Introductionmentioning

confidence: 99%

Unsupervised clustering analysis of data from an online community to identify lupus patient profiles with regards to treatment preferences

Testa

Jourde-Chiche

Mancini

et al. 2021

Lupus

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Objective Lupus is a chronic complex autoimmune disease. Non-adherence to treatment can affect patient outcomes. Considering patients’ preferences into medical decisions may increase acceptance to their medication. The PREFERLUP study used unsupervised clustering analysis to identify profiles of patients with similar treatment preferences in an online community of French lupus patients. Methods An online survey was conducted in adult lupus patients from the Carenity community between August 2018 and April 2019. Multiple Correspondence Analysis (MCA) was used with three unsupervised clustering methods (hierarchical, kmeans and partitioning around medoids). Several indicators (measure of connectivity, Dunn index and Silhouette width) were used to select the best clustering algorithm and choose the number of clusters. Results The 268 participants were mostly female (96%), with a mean age of 44.3 years 83% fulfilled the American College of Rheumatology (ACR) self-reported diagnostic criteria for systemic lupus erythematosus. Overall, the preferred route of administration was oral (62%) and the most important feature of an ideal drug was a low risk of side-effects (32%). Hierarchical clustering identified three clusters. Cluster 1 (59%) comprised patients with few comorbidities and a poor ability to identify oncoming flares; 84% of these patients desired oral treatments with limited side-effects. Cluster 2 (13%) comprised younger patients, who had already participated in a clinical trial, were willing to use implants and valued the compatibility of treatments with pregnancy. Cluster 3 (28%) comprised patients with a longer lupus duration, poorer control of the disease and more comorbidities; these patients mainly valued implants and injections and expected a reduction of corticosteroid intake. Conclusions Different profiles of lupus patients were identified according to their drug preferences. These clusters could help physicians tailor their therapeutic proposals to take into account individual patient preferences, which could have a positive impact on treatment acceptance and then adherence. The study highlights the value of data acquired directly from patient communities.

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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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Characteristics and information searched for by French patients with systemic lupus erythematosus: A web-community data-driven online survey

Abstract: Online patient communities provide original unbiased information that can help improve provision of information to SLE patients.

Cited by 14 publications

References 12 publications

Mobile health technologies for the management of systemic lupus erythematosus: a systematic review

Mobile health technologies for the management of systemic lupus erythematosus: a systematic review

Unsupervised clustering analysis of data from an online community to identify lupus patient profiles with regards to treatment preferences

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

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