Percepciones de los pacientes con enfermedades reumáticas tratados con biológicos subcutáneos sobre su nivel de información. Encuesta RHEU-LIFE

Toro, Javier de; Cea‐Calvo, Luis; Battle, Enrique; Carmona, Loreto; Arteaga, María Jesús Soler; Fernández, Sabela; González-Fernández, Carlos

doi:10.1016/j.reuma.2017.11.006

Cited by 3 publications

(2 citation statements)

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“…This is a subanalysis of the RHEU-LIFE study, designed to know the perception, impact upon quality of life and degree of satisfaction with treatment among patients with inflammatory rheumatic diseases treated with SC biological drugs (de Toro et al, 2017;Gonzalez et al, 2017). In the period between September to October 2015, the patients were invited to participate by physicians or nurses from rheumatology departments of 50 Spanish hospitals, which selected consecutive adults diagnosed with any of three target diseases (RA, axSpA and PsA) and treated with SC biological drugs from at least the medical visit prior to enrolment in the study and who, in the opinion of the rheumatologist, were able to understand and answer the survey.…”

Section: Methodsmentioning

confidence: 99%

“…The survey finally comprised 54 closed-ended questions addressing the following aspects: sociodemographic characteristics, perceived impact of the disease upon daily life, aspects referred to how information was received about the disease and treatment, the prescription process of the SC biological drug, and logistic and follow-up issues. The results referred to perceived disease impact, preferences, satisfaction with treatment and information have been published elsewhere (de Toro et al, 2017;Gonzalez et al, 2017). A number of questions were designed to explore patient preferences and experience regarding SDM, which are presented here.…”

Section: Study Questionnairementioning

confidence: 99%

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Patients' perceptions on shared decision making during prescription of subcutaneous biological drug treatments for inflammatory arthritis: The RHEU‐LIFE survey

Toro

González-Fernández

Cea‐Calvo

et al. 2020

Musculoskeletal Care

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Objectives: The aim of this study was to explore the preferences of patients with rheumatic diseases and their perceived experience regarding participation in shared decision making (SDM) when they were prescribed a subcutaneous (SC) biological drug. Methods: A printed survey was handed to 1,000 patients with inflammatory rheumatic diseases treated with SC biological drug. The survey included closed questions about preferences regarding decision making and about patients' experience when they were prescribed an SC biological drug. Descriptive statistics were performed with stratification by patient profiles, using chi-square for comparisons between groups. Results: A total of 592 surveys were received (response rate 59.2%, mean age 51.7 years, 57.6% women). Some 28.2% of patients reported preferring to take part in treatment selection, a percentage that was higher in younger patients, in those with higher academic degree and in those who search information in sources different to that of health care professionals. Over half of patients (56.3%) perceived that the rheumatologist considered their opinion when prescribing an SC biological drug, a percentage higher in younger people. Only in 40.8% of cases did the patients' preference match their perception of their participation in the process. No differences were observed by sex, disease or number of biologics. Conclusions: Patients with inflammatory rheumatic diseases want information about their treatments but mostly leave the prescription decision to the rheumatologist. Younger people, or those with higher academic degree, more often want to participate in the SDM. There are discrepancies between patient preferences and perceptions of this process.

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Section: Methodsmentioning

confidence: 99%

Section: Study Questionnairementioning

confidence: 99%

Patients' perceptions on shared decision making during prescription of subcutaneous biological drug treatments for inflammatory arthritis: The RHEU‐LIFE survey

Toro

González-Fernández

Cea‐Calvo

et al. 2020

Musculoskeletal Care

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Perceived treatment satisfaction in patients with systemic rheumatic diseases treated with biologic therapies: results of a self-reported survey

et al. 2023

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Biological agents are widely used for the management of systemic rheumatic diseases (SRDs) and their therapeutic implications have been expanded beyond inflammatory arthropathies to more complicated autoimmune disorders, such as systemic lupus erythematosus, vasculitis, and systemic sclerosis. The aim of this study was to investigate treatment satisfaction and overall experience of SRDs’ patients receiving biologics as well as to explore patient’s perspectives on the quality of services provided by rheumatology departments and to determine factors related to the level of satisfaction. We performed a synchronous correlation study. Patients with SRDs answered an anonymous questionnaire assessing their satisfaction and how treatment with biologics has affected their quality of life and functionality. Sample consisted by 244 patients (65.2% women), with mean age of 50.4 years, and the most common diagnosis was rheumatoid arthritis (37.3%). Sixty one percent of patients received intravenous therapy and 39% subcutaneously. Overall, 80.5% of the patients reported a positive/very positive effect of their treatment on their life. The average total patient satisfaction from the unit was 79.8%. The presence of mental disease was significantly associated with less positive impact of the treatment on patients’ life, worse quality of life, and greater pain. In conclusion, patients with a broad spectrum of SRDs were generally satisfied and treatment with biologic regimens appeared to have a positive impact on several aspects of their life. The majority of patients were at least satisfied with all the characteristics of the unit staff and better quality of life was associated with greater satisfaction about the Unit and more positive affect of the treatment in patients’ life. Supplementary Information The online version contains supplementary material available at 10.1007/s00296-023-05280-y.

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Factors influencing choice of b/ts DMARDs in managing inflammatory arthritis from a patient perspective: a systematic review of global evidence and a patient-based survey from Hong Kong

Li,

Lau,

Peng

et al. 2023

BMJ Open

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ObjectivesTo investigate factors concerning patients regarding biological/target synthetic disease-modifying antirheumatic drugs (b/ts DMARDs) in treating inflammatory arthritis (IA).DesignThis study consists of a systematic review and a cross-sectional survey in Hong Kong. A systematic review of literature following Preferred Reporting Items for Systematic Reviews and Meta-Analyses was conducted on PubMed, Web of Science, Cochrane and Embase between 1 January 2000 and 1 January 2022. Content analysis was conducted to summarise factors grouped by four themes—social aspects (SA), clinical aspects (CA), medicine characteristics (MC) and financial aspects (FA) in the decision-making process. One cross-sectional survey among Hong Kong patients with IA was conducted to add to global evidence.SettingA systematic review of global evidence and a patient-based survey in Hong Kong to complement scarce evidence in Asia regions.ResultsThe systematic review resulted in 34 studies. The four themes were presented in descending order consistently but varied with frequency throughout decision-making processes. During decision-making involving medication initiation, preference and discontinuation, MC (reported frequency: 83%, 86%, 78%), SA (56%, 43%, 78%) and FA (39%, 33%, 56%) were the three most frequently reported factors, whereas CA was less studied. Local survey also revealed that MC factors such as treatment efficacy and the probability of severe adverse events, and SA factors such as the availability of government or charity subsidy, influenced patients’ initiation and preference for b/ts DMARDs. Meanwhile, self-estimated improvement in disease conditions (SA), drug side effects (MC) and drug costs (FA) were associated with treatment discontinuation.ConclusionsGlobal and local evidence consistently indicate that MC and SA are important considerations in patients’ decisions regarding novel DMARDs. Health policies that reduce patients’ financial burden and enhances healthcare professionals’ engagement in decision-making and treatment delivery should be in place with an efficient healthcare system for managing IA optimistically.

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Percepciones de los pacientes con enfermedades reumáticas tratados con biológicos subcutáneos sobre su nivel de información. Encuesta RHEU-LIFE

Cited by 3 publications

References 29 publications

Patients' perceptions on shared decision making during prescription of subcutaneous biological drug treatments for inflammatory arthritis: The RHEU‐LIFE survey

Patients' perceptions on shared decision making during prescription of subcutaneous biological drug treatments for inflammatory arthritis: The RHEU‐LIFE survey

Perceived treatment satisfaction in patients with systemic rheumatic diseases treated with biologic therapies: results of a self-reported survey

Factors influencing choice of b/ts DMARDs in managing inflammatory arthritis from a patient perspective: a systematic review of global evidence and a patient-based survey from Hong Kong

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