Adherence to treatment in Behçet's syndrome: a multi-faceted issue

Pirri, Salvatore; Marinello, Diana; Lorenzoni, Valentina; Andreozzi, Gianni; Bazzani, Andrea; Bianco, Alessandra; Turchetti, Giuseppe; Mosca, Marta; Talarico, Rosaria

doi:10.55563/clinexprheumatol/1lx7a5

Cited by 3 publications

(2 citation statements)

References 10 publications

(10 reference statements)

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“…We calculated a BMQn-c differential of 0.9 ± 1.1 indicating that, when dealing with medications prescribed for BD, the registry participants prioritized necessity belief over concerns to a limited extent. This would conceivably result in a weaker therapeutic adherence, which is in line with further data on therapeutic adherence for patients with BD in the literature (23,24). Respondents with a more severe disease course characterized by major organ involvement had higher necessity belief than those with minor disease manifestations.…”

Section: Discussionsupporting

confidence: 78%

A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project

Gaggiano¹,

Bianco²,

Sota³

et al. 2023

Front. Med.

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IntroductionThis paper describes the creation and preliminary results of a patient-driven registry for the collection of patient-reported outcomes (PROs) and patient-reported experiences (PREs) in Behçet’s disease (BD).MethodsThe project was coordinated by the University of Siena and the Italian patient advocacy organization SIMBA (Associazione Italiana Sindrome e Malattia di Behçet), in the context of the AIDA (AutoInflammatory Diseases Alliance) Network programme. Quality of life, fatigue, socioeconomic impact of the disease and therapeutic adherence were selected as core domains to include in the registry.ResultsRespondents were reached via SIMBA communication channels in 167 cases (83.5%) and the AIDA Network affiliated clinical centers in 33 cases (16.5%). The median value of the Behçet’s Disease Quality of Life (BDQoL) score was 14 (IQR 11, range 0–30), indicating a medium quality of life, and the median Global Fatigue Index (GFI) was 38.7 (IQR 10.9, range 1–50), expressing a significant level of fatigue. The mean Beliefs about Medicines Questionnaire (BMQ) necessity-concern differential was 0.9 ± 1.1 (range – 1.8–4), showing that the registry participants prioritized necessity belief over concerns to a limited extent. As for the socioeconomic impact of BD, in 104 out of 187 cases (55.6%), patients had to pay from their own pocket for medical exams required to reach the diagnosis. The low family socioeconomic status (p < 0.001), the presence of any major organ involvement (p < 0.031), the presence of gastro-intestinal (p < 0.001), neurological (p = 0.012) and musculoskeletal (p = 0.022) symptoms, recurrent fever (p = 0.002), and headache (p < 0.001) were associated to a higher number of accesses to the healthcare system. Multiple linear regression showed that the BDQoL score could significantly predict the global socioeconomic impact of BD (F = 14.519, OR 1.162 [CI 0.557–1.766], p < 0.001).DiscussionPreliminary results from the AIDA for Patients BD registry were consistent with data available in the literature, confirming that PROs and PREs could be easily provided by the patient remotely to integrate physician-driven registries with complementary and reliable information.

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Section: Discussionsupporting

confidence: 78%

A patient-driven registry on Behçet’s disease: the AIDA for patients pilot project

Gaggiano¹,

Bianco²,

Sota³

et al. 2023

Front. Med.

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“…On this regard, it is crucial that patients and caregivers are actively involved in the process of implementation of existing tools thanks to an appropriate co-design approach ensuring that all the dimensions that have an impact on their life are measured and quantified. In this regard, the role of caregivers and their QoL should also be considered, considering also the burden caused by BD on their life and promoting their participation in the codesign process of QoL tools (71,72).…”

Section: Discussionmentioning

confidence: 99%

Assessing quality of life in Behçet's disease: a systematic review

Mastrolia

Marinello

Cianni

et al. 2022

Clinical and Experimental Rheumatology

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Objective. The assessment of quality of life (QoL) in Behçet's disease (BD) patients has been a surrogate of disease outcomes, but a wider impact on the patient's lifestyle has not been considered. This systematic review aims to provide an overview of the existing tools specifically adopted to explore the QoL in BD patients. Methods. A systematic literature review was conducted using 2 electronic databases, according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. A combination of BD and QoLrelated search terms were used. All articles were screened by 3 independent reviewers for title, abstract and full text level. Studies investigating QoL in BD patients were included. Results. 64 papers of 497 records were retained. Data about 7,449 patients with a BD diagnosis and QoL evaluation were collected. 47 different tools to evaluate QoL were detected. The mean number of tools adopted in each study was 2.14±1.34. General QoL and psychological and social impact were investigated in 68.75% and 54.69% respectively. The correlation with disease activity was investigated in 71.86%. Conclusion. The assessment of QoL in BD patients may provide a fundamental measurement for health to evaluate the outcome of interventions for BD patients. The adoption of a single validated QoL tool, developed including the BD patient's perspective, may provide an accurate and effective assessment, ensure the comparison within different cohorts, and set standardised values to define QoL level in BD patients.

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