Impact of Limited Health Literacy on Patient‐Reported Outcomes in Systemic Lupus Erythematosus

Katz, Patricia P.; Dall’Era, Maria; Trupin, Laura; Rush, Stephanie; Murphy, Louise B.; Lanata, Cristina; Criswell, Lindsey A.; Yazdany, Jinoos

doi:10.1002/acr.24361

Cited by 30 publications

(31 citation statements)

References 33 publications

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“…Also, this is the first study which used the HLVa questionnaire to assess vaccine literacy functional and interactive-critical skills and its associated demographic factors in these patients. It is important to underline that previous studies conducted in patients with autoimmune diseases have used tools to assess general health literacy but not exactly to evaluate vaccine literacy (Katz et al, 2021;Maheswaranathan et al, 2020;Wu et al, 2020). Future researchers should consider using Online Photovoice (OPV) to further research this topic.…”

Section: Discussionmentioning

confidence: 99%

COVID-19 vaccine literacy in patients with systemic autoimmune diseases

et al. 2022

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COVID-19 related infodemic is a threat to the successful COVID-19 vaccination campaigns. This might be especially apparent for patients with autoimmune diseases since there is no data available about the balance between benefits and risks of the newly developed COVID-19 vaccines in this population. We aim (i) to evaluate vaccine literacy skills in a population of patients with systemic autoimmune diseases, (ii) to examine the potential associations between vaccine literacy skills and sociodemographic characteristics and (iii) to analyze the relationships between attitudes, perceptions and beliefs about current vaccinations and vaccine literacy skills and sociodemographic characteristics. A cross-sectional study was conducted among 319 patients with systemic autoimmune diseases (92% females; 49.5% of patients in the 31–50 years age category). The vaccine literacy levels were determined using the Health Literacy about Vaccination in adulthood in Italian (HLVa-IT). Sociodemographic characteristics including gender, age, country and area of residence, civil status, socioeconomic status, educational attainment and occupational status were evaluated. The mean vaccine literacy functional and interactive-critical scores were 2.59 ± 0.74 and 3.07 ± 0.60, respectively. The vaccine literacy interactive-critical score was higher in females than in males (p = 0.048). Interactive-critical scores were associated with the area of residence, civil status and socioeconomic status, with the highest score in urban area of ≥ 100.000 inhabitants (p = 0.045), in widow patients (p = 0.023) and in patients with high socioeconomic status (p = 0.018). Significant differences were observed between the different education levels, for both the functional and the interactive-critical scores (p = 0.002 and p < 0.001, respectively), the highest score was observed in patients who completed a university degree. The level of vaccine literacy for functional and interactive-critical scales were medium. Area of residence, civil status and socioeconomic status represented determinants of vaccine literacy interactive-critical scale. Educational attainment also contributes to vaccine literacy functional scale. Insight into these factors is required to ensure an optimal vaccine literacy level in patients with autoimmune diseases.

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Section: Discussionmentioning

confidence: 99%

COVID-19 vaccine literacy in patients with systemic autoimmune diseases

et al. 2022

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“…One recent study found lupus patients with limited health literacy had worse patient-reported outcomes. 13 A study from 1997 explored the prevalence of low health literacy among a small cohort of 94 SLE patients and found about half (48%) had low health literacy. 14 Another study of 108 SLE patients found no association between health literacy with hydroxychloroquine non-adherence.…”

Section: Discussionmentioning

confidence: 99%

Low health numeracy is associated with higher disease activity in systemic lupus erythematosus

Maheswaranathan

Eudy

Bailey

et al. 2020

Lupus

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Objective Evidence suggests low health literacy is prevalent in the United States and associated with worse clinical outcomes, yet few studies have investigated health literacy in systemic lupus erythematosus (SLE). The objective of this study was to determine the prevalence of low health literacy and numeracy in lupus patients and to examine its association with disease characteristics. Methods Patients with SLE were recruited from an academic center clinic. Participants completed in-person assessments of health literacy (Rapid Estimate of Adult Literacy in Medicine, REALM) and numeracy (Numeracy Understanding in Medicine Instrument Shortened Version, S-NUMi). Clinical disease activity measures were obtained, including urine protein to creatinine ratio (UPC), Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) and physician global assessment (PhGA) scores. Results Ninety-five SLE patients participated in the study; 13% had low health literacy and 73% had limited health numeracy. Patients with lower health literacy and numeracy were more likely to be Black, have Medicaid insurance, and earn income <$50 K annually. In linear regression models, patients with limited health numeracy had, on average, PhGA scores 0.31 points higher (95% CI: 0.02, 0.60) than patients with adequate numeracy, after adjusting for race and age. No clinical outcomes were associated with health literacy. Conclusion In this exploratory study, we found SLE patients with low numeracy had higher disease activity. Our findings indicate that lower health literacy and numeracy are more common among Black and socioeconomically disadvantaged patients. Additional research will be needed to investigate the impact of health literacy on other outcomes and racial disparities in SLE.

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“…Prior research on rare multisystemic, autoimmune connective tissue disease such as systemic sclerosis (SSc) and systemic lupus erythematosus (SLE) has primarily focused on patient general health literacy and barriers to ICT use. 7 8 There is a paucity of evidence on eHealth literacy among rheumatologic providers. In regard to SSc/SLE eHealth support, web-based resources are often of low quality, have inadequate readability and limited functionality.…”

Section: Introductionmentioning

confidence: 99%

Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study

et al. 2021

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ObjectivesWe engaged patients with systemic sclerosis (SSc) and healthcare professionals to assess electronic health (eHealth) literacy and needs relating to web-based support using internet-based information and communication technologies (ICT).MethodsWe employed an explanatory sequential mixed methods design. First, we conducted a cross-sectional survey in patients (n=101) and professionals (n=47). Next, we conducted three focus groups with patients, family members and professionals (n=17).ResultsOf patients, 89.1% used ICT at least weekly for private communication. Patients reported relatively high comprehension of eHealth information (x¯ =6.7, 95% CI: 6.2 to 7.3, range 1–10), yet were less confident evaluating information reliability (x¯ =5.8, 95% CI: 5.1 to 6.4) and finding eHealth apps (x¯ =4.8, 95% CI: 4.2 to 5.4). Patients and professionals reported little experience with web-based self-management support. Focus groups revealed ‘considering non-ICT-accessible groups’ and ‘fitting patients’ and professionals’ technology’ as crucial for acceptability. In relation to understanding/appraising eHealth, participants highlighted that general SSc information is not tailored to individual’s disease course. Recommendations included ‘providing timely, understandable and safe information’ and ‘empowering end-users in ICT and health decision-making skills’. Professionals expressed concerns about lacking resources. Patients were concerned about data security and person-centredness. Key eHealth drivers included ‘addressing end-user perceptions’ and ‘putting people at the centre of technology’.ConclusionsPatients and professionals need education/training to support uptake of eHealth resources. Key elements include guiding patients to timely/reliable information and using eHealth to optimise patient–provider communication. Design that is responsive to end-users’ needs and considers individuals with limited eHealth literacy and/or ICT access appears to be critical for acceptability.

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Impact of Limited Health Literacy on Patient‐Reported Outcomes in Systemic Lupus Erythematosus

Cited by 30 publications

References 33 publications

COVID-19 vaccine literacy in patients with systemic autoimmune diseases

COVID-19 vaccine literacy in patients with systemic autoimmune diseases

Low health numeracy is associated with higher disease activity in systemic lupus erythematosus

Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study

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