The Challenge and Opportunity of Capturing Patient Reported Measures of Rheumatoid Arthritis Disease Activity in Vulnerable Populations with Limited Health Literacy and Limited English Proficiency

2016 ◽  
Vol 42 (2) ◽  
pp. 347-362 ◽  
Author(s):  
Joel M. Hirsh
Keyword(s):  
Rheumatoid Arthritis ◽  
Health Literacy ◽  
Vulnerable Populations ◽  
Limited English Proficiency ◽  
Limited Health Literacy ◽  
Rheumatoid Arthritis Disease Activity ◽  
Rheumatoid Arthritis Disease ◽  
Patient Reported ◽  
Limited Health ◽  
Patient Reported Measures

scholarly journals AB0300 LUPUS DISEASE ACTIVITY CORRELATES WITH QUALITY OF LIFE BUT NOT WITH HEALTH LITERACY STATUS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1176.2-1176
Author(s):  
E. Eraslan ◽  
R. Bilici Salman ◽  
H. Satiş ◽  
A. Avanoglu Guler ◽  
H. Karadeniz ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Literacy ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Patient Reported Outcome ◽  
The Body ◽  
Limited Health Literacy ◽  
Patient Reported ◽  
Limited Health

Background:Systemic lupus erythematosus (SLE) is a chronic autoimmune disease of unknown etiology that can affect any organ of the body. SLE is associated with adverse effects on both health and non-health-related quality of life (HRQOL and non-HRQOL). Lupus PRO is a patient reported outcome measure that has been validated in many languages. It has 44 items that cover both HRQOL and non-HRQOL (1). Health literacy is defined as the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions. Multiple studies indicate that people with limited health literacy have worse health status and higher rates of hospitalization (2).Objectives:We aimed to evaluate the relationship between the LLDAS (Lupus Low Disease Activity State) criteria and the Lupus PRO test, as well as the health literacy status of lupus patients.Methods:83 SLE patients (94% women) were included in the study. We performed Lupus PRO and the European Health Literacy Survey tests during the routine follow-up visits of lupus patients to our rheumatology outpatient clinic and admissions to rheumatology inpatient clinic. Available clinical data on medical records were obtained, physician global assessments (PGA) were recorded by the attending physician.Results:LLDAS criteria strongly and inversely correlated with the total score, as well as the mood subunit of the Lupus PRO. Similarly, it also significantly inversely correlated with the body appearence and goals subunits. Health literacy status of the patients did not correlate with their LLDAS scores, ie their disease activities.Conclusion:Our results suggest that lupus disease activity, assessed by LLDAS criteria, significantly correlates with measures of quality of life, spesicifically Lupus PRO test, but not with health literacy status. Further studies are needed to evaluate if health literacy is related with damage, hospitalization or mortality associated with lupus.References:[1]Jolly M, Pickard AS, Block JA, Kumar RB, Mikolaitis RA, Wilke CT, et al., editors. Disease-specific patient reported outcome tools for systemic lupus erythematosus. Seminars in arthritis and rheumatism; 2012: Elsevier.[2]Paasche-Orlow MK, Parker RM, Gazmararian JA, Nielsen-Bohlman LT, Rudd RR. The prevalence of limited health literacy. Journal of general internal medicine. 2005;20(2):175-84.Disclosure of Interests:None declared

Limited Health Literacy Is Associated With Worse Patient-Reported Outcomes in Inflammatory Bowel Disease

2018 ◽  
Vol 25 (1) ◽  
pp. 204-212 ◽  
Author(s):  
Lauren K Tormey ◽  
Jason Reich ◽  
Yu Sarah Chen ◽  
Arush Singh ◽  
Zachary Lipkin-Moore ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Health Literacy ◽  
Bowel Disease ◽  
Patient Reported Outcomes ◽  
Limited Health Literacy ◽  
Patient Reported ◽  
Inflammatory Bowel ◽  
Limited Health

Health Literacy Predicts Discrepancies Between Traditional Written Patient Assessments and Verbally Administered Assessments in Rheumatoid Arthritis

2013 ◽  
Vol 41 (2) ◽  
pp. 256-264 ◽  
Author(s):  
Joel M. Hirsh ◽  
Lisa A. Davis ◽  
Itziar Quinzanos ◽  
Angela Keniston ◽  
Liron Caplan
Keyword(s):  
Rheumatoid Arthritis ◽  
Health Literacy ◽  
Disease Activity ◽  
Excellent Correlation ◽  
Multivariate Logistic Regression ◽  
Rheumatology Clinic ◽  
Limited Health Literacy ◽  
Patient Assessments ◽  
Limited Health ◽  
Numeric Response

Objective.Patient assessments of disease activity (PtGA) and general health (GH) measured by visual analog scale (VAS) are widely used in rheumatoid arthritis (RA) clinical practice and research. These require comprehension of the question’s wording and translation of disease activity onto a written VAS, which is problematic for patients with limited health literacy (HL) or difficulty completing forms. This study’s objective was to validate verbally administered versions of patient assessments and identify factors that might explain discrepancies between verbal and written measures.Methods.We enrolled patients with RA at the Denver Health rheumatology clinic (n = 300). Subjects were randomized to complete the traditional written PtGA and GH and one of the verbal assessments. Subjects provided a verbal numeric response after reading the question, having the question read to them in person, or hearing the question over the phone. Spearman and Lin correlations comparing written and verbal assessments were determined. Multivariate logistic regression was performed to explain any discrepancies.Results.The instruments administered verbally in-person showed good, but not excellent, correlation with traditional written VAS forms (Spearman coefficients 0.59 to 0.70; p < 0.001 for all correlations). Twenty-three percent of subjects were unable to complete 1 of the written VAS assessments without assistance. HL predicted missing written data and discrepancies between verbal and written assessments (p < 0.05 for all correlations).Conclusion.Providers should use verbal versions of PtGA and GH with caution while caring for patients unable to complete traditional written version. Limited HL is widely prevalent and a barrier to obtaining patient-oriented data.

scholarly journals Limited Health Literacy and Patient Confusion About Rheumatoid Arthritis Patient Global Assessments and Model Disease States

2019 ◽  
Vol 71 (5) ◽  
pp. 611-619 ◽  
Author(s):  
Joel Hirsh ◽  
Patrick Wood ◽  
Angela Keniston ◽  
Mandy Peng ◽  
Sai Ramaswami ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Rheumatoid Arthritis Patient ◽  
Health Literacy ◽  
Limited Health Literacy ◽  
Disease States ◽  
Limited Health

scholarly journals English Language Proficiency, Health Literacy, and Trust in Physician Are Associated with Shared Decision Making in Rheumatoid Arthritis

2014 ◽  
Vol 41 (7) ◽  
pp. 1290-1297 ◽  
Author(s):  
Jennifer L. Barton ◽  
Laura Trupin ◽  
Chris Tonner ◽  
John Imboden ◽  
Patricia Katz ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Decision Making ◽  
Health Literacy ◽  
Shared Decision Making ◽  
Language Proficiency ◽  
English Language ◽  
English Language Proficiency ◽  
Shared Decision ◽  
Limited Health Literacy ◽  
Limited Health

Objective.Treat-to-target guidelines promote shared decision making (SDM) in rheumatoid arthritis (RA). Also, because of high cost and potential toxicity of therapies, SDM is central to patient safety. Our objective was to examine patterns of perceived communication around decision making in 2 cohorts of adults with RA.Methods.Data were derived from patients enrolled in 1 of 2 longitudinal, observational cohorts [University of California, San Francisco (UCSF) RA Cohort and RA Panel Cohort]. Subjects completed a telephone interview in their preferred language that included a measure of patient-provider communication, including items about decision making. Measures of trust in physician, education, and language proficiency were also asked. Logistic regression was performed to identify correlates of suboptimal SDM communication. Analyses were performed on each sample separately.Results.Of 509 patients across 2 cohorts, 30% and 32% reported suboptimal SDM communication. Low trust in physician was independently associated with suboptimal SDM communication in both cohorts. Older age and limited English proficiency were independently associated with suboptimal SDM in the UCSF RA Cohort, as was limited health literacy in the RA Panel Cohort.Conclusion.This study of over 500 adults with RA from 2 demographically distinct cohorts found that nearly one-third of subjects report suboptimal SDM communication with their clinicians, regardless of cohort. Lower trust in physician was independently associated with suboptimal SDM communication in both cohorts, as was limited English language proficiency and older age in the UCSF RA Cohort and limited health literacy in the RA Panel Cohort. These findings underscore the need to examine the influence of SDM on health outcomes in RA.

Patient-reported health literacy and numeracy among new patients seeking consultation at a comprehensive cancer center.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 7038-7038
Author(s):  
Nadine Jackson McCleary ◽  
Jessica Cleveland ◽  
Sunyi Zhang ◽  
Eva M. Lepisto ◽  
Sherry Lee ◽  
...  
Keyword(s):  
Decision Making ◽  
Health Literacy ◽  
Comprehensive Cancer Center ◽  
Cancer Center ◽  
Medical Statistics ◽  
Limited Health Literacy ◽  
Patient Reported ◽  
Limited Health ◽  
Medical Forms ◽  
Single Question

7038 Background: Health literacy and numeracy are essential for patients to make informed cancer treatment decisions. Oncologists do not typically evaluate literacy and numeracy and vary in their ability to adapt health discussions to meet patients’ needs. Systematic ascertainment of literacy and numeracy may provide oncologists with useful information to help guide initial oncology consultations. Methods: We deploy an electronic new patient intake questionnaire (NPIQ) that includes health literacy and numeracy, basic demographics and cancer risk screening. Patients are considered to have limited health literacy and/or numeracy if they respond with either “somewhat”, “a little bit” or “not at all” to a single question: “How confident are you filling out medical forms?” or “How confident are you in understanding medical statistics?” respectively. Results: Between January 2018 and August 2019, 8418 (24.6%) of patients presenting for a new patient consultation responded to the NPIQ. Among respondents with non-missing data, limited health literacy was reported by 19.4% respondents with 13.9% reporting “not at all” and 33.1% reporting “not at all” or only “a little bit” of confidence completing medical forms. Limited health numeracy was reported by 33.2% respondents with 9.1% reporting “not at all”. Nearly 20% of respondents reported both limited health literacy and numeracy. Patients reporting lack of confidence completing medical forms or understanding medical statistics were older (20.3%, 30.7% ³ 70 years old), male (20.2%, 30.1%), and non-white (21.3%, 32.1%). Conclusions: A substantial proportion of cancer patients report lack of confidence in their ability to complete medical forms or understand medical statistics, potentially limiting the ability to actively engage in shared decision-making. Prospective identification of these social determinants of health prior to consultations may provide oncologists with information necessary to tailor health discussions and to provide materials that promote understanding and informed decision-making. [Table: see text]

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

2020 ◽  
Vol 73 (1) ◽  
pp. 110-119 ◽  
Author(s):  
Patricia Katz ◽  
Maria Dall’Era ◽  
Laura Trupin ◽  
Stephanie Rush ◽  
Louise B. Murphy ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Health Literacy ◽  
Lupus Erythematosus ◽  
Patient Reported Outcomes ◽  
Systemic Lupus ◽  
Limited Health Literacy ◽  
Patient Reported ◽  
Limited Health
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