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




Limited health literacy and limited English proficiency are widely prevalent and contribute to rheumatoid arthritis (RA) health care disparities. The RA Patient Global Assessment of Disease Activity often introduces complexity to the health care encounters of patients and research subjects with limited health literacy and limited English proficiency. Important work is being done to ensure that patient-reported outcomes are validated and appropriate for diverse and vulnerable populations.


Key points








  • Limited health literacy (LHL) and limited English proficiency (LEP) are widely prevalent and contribute to rheumatoid arthritis (RA) health care disparities.



  • The RA Patient Global Assessment of Disease Activity often introduces complexity to the health care encounters of patients and research subjects with LHL and LEP.



  • Important work is being done to ensure that patient-reported outcome measures (PROM) are validated and appropriate for diverse and vulnerable populations.






Introduction


Earlier, more aggressive, and more effective treatments of rheumatoid arthritis (RA) have made remission a realistic target and have greatly improved outcomes compared with past decades. Unfortunately, the therapeutic benefits of the biologic era have not been experienced equally by all patients. There is abundant evidence of ongoing racial and ethnic disparities in RA outcomes in both the United States and abroad ( Box 1 ).



Box 1





  • United States




    • More disability and worse global health among non-whites compared with whites



    • Higher disease activity and worse functional status in non-whites, non-anglophones, and foreign born



    • Men, non-whites, and persons of lower socioeconomic status are less likely to receive a disease modifying anti-rheumatic drug (DMARD)



    • DMARD therapy is often delayed in ethnic minorities



    • Income and ethnicity impact use of biologic therapies




  • Europe




    • Higher hospitalization rates for RA patients with lower socioeconomic status and manual labor employment



    • Worse functional status in patients from deprived socioeconomic areas



    • Negative association between disease activity and gross domestic product per capita



    • Women are less likely to achieve remission




  • Latin America




    • Low socioeconomic status is related to high disease activity in early RA




Care disparities in rheumatoid arthritis


The widely accepted “treat-to-target” paradigm of RA management guided to remission or low disease activity mandates low scores along a visual analog scale (VAS) on one patient-reported outcome (PRO), the Patient Global Assessment of Disease Activity (PtGA-VAS). PtGA-VAS scores are often discrepant with evaluator assessments of disease activity and may alone prevent patients from being classified in remission. Vulnerable RA patients (defined as elderly, members of racial/ethnic minorities, those with limited health literacy, or non-English speakers) often have difficulty completing the PtGA-VAS. These same RA patients are at the complex intersection of being at risk for health care disparities and having their providers follow guidelines to treat them to a target of low disease activity or remission.


Limited health literacy (LHL) and limited English proficiency (LEP) are variables that may, in part, explain disparities in RA care. This article introduces the reader to these concepts and then reviews the research, which links LEP and LHL to outcomes in RA. The proposed causal pathways responsible for these associations will then be covered, followed by a discussion of the challenges vulnerable populations face completing PROs using the PtGA-VAS as an example. The article concludes with strategies to improve the PtGA-VAS and reduce complexity in the health care system for all patients.




Introduction


Earlier, more aggressive, and more effective treatments of rheumatoid arthritis (RA) have made remission a realistic target and have greatly improved outcomes compared with past decades. Unfortunately, the therapeutic benefits of the biologic era have not been experienced equally by all patients. There is abundant evidence of ongoing racial and ethnic disparities in RA outcomes in both the United States and abroad ( Box 1 ).



Box 1





  • United States




    • More disability and worse global health among non-whites compared with whites



    • Higher disease activity and worse functional status in non-whites, non-anglophones, and foreign born



    • Men, non-whites, and persons of lower socioeconomic status are less likely to receive a disease modifying anti-rheumatic drug (DMARD)



    • DMARD therapy is often delayed in ethnic minorities



    • Income and ethnicity impact use of biologic therapies




  • Europe




    • Higher hospitalization rates for RA patients with lower socioeconomic status and manual labor employment



    • Worse functional status in patients from deprived socioeconomic areas



    • Negative association between disease activity and gross domestic product per capita



    • Women are less likely to achieve remission




  • Latin America




    • Low socioeconomic status is related to high disease activity in early RA




Care disparities in rheumatoid arthritis


The widely accepted “treat-to-target” paradigm of RA management guided to remission or low disease activity mandates low scores along a visual analog scale (VAS) on one patient-reported outcome (PRO), the Patient Global Assessment of Disease Activity (PtGA-VAS). PtGA-VAS scores are often discrepant with evaluator assessments of disease activity and may alone prevent patients from being classified in remission. Vulnerable RA patients (defined as elderly, members of racial/ethnic minorities, those with limited health literacy, or non-English speakers) often have difficulty completing the PtGA-VAS. These same RA patients are at the complex intersection of being at risk for health care disparities and having their providers follow guidelines to treat them to a target of low disease activity or remission.


Limited health literacy (LHL) and limited English proficiency (LEP) are variables that may, in part, explain disparities in RA care. This article introduces the reader to these concepts and then reviews the research, which links LEP and LHL to outcomes in RA. The proposed causal pathways responsible for these associations will then be covered, followed by a discussion of the challenges vulnerable populations face completing PROs using the PtGA-VAS as an example. The article concludes with strategies to improve the PtGA-VAS and reduce complexity in the health care system for all patients.




Limited English proficiency


Rheumatologists often encounter RA patients with LEP because more than 60 million US residents speak a language other English at home. LEP is defined based on responses to the US Census and American Community Survey question, “How well do you speak English?” ( Box 2 ). Persons that report “very well” are considered English proficient. Persons that report “well,” “not well,” or “not at all” are considered to have LEP. Twenty-five million Americans were self-classified as LEP in the 2011 American Community Survey.



Box 2




  • a.

    Does this person speak a language other than English at home?


  • b.

    What is that language?



  • _______________________________


  • c.

    How well does this person speak English?




    • Very well



    • Well



    • Not well



    • Not well at all




Questions on language from the 2011 American Community Survey

From Ryan C. Language use in the United States: 2011 American community survey reports. United States Cesus Bureau and Department of Commerce; 2013. Ref Type: Pamphlet.


Some of the challenges caring for patients with LEP may be avoidable through the use of professional interpreters as recommended by the Institute of Medicine as a quality and patient safety imperative. Unfortunately, providers often eschew using professional interpreters and opt to “get by” rather than “get help” when caring for patients with LEP. A recent retrospective review in a well-resourced academic hospital showed that 66% of LEP patients never had documentation of interpreter use during their hospital stay.


LEP has been shown to be a risk factor for suboptimal care in a myriad of nonrheumatologic diseases by disrupting the entire continuum of care. Accessing care is the first hurdle facing LEP patients. Insured patients with LEP make less use of preventive services and experiences suboptimal primary care access compared with patients without language barriers. LEP patients are less likely to understand the diagnosis and treatment of their medical condition. LEP patients are also less adherent to medications and less satisfied with the medical care they receive. The impact of LEP has not been widely studied in RA, but there is emerging evidence to support plausible pathways by which it may promote deleterious RA outcomes ( Box 3 ).



Box 3





  • Suboptimal shared decision-making



  • Poor knowledge about Methotrexate



Studies regarding associations of limited English proficiency in rheumatoid arthritis patients




Limited health literacy


Health literacy (HL) has been defined as “the degree to which individuals can obtain, process, and understand the basic health information and services they need to make appropriate health decisions.” A more nuanced conceptualization of HL not only focuses on the patient’s skills but also takes into account the demand side of the equation and the complexity of the health care system. Much like LEP, LHL is widely prevalent. Nearly one-half of the adults in the United States have limited HL, and low HL is more prevalent among the elderly and ethnic minorities.


HL status is assessed in research studies using performance-based and self-reported measures ( Box 4 ). The Short Test of Functional Health in Adults (s-TOFHLA) is a 7-minute, 14-point-font cloze procedure, whereby words are deleted from 2 passages about medical subjects and respondents attempt to select the correct missing word. Performance-based testing of patients in the clinical setting is not recommended because of the possibility of shaming or embarrassing patients with LHL. There are several versions of Single-Item Literacy Screening (SILS) questions, which ask patients to self-rate their HL. Responses of sometimes, often, or always to the first SILS question in Box 4 are classified as LHL. Responses of not at all, a little bit, or somewhat to the second SILS question in Box 4 are classified as LHL. Most assessments of HL are limited to functional literacy and numeracy, but do not assess more complex aspects of HL, such as cognition, social skills, verbal fluency, proactive oral communication, and aural literacy.



Box 4





  • Short Test of Functional Health in Adults (S-TOFHLA)





  • Single-Item Literacy Screening (SILS) questions



  • How often do you need to have someone help you when you read instructions, pamphlets, or other written material from your doctor or pharmacy?




    • Never



    • Rarely



    • Sometimes



    • Often



    • Always




  • How confident are you filling out medical forms by yourself?




    • Not at all



    • A little bit



    • Somewhat



    • Quite a bit



    • Extremely




Sample questions from Health Literacy Assessment Instruments

Adapted from Nurss JR, Parker R, Williams M, et al. TOFHLA: Test of functional health literacy in adults. Snow Camp, NC: Peppercorn Books, 2001; with permission; and Morris NS, MacLean CD, Chew LD, et al. The single item literacy screener: evaluation of a brief instrument to identify limited reading ability. BMC Fam Pract 2006;7:21.


The emerging field of HL-related rheumatology research has clarified the HL skills of patients, the high literacy burden of written patient educational material, and the negative outcomes associated with LHL. LHL has been associated with poor health outcomes in several RA studies ( Box 5 ). Of note, research at Denver Health and with the National Data Bank for Rheumatic Diseases has shown a strong relationship between LHL as assessed by the SILS and RA functional status measured by the Multidimensional Health Assessment questionnaire and Health Assessment Questionnaire, respectively. The latter study included more than 6,000 RA subjects and demonstrated that LHL was more strongly associated with poor functional status than prednisone use, smoking history, and biologic agent use. This relationship persisted even after modeling educational attainment.



Box 5





  • Worse functional status



  • Increased pain and physical limitations



Outcomes and associations of limited health literacy in rheumatoid arthritis patients




Causal pathways linking limited English proficiency and limited health literacy with outcomes


There are several causal pathways by which LHL might influence patient outcomes: access and utilization of health care, patient-provider interaction, and self-care ( Fig. 1 ). The importance of accessing care quickly and adroitly navigating the health care system is of great importance in RA given the wealth of data regarding the importance of timely diagnosis and early aggressive treatment of RA. Patients with LHL have been shown to delay seeking care and have difficulty with access in nonarthritic diseases. Delays in obtaining RA care may explain the research findings, showing preserved disease activity scores, but worse functional status presumably stemming from disease damage accumulated early in the disease course. The RA research linking LHL with the causal pathways of adverse health outcomes is illustrated in Box 6 .




Fig. 1


Causal pathways linking LEP and limited HL with outcomes.

( From Paasche-Orlow MK, Wolf MS. The causal pathways linking health literacy to health outcomes. Am J Health Behav 2007;31(Suppl 1):S21; with permission.)


Box 6





  • Suboptimal shared decision-making



  • Poor understanding of written prescribing instructions regarding rheumatology medication use



  • Less likely to access their electronic medical records via a Web portal



  • Less knowledge about rheumatology medications



  • Lower medication adherence



  • Higher risk perception and less willingness to take a DMARD



  • Discrepancy between patient and provider global assessments of RA activity



  • Increased anxiety



  • Self-reported difficulty completing forms



  • Self-reported difficulty understanding written instructions from doctors and pharmacists



Support of limited health literacy’s causal pathways in rheumatoid arthritis


System factors include the complexity of the process of receiving care and how this can influence the access and utilization of health care. Patients with LHL have difficulty completing forms and paperwork. The challenges that PROs present will be covered in great detail in the next section. At one US urban rheumatology clinic, it has been shown that nearly 1 in 3 patients responded to one of the SILS questions, indicating that they do not feel confident filling out medical forms without help.


Poor communication between providers and patients is another mechanism by which LHL likely impacts RA outcomes. Patients with LHL and RA may be less prepared for visits than patients with adequate HL, given research documenting that LHL RA patients are less likely to log-on and view the electronic medical records via a Web portal. Limited verbal fluency and proactive oral communication have been demonstrated in other chronic diseases. LHL RA patients’ increased anxiety and lower knowledge about RA and its treatment also interfered with optimal patient-provider interaction. In addition, patients with LHL and RA have higher risk perception and less willingness to take a disease-modifying antirheumatic drug (DMARD) than patients with adequate HL. LHL is strongly associated with suboptimal shared decision-making in patients with RA. The author’s research at Denver Health has demonstrated that LHL is associated with the discrepancy between patient and provider global assessments of RA activity.


Self-care is another causal pathway by which LHL can influence adverse health outcomes. Self-management requires both knowledge and the capacity to carry out the plan decided on with the provider. RA patients with LHL have poor understanding of written prescribing instructions regarding rheumatology medication use. LHL as measured by one of the SILS questions has also been associated with lower medication adherence in RA. Little is known in RA regarding the role of problem-solving skills and self-efficacy in mediating poor outcomes in RA patients.

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Sep 28, 2017 | Posted by in RHEUMATOLOGY | Comments Off on 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
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