Abstract
Purpose of Review
Inadequate health literacy is common among American adults, but little is known about the impact of health literacy in rheumatic diseases. The purpose of this article is to review studies investigating health literacy and its association with clinical outcomes in systemic lupus erythematosus (SLE).
Recent Findings
Several validated health literacy measures have been examined in SLE patients. Low health literacy is associated with worse patient-reported outcomes and lower numeracy with higher disease activity. Two studies found no association of low health literacy with medication adherence. One randomized controlled trial tested a medication decision aid among patients with low health literacy.
Summary
We found a paucity of studies exploring health literacy in SLE. Low health literacy is associated with worse patient-reported outcomes and limited numeracy with higher disease activity in SLE. Further studies are needed exploring the impact of low health literacy on clinical outcomes and the effectiveness of literacy-sensitive interventions.
Similar content being viewed by others
References
Papers of particular interest, published recently, have been highlighted as:•• Of major importance
Institute of Medicine Committee on Health L. In: Nielsen-Bohlman L, Panzer AM, Kindig DA, editors. Health literacy: a prescription to end confusion. Washington (DC): National Academies Press (US); 2004.
Rebeiro PF, McPherson TD, Goggins KM, Turner M, Bebawy SS, Rogers WB, et al. Health literacy and demographic disparities in HIV care continuum outcomes. AIDS Behav. 2018;22(8):2604–14.
Tormey LK, Reich J, Chen YS, Singh A, Lipkin-Moore Z, Yu A, et al. Limited health literacy is associated with worse patient-reported outcomes in inflammatory bowel disease. Inflamm Bowel Dis. 2019;25(1):204–12.
Bailey SC, Fang G, Annis IE, O’Conor R, Paasche-Orlow MK, Wolf MS. Health literacy and 30-day hospital readmission after acute myocardial infarction. BMJ Open. 2015;5(6):e006975.
Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med. 2011;155(2):97–107.
Fabbri M, Yost K, Finney Rutten LJ, Manemann SM, Boyd CM, Jensen D, et al. Health literacy and outcomes in patients with heart failure: a prospective community study. Mayo Clin Proc. 2018;93(1):9–15.
Kalichman SC, Pope H, White D, Cherry C, Amaral CM, Swetzes C, et al. Association between health literacy and HIV treatment adherence: further evidence from objectively measured medication adherence. J Int Assoc Physicians AIDS Care (Chic). 2008;7(6):317–23.
Morrison AK, Schapira MM, Gorelick MH, Hoffmann RG, Brousseau DC. Low caregiver health literacy is associated with higher pediatric emergency department use and nonurgent visits. Acad Pediatr. 2014;14(3):309–14.
Vernon JA, Trujillo A, Rosenbaum S, DeBuono B. Low health literacy: implications for national health policy. Washington, DC: George Washington University School of Public Health and Health Services; 2007.
Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J. Development of a brief test to measure functional health literacy. Patient Educ Couns. 1999;38(1):33–42.
Bass PF 3rd, Wilson JF, Griffith CH. A shortened instrument for literacy screening. J Gen Intern Med. 2003;18(12):1036–8.
Chew LD, Bradley KA, Boyko EJ. Brief questions to identify patients with inadequate health literacy. Fam Med. 2004;36(8):588–94.
Davis TC, Crouch MA, Long SW, Jackson RH, Bates P, George RB, et al. Rapid assessment of literacy levels of adult primary care patients. Fam Med. 1991;23(6):433–5.
Lee SY, Stucky BD, Lee JY, Rozier RG, Bender DE. Short Assessment of Health Literacy-Spanish and English: a comparable test of health literacy for Spanish and English speakers. Health Serv Res. 2010;45(4):1105–20.
Weiss BD, Mays MZ, Martz W, Castro KM, DeWalt DA, Pignone MP, et al. Quick assessment of literacy in primary care: the newest vital sign. Ann Fam Med. 2005;3(6):514–22.
Elbashir M, Awaisu A, El Hajj MS, Rainkie DC. Measurement of health literacy in patients with cardiovascular diseases: a systematic review. Res Social Adm Pharm. 2019;15(12):1395–405.
Altin SV, Finke I, Kautz-Freimuth S, Stock S. The evolution of health literacy assessment tools: a systematic review. BMC Public Health. 2014;14:1207.
Duell P, Wright D, Renzaho AM, Bhattacharya D. Optimal health literacy measurement for the clinical setting: a systematic review. Patient Educ Couns. 2015;98(11):1295–307.
Baker DW. The meaning and the measure of health literacy. J Gen Intern Med. 2006;21(8):878–83.
Haun JN, Valerio MA, McCormack LA, Sørensen K, Paasche-Orlow MK. Health literacy measurement: an inventory and descriptive summary of 51 instruments. J Health Commun. 2014;19(Suppl 2):302–33.
Bombardier C, Gladman DD, Urowitz MB, Caron D, Chang CH. Derivation of the SLEDAI. A disease activity index for lupus patients. The Committee on Prognosis Studies in SLE. Arthritis Rheum. 1992;35(6):630–40.
Hawker G, Gabriel S, Bombardier C, Goldsmith C, Caron D, Gladman D. A reliability study of SLEDAI: a disease activity index for systemic lupus erythematosus. J Rheumatol. 1993;20(4):657–60.
Hearth-Holmes M, Murphy PW, Davis TC, Nandy I, Elder CG, Broadwell LH, et al. Literacy in patients with a chronic disease: systemic lupus erythematosus and the reading level of patient education materials. J Rheumatol. 1997;24(12):2335–9.
•• Singh JA, Fraenkel L, Green C, Alarcon GS, Barton JL, Saag KG, et al. Individualized decision aid for diverse women with lupus nephritis (IDEA-WON): a randomized controlled trial. PLoS Med. 2019;16(5):e1002800. This study is a randomized controlled trial of a health literacy informed decision aid that has been evaluated in SLE.
Galesic M, Garcia-Retamero R. Graph literacy: a cross-cultural comparison. Med Decis Mak. 2011;31(3):444–57.
Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM. Measuring numeracy without a math test: development of the Subjective Numeracy Scale. Med Decis Mak. 2007;27(5):672–80.
Flower C, Hambleton I, Campbell M. The effect of psychosocial and neuropsychiatric factors on medication adherence in a cohort of women with systemic lupus erythematosus. J Clin Rheumatol. 2016;22(8):411–7.
Arozullah AM, Yarnold PR, Bennett CL, Soltysik RC, Wolf MS, Ferreira RM, et al. Development and validation of a short-form, rapid estimate of adult literacy in medicine. Med Care. 2007;45(11):1026–33.
Morisky DE, Green LW, Levine DM. Concurrent and predictive validity of a self-reported measure of medication adherence. Med Care. 1986;24(1):67–74.
Geraldino-Pardilla L, Perel-Winkler A, Miceli J, Neville K, Danias G, Nguyen S, et al. Association between hydroxychloroquine levels and disease activity in a predominantly Hispanic systemic lupus erythematosus cohort. Lupus. 2019;28(7):862–7.
Durcan L, Clarke WA, Magder LS, Petri M. Hydroxychloroquine blood levels in systemic lupus erythematosus: clarifying dosing controversies and improving adherence. J Rheumatol. 2015;42(11):2092–7.
•• Katz P, Dall’Era M, Trupin L, Rush S, Murphy LB, Lanata C, et al. The impact of limited health literacy on patient-reported outcomes in systemic lupus erythematosus. Arthritis Care Res (Hoboken). 2020. https://doi.org/10.1002/acr.24361. This work demonstrated the association of limited health literacy with worse patient reported outcomes in SLE.
Hirsh J, Wood P, Keniston A, Peng M, Ramaswami S, Caplan L, et al. Limited health literacy and patient confusion about rheumatoid arthritis patient global assessments and model disease states. Arthritis Care Res (Hoboken). 2019;71(5):611–9.
Hirsh JM, Boyle DJ, Collier DH, Oxenfeld AJ, Caplan L. Health literacy predicts the discrepancy between patient and provider global assessments of rheumatoid arthritis activity at a public urban rheumatology clinic. J Rheumatol. 2010;37(5):961–6.
Cella D, Riley W, Stone A, Rothrock N, Reeve B, Yount S, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol. 2010;63(11):1179–94.
Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473–83.
Karlson EW, Daltroy LH, Rivest C, Ramsey-Goldman R, Wright EA, Partridge AJ, et al. Validation of a Systemic Lupus Activity Questionnaire (SLAQ) for population studies. Lupus. 2003;12(4):280–6.
Yazdany J, Yelin EH, Panopalis P, Trupin L, Julian L, Katz PP. Validation of the systemic lupus erythematosus activity questionnaire in a large observational cohort. Arthritis Rheum. 2008;59(1):136–43.
Peters E, Tompkins MK, Knoll MAZ, Ardoin SP, Shoots-Reinhard B, Meara AS. Despite high objective numeracy, lower numeric confidence relates to worse financial and medical outcomes. Proc Natl Acad Sci U S A. 2019;116(39):19386–91.
Weller JA, Dieckmann NF, Tusler M, Mertz CK, Burns WJ, Peters E. Development and testing of an abbreviated numeracy scale: a Rasch analysis approach. J Behav Decis Mak. 2013;26(2):198–212.
Bonacci RA, Holtgrave DR. Simplified estimates of HIV incidence and transmission rates for the USA, 2008-2012. Aids. 2016;30(2):332–3.
Lahita RG. Special report: adjusted lupus prevalence. Results of a marketing study by the Lupus Foundation of America. Lupus. 1995;4(6):450–3.
Haun J, Luther S, Dodd V, Donaldson P. Measurement variation across health literacy assessments: implications for assessment selection in research and practice. J Health Commun. 2012;17(Suppl 3):141–59.
Hachulla E, Le Gouellec N, Launay D, Balquet MH, Maillard H, Azar R, et al. Adherence to hydroxychloroquine in patients with systemic lupus: contrasting results and weak correlation between assessment tools. Joint Bone Spine 2020. https://doi.org/10.1016/j.jbspin.2020.04.017.
•• Singh JA, Shah N, Green C. Individualized patient decision-aid for immunosuppressive drugs in women with lupus nephritis: study protocol of a randomized, controlled trial. BMC Musculoskelet Disord. 2017;18(1):53. This study is a randomized controlled trial of a health literacy informed decision aid that has been evaluated in SLE.
•• Hirsh J, Wood P, Keniston A, Boyle D, Quinzanos I, Caplan L, et al. Universal health literacy precautions are associated with a significant increase in medication adherence in vulnerable rheumatology patients. ACR Open Rheumatol. 2020;2(2):110–8. This study demonstrated a universal health literacy precautions approach improved medication adherence in rheumatology patients, and disease activity in a subset of patients with rheumatoid arthritis.
Stormacq C, Wosinski J, Boillat E, Van den Broucke S. Effects of health literacy interventions on health-related outcomes in socioeconomically disadvantaged adults living in the community: a systematic review. JBI Evid Synth. 2020;18(7):1389–469.
Brown DR, Ludwig R, Buck GA, Durham D, Shumard T, Graham SS. Health literacy: universal precautions needed. J Allied Health. 2004;33(2):150–5.
Lindau ST, Basu A, Leitsch SA. Health literacy as a predictor of follow-up after an abnormal Pap smear: a prospective study. J Gen Intern Med. 2006;21(8):829–34.
Callahan LF, Hawk V, Rudd R, Hackney B, Bhandari S, Prizer LP, et al. Adaptation of the health literacy universal precautions toolkit for rheumatology and cardiology-applications for pharmacy professionals to improve self-management and outcomes in patients with chronic disease. Res Social Adm Pharm. 2013;9(5):597–608.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of Interest
Dr. Hastings received support from the Center of Innovation to Accelerate Discovery and Practice Transformation (CIN 13-410) at the Durham VA Health Care System. Dr. Eudy receives support from NIH NCATS Award Number 1KL2TR002554. Dr. Bailey reports grants from the NIH, Merck, Pfizer, and Eli Lilly and personal fees from the Gordon and Betty Moore Foundation, Sanofi, Pfizer, and Luto UK outside the submitted work.
Human and Animal Rights and Informed Consent
This article does not contain any studies with human or animal subjects performed by any of the authors.
Disclaimer
The contents do not represent the views of the U.S. Department of Veterans Affairs or the United States Government.
Additional information
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
This article is part of the Topical Collection on Autoimmunity
Rights and permissions
About this article
Cite this article
Maheswaranathan, M., Cantrell, S., Eudy, A.M. et al. Investigating Health Literacy in Systemic Lupus Erythematosus: a Descriptive Review. Curr Allergy Asthma Rep 20, 79 (2020). https://doi.org/10.1007/s11882-020-00978-6
Accepted:
Published:
DOI: https://doi.org/10.1007/s11882-020-00978-6