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BMC Medical Informatics and Decision Making
Published in: BMC Medical Informatics and Decision Making 1/2014

Open Access 01-12-2014 | Research article

The design of a low literacy decision aid about rheumatoid arthritis medications developed in three languages for use during the clinical encounter

Authors: Jennifer L Barton, Christopher J Koenig, Gina Evans-Young, Laura Trupin, Jennie Anderson, Dana Ragouzeos, Maggie Breslin, Timothy Morse, Dean Schillinger, Victor M Montori, Edward H Yelin

Published in: BMC Medical Informatics and Decision Making | Issue 1/2014

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Abstract

Background

Shared decision-making in rheumatoid arthritis (RA) care is a priority among policy makers, clinicians and patients both nationally and internationally. Demands on patients to have basic knowledge of RA, treatment options, and details of risk and benefit when making medication decisions with clinicians can be overwhelming, especially for those with limited literacy or limited English language proficiency. The objective of this study is to describe the development of a medication choice decision aid for patients with rheumatoid arthritis (RA) in three languages using low literacy principles.

Methods

Based on the development of a diabetes decision aid, the RA decision aid (RA Choice) was developed through a collaborative process involving patients, clinicians, designers, decision-aid and health literacy experts. A combination of evidence synthesis and direct observation of clinician-patient interactions generated content and guided an iterative process of prototype development.

Results

Three iterations of RA Choice were developed and field-tested before completion. The final tool organized data using icons and plain language for 12 RA medications across 5 issues: frequency of administration, time to onset, cost, side effects, and special considerations. The tool successfully created a conversation between clinician and patient, and garnered high acceptability from clinicians.

Conclusions

The process of collaboratively developing an RA decision aid designed to promote shared decision making resulted in a graphically-enhanced, low literacy tool. The use of RA Choice in the clinical encounter has the potential to enhance communication for RA patients, including those with limited health literacy and limited English language proficiency.
Appendix
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Literature
1.
Soliman MM, Ashcroft DM, Watson KD, Lunt M, Symmons DP, Hyrich KL: British Society for Rheumatology Biologics R. Impact of concomitant use of DMARDs on the persistence with anti-TNF therapies in patients with rheumatoid arthritis: results from the British Society for Rheumatology Biologics Register. Ann Rheum Dis. 2011, 70 (4): 583-589.CrossRefPubMedPubMedCentral
2.
McBurney CA, Vina ER: Racial and ethnic disparities in rheumatoid arthritis. Curr Rheumatol Rep. 2012, 14 (5): 463-471.CrossRefPubMed
3.
Bruce B, Fries JF, Murtagh KN: Health status disparities in ethnic minority patients with rheumatoid arthritis: a cross-sectional study. J Rheumatol. 2007, 34 (7): 1475-1479.PubMed
4.
Barton JL, Trupin L, Schillinger D, Gansky SA, Tonner C, Margaretten M, Chernitskiy V, Graf J, Imboden J, Yelin E: Racial and ethnic disparities in disease activity and function among persons with rheumatoid arthritis from university-affiliated clinics. Arthritis Care Res (Hoboken). 2011, 63 (9): 1238-1246.CrossRef
5.
Caplan L, Wolfe F, Michaud K, Quinzanos I, Hirsh JM: Strong association of health literacy with functional status among rheumatoid arthritis patients: a cross-sectional study. Arthritis Care Res (Hoboken). 2014, 66 (4): 508-514.CrossRef
6.
Barton JL, Trupin L, Tonner C, Imboden J, Katz P, Schillinger D, Yelin E: English language proficiency, health literacy, and trust in physician are associated with shared decision making in rheumatoid arthritis. J Rheumatol. 2014, 41 (7): 7-1290.CrossRef
7.
de Wit MP, Smolen JS, Gossec L, van der Heijde DM: Treating rheumatoid arthritis to target: the patient version of the international recommendations. Ann Rheum Dis. 2011, 70 (6): 891-895.CrossRefPubMedPubMedCentral
8.
Smolen JS, Aletaha D, Bijlsma JW, Breedveld FC, Boumpas D, Burmester G, Combe B, Cutolo M, de Wit M, Dougados M, Emery P, Gibofsky A, Gomez-Reino JJ, Haraoui B, Kalden J, Keystone EC, Kvien TK, McInnes I, Martin-Mola E, Montecucco C, Schoels M, van der Heijde D: Treating rheumatoid arthritis to target: recommendations of an international task force. Ann Rheum Dis. 2010, 69 (4): 631-637.CrossRefPubMedPubMedCentral
9.
Smolen JS, Landewe R, Breedveld FC, Dougados M, Emery P, Gaujoux-Viala C, Gorter S, Knevel R, Nam J, Schoels M, Aletaha D, Buch M, Gossec L, Huizinga T, Bijlsma JW, Burmester G, Combe B, Cutolo M, Gabay C, Gomez-Reino J, Kouloumas M, Kvien TK, Martin-Mola E, McInnes I, Pavelka K, van Riel P, Scholte M, Scott DL, Sokka T, Valesini G, et al: EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs. Ann Rheum Dis. 2010, 69 (6): 964-975.CrossRefPubMedPubMedCentral
10.
Smolen JS, Landewe R, Breedveld FC, Buch M, Burmester G, Dougados M, Emery P, Gaujoux-Viala C, Gossec L, Nam J, Ramiro S, Winthrop K, de Wit M, Aletaha D, Betteridge N, Bijlsma JW, Boers M, Buttgereit F, Combe B, Cutolo M, Damjanov N, Hazes JM, Kouloumas M, Kvien TK, Mariette X, Pavelka K, van Riel PL, Rubbert-Roth A, Scholte-Voshaar M, Scott DL, et al: EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2013 update. Ann Rheum Dis. 2014, 73 (3): 492-509.CrossRefPubMed
11.
Breslin M, Mullan RJ, Montori VM: The design of a decision aid about diabetes medications for use during the consultation with patients with type 2 diabetes. Patient Educ Couns. 2008, 73 (3): 465-472.CrossRefPubMed
12.
Mullan RJ, Montori VM, Shah ND, Christianson TJ, Bryant SC, Guyatt GH, Perestelo-Perez LI, Stroebel RJ, Yawn BP, Yapuncich V, Breslin MA, Pencille L, Smith SA: The diabetes mellitus medication choice decision aid: a randomized trial. Arch Intern Med. 2009, 169 (17): 1560-1568.CrossRefPubMed
13.
Jagosh J, Macaulay AC, Pluye P, Salsberg J, Bush PL, Henderson J, Sirett E, Wong G, Cargo M, Herbert CP, Seifer SD, Green LW, Greenhalgh T: Uncovering the benefits of participatory research: implications of a realist review for health research and practice. Milbank Q. 2012, 90 (2): 311-346.CrossRefPubMedPubMedCentral
14.
Singh JA, Furst DE, Bharat A, Curtis JR, Kavanaugh AF, Kremer JM, Moreland LW, O’Dell J, Winthrop KL, Beukelman T, Bridges SL, Chatham WW, Paulus HE, Suarez-Almazor M, Bombardier C, Dougados M, Khanna D, King CM, Leong AL, Matteson EL, Schousboe JT, Moynihan E, Kolba KS, Jain A, Volkmann ER, Agrawal H, Bae S, Mudano AS, Patkar NM, Saag KG: 2012 update of the 2008 American College of Rheumatology recommendations for the use of disease-modifying antirheumatic drugs and biologic agents in the treatment of rheumatoid arthritis. Arthritis Care Res (Hoboken). 2012, 64 (5): 625-639.CrossRef
15.
O’Dell JR, Mikuls TR, Taylor TH, Ahluwalia V, Brophy M, Warren SR, Lew RA, Cannella AC, Kunkel G, Phibbs CS, Anis AH, Leatherman S, Keystone E: Therapies for active rheumatoid arthritis after methotrexate failure. N Engl J Med. 2013, 369 (4): 307-318.CrossRefPubMed
16.
Charmaz K: ‘Discovering’ chronic illness: using grounded theory. Soc Sci Med. 1990, 30 (11): 1161-1172.CrossRefPubMed
17.
Barton JL, Koenig CJ, Trupin L, Evans-Young G, Schillinger D, Yelin E: Patient preferences and values associated with therapeutic options for rheumatoid arthritis: A qualitative study of patients and provider stakeholders across three languages. 2012, International Conference on Communication in Healthcare, St. Andrews, Scotland
18.
Seligman HK, Wallace AS, DeWalt DA, Schillinger D, Arnold CL, Shilliday BB, Delgadillo A, Bengal N, Davis TC: Facilitating behavior change with low-literacy patient education materials. Am J Health Behav. 2007, 31 (Suppl 1): S69-S78.CrossRefPubMedPubMedCentral
19.
20.
Choosing Medications for Rheumatoid Arthritis: Clinician’s Guide. 2007, Comparative Effectiveness Review Summary Guides for Clinicians, Rockville (MD)
21.
Rheumatoid Arthritis Medicines: A Guide for Adults. 2005, Comparative Effectiveness Review Summary Guides for Consumers, Rockville (MD)
22.
Aaltonen KJ, Virkki LM, Malmivaara A, Konttinen YT, Nordstrom DC, Blom M: Systematic review and meta-analysis of the efficacy and safety of existing TNF blocking agents in treatment of rheumatoid arthritis. PLoS One. 2012, 7 (1): e30275-CrossRefPubMedPubMedCentral
23.
Katchamart W, Trudeau J, Phumethum V, Bombardier C: Efficacy and toxicity of methotrexate (MTX) monotherapy versus MTX combination therapy with non-biological disease-modifying antirheumatic drugs in rheumatoid arthritis: a systematic review and meta-analysis. Ann Rheum Dis. 2009, 68 (7): 1105-1112.CrossRefPubMed
24.
Katchamart W, Trudeau J, Phumethum V, Bombardier C: Methotrexate monotherapy versus methotrexate combination therapy with non-biologic disease modifying anti-rheumatic drugs for rheumatoid arthritis. Cochrane Database Syst Rev. 2010, 4: CD008495-PubMed
25.
Visser K, Katchamart W, Loza E, Martinez-Lopez JA, Salliot C, Trudeau J, Bombardier C, Carmona L, van der Heijde D, Bijlsma JW, Boumpas DT, Canhao H, Edwards CJ, Hamuryudan V, Kvien TK, Leeb BF, Martin-Mola EM, Mielants H, Muller-Ladner U, Murphy G, Ostergaard M, Pereira IA, Ramos-Remus C, Valentini G, Zochling J, Dougados M: Multinational evidence-based recommendations for the use of methotrexate in rheumatic disorders with a focus on rheumatoid arthritis: integrating systematic literature research and expert opinion of a broad international panel of rheumatologists in the 3E Initiative. Ann Rheum Dis. 2009, 68 (7): 1086-1093.CrossRefPubMed
26.
LeBlanc A, Bodde AE, Branda ME, Yost KJ, Herrin J, Williams MD, Shah ND, Houten HV, Ruud KL, Pencille LJ, Montori VM: Translating comparative effectiveness of depression medications into practice by comparing the depression medication choice decision aid to usual care: study protocol for a randomized controlled trial. Trials. 2013, 14: 127-CrossRefPubMedPubMedCentral
27.
Traynor K: FDA approves tofacitinib for rheumatoid arthritis. American journal of health-system pharmacy: AJHP: official journal of the American Society of Health-System Pharmacists. 2012, 69 (24): 2120-
28.
Barton J, Koenig CJ, Trupin L, Evans-Young G, Schillinger D, Yelin E: Patient preferences and values associated with therapeutic options for Rheumatoid Arthritis: A qualitative study of patients and provider stakeholders across three languages. 2012, ACR Research Workshop, Denver CO
29.
Constantinescu F, Goucher S, Weinstein A, Fraenkel L: Racial disparities in treatment preferences for rheumatoid arthritis. Med Care. 2009, 47 (3): 350-355.CrossRefPubMedPubMedCentral
30.
Fraenkel L, Bogardus ST, Concato J, Felson DT, Wittink DR: Patient preferences for treatment of rheumatoid arthritis. Ann Rheum Dis. 2004, 63 (11): 1372-1378.CrossRefPubMedPubMedCentral
31.
Pasma A, van’t Spijker A, Hazes JM, Busschbach JJ, Luime JJ: Factors associated with adherence to pharmaceutical treatment for rheumatoid arthritis patients: a systematic review. Semin Arthritis Rheum. 2013, 43 (1): 18-28.CrossRefPubMed
32.
Sanderson T, Calnan M, Morris M, Richards P, Hewlett S: The impact of patient-perceived restricted access to anti-TNF therapy for rheumatoid arthritis: a qualitative study. Musculoskeletal Care. 2009, 7 (3): 194-209.CrossRefPubMedPubMedCentral
33.
Barton JL: Patient preferences and satisfaction in the treatment of rheumatoid arthritis with biologic therapy. Patient Prefer Adherence. 2009, 3: 335-344.CrossRefPubMedPubMedCentral
34.
Fagerlin A, Zikmund-Fisher BJ, Ubel PA: Helping patients decide: ten steps to better risk communication. J Natl Cancer Inst. 2011, 103 (19): 1436-1443.CrossRefPubMedPubMedCentral
35.
Chung CP, Thompson JL, Koch GG, Amara I, Strand V, Pincus T: Are American College of Rheumatology 50% response criteria superior to 20% criteria in distinguishing active aggressive treatment in rheumatoid arthritis clinical trials reported since 1997? A meta-analysis of discriminant capacities. Ann Rheum Dis. 2006, 65 (12): 1602-1607.CrossRefPubMedPubMedCentral
36.
Nam JL, Ramiro S, Gaujoux-Viala C, Takase K, Leon-Garcia M, Emery P, Gossec L, Landewe R, Smolen JS, Buch MH: Efficacy of biological disease-modifying antirheumatic drugs: a systematic literature review informing the 2013 update of the EULAR recommendations for the management of rheumatoid arthritis. Ann Rheum Dis. 2014, 73 (3): 516-528.CrossRefPubMed
37.
Moreland LW, O’Dell JR, Paulus HE, Curtis JR, Bathon JM, St Clair EW, Bridges SL, Zhang J, McVie T, Howard G, van der Heijde D, Cofield SS: A randomized comparative effectiveness study of oral triple therapy versus etanercept plus methotrexate in early aggressive rheumatoid arthritis: the treatment of Early Aggressive Rheumatoid Arthritis Trial. Arthritis Rheum. 2012, 64 (9): 2824-2835.CrossRefPubMedPubMedCentral
38.
DeWalt DA, Davis TC, Wallace AS, Seligman HK, Bryant-Shilliday B, Arnold CL, Freburger J, Schillinger D: Goal setting in diabetes self-management: taking the baby steps to success. Patient Educ Couns. 2009, 77 (2): 218-223.CrossRefPubMedPubMedCentral
39.
Heisler M, Vijan S, Anderson RM, Ubel PA, Bernstein SJ, Hofer TP: When do patients and their physicians agree on diabetes treatment goals and strategies, and what difference does it make?. J Gen Intern Med. 2003, 18 (11): 893-902.CrossRefPubMedPubMedCentral
40.
Maneesriwongul W, Dixon JK: Instrument translation process: a methods review. J Adv Nurs. 2004, 48 (2): 175-186.CrossRefPubMed
41.
Stacey D, Legare F, Col NF, Bennett CL, Barry MJ, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, Trevena L, Wu JH: Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014, 1: CD001431-PubMed
42.
Fraenkel L, Peters E, Charpentier P, Olsen B, Errante L, Schoen RT, Reyna V: Decision tool to improve the quality of care in rheumatoid arthritis. Arthritis Care Res (Hoboken). 2012, 64 (7): 977-985.
43.
Martin RW, Brower ME, Geralds A, Gallagher PJ, Tellinghuisen DJ: An experimental evaluation of patient decision aid design to communicate the effects of medications on the rate of progression of structural joint damage in rheumatoid arthritis. Patient Educ Couns. 2012, 86 (3): 329-334.CrossRefPubMed
44.
Li LC, Adam PM, Backman CL, Lineker S, Jones CA, Lacaille D, Townsend AF, Yacyshyn E, Yousefi C, Tugwell P, Leese J, Stacey D. A proof-of-concept study of ANSWER, a web-based methotrexate decision aid for patients with rheumatoid arthritis. Arthritis care & research. 2014. doi:10.1002/acr.22319. PubMed PMID: 24623617
45.
Coulter A, Stilwell D, Kryworuchko J, Mullen PD, Ng CJ, van der Weijden T: A systematic development process for patient decision aids. BMC Med Inform Decis Mak. 2013, 13 (Suppl 2): S2-10.1186/1472-6947-13-S2-S2.CrossRefPubMedPubMedCentral
Metadata
Title
The design of a low literacy decision aid about rheumatoid arthritis medications developed in three languages for use during the clinical encounter
Authors
Jennifer L Barton
Christopher J Koenig
Gina Evans-Young
Laura Trupin
Jennie Anderson
Dana Ragouzeos
Maggie Breslin
Timothy Morse
Dean Schillinger
Victor M Montori
Edward H Yelin
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Medical Informatics and Decision Making / Issue 1/2014
Electronic ISSN: 1472-6947
DOI
https://doi.org/10.1186/s12911-014-0104-8

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