Assessing the acceptability and feasibility of encounter decision aids for early stage breast cancer targeted at underserved patients

BMC Medical Informatics and Decision Making - Tập 16 Số 1 - Trang 1-13 - 2016
Alam, Shama1, Elwyn, Glyn1, Percac-Lima, Sanja2,3, Grande, Stuart1, Durand, Marie-Anne1
1The Dartmouth Institute for Health Policy and Clinical Practice, Lebanon, USA
2Massachusetts General Hospital, Boston, USA
3Harvard Medical School, Boston, USA;

Tóm tắt

Women of low socioeconomic status (SES) diagnosed with early stage breast cancer are less likely to be involved in treatment decisions. They tend to report higher decisional regret and poorer communication. Evidence suggests that well-designed encounter decision aids (DAs) could improve outcomes and potentially reduce healthcare disparities. Our goal was to evaluate the acceptability and feasibility of encounter decision aids (Option Grid, Comic Option Grid, and Picture Option Grid) adapted for a low-SES and low-literacy population. We used a multi-phase, mixed-methods approach. In phase 1, we conducted a focus group with rural community stakeholders. In phase 2, we developed and administered a web-based questionnaire with patients of low and high SES. In phase 3, we interviewed patients of low SES and relevant healthcare professionals. Data from phase 1 (n = 5) highlighted the importance of addressing treatment costs for patients. Data from phase 2 (n = 268) and phase 3 (n = 15) indicated that using both visual displays and numbers are helpful for understanding statistical information. Data from all three phases suggested that using plain language and simple images (Picture Option Grid) was most acceptable and feasible. The Comic Option Grid was deemed least acceptable. Option Grid and Picture Option Grid appeared acceptable and feasible in facilitating patient involvement and improving perceived understanding among patients of high and low SES. Picture Option Grid was considered most acceptable, accessible and feasible in the clinic visit. However, given the small sample sizes used, those findings need to be interpreted with caution. Further research is needed to determine the impact of pictorial and text-based encounter decision aids in underserved patients and across socioeconomic strata.

Tài liệu tham khảo

citation_journal_title=JAMA Surg; citation_title=Disparities in the Use of Breast-Conserving Therapy Among Patients With Early-Stage Breast Cancer; citation_author=M Lautner, H Lin, Y Shen, C Parker, H Kuerer, S Shaitelman, G Babiera, I Bedrosian; citation_volume=150; citation_issue=8; citation_publication_date=2015; citation_pages=778-86; citation_doi=10.1001/jamasurg.2015.1102; citation_id=CR1 citation_journal_title=JAMA Oncol; citation_title=Breast cancer mortality after a diagnosis of ductal carcinoma in situ; citation_author=SA Narod, J Iqbal, V Giannakeas, V Sopik, P Sun; citation_volume=1; citation_issue=7; citation_publication_date=2015; citation_pages=888-96; citation_doi=10.1001/jamaoncol.2015.2510; citation_id=CR2 citation_journal_title=J Natl Cancer Inst; citation_title=Race, socioeconomic status, and breast cancer treatment and survival; citation_author=CJ Bradley, CW Given, C Roberts; citation_volume=94; citation_publication_date=2002; citation_pages=490-96; citation_doi=10.1093/jnci/94.7.490; citation_id=CR3 citation_journal_title=Oncologist; citation_title=Disparities in breast cancer treatment and outcomes: biological, social, and health system determinants and opportunities for research; citation_author=SB Wheeler, KE Reeder-Hayes, LA Carey; citation_volume=18; citation_publication_date=2013; citation_pages=986-93; citation_doi=10.1634/theoncologist.2013-0243; citation_id=CR4 citation_journal_title=Psychooncology; citation_title=Low-income women with early-stage breast cancer: physician and patient decision-making styles; citation_author=KLSP McVea, WC Minier, JEJ Palensky; citation_volume=10; citation_publication_date=2001; citation_pages=137-46; citation_doi=10.1002/pon.503; citation_id=CR5 citation_journal_title=Patient Educ Couns; citation_title=Cancer communication patterns and the influence of patient characteristics: Disparities in information-giving and affective behaviors; citation_author=LA Siminoff, GC Graham, NH Gordon; citation_volume=62; citation_publication_date=2006; citation_pages=355-60; citation_doi=10.1016/j.pec.2006.06.011; citation_id=CR6 citation_journal_title=Patient Educ Couns; citation_title=Breast cancer disparities and decision-making among U.S. women; citation_author=GNLJ Polacek, MC Ramos, RL Ferrer; citation_volume=65; citation_issue=2; citation_publication_date=2007; citation_pages=158-65; citation_doi=10.1016/j.pec.2006.06.003; citation_id=CR7 citation_journal_title=Patient Educ Couns; citation_title=Entertainment education for breast cancer surgery decisions: a randomized trial among patients with low health literacy; citation_author=ML Jibaja-Weiss, RJ Volk, TS Granchi, NE Neff, EK Robinson, SJ Spann, N Aoki, LC Friedman, JR Beck; citation_volume=84; citation_publication_date=2011; citation_pages=41-8; citation_doi=10.1016/j.pec.2010.06.009; citation_id=CR8 citation_journal_title=PLoS One; citation_title=Do interventions designed to support shared decision-making reduce health inequalities? A systematic review and meta-analysis; citation_author=M-A Durand, L Carpenter, H Dolan, P Bravo, M Mann, F Bunn, G Elwyn; citation_volume=9; citation_publication_date=2014; citation_pages=e94670; citation_doi=10.1371/journal.pone.0094670; citation_id=CR9 citation_journal_title=J Clin Oncol; citation_title=Decision aids and breast cancer: do they influence choice for surgery and knowledge of treatment options?; citation_author=JF Waljee, MAM Rogers, AK Alderman; citation_volume=25; citation_publication_date=2007; citation_pages=1067-1073; citation_doi=10.1200/JCO.2006.08.5472; citation_id=CR10 citation_journal_title=BMJ Open; citation_title=Decision aids for randomised controlled trials: a qualitative exploration of stakeholders’ views; citation_author=K Gillies, ZC Skea, MK Campbell; citation_volume=4; citation_publication_date=2014; citation_pages=e005734; citation_doi=10.1136/bmjopen-2014-005734; citation_id=CR11 citation_journal_title=Patient Educ Couns; citation_title=The role of pictures in improving health communication: A review of research on attention, comprehension, recall, and adherence; citation_author=PS Houts, CC Doak, LG Doak, MJ Loscalzo; citation_volume=61; citation_issue=2; citation_publication_date=2006; citation_pages=173-90; citation_doi=10.1016/j.pec.2005.05.004; citation_id=CR12 citation_journal_title=Med Informatics Internet Med; citation_title=Readability and cultural sensitivity of web-based patient decision aids for cancer screening and treatment: A systematic review; citation_author=MD Thomson, L Hoffman-Goetz; citation_volume=32; citation_publication_date=2007; citation_pages=263-86; citation_doi=10.1080/14639230701780408; citation_id=CR13 citation_journal_title=BMC Med Inform Decis Mak; citation_title=“Many miles to go …”: a systematic review of the implementation of patient decision support interventions into routine clinical practice; citation_author=G Elwyn, I Scholl, C Tietbohl, M Mann, AGK Edwards, C Clay, F Légaré, T Weijden, CL Lewis, RM Wexler, DL Frosch; citation_volume=13 Suppl 2; citation_publication_date=2013; citation_pages=S14; citation_doi=10.1186/1472-6947-13-S2-S14; citation_id=CR14 citation_journal_title=Implement Sci; citation_title=Peering into the black box: a meta-analysis of how clinicians use decision aids during clinical encounters; citation_author=KD Wyatt, ME Branda, RT Anderson, LJ Pencille, VM Montori, EP Hess, HH Ting, A LeBlanc; citation_volume=9; citation_publication_date=2014; citation_pages=26; citation_doi=10.1186/1748-5908-9-26; citation_id=CR15 citation_journal_title=Circ Cardiovasc Qual Outcomes; citation_title=The chest pain choice decision aid: a randomized trial; citation_author=EP Hess, MA Knoedler, ND Shah, JA Kline, M Breslin, ME Branda, LJ Pencille, BR Asplin, DM Nestler, AT Sadosty, IG Stiell, HH Ting, VM Montori; citation_volume=5; citation_publication_date=2012; citation_pages=251-259; citation_doi=10.1161/CIRCOUTCOMES.111.964791; citation_id=CR16 citation_journal_title=Am J Med; citation_title=Use of a decision aid to improve treatment decisions in osteoporosis: the osteoporosis choice randomized trial; citation_author=VM Montori, ND Shah, LJ Pencille, ME Branda, HK Houten, BA Swiglo, RL Kesman, SM Tulledge-Scheitel, TM Jaeger, RE Johnson, GA Bartel, LJ Melton, RA Wermers; citation_volume=124; citation_publication_date=2011; citation_pages=549-56; citation_doi=10.1016/j.amjmed.2011.01.013; citation_id=CR17 citation_journal_title=Patient Educ Couns; citation_title=Supporting shared decision making using an Option Grid for osteoarthritis of the knee in an interface musculoskeletal clinic: A stepped wedge trial; citation_author=G Elwyn, T Pickles, A Edwards, K Kinsey, K Brain, RG Newcombe, J Firth, K Marrin, A Nye, F Wood; citation_volume=99; citation_publication_date=2016; citation_pages=571-577; citation_doi=10.1016/j.pec.2015.10.011; citation_id=CR18 citation_journal_title=Arch Intern Med; citation_title=The diabetes mellitus medication choice decision aid; citation_author=RJ Mullan, VM Montori, ND Shah, TJH Christianson, SC Bryant, GH Guyatt, LI Perestelo-Perez, RJ Stroebel, BP Yawn, V Yapuncich, MA Breslin, L Pencille, SA Smith; citation_volume=169; citation_publication_date=2009; citation_pages=1560-1568; citation_doi=10.1001/archinternmed.2009.293; citation_id=CR19 citation_journal_title=Patient Educ Couns; citation_title=The statin choice decision aid in primary care: a randomized trial; citation_author=DM Mann, D Ponieman, VM Montori, J Arciniega, T McGinn; citation_volume=80; citation_publication_date=2010; citation_pages=138-140; citation_doi=10.1016/j.pec.2009.10.008; citation_id=CR20 citation_journal_title=Arch Intern Med; citation_title=Helping patients with type 2 diabetes mellitus make treatment decisions: statin choice randomized trial; citation_author=AJ Weymiller, VM Montori, LA Jones, A Gafni, GH Guyatt, SC Bryant, TJH Christianson, RJ Mullan, SA Smith; citation_volume=167; citation_publication_date=2007; citation_pages=1076-82; citation_doi=10.1001/archinte.167.10.1076; citation_id=CR21 citation_journal_title=Patient Educ Couns; citation_title=Increasing readiness to decide and strengthening behavioral intentions: Evaluating the impact of a web-based patient decision aid for breast cancer treatment options (BresDex: www.bresdex.com); citation_author=S Sivell, A Edwards, ASR Manstead, MWR Reed, L Caldon, K Collins, A Clements, G Elwyn; citation_volume=88; citation_publication_date=2012; citation_pages=209-217; citation_doi=10.1016/j.pec.2012.03.012; citation_id=CR22 citation_journal_title=Patient Educ Couns; citation_title=Theory-based design and field-testing of an intervention to support women choosing surgery for breast cancer: BresDex; citation_author=S Sivell, W Marsh, A Edwards, ASR Manstead, A Clements, G Elwyn; citation_volume=86; citation_publication_date=2012; citation_pages=179-188; citation_doi=10.1016/j.pec.2011.04.014; citation_id=CR23 citation_journal_title=BMJ Open; citation_title=“Much clearer with pictures”: Using community-based participatory research to design and test a Picture Option Grid for underserved breast cancer patients; citation_author=M-A Durand, S Alam, S Grande, G Elwyn; citation_volume=6; citation_issue=2; citation_publication_date=2016; citation_pages=e010008; citation_doi=10.1136/bmjopen-2015-010008; citation_id=CR24 citation_journal_title=Educ Res; citation_title=Mixed methods research: a research paradigm whose time has come; citation_author=RB Johnson, AJ Onwuegbuzie; citation_volume=33; citation_publication_date=2004; citation_pages=14-26; citation_doi=10.3102/0013189X033007014; citation_id=CR25 citation_journal_title=Popul English Ed; citation_title=A general inductive approach for qualitative data analysis; citation_author=DR Thomas; citation_volume=27; citation_publication_date=2003; citation_pages=237-246; citation_id=CR26 citation_journal_title=J Comput Commun; citation_title=Researching internet-based populations: advantages and disadvantages of online survey research, online questionnaire authoring software packages, and web survey services; citation_author=KB Wright; citation_volume=10; citation_publication_date=2006; citation_pages=00; citation_id=CR27 citation_journal_title=Am Psychol; citation_title=Should we trust web-based studies? A comparative analysis of six preconceptions about internet questionnaires; citation_author=SD Gosling, S Vazire, S Srivastava, OP John; citation_volume=59; citation_publication_date=2004; citation_pages=93-104; citation_doi=10.1037/0003-066X.59.2.93; citation_id=CR28 citation_journal_title=Am J Public Health; citation_title=Communicating treatment risk reduction to people with low numeracy skills: a cross-cultural comparison; citation_author=R Garcia-Retamero, M Galesic; citation_volume=99; citation_publication_date=2009; citation_pages=2196-202; citation_doi=10.2105/AJPH.2009.160234; citation_id=CR29 citation_journal_title=Health Psychol; citation_title=Using icon arrays to communicate medical risks: overcoming low numeracy; citation_author=M Galesic, R Garcia-Retamero, G Gigerenzer; citation_volume=28; citation_publication_date=2009; citation_pages=210-216; citation_doi=10.1037/a0014474; citation_id=CR30 citation_journal_title=Heal Psychol; citation_title=Numbers can be worth a thousand pictures: Individual differences in understanding graphical and numerical representations of health-related information; citation_author=W Gaissmaier, O Wegwarth, D Skopec, A-S Müller, S Broschinski, MC Politi; citation_volume=31; citation_publication_date=2012; citation_pages=286-296; citation_doi=10.1037/a0024850; citation_id=CR31 citation_journal_title=BMC Med Inform Decis Mak; citation_title=Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers; citation_author=LJ Trevena, BJ Zikmund-Fisher, A Edwards, W Gaissmaier, M Galesic, PKJ Han, J King, ML Lawson, SK Linder, I Lipkus, E Ozanne, E Peters, D Timmermans, S Woloshin; citation_volume=13 Suppl 2; citation_issue=Suppl 2; citation_publication_date=2013; citation_pages=S7; citation_doi=10.1186/1472-6947-13-S2-S7; citation_id=CR32 citation_journal_title=Acad Emerg Med; citation_title=communicating information to patients: the use of cartoon illustrations to improve comprehension of instructions; citation_author=C Delp, J Jones; citation_volume=3; citation_publication_date=1996; citation_pages=264-70; citation_doi=10.1111/j.1553-2712.1996.tb03431.x; citation_id=CR33 citation_journal_title=J Cancer Educ; citation_title=The Use of Illustrations and Narrative Text Style to Improve Readability of a Health Education Brochure; citation_author=R Michielutte, J Bahnson, MB Dignan, EM Schroeder; citation_volume=7; citation_publication_date=1992; citation_pages=251-60; citation_doi=10.1080/08858199209528176; citation_id=CR34 Nayak JG, Hartzler AL, Macleod LC, Izard JP, Dalkin BM, Gore JL. Relevance of graph literacy in the development of patient-centered communication tools. Patient Educ Couns. 2015;99(3):448–54. citation_journal_title=Syst Rev; citation_title=User-centered design and the development of patient decision aids: protocol for a systematic review; citation_author=HO Witteman, SC Dansokho, H Colquhoun, A Coulter, M Dugas, A Fagerlin, AM Giguere, S Glouberman, L Haslett, A Hoffman, N Ivers, F Légaré, J Légaré, C Levin, K Lopez, VM Montori, T Provencher, J-S Renaud, K Sparling, D Stacey, G Vaisson, RJ Volk, W Witteman; citation_volume=4; citation_publication_date=2015; citation_pages=11; citation_doi=10.1186/2046-4053-4-11; citation_id=CR36 citation_journal_title=Med Decis Making; citation_title=Effects of Design Features of Explicit Values Clarification Methods: A Systematic Review; citation_author=HO Witteman, T Gavaruzzi, LD Scherer, AH Pieterse, A Fuhrel-Forbis, S Chipenda Dansokho, N Exe, VC Kahn, D Feldman-Stewart, NF Col, AF Turgeon, A Fagerlin; citation_volume=36; citation_issue=6; citation_publication_date=2016; citation_pages=760-76; citation_doi=10.1177/0272989X16634085; citation_id=CR37