'Much clearer with pictures': Using community-based participatory research to design and test a Picture Option Grid for underserved patients with breast cancer

BMJ Open

Volumn 6, Issue 2, 2016, Pages

  Durand, Marie Anne ^a   Alam, Shama ^a   Grande, Stuart W ^a   Elwyn, Glyn ^a  

^a DARTMOUTH INSTITUTE FOR HEALTH POLICY AND CLINICAL PRACTICE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; ARTICLE; BREAST CANCER; CANCER DIAGNOSIS; CANCER RECURRENCE; CANCER STAGING; CANCER TEST; CLINICAL ARTICLE; CLINICAL DECISION MAKING; EARLY CANCER; FEMALE; HAIR LOSS; HEALTH PRACTITIONER; HUMAN; INFORMATION PROCESSING; MEDICAL INFORMATION; PARTICIPATORY RESEARCH; PICTURE OPTION GRID; QUALITY OF LIFE; SEMI STRUCTURED INTERVIEW; SOCIAL STATUS; AGED; AUDIOVISUAL AID; BREAST NEOPLASMS; DECISION MAKING; DECISION SUPPORT SYSTEM; FEASIBILITY STUDY; HEALTH CARE DELIVERY; MIDDLE AGED; PATIENT ATTITUDE; SOCIAL CLASS; VULNERABLE POPULATION;

ADULT; AGED; AUDIOVISUAL AIDS; BREAST NEOPLASMS; COMMUNITY-BASED PARTICIPATORY RESEARCH; DECISION MAKING; DECISION SUPPORT TECHNIQUES; FEASIBILITY STUDIES; FEMALE; HEALTH SERVICES ACCESSIBILITY; HUMANS; MIDDLE AGED; PATIENT ACCEPTANCE OF HEALTH CARE; SOCIAL CLASS; VULNERABLE POPULATIONS;

EID: 84960398097     PISSN: None     EISSN: 20446055     Source Type: Journal    
DOI: 10.1136/bmjopen-2015-010008     Document Type: Article

References (54)

1. American Cancer Society. What are the key statistics about breast cancer? 2015 (cited 25 March 2015). http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-key-statistics
2. Donepudi MS, Kondapalli K, Amos SJ, et al. Breast cancer statistics and markers. J Cancer Res Ther 2014;10:506-11.
3. Baquet CR, Commiskey P. Socioeconomic factors and breast carcinoma in multicultural women. Cancer 2000;88(5 Suppl):1256-64.
4. Bradley CJ, Given CW, Roberts C. Race, socioeconomic status, and breast cancer treatment and survival. J Natl Cancer Inst 2002;94:490-6.
5. Hurd TC, James T, Foster JM. Factors that affect breast cancer treatment: underserved and minority populations. Surg Oncol Clin N Am 2005;14:119-30, vii.
6. Wheeler SB, Reeder-Hayes KE, Carey LA. Disparities in breast cancer treatment and outcomes: biological, social, and health system determinants and opportunities for research. Oncologist 2013;18:986-93.
7. Coburn N, Fulton J, Pearlman DN, et al. Treatment variation by insurance status for breast cancer patients. Breast J 2008;14:128-34.
8. Hiotis K, Ye W, Sposto R, et al. Predictors of breast conservation therapy: a statistical analysis of 29, 000 patients: a statistical analysis of 29, 000 patients. J Surg Res 2003;114:250.
9. MacBride MB, Neal L, Dilaveri CA, et al. Factors associated with surgical decision making in women with early-stage breast cancer: a literature review. J Womens Health (Larchmt) 2013;22:236-42.
10. Polacek GN, Ramos MC, Ferrer RL. Breast cancer disparities and decision-making among U. S. women. Patient Educ Couns 2007;65:158-65.
11. Voti L, Richardson LC, Reis IM, et al. Treatment of local breast carcinoma in Florida: the role of the distance to radiation therapy facilities. Cancer 2006;106:201-7.
12. McVea KLSP, Minier WC, Palensky JE. Low-income women with early-stage breast cancer: physician and patient decision-making styles. Psychooncology 2001;10:137-46.
13. Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington DC: 2001.
14. Fisher B, Anderson S, Bryant J, et al. Twenty-year follow-up of a randomized trial comparing total mastectomy, lumpectomy, and lumpectomy plus irradiation for the treatment of invasive breast cancer. N Engl J Med 2002;347:1233-41.
15. Jatoi I, Proschan MA. Randomized trials of breast-conserving therapy versus mastectomy for primary breast cancer: a pooled analysis of updated results. Am J Clin Oncol 2005;28:289-94.
16. Morris AD, Morris RD, Wilson JF, et al. Breast-conserving therapy vs mastectomy in early-stage breast cancer: a meta-analysis of 10-year survival. Cancer J Sci Am 1997;3:6-12.
17. Poggi MM, Danforth DN, Sciuto LC, et al. Eighteen-year results in the treatment of early breast carcinoma with mastectomy versus breast conservation therapy: the National Cancer Institute Randomized Trial. Cancer 2003;98:697-702.
18. Collins ED, Moore CP, Clay KF, et al. Can women with early-stage breast cancer make an informed decision for mastectomy? J Clin Oncol 2009;27:519-25.
19. Obeidat R, Finnell DS, Lally RM. Decision aids for surgical treatment of early stage breast cancer: a narrative review of the literature. Patient Educ Couns 2011;85:e311-21.
20. Waljee JF, Rogers MA, Alderman AK. Decision aids and breast cancer: do they influence choice for surgery and knowledge of treatment options? J Clin Oncol 2007;25:1067-73.
21. Durand MA, Carpenter L, Dolan H, et al. Do interventions designed to support shared decision-making reduce health inequalities? A systematic review and meta-analysis. PLoS ONE 2014;9:e94670.
22. Wang Y, Zhang Q. Are American children and adolescents of low socioeconomic status at increased risk of obesity? Changes in the association between overweight and family income between 1971 and 2002. Am J Clin Nutr 2006;84:707-16.
23. Marcin JP, Schembri MS, He J, et al. A population-based analysis of socioeconomic status and insurance status and their relationship with pediatric trauma hospitalization and mortality rates. Am J Public Health 2003;93:461-6.
24. Albano JD, Ward E, Jemal A, et al. Cancer mortality in the United States by education level and race. J Natl Cancer Inst 2007;99:1384-94.
25. Berkman ND, Sheridan SL, Donahue KE, et al. Low health literacy and health outcomes: an updated systematic review. Ann Intern Med 2011;155:97-107.
26. Politi MC, Adsul P, Kuzemchak MD, et al. Clinicians' perceptions of digital vs. paper-based decision support interventions. J Eval Clin Pract 2015;21:175-9.
27. Elwyn G, Pickles T, Edwards A, et al. Supporting shared decision making using an Option Grid for osteoarthritis of the knee in an interface musculoskeletal clinic: a stepped wedge trial. Patient Educ Couns 2015; In Press. [Epub ahead of print].
28. Hess EP, Knoedler MA, Shah ND, et al. The chest pain choice decision aid: a randomized trial. Circ Cardiovasc Qual Outcomes 2012;5:251-9.
29. Montori VM, Shah ND, Pencille LJ, et al. Use of a decision aid to improve treatment decisions in osteoporosis: the osteoporosis choice randomized trial. Am J Med 2011;124:549-56.
30. Mullan RJ, Montori VM, Shah ND, et al. The diabetes mellitus medication choice decision aid: a randomized trial. Arch Intern Med 2009;169:1560-8.
31. Lloyd A, Joseph-Williams N, Edwards A, et al. Patchy 'coherence': using normalization process theory to evaluate a multi-faceted shared decision making implementation program (MAGIC). Implement Sci 2013;8:102.
32. Fay M, Grande SW, Donnelly K, et al. Using Option Grids: steps toward shared decision-making for neonatal circumcision. Patient Educ Couns 2015. [Epub ahead of print].
33. Hockley WE. The picture superiority effect in associative recognition. Mem Cognit. 2008;36:1351-9.
34. Delp C, Jones J. Communicating information to patients: the use of cartoon illustrations to improve comprehension of instructions. Acad Emerg Med 1996;3:264-70.
35. Michielutte R, Bahnson J, Dignan MB, et al. The use of illustrations and narrative text style to improve readability of a health education brochure. J Cancer Educ 1992;7:251-60.
36. Alberto PA, Frederick L, Hughes M, et al. Components of visual literacy: teaching logos. Focus Autism Other Dev Disabil 2007;22:234-43.
37. Houts PS, Doak CC, Doak LG, et al. The role of pictures in improving health communication: a review of research on attention, comprehension, recall, and adherence. Patient Educ Couns 2006;61:173-90.
38. Grande SW, Faber MJ, Durand MA, et al. A classification model of patient engagement methods and assessment of their feasibility in real-world settings. Patient Educ Couns 2014;95:281-7.
39. Israel BA, Schulz AJ, Parker EA, et al. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health 1998;19:173-202.
40. Wallerstein NB, Duran B. Using community-based participatory research to address health disparities. Health Promot Pract 2006;7:312-23.
41. Cotton D, Gresty K. Reflecting on the think-aloud method for evaluating e-learning. Br J Educ Technol 2006;37:45-54.
42. Fonteyn M, Fisher A. Use of think aloud method to study nurses' reasoning and decision making in clinical practice settings. J Neurosci Nurs 1995;27:124-8.
43. Funkesson KH, Anbacken EM, Ek AC. Nurses' reasoning process during care planning taking pressure ulcer prevention as an example. A think-aloud study. Int J Nurs Stud 2007;44:1109-19.
44. Durand MA, Boivin J, Elwyn E. Stakeholder field-testing of amnioDex, a person-centered decision support intervention for amniocentesis. The International Journal of Person Centered Medicine 2012;2:7-15.
45. Pope C, Ziebland S, Mays N. Qualitative research in health care. Analysing qualitative data. BMJ 2000;320:114-16.
46. Denzin NK, Lincoln YS. Handbook of qualitative research. 2nd edn. Thousand Oaks: Sage Publications, 2000.
47. Holloway I. Qualitative research in health care. Maidenhead: Open University Press, 2005.
48. Coulter A, Stilwell D, Kryworuchko J, et al. A systematic development process for patient decision aids. BMC Med Inform Decis Mak 2013;13(Suppl 2):S2.
49. Witteman HO, Dansokho SC, Colquhoun H, et al. User-centered design and the development of patient decision aids: protocol for a systematic review. Syst Rev 2015;4:11.
50. Elwyn G, O'Connor A, Stacey D, et al. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ 2006;333:417.
51. Elwyn G, O'Connor AM, Bennett C, et al. Assessing the quality of decision support technologies using the International Patient Decision Aid Standards instrument (IPDASi). PLoS ONE 2009;4:e4705.
52. Stacey D, Legare F, Col NF, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev 2014;(1): CD001431.
53. Jibaja-Weiss ML, Volk RJ, Granchi TS, et al. Entertainment education for breast cancer surgery decisions: a randomized trial among patients with low health literacy. Patient Educ Couns 2011;84:41-8.
54. Jibaja-Weiss ML, Volk RJ, Granch TS, et al. Entertainment education for informed breast cancer treatment decisions in low-literate women: development and initial evaluation of a patient decision aid. J Cancer Educ 2006;21:133-9.