Implementation and sustainability factors of two early-stage breast cancer conversation aids in diverse practices

Danielle Schubbe, Renata W Yen, Catherine H Saunders, Glyn Elwyn, Rachel C Forcino, A James O'Malley, Mary C Politi, Julie Margenthaler, Robert J Volk, Karen Sepucha, Elissa Ozanne, Sanja Percac-Lima, Ann Bradley, Courtney Goodwin, Maria van den Muijsenbergh, Johanna W M Aarts, Peter Scalia, Marie-Anne Durand, Danielle Schubbe, Renata W Yen, Catherine H Saunders, Glyn Elwyn, Rachel C Forcino, A James O'Malley, Mary C Politi, Julie Margenthaler, Robert J Volk, Karen Sepucha, Elissa Ozanne, Sanja Percac-Lima, Ann Bradley, Courtney Goodwin, Maria van den Muijsenbergh, Johanna W M Aarts, Peter Scalia, Marie-Anne Durand

Abstract

Background: Conversation aids can facilitate shared decision-making and improve patient-centered outcomes. However, few examples exist of sustained use of conversation aids in routine care due to numerous barriers at clinical and organizational levels. We explored factors that will promote the sustained use of two early-stage breast cancer conversation aids. We examined differences in opinions between the two conversation aids and across socioeconomic strata.

Methods: We nested this study within a randomized controlled trial that demonstrated the effectiveness of two early-stage breast cancer surgery conversation aids, one text-based and one picture-based. These conversation aids facilitated more shared decision-making and improved the decision process, among other outcomes, across four health systems with socioeconomically diverse patient populations. We conducted semi-structured interviews with a purposive sample of patient participants across conversation aid assignment and socioeconomic status (SES) and collected observations and field notes. We interviewed trial surgeons and other stakeholders. Two independent coders conducted framework analysis using the NOrmalization MeAsure Development through Normalization Process Theory. We also conducted an inductive analysis. We conducted additional sub-analyses based on conversation aid assignment and patient SES.

Results: We conducted 73 semi-structured interviews with 43 patients, 16 surgeons, and 14 stakeholders like nurses, cancer center directors, and electronic health record (EHR) experts. Patients and surgeons felt the conversation aids should be used in breast cancer care in the future and were open to various methods of giving and receiving the conversation aid (EHR, email, patient portal, before consultation). Patients of higher SES were more likely to note the conversation aids influenced their treatment discussion, while patients of lower SES noted more influence on their decision-making. Intervention surgeons reported using the conversation aids did not lengthen their typical consultation time. Most intervention surgeons felt using the conversation aids enhanced their usual care after using it a few times, and most patients felt it appeared part of their normal routine.

Conclusions: Key factors that will guide the future sustained implementation of the conversation aids include adapting to existing clinical workflows, flexibility of use, patient characteristics, and communication preferences.

Trial registration: ClinicalTrials.gov Identifier: NCT03136367 , registered on May 2, 2017.

Keywords: Breast cancer; Conversation aid; Decision aid; Encounter decision aid; Encounter patient decision aid; Health communication; Implementation; Normalization Process Theory; Qualitative research; Shared decision-making.

Conflict of interest statement

● Glyn Elwyn has edited and published books that provide royalties on sales by the publishers: the books include Shared Decision Making (Oxford University Press) and Groups (Radcliffe Press). Glyn Elwyn’s academic interests are focused on shared decision-making and coproduction. He owns copyright in measures of shared decision-making and care integration, namely collaboRATE, integRATE (measure of care integration), consideRATE (patient experience of care in serious illness), coopeRATE (measure of goal setting), toleRATE (clinician attitude to shared decision-making), Observer OPTION-5, and Observer OPTION-12 (observer measures of shared decision-making). He has in the past provided consultancy for organizations, including (1) Emmi Solutions, LLC who developed patient decision support tools; (2) National Quality Forum on the certification of decision support tools; (3) Washington State Health Department on the certification of decision support tools; (4) SciMentum LLC, Amsterdam (workshops for shared decision-making). He is the Founder and Director of &think LLC, which owns the registered trademark for Option GridsTM patient decision aids; Founder and Director of SHARPNETWORK LLC, a provider of training for shared decision-making. He provides advice in the domain of shared decision-making and patient decision aids to (1) Access Community Health Network, Chicago (Adviser to Federally Qualified Medical Centers); (2) EBSCO Health for Option GridsTM patient decision aids (consultant); (3) Bind on Demand Health Insurance (consultant); (4) PatientWisdom Inc (adviser); (5) abridge AI Inc (Chief Clinical Research Scientist).

● Glyn Elwyn and Marie-Anne Durand have developed the Option Grid conversation aids, which are licensed to EBSCO Health. They receive consulting income from EBSCO Health and may receive royalties in the future. Marie-Anne Durand was a consultant for ACCESS Community Health Network until 2019.

● From 2014-2018, Dr. Karen Sepucha received salary support as a member of the scientific advisory board for Healthwise, a not-for-profit foundation that develops and distributes patient education and decision support materials.

● Catherine Hylas Saunders holds copyright in the consideRATE suite of tools.

No other competing interests declared.

References

    1. Stacey D, Légaré F, Lewis K, Barry MJ, Bennett CL, Eden KB, et al. Decision aids for people facing health treatment or screening decisions [Internet]. Cochrane Database Syst Rev 2017. Available from:
    1. Scalia P, Durand M-A, Berkowitz JL, Ramesh NP, Faber MJ, Kremer JAM, et al. The impact and utility of encounter patient decision aids: Systematic review, meta-analysis and narrative synthesis [Internet]. Patient Educ Couns. 2019. p. 817–841. Available from:
    1. Dobler CC, Sanchez M, Gionfriddo MR, Alvarez-Villalobos NA, Singh Ospina N, Spencer-Bonilla G, et al. Impact of decision aids used during clinical encounters on clinician outcomes and consultation length: a systematic review. BMJ Qual Saf. 2019;28:499–510. Available from:
    1. Légaré F, Adekpedjou R, Stacey D, Turcotte S, Kryworuchko J, Graham ID, et al. Interventions for increasing the use of shared decision making by healthcare professionals. Cochrane Database Syst Rev. 2018;7:CD006732. Available from:
    1. Elwyn G, Scholl I, Tietbohl C, Mann M, Edwards AGK, Clay C, et al. “Many miles to go …”: a systematic review of the implementation of patient decision support interventions into routine clinical practice [Internet]. BMC Med Inform Decis Mak. 2013. Available from:
    1. Légaré F, Stacey D, Turcotte S, Cossi M-J, Kryworuchko J, Graham ID, et al. Interventions for improving the adoption of shared decision making by healthcare professionals. Cochrane Database Syst Rev. 2014;CD006732. Available from:
    1. Scholl I, LaRussa A, Hahlweg P, Kobrin S, Elwyn G. Organizational- and system-level characteristics that influence implementation of shared decision-making and strategies to address them — a scoping review [Internet]. Implementation Sci 2018. Available from:
    1. Elwyn G, Légaré F, van der Weijden T, Edwards A, May C. Arduous implementation: Does the Normalisation Process Model explain why it’s so difficult to embed decision support technologies for patients in routine clinical practice [Internet]. Implementation Sci 2008. Available from:
    1. Gravel K, Légaré F, Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: a systematic review of health professionals’ perceptions [Internet]. Implementation Sci 2006. Available from:
    1. Uy V, May SG, Tietbohl C, Frosch DL. Barriers and facilitators to routine distribution of patient decision support interventions: a preliminary study in community-based primary care settings. Health Expect; 2014;17:353–364. Wiley Online Library. Available from:
    1. Holmes-Rovner M, Valade D, Orlowski C, Draus C, Nabozny-Valerio B, Keiser S. Implementing shared decision-making in routine practice: barriers and opportunities. Health Expect; 2000;3:182–191. Wiley Online Library. Available from:
    1. Stacey D, Pomey M-P, O’Connor AM, Graham ID. Adoption and sustainability of decision support for patients facing health decisions: an implementation case study in nursing [Internet]. Implementation Sci 2006. Available from:
    1. Feibelmann S, Yang TS, Uzogara EE, Sepucha K. What does it take to have sustained use of decision aids? A programme evaluation for the Breast Cancer Initiative. Health Expect. 2011;14:85–95. Available from:
    1. Schonberg MA, Jacobson AR, Aliberti GM, Hayes M, Hackman A, Karamourtopolous M, et al. Primary care--based staff ideas for implementing a mammography decision aid for women 75+: a qualitative study. J Gen Intern Med; 2019;34:2414–2420. Springer. Available from:
    1. O’Brien MA, Charles C, Lovrics P, Wright FC, Whelan T, Simunovic M, et al. Enablers and barriers to using patient decision aids in early stage breast cancer consultations: a qualitative study of surgeons’ views. Implement Sci. 2014;9:174. Available from:
    1. Myckatyn TM, Parikh RP, Lee C, Politi MC. Challenges and solutions for the implementation of shared decision-making in breast reconstruction. Plast Reconstr Surg Glob Open. 2020;8:e2645. Available from:
    1. Munro S, Manski R, Donnelly KZ, Agusti D, Stevens G, Banach M, et al. Investigation of factors influencing the implementation of two shared decision-making interventions in contraceptive care: a qualitative interview study among clinical and administrative staff. Implement Sci. 2019;14:95. Available from:
    1. Stacey D, Vandemheen KL, Hennessey R, Gooyers T, Gaudet E, Mallick R, et al. Implementation of a cystic fibrosis lung transplant referral patient decision aid in routine clinical practice: an observational study. Implement Sci. 2015;10:17. Available from:
    1. Klaassen LA, Friesen-Storms JHHM, Bours GJJW, Dirksen CD, Boersma LJ, Hoving C. Perceived facilitating and limiting factors for healthcare professionals to adopting a patient decision aid for breast cancer aftercare: A cross-sectional study. Patient Educ Couns. 2020;103:145–151. Available from:
    1. PDQ Adult Treatment Editorial Board . Breast Cancer Treatment (Adult) (PDQ®): Patient Version. PDQ Cancer Information Summaries [Internet] Bethesda (MD): National Cancer Institute (US); 2019.
    1. Treatment of Early-Stage Breast Cancer. JAMA. 1991;265(3):391–5. 10.1001/jama.1991.03460030097037.
    1. Elwyn G, Frosch D, Rollnick S. Dual equipoise shared decision making: definitions for decision and behaviour support interventions. Implement Sci. 2009;4:75. Available from:
    1. 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;18:986–993. Available from:
    1. Hurd TC, James T, Foster JM. Factors that affect breast cancer treatment: underserved and minority populations. Surg Oncol Clin N Am. 2005;14:119–130, vii. Available from:
    1. Chen JY, Diamant AL, Thind A, Maly RC. Determinants of breast cancer knowledge among newly diagnosed, low-income, medically underserved women with breast cancer [Internet]. Cancer. 2008. p. 1153–1161. Available from:
    1. McVea KL, Minier WC, Johnson Palensky JE. Low-income women with early-stage breast cancer: physician and patient decision-making styles. Psychooncology. 2001;10:137–146. Wiley Online Library. Available from:
    1. Polacek GNLJ, Ramos MC, Ferrer RL. Breast cancer disparities and decision-making among U.S. women. Patient Educ Couns. 2007;65:158–165. Available from:
    1. Durand MA, Yen RW, O’Malley AJ, Schubbe D, Politi MC, Saunders CH, Dhage S, Rosenkranz K, Margenthaler J, Tosteson ANA, Crayton E, Jackson S, Bradley A, Walling L, Marx CM, Volk RJ, Sepucha K, Ozanne E, Percac-Lima S, Bergin E, Goodwin C, MillerC, Harris C, Barth RJ Jr, Aft R, Feldman S, Cyr AE, Angeles CV, Jiang S, Elwyn G. What Matters most: randomized controlled trial of breast cancer surgery conversation aids across socioeconomic strata. Cancer. 2021;127(3):422–36. 10.1002/cncr.33248. Epub 2020 Nov 10.
    1. Hsu C, Liss DT, Westbrook EO, Arterburn D. Incorporating patient decision aids into standard clinical practice in an integrated delivery system. Med Decis Making. 2013;33:85–97. Available from:
    1. Durand MA, Alam S, Grande SW, Elwyn G. '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. 2016;6(2):e010008. Published 2016 Feb 2. 10.1136/bmjopen-2015-010008.
    1. Scalia P, Elwyn G, Durand M-A. “Provoking conversations”: case studies of organizations where Option GridTM decision aids have become “normalized” [Internet]. BMC Med Inform Decis Mak. 2017. Available from:
    1. Lloyd A, Joseph-Williams N, Edwards A, Rix A, Elwyn G. Patchy “coherence”: using normalization process theory to evaluate a multi-faceted shared decision making implementation program (MAGIC). Implement Sci [Internet]. 2013;8:102. Available from: 10.1186/1748-5908-8-102.
    1. Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013;13:117. Available from:
    1. Ritchie J, Lewis J, Nicholls CM, Ormston R. Qualitative Research Practice: A Guide for Social Science Students and Researchers [Internet]: SAGE; 2013. Available from: .
    1. Durand M-A, Yen RW, O’Malley AJ, Politi MC, Dhage S, Rosenkranz K, et al. What matters most: protocol for a randomized controlled trial of breast cancer surgery encounter decision aids across socioeconomic strata. BMC Public Health. 2018;18:241. Available from:
    1. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19:349–357. Available from:
    1. Elwyn G, Lloyd A, Joseph-Williams N, Cording E, Thomson R, Durand M-A, et al. Option Grids: shared decision making made easier. Patient Educ Couns. 2013;90:207–212. Available from:
    1. Alam S, Elwyn G, Percac-Lima S, Grande S, Durand M-A. Assessing the acceptability and feasibility of encounter decision aids for early stage breast cancer targeted at underserved patients [Internet]. BMC Med Inform Decis Mak 2016. Available from:
    1. Sudore RL, Schillinger D. Interventions to improve care for patients with limited health literacy. J Clin Outcomes Manag. 2009;16:20–29.
    1. Levie WH, Lentz R. Effects of text illustrations: A review of research. Educ Commun Technol. 1982;30:195–232. Springer US. Available from:
    1. Alberto PA, Fredrick L, Hughes M, McIntosh L, Cihak D. Components of visual literacy: teaching logos. Focus on autism and other developmental disabilities. 2007;22(4):234–43. 10.1177/10883576070220040501.
    1. Austin PE, Matlack R 2nd, Dunn KA, Kesler C, Brown CK. Discharge instructions: do illustrations help our patients understand them? Ann Emerg Med. 25:317–20. Available from:
    1. Hill B, Perri-Moore S, Kuang J, Bray BE, Ngo L, Doig A, Zeng-Treitler Q. Automated pictographic illustration of discharge instructions with Glyph: impact on patient recall and satisfaction. J Am Med Inform Assoc. 2016;23(6):1136–42. 10.1093/jamia/ocw019. Epub 2016 May 27.
    1. Guest G, Namey E, Chen M. A simple method to assess and report thematic saturation in qualitative research. PLOS ONE. 2020;15(5):e0232076. 10.1371/journal.pone.0232076.
    1. May CR, Finch T, Ballini L, MacFarlane A, Mair F, Murray E, et al. Evaluating complex interventions and health technologies using normalization process theory: development of a simplified approach and web-enabled toolkit [Internet]. BMC Health Serv Res 2011. Available from:
    1. May CR, Mair F, Finch T, MacFarlane A, Dowrick C, Treweek S, et al. Development of a theory of implementation and integration: normalization process theory. Implement Sci. 2009;4:29. Available from:
    1. May C, Finch T, Mair F, Ballini L, Dowrick C, Eccles M, et al. Understanding the implementation of complex interventions in health care: the normalization process model. BMC Health Serv Res. 2007;7:148. Available from:
    1. Inselman J, Branda M, Castaneda-Guarderas A, Gionfriddo MR, Zeballos-Palacios CL, Morris MM, et al. Uptake and documentation of the use of an encounter decision aid in usual practice: a retrospective analysis of the use of the statin/aspirin choice decision aid. Med Decis Mak. 2016;36:557–561. Available from:
    1. Fay M, Grande SW, Donnelly K, Elwyn G. Using option grids: steps toward shared decision-making for neonatal circumcision. Patient Educ Couns. 2016;99:236–242. Available from:
    1. LeBlanc A, Herrin J, Williams MD, Inselman JW, Branda ME, Shah ND, et al. Shared decision making for antidepressants in primary care: a cluster randomized trial. JAMA Intern Med. 2015;175:1761–1770. Available from:
    1. Seal RP, Kynaston J, Elwyn G, Smith PEM. Using an option grid in shared decision making. Pract Neurol. 2014;14:54–56. Available from:
    1. Dicicco-Bloom B, Crabtree BF. The qualitative research interview. Med Educ. 2006;40:314–321. Available from:
    1. Morgan-Trimmer S, Wood F. Ethnographic methods for process evaluations of complex health behaviour interventions. Trials. 2016;17:232. Available from:
    1. of Health USD, Services H. Prior HHS poverty guidelines and Federal Register references. Available from:
    1. Rapley T, Girling M, Mair FS, Murray E, Treweek S, McColl E, et al. Improving the normalization of complex interventions: part 1 - development of the NoMAD instrument for assessing implementation work based on normalization process theory (NPT) [Internet]. BMC Med Res Methodol 2018. Available from:
    1. Finch TL, Girling M, May CR, Mair FS, Murray E, Treweek S, et al. Improving the normalization of complex interventions: part 2 - validation of the NoMAD instrument for assessing implementation work based on normalization process theory (NPT) [Internet]. BMC Med Res Methodol 2018. Available from:
    1. Herrmann A, Mansfield E, Hall AE, Sanson-Fisher R, Zdenkowski N. Wilfully out of sight? A literature review on the effectiveness of cancer-related decision aids and implementation strategies. BMC Med Inform Decis Mak. 2016;16:36. Available from:
    1. Elwyn G, Rasmussen J, Kinsey K, Firth J, Marrin K, Edwards A, et al. On a learning curve for shared decision making: Interviews with clinicians using the knee osteoarthritis Option Grid. J Eval Clin Pract. 2018;24:56–64. Available from:
    1. Politi MC, Adsul P, Kuzemchak MD, Zeuner R, Frosch DL. Clinicians’ perceptions of digital vs. paper-based decision support interventions. J Eval Clin Pract. 2015;21:175–179. Available from:
    1. Bunzli S, Nelson E, Scott A, French S, Choong P, Dowsey M. Barriers and facilitators to orthopaedic surgeons’ uptake of decision aids for total knee arthroplasty: a qualitative study. BMJ Open. 2017;7:e018614. Available from:
    1. Bozic KJ, Chenok KE, Schindel J, Chan V, Huddleston JI 3rd, Braddock C 3rd, et al. Patient, surgeon, and healthcare purchaser views on the use of decision and communication aids in orthopaedic surgery: a mixed methods study. BMC Health Serv Res. 2014;14:366. Available from:
    1. Schubbe D, Scalia P, Yen RW, Saunders CH, Cohen S, Elwyn G, et al. Using pictures to convey health information: A systematic review and meta-analysis of the effects on patient and consumer health behaviors and outcomes. Patient Educ Couns. 2020; Available from:
    1. McCaffery KJ, Holmes-Rovner M, Smith SK, Rovner D, Nutbeam D, Clayman ML, et al. Addressing health literacy in patient decision aids. BMC Med Inform Decis Mak. 2013;13 Suppl 2:S10. Available from:
    1. Bhavnani V, Fisher B. Patient factors in the implementation of decision aids in general practice: a qualitative study. Health Expect 2010;13:45–54. Available from:
    1. O’Donnell S, Cranney A, Jacobsen MJ, Graham ID, O’Connor AM, Tugwell P. Understanding and overcoming the barriers of implementing patient decision aids in clinical practice. J Eval Clin Pract 2006;12:174–181. Available from:
    1. Silvia KA, Ozanne EM, Sepucha KR. Implementing breast cancer decision aids in community sites: barriers and resources. Health Expect 2008;11:46–53. Available from:

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