Background: Rural cancer patients often travel long distances to access specialty care. The time and cost of travel and spending an extended period of time away from home can be [ Read More ]
October 2016 VOL 7, NO 9
6. Using the Power of Design to More Effectively Communicate with Metastatic Breast Cancer Patients, the “Dandelion Toolkit”
Corrine Ellsworth Beaumont, PhD1; Katherine Crawford-Gray, MBA, MSc2
1WorldwideBreastCancer.com; 2Metastatic Breast Cancer Alliance
Background: Metastatic breast cancer (MBC) patients receive an overwhelming amount of information at the time of diagnosis, with most of the information transferred through oral conversations and abstract medical terminology that’s difficult for patients to understand. Oral conversations have a low accuracy memory recall of 14%.1 However, when visuals are integrated into discussions, the accurate memory recall of conversations has a median of 80%.2 We ask, “How can nurse navigators help patients feel informed, empowered, and more easily communicate with their healthcare team on a more equal level through using a visual toolkit to guide the discussions?”
This paper describes both the process and outcomes of developing a visual conversation aid, the “Dandelion Toolkit.”
While several resources3-6 offer advice and guidelines on how to develop materials for specific audiences, a holistic, patient-centered, defined framework could help nurse navigators structure the development and testing of materials.
Objectives: 1) Develop a visual aid for helping MBC patients and healthcare providers (HCPs) improve their communication during initial diagnosis and treatment discussions; 2) design a set of visual tools to communicate in a time-effective way and appeal to a wide demographic of MBC patients of various literacy levels; and 3) increase patient engagement in treatment decisions despite emotional distress.
Toolkit Development Methods: The toolkit was developed following the “U.S.E.R.” (User, System, Establish, Realize) Design Thinking Framework.7 This patient-centered, mixed-method approach used action research, iterative prototyping, interviews, and co-creative methods to identify problems and develop solutions within the health system, working with >80 MBC patients and HCPs.
Results: The U.S.E.R. design process offered an organized and holistic framework to involve both MBC patients and HCPs in the development of a communication tool. User testing was done throughout the development, which resulted in an evidence-based solution delivered in a short time frame (2 months). The design outcome was a visual metaphor that visualized the behavior, subtype, and treatment options for metastatic cancer. Initial testing of the toolkit in a community cancer clinic revealed it was highly valued by patients and HCPs. HCPs who used the toolkit found the visual approach offered a better method for educating patients as opposed to oral communication alone; it aided in simplifying treatment options, managing patient anxiety, and navigating difficult topics. Patients found that the metaphor helped them to understand more comprehensively what a metastatic diagnosis meant and the spectrum of treatments; the toolkit helped them navigate conversations with other healthcare professionals and family members and to feel an improved sense of control.
Conclusions: Initial testing demonstrated the effectiveness of the toolkit developed with the U.S.E.R. Design Thinking Framework for both HCPs and MBC patients. To more fully investigate the toolkit, it is now being used in clinical trials across 7 sites nationwide and internationally. This will provide data to better understand the toolkit’s impact on patient knowledge, HCP effectiveness, and best practices for integrating visuals into discussions for improved patient experience.
- Houts P, Witmer JT, Egeth HE, et al. Using pictographs to enhance recall of spoken medical instructions. Patient Educ Couns. 2001;43:231-242.
- Kessels RP. Patients’ memory for medical information. J R Soc Med. 2003;96:219-222.
- Simonian K, Sanders DB, Murillo VE, et al. Breast Health and Breast Cancer Informational Needs of Young Women and Women of Color 40 and Older. Susan G. Komen for the Cure. 2007.
- NHS. Design advice. NHS Brand Guidelines. www.nhsidentity.nhs.uk/all-guidelines/guidelines/general-practitioner/practice-leaflets/design-advice. June 25, 2008.
- Szebeko D. Co-designing for communications and services in the healthcare environment. Journal of Public Mental Health. 2005;4(4):42-47.
- 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;73:465-472.
- Beaumont C. Design Thinking in Healthcare: Developing Patient-Centred Communication Materials for Breast Cancer Detection. PhD Thesis. 2011. Brunel University, England.
48. Restoring Quality of Life and Hematologic Function with Ibrutinib in Treatment-Naive Patients with Chronic Lymphocytic Leukemia in the RESONATE-2 Study
Objectives: Disease symptoms and treatment complications can profoundly affect quality of life (QOL) in patients (pts) with chronic lymphocytic leukemia (CLL). Ibrutinib (ibr), a B-cell receptor pathway inhibitor, improved QOL [ Read More ]