Ilona Fridman1,2, Lok Chan2, Jennifer Thomas3, Laura J Fish4, Margaret Falkovic3, Jacquelyn Brioux5, Nicole Hunter6, Daniel H Ryser7, E Shelley Hwang8,9,10, Kathryn I Pollak3,8, Kevin P Weinfurt3,8, Marc D Ryser11,12,13. 1. Fuqua Business School, Duke University, Durham, NC, USA. 2. Social Science Research Institute, Duke University, Durham, NC, USA. 3. Department of Population Health Sciences, Duke University Medical Center, Durham, NC, USA. 4. Department of Family Medicine and Community Health, Duke University Medical Center, Durham, NC, USA. 5. , Alexandria, VA, USA. 6. School of Arts and Sciences, Duke University, Durham, NC, USA. 7. , Solothurn, SO, Switzerland. 8. Cancer Prevention and Control, Duke Cancer Institute, Durham, NC, USA. 9. Department of Surgery, Duke University Medical Center, Durham, NC, USA. 10. Cancer Risk, Detection, and Interception, Duke Cancer Institute, Durham, NC, USA. 11. Department of Population Health Sciences, Duke University Medical Center, Durham, NC, USA. marc.ryser@duke.edu. 12. Cancer Risk, Detection, and Interception, Duke Cancer Institute, Durham, NC, USA. marc.ryser@duke.edu. 13. Department of Mathematics, Duke University, Durham, NC, USA. marc.ryser@duke.edu.
Abstract
PURPOSE: Patients diagnosed with ductal carcinoma in situ (DCIS) face trade-offs when deciding among different treatments, including surgery, radiation, and endocrine therapy. A less chosen option is active monitoring. While evidence from clinical trials is not yet available, observational studies show comparable results for active monitoring and immediate treatment on cancer outcomes in select subgroups of patients. We developed and tested a web-based decision support tool (DST) to help patients explore current knowledge about DCIS and make an informed choice. METHODS: The DST, an interactive web application, was informed by literature reviews and formative work with patients, breast surgeons, and health communication experts. We conducted iterative interviews to evaluate the DST content among women with and without a history of breast cancer, as well as breast cancer experts. For usability testing, we conducted an online survey among women with and without a history of breast cancer. RESULTS: For content evaluation, 5 women with and 10 women without a history of DCIS were interviewed. The sample included 11 White and 4 non-White women, with a mean age of 64 years. The expert sample consisted of 5 attendings and a physician assistant. The feedback was used to add, clarify, or reorganize information in the DST. For usability testing, 22 participants with a mean age of 61 years were recruited including 15 White and 7 Black women and 6 women with a history of DCIS. The mean usability score was 3.7 out of 5. Most participants (86%) found that the DST provided unbiased information about treatments. To improve usability, we reduced the per-page content and added navigation cues. CONCLUSION: Content and usability evaluation showed that the DST helps patients explore trade-offs of active monitoring and immediate treatment. By adopting a personalized approach, the tool will enable informed decisions aligned with patients' values and expectations.
PURPOSE: Patients diagnosed with ductal carcinoma in situ (DCIS) face trade-offs when deciding among different treatments, including surgery, radiation, and endocrine therapy. A less chosen option is active monitoring. While evidence from clinical trials is not yet available, observational studies show comparable results for active monitoring and immediate treatment on cancer outcomes in select subgroups of patients. We developed and tested a web-based decision support tool (DST) to help patients explore current knowledge about DCIS and make an informed choice. METHODS: The DST, an interactive web application, was informed by literature reviews and formative work with patients, breast surgeons, and health communication experts. We conducted iterative interviews to evaluate the DST content among women with and without a history of breast cancer, as well as breast cancer experts. For usability testing, we conducted an online survey among women with and without a history of breast cancer. RESULTS: For content evaluation, 5 women with and 10 women without a history of DCIS were interviewed. The sample included 11 White and 4 non-White women, with a mean age of 64 years. The expert sample consisted of 5 attendings and a physician assistant. The feedback was used to add, clarify, or reorganize information in the DST. For usability testing, 22 participants with a mean age of 61 years were recruited including 15 White and 7 Black women and 6 women with a history of DCIS. The mean usability score was 3.7 out of 5. Most participants (86%) found that the DST provided unbiased information about treatments. To improve usability, we reduced the per-page content and added navigation cues. CONCLUSION: Content and usability evaluation showed that the DST helps patients explore trade-offs of active monitoring and immediate treatment. By adopting a personalized approach, the tool will enable informed decisions aligned with patients' values and expectations.
Authors: Adele Francis; Jeremy Thomas; Lesley Fallowfield; Matthew Wallis; John M S Bartlett; Cassandra Brookes; Tracy Roberts; Sarah Pirrie; Claire Gaunt; Jennie Young; Lucinda Billingham; David Dodwell; Andrew Hanby; Sarah E Pinder; Andrew Evans; Malcolm Reed; Valerie Jenkins; Lucy Matthews; Maggie Wilcox; Patricia Fairbrother; Sarah Bowden; Daniel Rea Journal: Eur J Cancer Date: 2015-08-18 Impact factor: 9.162
Authors: Madeleine T King; Zoë E Winters; Ivo A Olivotto; Andrew J Spillane; Boon H Chua; Christobel Saunders; A Helen Westenberg; G Bruce Mann; Petrina Burnett; Phyllis Butow; Claudia Rutherford Journal: Eur J Cancer Date: 2016-12-15 Impact factor: 9.162
Authors: Marc D Ryser; Mathias Worni; Elizabeth L Turner; Jeffrey R Marks; Rick Durrett; E Shelley Hwang Journal: J Natl Cancer Inst Date: 2015-12-17 Impact factor: 13.506
Authors: Marc D Ryser; Donald L Weaver; Fengmin Zhao; Mathias Worni; Lars J Grimm; Roman Gulati; Ruth Etzioni; Terry Hyslop; Sandra J Lee; E Shelley Hwang Journal: J Natl Cancer Inst Date: 2019-09-01 Impact factor: 13.506
Authors: Emma J Groen; Lotte E Elshof; Lindy L Visser; Emiel J Th Rutgers; Hillegonda A O Winter-Warnars; Esther H Lips; Jelle Wesseling Journal: Breast Date: 2016-09-23 Impact factor: 4.380
Authors: E Shelley Hwang; Terry Hyslop; Thomas Lynch; Elizabeth Frank; Donna Pinto; Desiree Basila; Deborah Collyar; Antonia Bennett; Celia Kaplan; Shoshana Rosenberg; Alastair Thompson; Anna Weiss; Ann Partridge Journal: BMJ Open Date: 2019-03-12 Impact factor: 2.692
Authors: Maartje van Seijen; Esther H Lips; Alastair M Thompson; Serena Nik-Zainal; Andrew Futreal; E Shelley Hwang; Ellen Verschuur; Joanna Lane; Jos Jonkers; Daniel W Rea; Jelle Wesseling Journal: Br J Cancer Date: 2019-07-09 Impact factor: 7.640
Authors: Renée S J M Schmitz; Erica A Wilthagen; Frederieke van Duijnhoven; Marja van Oirsouw; Ellen Verschuur; Thomas Lynch; Rinaa S Punglia; E Shelley Hwang; Jelle Wesseling; Marjanka K Schmidt; Eveline M A Bleiker; Ellen G Engelhardt Journal: Cancers (Basel) Date: 2022-07-02 Impact factor: 6.575