Skip to main content

Table 4 Themes discerned from the alpha testing, illustrative quotes from patient and provider participants and resulting modifications made to the BEFORE (Begin Exploring Fertility Options, Risks, and Expectations) decision aid

From: The "Begin Exploring Fertility Options, Risks and Expectations" (BEFORE) decision aid: development and alpha testing of a fertility tool for premenopausal breast cancer patients

Theme Modifications made Illustrative quotes from participants
Layout and graphics 1. Modified two photos that showed women laughing and smiling to diverse couples
2. Modified a graph that showed fertility decline with chemotherapy to show only natural declines in fertility as a person ages. Also, the graph was adjusted to a larger size for easier viewing.
3. In the 'test myself section' of the online decision aid, the correct answers were highlighted
4. Darkened the colour of the national drop-down table row and separated it from the list to emphasize the row.
1a. In regards to family types, I don’t believe I saw couples. If couple are included, perhaps consider including both oppose sex relationships and same-sex relationships. (Email, Patient 07)
1b. “…they all look very happy to me but it is multi-cultural. I just felt that this is often not a topic that women smile about, they are terrified about this…” (Interview, HCP 03)
2. As for the graph, it looks like the chance for fertility by age 37 is absolutely zero [with chemotherapy] and that is definitely not true so I don’t think it’s acceptable in its current format. I’ve had several patients get pregnant after chemo in their late 30’s or even very early 40’s. (Email, HCP 06)
3. …feedback sentences on quiz page should be a different colour than the answers. (Email, Patient 07)
4. Emphasize the national drop-down menu in the drop-down table of resources. People go straight to their province and do not realize that there are additional resources in the national section (FG, Patients 01, 02, 03)
Comprehensibility and acceptability of information 1. Modified the resource list to accurately represent all supports provided by each group
2. Test myself questions were reviewed and modified
1. “The Canadian Breast Cancer Society is now part of the Canadian Cancer Society … somewhere just capturing the nature of peer to peer support…if you don’t mention the peer to peer support you are missing the flavor of what the Canadian Cancer Society does.” (Interview, HCP 04)
2. …I might add a couple more [questions] and ask some specific questions to make sure that the women understand. The correct/incorrect answers will give the health care team and indication of what they need to explain further/if this woman is ready to make a decision. (Email, Expert Content Reviewer)
3. Modified complex terminology (e.g., ‘per embryo transfer’ was modified to ‘each time embryos are put into the womb’). Completed health literacy tests and the patient education specialist reviewed the decision aid
4. Modified icon arrays to show each fertility option in a separate table. Experts confirmed estimated pregnancy success rates for each option and disclaimers were highlighted
3. “… I find it is maybe a little bit too complex. I think it could be simplified a little bit…I think the language is written at too high a level.” (Interview, HCP 02)
4. “…I find I am a bit confused. And if I am confused I would think someone else is confused… it looks like in fact if you freeze your embryos you have more chance of getting pregnant by waiting and seeing than embryo freezing because that is what it looks like when you have them juxtaposed…” (Interview, HCP 04)
Usability 1. Emphasized the navigation buttons in the online version
2. Modified the title of the navigation buttons to be more reflective of content
3. Moved the section menu so it is more apparent to users
4. Emphasized the ‘Next’ button for each page
5. Emphasized hyperlinks to information on cost and experimental fertility options
1. The blue buttons at the top of the decision aid where patients could download the paper decision aid and access the values clarification method were not noticed until specifically directed to the buttons. (FG, Patients 01, 02, 03)
2. “I don’t know if care kit is the right term for [the values clarification method]…maybe a decision checklist or something. It is not a kit to help me actually move forward with my treatment.” (Interview, Patient 04)
3. [referring to the section menu] “…no I didn’t actually…I am just noticing that now.” (Patient, 04)
4. The “Next” button at the bottom of the page was hard to see due to the similarities in colour against the background (FG, Patients 01, 02, 03)
5. Emphasize hyperlinks to access more information (e.g., “less common and experimental fertility options” and “Cost of fertility preservation page.”) (FG, Patients 01, 02, 03)
Use and delivery in clinical practice No modifications made to the BEFORE decision aid based on this theme
  1. Abbreviations: FG, focus group; HCP, health care provider