Table 6 Themes discerned from the evaluation of oncofertility decision support resources and illustrative quotes from patient and provider participants

Challenges on the delivery and use of fertility information in clinical practice

Fertility information

“I feel that [providers] don’t want to give you as much information as maybe you would like, I know that they had suggested to me that they thought it would be overwhelming to give too much information and I feel for my personality it was the opposite. I didn’t have enough information. I might not have made the same decision actually…” (Patient, 02)

“…I do find it a little bit misleading some of the information that can be provided on resources…potentially having a baby in the future versus being alive is often a dilemma that our patients face…I don’t think that you can convey that kind of information very well in an online tool…there’s something about conveying that information in kind of a verbal way that I think is needed.” (Provider, 06)

Self-advocacy for fertility discussions

“So basically it’s some information I found on the internet that I learned about the chemotherapy and the fertility issues so I had to bring it up myself to the oncologist.” (Patient, 03)

Ideal delivery and timing of decision support resources in clinical practice

Timing of resource delivery

“…by the time [fertility preservation] was [presented] than everything was just crunched and everything seemed like a rush because…it was presented like when they had a treatment plan right. So that’s why I think it’s really important to get [a resource] like basically at diagnosis right or you know when they sit you down so that you can start thinking about it. And you have the time frames in front of you, so you know how it will affect your treatment plan.” (Patient, 04)

“… I think it would be great, if they would get [a resource] on day 1 essentially and really read it before they come to their fertility consult.” (Provider, 01)

“I would say [the idea time for a resource is] when discussing their treatment plan, I think at diagnosis is too early. I often see women who have gone to fertility specialists…and they didn’t need it in the first place because they were never going to get chemo...” (Provider, 06)

Perspectives of information needs for informed fertility decision-making

Background information

“I found [the resource] really useful, I like the part where they said not all treatments could affect your ability to have kids and also if your period returns it doesn’t necessarily mean that your ovaries are as effective, because I think that sometimes is a misconception. So, I think it’s pretty good.” (Patient, 06)

“My feeling is that patients should have as little information as they absolutely need, they are completely overwhelmed with information so, I don’t actually think they need to know how chemotherapy destroys the ovaries, I think they believe us if we say it does, so I think it’s a bit more information than they need…” (Provider, 03)

After treatment parenthood options

“…Even though [adoption] like, it’s really you don’t want to look at that option…but I think it’s good that it’s included because it just gives you like even if it’s something that you choose not to at least you kind of, you are aware of it…” (Patient, 04)

“… I think people hopefully know that they can adopt or foster children, or just not have children so, it’s not necessarily bad to have it in there but I think it’s maybe less useful.” (Provider, 07)

Value of option grids

“I think the grid at first is great as a starting point and then if you do want more information something like a larger grid maybe or a website or a pamphlet regarding any additional options that are available with more detailed information.” (Patient, 08)

“… I definitely think [the Option Grids are] a good starting point though but, you know, there’s things that you are never going to build into a grid like…your partner or your support system, support, any kind of like emotional aspects that you are not really going to capture I don’t think, not that, nor should you but this is just sort of one piece of the puzzle.” (Provider, 07)

Factors influencing FP decisions

Emotional support

“I think the emotional support… I don’t think they realize how emotionally taxing it is and also how taxing it is on your body and then you say you’re going into treatment…we definitely need some more emotional support.” (Patient, 02)

“… with medical counselling [patients] will be presented [their] options based on [their] personal situation but then the choice from that point quite often is emotional.” (Provider, 02)