Table 4 Participant-identified needed resources

Credible, doctor-provided information about PCOS

Pamphlets, websites Holly, aged 29: “But I mean if the doctors could just have a pamphlet or direct people to these sorts of things, that would be great… Even like a pamphlet, it's just understanding that like irregular menstruation is not the only thing that happens. You can have weight gain, you can have insulin resistance, you'll have cystic acne, and that sort of thing. Not just by doing all my own research I'm finding out all these different things.”

Multilingual formats Lily, aged 18: “With my parents, I guess there’s a slight language barrier as they speak Chinese and I speak English primarily. My Chinese isn’t amazing… I found it really difficult to have the conversation with them because of the language barrier. I would definitely have appreciated multi-language resources. Really, the only resources I found were in English. But I’m not sure if that’s because I only speak in English, I can only read in English. It would be extremely beneficial if I had those resources for languages.”

Take-home reading material, in multilingual formats, is needed so that even if the doctor does not have much time for a sit-down, the patients can learn on their own time from a reliable source

More PCOS specialists

PCOS clinics Emma, aged 29: “There are no clinics they send you to when you're diagnosed with PCOS where they're like this is a clinic where they have actual experts in this topic that you can meet with… It would be very nice if there was like "oh there's this PCOS clinic and you can be referred to this and then they will do things like look at your hormone levels and they will know to ask those questions." That would be very very helpful because it would give you the ability to manage your body and your disorder by letting you refer to experts without having to start from square one… So I think that it would be very nice if there were more specialists in reproductive health issues that you could see well before you were actively trying to get pregnant.”

A lot of participants had positive experiences with fertility specialists, who they found to be well-versed on PCOS, perhaps due to seeing many patients with PCOS seeking fertility treatment. A need arose for greater access to PCOS specialists, in PCOS-specific clinics and otherwise

More PCOS research

Treatments Jamila, aged 26: “But I really wish that someone would actually be able to find some cure for it. And to do more funding to find more research on it. On the Internet, it's the same thing that I keep finding being repeated but hardly much new things are there. So that's the frustrating part, not being able to find an answer.”

Menopause Lucy, aged 47: “I have tried to see if there's any research out there on it and there is virtually nothing on PCOS and menopause or perimenopause… What we forget is this isn’t a condition that goes away. It stays with you. And the little research I have found is that “oh yeah symptoms get worse when you go into menopause” and suddenly you're dealing with even more severe—you know how they say diabetes and heart disease are a problem when you have PCOS, well it even ups that much more when you are in menopause.”

Participants wanted more research to come out about PCOS treatment options to help them understand and manage their condition better. Especially with regards to treatment options for women with PCOS in peri- and post-menopause

Age-specific support groups & mental health supports

Age-specific support groups Vanessa, aged 63: “I think it would need to be age appropriate first. Like I wouldn't want to hang out with a bunch of 20-year olds. I think their needs are different. Their focus is different. But yeah I would like something like that.”

Counsellors with an understanding of PCOS Lucy, aged 47: “I would have appreciated a support group and even counselors who had an understanding at least of PCOS to talk to. I think that probably would have helped the most.”

Local support groups were a service that many women wanted to be provided by either organizations or health providers. Specifically, support groups for women in a similar life stage and/or with similar treatment goals. Some participants also wished for counsellors or doctors to be present at the support groups to provide professional advice and learn from patient experiences