Rheumatic disease patients are overwhelmingly female, but there are very few patient-facing resources looking at pregnancy.
A central source of information looking at pregnancy and different rheumatic diseases could be a game changer for patients, according to a new study out of the US.
According to research published in The Journal of Rheumatology, while rheumatologists believe sexual and reproductive health is important to discuss with younger female patients, it’s not always clear what the best approach should be.
The study itself used focus group discussions among 12 rheumatologists and 10 rheumatology nurse practitioners to identify pain points for clinicians trying to manage patients’ fertility concerns.
“Many of the clinicians’ solutions were easily implementable, including pre-visit questionnaires to prepare patients to discuss family planning during the clinic visit, and posters prompting patients to initiate family planning conversations with rheumatologists,” the researchers wrote.
“However, even if these conversations were initiated, clinicians acknowledged that some of their knowledge gaps around contraception, medication safety during pregnancy and lactation, abortion, and pregnancy management might undermine the effectiveness of these conversations.”
There were also concerns around the fact that doctors already tend to be stretched for time during consults, and patients’ ability to retain information after the consult.
Most of the participants agreed on strengthening ties with colleagues working in obstetrics, whether that looked like multidisciplinary teams or less formal electronic consultation pathways used as needed.
“I think it reaffirms the premise of working in a multidisciplinary team where possible and having pathways of knowing exactly who to refer to or who you might be able to work with for managing complex pregnancies,” early-career rheumatologist Dr Abhishikta Dey told Rheumatology Republic.
Dr Dey, who has a special interest in rheumatic disease in pregnancy, said the study had gotten her thinking about the need for more patient-facing resources.
“From the clinician perspective, we have guidelines for what we should do, although they are guidelines and every patient is different,” she said.
“But from the patient’s perspective, I guess they may go on to forums and the like to get their information.”
If rheumatologists were able to meet that need in a more formal way, it could potentially help patients save time and ensure they only get information relating to their specific disease.
The Journal of Rheumatology study participants were heavily in favour of creating brochures and pamphlets for patients, as well as a single website that combines sexual and reproductive health information relevant to a rheumatology context for clinicians.
“Patients only tend to remember 40% of what’s talked about in a busy clinic where you have many other issues that you may need to be talking about,” Dr Dey said.
“I think [brochures] are really useful because then you can provide information that they can then read at a later time.”
