Results at a patient level
The questionnaire was filled in by 31 women with IBD and 58 women with RD. One response in the IBD group and six responses in the RD group were incomplete (missing 3.4%). The baseline characteristics of both groups are shown in table 1. The majority of our patients were of Western origin. In total 55% (n=17) of the women in the IBD group had CD and 42% (n=13) had CU. The most common RD among our patients were RA (36%, n=21) and ankylosing spondylitis (21%, n=12). Regarding obstetric history, previous miscarriages were reported in 19% (n=6) of our women with IBD and 32% (n=18) of our women with RD. At the time of enrollment 32% (n=10) of the women in the IBD group and 45% (n=26) of the women in the RD group were pregnant.
Facilitators and barriers of PCC reported by patients with IBD and RD are shown as an additional file (additional file 1). On a personal level, multiple facilitators were found. Women in both groups said visiting a PCC consultation would be easy to enter ((90%, n=28 IBD) and (86%, n=50 RD)). The majority of women with IBD and RD felt comfortable visiting a PCC consultation and did not think it took too much time. An important reason to visit a PCC consultation was a good preparation for pregnancy which was reported by 74% (n=23) of women with IBD and 74% (n=43) of women with RD.
On a medical level 4 out of 13 IBD patients with a previous pregnancy and 6 out of 36 previously pregnant RD patients had a pregnancy that was different to expectations. Further, on a medical level, referral from their disease specific specialist was considered of higher value to visit a PCC consultation in both groups compared to advice from a gynecologist, midwife or GP.
On an organizational level the majority of the patients in both groups prefer to see PCC posters everywhere. On a financial level 90% (n=28) of women with IBD and 85% (n=49) of women with RD said PCC consultations should be available for free.
In both groups the preferred healthcare professional to provide PCC was the gynecologist and in second place they would like to receive PCC from their disease specific specialist (gastroenterologist or rheumatologist). The most ideal form of a PCC consultation was a personal combined consultation from both their disease specific specialist and gynecologist (Table 2).
Knowledge, attitude and actions towards general PCC of women with IBD and RD are described in an additional file (additional file 2). General knowledge on folic-acid supplementation was up to date in both groups as more than 80% understood the benefits of folic-acid supplementation. General knowledge on the effect of smoking on fertility was not up to date as less than 80% knew about the association with infertility.
The questionnaire also focused on the content of information patients would like to receive during a PCC consultation. Most of them wanted to receive information about medication use during pregnancy (97%, n=30 IBD; 78%, n=45 RD). Other important topics to be discussed were information about their disease after delivery and breastfeeding when using medication. In total 71% (n=22) of our women with IBD and 35% (n=20) of our women with RD visited a PCC consultation. They all felt that their questions were answered adequately and the majority found the consultation useful.
Results at a professional level
The online questionnaire was sent to healthcare professionals from the involved departments. Responses were received from 39 professionals from the department of Obstetrics and Gynecology, three from the department of Gastroenterology and four from the department of Rheumatology. Not all questionnaires were filled in completely (missing 5.4%). The baseline characteristics of the respondents are shown as an additional file (additional file 3).
Facilitators and barriers of PCC were identified on an organizational and personal level (additional file 4). At an organizational level, shortage of healthcare professionals (62%, n=24) and lack of time (54%, n=21) to provide PCC were reported as barriers by respondents from the department of Obstetrics and Gynecology. Only one respondent from the department of Gastroenterology and none of the respondents from the department of Rheumatology reported lack of time. At a personal level 64% (n=25) of the obstetric professionals agreed that from a healthcare professionals’ perspective, PCC was applicable to their patients which was in agreement with the respondents from the departments of Rheumatology and Gastroenterology.
Knowledge, attitude and actions of healthcare professionals towards PCC are described in an additional file (additional file 5). From the Obstetrics and Gynecology department 41% of the respondents (n=16) felt they had sufficient knowledge and skills to provide PCC. For the departments of Rheumatology and Gastroenterology this was the case in respectively 33% (n=1) and 75% (n=3).
Figure 1 (insert figure 1) shows which healthcare professionals were considered most suitable by healthcare professionals to provide PCC. In both women with IBD and RD the gynecologist and the disease specific specialist were mentioned as most suitable. Midwives and GPs were considered less suitable to provide PCC.