Reference
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Country
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Aim
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Sample
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Method
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Findings
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IBD Negatively impacts sexual, reproductive and social health.
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Calvet et al. [11]
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Spain
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To assess patients’ perceptions of the impact of UC on social and professional lives.
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585 patients
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Quantitative
cross-sectional survey
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Participants completed the UC-LIFE survey.
High proportions of patients considered their disease “sometimes”, “frequently” or “mostly/always” influenced leisure activities (65.1%), recreational or professional activities (57.6%), or relationships with relatives or friends (9.9%). 7.4% of men and 28.4% of women reported that UC had influenced their decision to have children. The percentages of patients reporting a negative impact of UC were statistically significantly greater in women than in men (p<0.001).
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Knowles et al. [16]
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Australia
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To characterize the relationships between illness
perceptions, body image and self-consciousness, sexual health (sexual problems and sexual
satisfaction), anxiety and depression, and marital and family functioning in patients with IBD.
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61 females
13 males
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Quantitative
Online survey
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The Sexual Problems Scale (SPS) was used to assess sexual arousal and orgasm. Body Image and Self-Consciousness During Intimacy Scale (BISC) assessed levels of concern associated with body image during sex. Females reported significantly more sexual problems than males (F(1,72)=39.15, p<0.001). 7 males (53.9%) and 51 females (83.6%) identified a lack of sexual interest. 34 females (55.7%) identified experiencing difficulty having an orgasm.
Unexpectedly, the direct influence of gender suggested that being female was associated with greater sexual problems.
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Roseira et al. [17]
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Portugal
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To assess sexual quality of life (SQoL) in IBD patients compared with healthy controls.
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458 females
389 males
399 Healthy controls (HC)
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Quantitative
cross-sectional study
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SQoL was assessed using the Sexual Quality of Life questionnaire Male/Female (SQoL M/F),
Inflammatory bowel disease patients reported lower SQoL (men: 77.29 vs 83.83; P < 0.001; women: 70.40 vs 81.63; P < 0.001) compared with controls. Women with IBD reported being satisfied with the frequency of sexual activity (78%). In women only, depression was significantly associated with SQoL (β, –1.97; 95% CI, 2.31 to 1.63; P < 0.001).
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IBD and Sexual Functioning
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Bel et al. [18]
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Netherlands
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To evaluate sexual function and its association with depression among
patients with IBD
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168 females
119 males
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Quantitative
Web based survey
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Sexual function in women was assessed with the Female Sexual Function Index (FSFI)
Female patients with active disease reported more lubrication problems and more dyspareunia compared with patients in remission and controls. In the total group of women with IBD, 51.2% had sexual dysfunction, against 44.3% of the control group, χ2 (1) = 1.22, P > 0.05.
Of the women with active IBD, 63.1% had sexual dysfunction (total score < 26.55), against 44% of women in remission, χ2 (1) = 5.74, P < 0.05. Patients with more active disease reported more sexual problems.
Patients reporting higher quality of life reported less sexual problems. Patients scoring higher on fatigue, depression, and negative body image reported more sexual problems.
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Boudiaf et al. [19]
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France
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To compare the prevalence of sexual dysfunction (SD) in Crohn's disease
patients with active perianal disease (PD) versus controls without active PD.
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64 women,
33 men
238 controls
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Quantitative
survey-based cross-sectional study
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Women completed the Female Sexual Function Index (FSFI). SD was found in 66% of the female patients versus 50% of the controls (P = 0.04). The predictive factor most strongly associated with SD in women was severely active perianal disease [PD]. Pain, soiling and faecal incontinence were the main complaints in both men and women. Only 27% of women had discussed sexual problems with their gastroenterologist or proctologist.
More than half of the women with PD wanted information about the impact of PD CD on their intimacy and sexual health (56%).
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Bulut et al. [25]
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Turkey
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To show the effect of disease type and activity on sexual life and QoL in patients with IBD.
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122 Pts with IBS
42 Control
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Quantitative
cross-sectional study
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All participants completed the Arizona Sexual Experience Scale (ASEX). The mean ASEX scores of women with UC (19.59±7.59) and CD (19.38±6.27) were both significantly higher than those of the control group (15±4.76). Women in the control group had better sexual desire, arousal, vaginal lubrication, and orgasm than those in the UC and CD groups. The ASEX mean score was higher in women with active disease.
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Domislovic et al. [20]
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Croatia
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To assess the prevalence of sexual dysfunction (SD) and erectile dysfunction (ED), QOL, their predictors, and age-related dynamic in IBD patients.
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122 male pts
80 female pts
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Quantitative
cross-sectional
study
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Female sexual functioning was assessed using Female Sexual Functioning Index (FSFI). QOL was assessed using IBDQ-32
through bowel, systemic, emotional and social domains. Female patients with SD had significantly lower total QOL score and systemic, emotional and social QOL score.
Prevalence of SD was considerably high in women (75.0%). No difference in SD or ED rates between CD and UC were observed.
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Eluri et al. [27]
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United States
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To evaluate patient-reported interest in sexual activity and satisfaction with sex life in a large cohort of IBD patients.
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3811 individuals
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Quantitative
cross sectional study
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Sexual Function and Satisfaction (SexFS) scale was used. 2581 (68%) individuals completed the survey. The mean PROMIS score for interest in sexual activity was 41 for women with CD 40 for women with UC, comparable to the US general population mean of 42.
Satisfaction with sex life was lower for women with IBD (mean T scores of 47 for CD and 46 for UC) compared to the population mean of 49, p<0.01. Factors associated with lower sexual interest scores in patients with UC and CD were female sex, increasing age, and fatigue (p<0.05 for all). Increasing anxiety was also found to be significantly associated with lower sexual interest scores in patients with UC (p=0.03). Sexual interest and satisfaction scores were positively associated with disease-specific quality of life.
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Marín et al. [21]
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Spain
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To evaluate the prevalence and predisposing factors of sexual dysfunction among IBD patients, and their own
perception.
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202 females
153 males
200 controls
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Quantitative cross sectional study
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Sexual function was assessed using the Female Sexual Function Index (FSFI) in women.
39 % of the women and 35 % of the men who were sexually active at the time of IBD diagnosis acknowledged that the disease changed (worsened) their sexual life.
A greater proportion of women than men felt that sexual desire had decreased after IBD diagnosis (47 vs. 29 %, P = 0.001).
46 % of the women and 30 % of the men declared that their sexual satisfaction worsened after disease diagnosis (P = 0.044).
Among those patients who felt that intimacy had worsened because of IBD, fatigue was the main complaint in both men and women.
Women attributed worsening intimacy female disease-related symptoms (i.e., abdominal pain, diarrhea, or incontinence). 61% percent of the women and 46 % of the men declared that information about the impact of IBD on intimacy and sexuality should be given at IBD diagnosis. 49% of the patients with IBD presented an abnormal FSFI score as defined by a total score lower than 26 points, versus only 19 % of the controls (P\0.0001).
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Nisihara et al. [13]
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Brazil
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To study the prevalence of sexual disorders in a sample of Brazilian male and female patients with IDB and its association with depression
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40 females & 40 males with IBD
112 controls
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Quantitative
cross sectional study
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Female Sexual Function Index (FSFI) assessed sexual function. Beck Depression Inventory-II was used to access depression. 82.5% of females had sexual dysfunction versus 45.8% in healthy controls (p = 0.0002; OR = 5.5; 95% CI 2.1–14.2). When the number of males with IBD with any degree of sexual dysfunction (70%) were compared with the number of females with IBD with any degree of sexual dysfunction (82.5%) no differences were found. Among females, 20% had mild, 17.5% moderate and 15% had severe depression.
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Nøhr et al. [29]
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Denmark
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To investigate the risk of sexual dysfunction in women with IBD
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38,011females
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Quantitative
cross-sectional study
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Sexual health questions were adapted from the Danish National Health Survey. Of the study population (38,011 women) 196 [0.5%] had CD and 409 [1.1%] had UC. Compared to women without IBD, women with UC did not have significantly decreased sexual function.
Women with CD had more difficulty achieving orgasm (adjusted odds ratio [aOR] 1.53; 95% confidence interval [CI] 1.02–2.30], increased dyspareunia [aOR 1.71; 95% CI 1.11–2.63] and deep dyspareunia [aOR 2.00; 95% CI 1.24–3.22].
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Rivière et al. [22]
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France
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To compare rates
of sexual dysfunction (SD) between IBD patients and healthy controls [HC]
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192 females
166 males
110 HC
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Quantitative
cross-sectional study
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Female Sexual Function Index (FSFI) assessed sexual function in participants.
In women, SD was identified in 103/192 [53.6%] IBD patients, 15/53 [28.3%] of HC [p < 0.01], and 38/49 [77.6%] IBS patients.
[p = 0.1 vs IBD] Predictors of SD were social and emotional functioning and anxiety in women. Female patients with IBD scored significantly lower than HC in sexual desire, arousal and orgasm [p < 0.01, p = 0.01, and p = 0.02, respectively]. Lubrication and dyspareunia scores in IBD patients were not significantly different from those of HC [p = 0.17 and p = 0.32, respectively]. In women, no difference of SD rate was observed between patients with active or inactive disease [53.2% vs 61.2%, p = 0.66]. 28.4% of women and 15.2% of men considered that the impact of their disease on their sexual function was negative.
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Shmidt et al. [23]
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United States
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To describe
sexual function at baseline and over time in a prospective inception cohort of adult women with IBD
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116 females
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Quantitative
Cross sectional study
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Female Sexual Function Index (FSFI) was used. Ninety-seven percent of women had sexual dysfunction. Prevalence of sexual dysfunction at baseline was similar in CD and UC (58 [97%] CD patients, 54 [96.4%] UC patients; P = 1.00) and remained unchanged throughout the 2-year duration of the study (P = 0.99). Abdominal pain or diarrhea over the past four weeks were associated with changes in sexual function (P = 0.24, P = 0.40, respectively, in all women).
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Reproductive knowledge and reservedness to discuss sexual health.
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Ellul et al. [12]
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9 x Mediterranean
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To assess the perspectives of
IBD patients on fertility, pregnancy and its outcomes
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384 female IBD patients
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Quantitative
prospective, cross-sectional study
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Participants completed a survey based on European Crohn’s and Colitis Organisation (ECCO) guidelines on pregnancy. The questionnaire consisted of eight sections related to fertility, consideration of pregnancy, pregnancy and its outcomes, delivery, breastfeeding, surgery, contraception, and cervical pathologies. 50% of participants had a diagnosis of ulcerative colitis, 49.4% had CD, and 0.6% patients had a diagnosis of indeterminate colitis. 63.1% of participants were unsure if medication should be stopped during pregnancy. Only 9.9% of patients answered that treatment should not be stopped during pregnancy. Voluntary childlessness included personal views and serious fears, such as IBD and/or IBD medications causing harm to the baby, passing on IBD to the baby, having a complicated pregnancy because of IBD, and/or not being able to take care of the baby because of IBD. The breastfeeding rate among IBD patients was 29.62%. In the cohort, 145 patients were counselled about the use of contraception and only 39 [27%] patients used a contraception method. Only 17% of patients were counselled on the benefits of undergoing regular Pap tests.
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Huang et al. [30]
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Canada
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To examine the effects of IBD-specific reproductive
knowledge and discussion of family planning with a physician on childlessness among women with IBD.
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248 females
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Quantitative
cross-sectional survey
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Participants completed the Crohn’s and Colitis Pregnancy Knowledge questionnaire (CCPKnow). CD was present in 60.5% (150 of 248), UC in 35.0% (88 of 248) and indeterminate colitis in 4.0% (10 of 248) of the respondents. Slightly more than one-half (128 of 248 [51.6%]) of the women were childless.
The prevalence of childlessness was higher among patients who were diagnosed with IBD before 18 years of age (P<0.001), had a history of ostomy (P<0.016) or colectomy (P=0.034), and among those working full-time (P=0.02), those with poor CCPKnow scores (P=0.008) and those without partners (P=0.001). 131 of 248 [52.8%] had poor CCPKnow scores. The prevalence of childlessness was 16.8% higher among women with poor CCPKnow scores than among women with adequate or higher CCPKnow scores. Among the respondents, 62.1% (154 of 248) reported having discussed family planning with a physician. Discussion of family planning with a gastroenterologist corresponded with 72% lower odds of voluntary childlessness among childless women.
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Picciarelli et al. [10]
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United states
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To explore the reproductive health decision-making experiences and preferences
of women with IBD
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21 females
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Qualitative
interviews
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A researcher developed interview guide was used to explore participants’ experiences.
Nulliparous women who do not currently desire pregnancy appear to lack reproductive health knowledge. Women with IBD lack clarity regarding the role IBD plays in contraceptive choice. Related to pregnancy, women are concerned about the heredity of IBD, antepartum disease activity, and the safety of their current medications. Women with IBD typically default to their reproductive health provider for reproductive health care and counselling, but they expect their gastroenterologist to initiate relevant reproductive health discussions and provide information in the context of their disease.
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Rao et al. [31]
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United States
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To assess counselling and knowledge about IBD and reproductive health
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54 females
46 males
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Quantitative
Multiple choice questionnaire
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Participants completed the CCPKnow questionnaire. Participants had: UC (52%) and CD (41%), with a small proportion (7%) with indeterminate colitis. Patients reported being counselled on at least one topic (heritability, fertility and IBD, or fertility and medication use) only 33% of the time. Few patients report having been counselled on issues with sexual function and IBD or sexual function and surgery (3 and 15%, respectively).
Both men and women considered not having a child due to IBD (31%women, 15%men, 24% total). The majority of people who considered voluntary childlessness were not previously counselled on IBD and reproductive health issues (83%). Many of the patients who became pregnant after their IBD diagnosis did not seek care from a gastroenterologist preconception (38%) and 25% did not seek care from a gastroenterologist during pregnancy. One- third (33%) stopped or changed their medications during the pregnancy and 40% of these patients did not discuss these medication changes with a physician. The majority of patients (67%) reported an interest in receiving more information on IBD and reproductive health, mostly in the form of a handout (84%) and a clinic visit (69%).
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Toomey et al. [14]
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Ireland
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To assess the knowledge of issues surrounding planning and carrying a pregnancy with IBD.
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73 female pts
49 GPs
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Quantitative
prospective questionnaire
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Nine patients had CD and 22 had UC. 42% of participants reported that they would allow having IBD to influence their family planning decisions. A total of 77% felt that there was a need to discuss issues with their GP, 32% had such a discussion previously and 58% would like their GP to raise these issues in the future. Only 16% knew that surgery for IBD could potentially lessen their fertility, 68% of patients reported that they are anxious or worried about the effect that their drugs could have on a pregnancy. Most GP’s reported that they never provided advice on family planning (57%), planning medication changes before a planned pregnancy (55%) or initiated medication changes during pregnancy (57%). 18% of GP’s would routinely raise the issue of family planning with IBD patients when the opportunity arose while 41% said that they never do. 8% of GPs felt they had the expertise to deal with family planning issues if approached by a patient themselves, 31% would have to research it first and 61% would defer to the patient’s specialist team for advice.
67% of GPs reported that they would defer to the patient’s specialist for most decisions about pregnancy.
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Walldorf et al. [15]
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Germany
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To identify patients with an increased need for medical counselling
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443 females
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Quantitative
internet-based questionnaire
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Researcher developed questionnaire.
Childlessness was reported frequently (64.8% of IBD women). The frequency of childlessness was not significantly different from that in the general population.
Overall, 13% of women with IBD who were childless avoided pregnancy following their physicians’ advice with respect to IBD.
Because of IBD, family planning was postponed in 57% of IBD mothers. Notably, 38.5% of the mothers with IBD who had postponed family planning did so following medical advice. Overall, 45.7% of the women agreed that IBD had a considerable impact on family planning and pregnancy (FPP).
Satisfaction with the physicians’ counselling related to IBD in general was higher than the satisfaction with medical advice related to FPP specifically (44.2vs.27.3%).
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