Article Text
PDF
Abstract
Objective Sexual dysfunction is common in patients with inflammatory bowel disease (IBD). Data on IBD disease activity and IBD patients’ desire to seek specialist advice regarding sexual dysfunction are lacking. We aimed to identify sexual healthcare needs in patients with IBD.
Design/method We conducted a cross-sectional survey of adult patients with IBD at a tertiary teaching hospital. Clinical disease activity was assessed using the Harvey-Bradshaw Index for patients with Crohn’s disease and the Patient-Simple Clinical Colitis Activity Index for patients with ulcerative colitis. Sexual health questions were derived from the validated IBD-Specific Female Sexual Dysfunction and IBD-Male Sexual Dysfunction Scales. Comparisons between those with inactive and active disease were made using Fisher’s exact test.
Results 101 respondents completed the survey, of which 53 (52%) were female and 57 (56%) had Crohn’s disease. The median age was 38 (IQR 28–52). 34 respondents (34%) had active disease. Respondents with active Crohn’s disease trended towards having more significant sexual dysfunction than those in remission for all domains on the sexual dysfunction scale. 74% reported interest in accessing specialist advice regarding their sexual function while 20% have attempted to seek this advice. 36% would wish to be contacted by the IBD team if a sexual health service became available.
Conclusions Negative impacts on sexual function were common in our cohort, particularly in the presence of active disease. Most patients with IBD are interested in obtaining advice regarding their sexual function. This is an unmet need among IBD services.
- INFLAMMATORY BOWEL DISEASE
- ULCERATIVE COLITIS
- CROHN'S DISEASE
- QUALITY OF LIFE
Data availability statement
Data are available on reasonable request.
Statistics from Altmetric.com
WHAT IS ALREADY KNOWN ON THIS TOPIC
There is an increased prevalence of sexual dysfunction among individuals with inflammatory bowel disease (IBD); however, there is a paucity of data regarding IBD patients’ desire to seek expert advice regarding sexual function and IBD.
WHAT THIS STUDY ADDS
This study demonstrates that most people affected by IBD would like sexual function advice to be available, with a substantial number of patients who are interested in engaging with sexual function services with only a minority having done so.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
This study highlights the importance of integrating sexual health functions into IBD services to achieve holistic care for the IBD population.
Introduction
The inflammatory bowel diseases (IBDs), comprising Crohn’s disease, ulcerative colitis and IBD-unclassified, are chronic conditions of the gastrointestinal tract.1 IBD is often diagnosed at a young age with incidence highest between the age of 20 and 29 years old.2 Sequelae associated with IBD include more frequent missed workdays, higher prevalence of mental health disorders and reduced quality of life.1 3–5 An understated yet likely contributor to reduced quality of life is the adverse effects of IBD on sexual function.5
Sexual dysfunction in IBD is highly prevalent in IBD, reported by 45%–60% of women and 15%–25% of men6–8 as compared with 30% and 5% in the general population, respectively.9 10 Similarly, in direct comparator studies, 54% of female IBD were found to have sexual dysfunction, and 43% of male patients with IBD reported erectile dysfunction, far exceeding rates observed in a non-IBD cohort.11 A complex interplay of physical and psychological elements contributes to this disparity. Psychological factors, including depression, anxiety and fatigue, have been frequently associated with worsening sexual dysfunction in the IBD population.6–8 11 12 Notably, this observation has been reported independent of disease activity.11 Previous operations,12 medications,6 12 perianal disease,6 incontinence,6 impaired body image, including that related to a stoma8 12 and IBD disease activity,13–15 are all associated with sexual dysfunction, whilst the published literature is somewhat conflicting regarding the impact of the IBD disease activity.11 16
While there is a paucity of studies and a lack of replicated findings to identify the key drivers of sexual dysfunction, it is clear that patients want and need more information regarding the impact of IBD on intimacy and sexuality.6 Half of one IBD cohort believed their IBD specialist was the appropriate practitioner to be discussing their sexual health concerns with, yet only a quarter of patients with IBD want to discuss these issues with their physician.13 Given the prevalence and multifactorial nature of sexual dysfunction, it is essential for the IBD team to characterise patient expectations and address patient wishes regarding sexual dysfunction management.
This study, therefore, aims to further characterise factors that impact IBD patients’ sexual health and to assess patients’ desire for specialised sexual health services.
Methods
Study design
We conducted an online cross-sectional survey administered via REDCap through Melbourne Health. The study was conducted at the Royal Melbourne Hospital, a city-based, tertiary teaching hospital that offers specific pregnancy and IBD care. The multidisciplinary IBD service is composed of IBD-specific physicians, surgeons, clinical and research nurses, pharmacists, dietitians, radiologists, pathologists and obstetricians with an IBD interest but no specific psychological or sexual health practitioners.
Participants
All patients between the ages of 18 and 85 years old with a confirmed diagnosis of Crohn’s disease, ulcerative colitis or IBD unclassified were eligible for inclusion. Patients without a confirmed diagnosis of IBD were excluded. Patients were invited to participate in the survey by two means. First, patients were invited to participate in the survey during routine clinical interactions with members of the IBD team, including doctors, pharmacists and nurses. If interested, they were emailed a link to complete the survey. Second, all patients who had attended the IBD clinic over a 12-month period (July 2021–July 2022) were identified through the electronic medical records (Epic). Their files were manually reviewed to confirm they had IBD, with all patients with confirmed IBD and an email listed, sent an email with an explanation of the study and an invitation to complete the survey. If patients preferred to complete a survey manually, they were provided one during a clinical consultation or mailed one with a return envelope.
Measures
The survey was sex-specific and disease-specific and collected demographic data, disease-specific clinical activity data, sexual function data and interest in accessing sexual health services (figure 1). For clinical disease activity, the Patient-Harvey-Bradshaw Index (P-HBI)17 was used for patients with Crohn’s disease and the Patient-Simple Clinical Colitis Activity Index (P-SCCAI)18 was used for ulcerative colitis and IBD-unclassified patients. Patients with either a P-HBI or P-SCCAI score of 4 or greater were considered to have active disease. For sexual function, the validated IBD-Specific Female sexual dysfunction scale15 and IBD-Specific Male sexual dysfunction scale19 were incorporated into a nine-question survey that was given to both male and female participants (figure 1). A Likert scale was used both to measure sexual dysfunction and to assess interest and behaviours towards accessing sexual health advice and services. The 5-point Likert scale for sexual dysfunction included the options: ‘always or almost always’, ‘most times’, ‘half of the time’, ‘a few times’ and ‘never or rarely’.
Likert scale answers. Percentages on the left of each row pertain to either ‘always of almost always’ or ‘most times’ responses. Percentages in the middle of each row pertain to ‘half the time’ responses. Percentages on the right of each row pertain to ‘a few times’ and ‘never or rarely’ responses. CD, Crohn’s disease; UC, ulcerative colitis.
Analysis
Data were collected using REDCap. Descriptive statistics including medians and frequencies were used. A Fisher’s exact test was used to explore associations between clinical variables, disease activity (P-HBI and P-SCCAI), general well-being, interest in receiving sexual healthcare and the continuous variable describing sexual dysfunction (IBD-Specific Female Sexual Dysfunction Scale and IBD-Male Sexual Dysfunction Scale). Given the descriptive nature of the data, correction for multiple comparisons was not made. Data analysis and figures were completed by using R (V.4.2.3).
Results
Participant demographics and disease activity
A total of 781 unique patients were identified through outpatient IBD clinic records. 163 were excluded as there was not a confirmed diagnosis of IBD. A further 175 were excluded as a correct email was not available. A total of 443 surveys were emailed. In total, 186 survey responses were recorded, of which 85 were excluded as they were duplicates or missing data. A total of 101 surveys were included in the final analysis (23% of total invitations), comprising 38 patients with ulcerative colitis, 57 with Crohn’s disease, 3 with IBD-unclassified and 3 patients who were unsure of their diagnosis (table 1). The median duration of illness was 10 years (IQR 4–20). The response rate was 23% (101/443). The median age was 38 (IQR 28–52), with the age range 18–81 years (table 1). 53 (52%) were female. 34 respondents (34%) had active disease.
Demographic and clinical characteristics of the patients at baseline
Sexual health results
For all nine questions pertaining to symptoms of sexual dysfunction, there were patients experiencing the described symptom always or almost always (figure 1). Patients with clinically active Crohn’s disease trended towards more sexual dysfunction than those in remission across all questions in the sexual dysfunction scale (figure 2). Patients with active Crohn’s disease were more likely to report that their disease had prevented engagement in sexual activity in the past year (p=0.04) and more likely to be afraid to participate in sexual activity (p=0.01) compared with those in remission (figure 2). Patients with active ulcerative colitis were more likely to report that pelvic pain affected sexual activity (p=0.03) compared with those in remission (figure 2). Female patients with Crohn’s disease were more likely to report sexual dysfunction related to reduced desire or interest in sex (p=0.03), guilt (p=0.04), pelvic pain (p=0.004), rectal or anal pain (p=0.03) and disease precluding sexual activity (p=0.04) (online supplemental material). Male patients with ulcerative colitis were more likely to report fatigue affecting sexual activity (p=0.02), with no differences in the other aspects of sexual dysfunction in ulcerative colitis patients (online supplemental material).
Supplemental material
Top panel: Responses according to disease activity in patients with Crohn’s disease. Disease activity was determined by a Patient-Harvey-Bradshaw Index of greater than 4. Bottom panel: Responses according to disease activity in patients with Ulcerative Colitis. Disease activity was determined by a Patient-Simple Clinical Colitis Activity Index of greater than 4. P-values compare patients with and without active disease using Fisher’s exact test.
Interest in sexual health services
Regarding seeking additional support, 74% of participants expressed interest in gaining assistance, with almost half (47%) of the participants being very interested. A total of 20% have attempted to seek this advice. More than one-third (36%) of participants would wish to be contacted by their treating team if a sexual health service became available at their hospital (figure 3).
Number of patients interested in accessing care to address sexual dysfunction, prompted by the question ‘How interested are you in receiving care to address sexual health?’.
Discussion
We have demonstrated an association between IBD activity and sexual function for both male and female participants. For patients with Crohn’s disease, clinically active disease was associated with sexual dysfunction in all nine questions. This finding is particularly important given the heterogeneity of previous study results. Our combined findings for both males and females mirrored those of other groups (which focused on female patients only), where there was essentially impairment across most sexual domains in females.6 7 13 When responses were stratified by sex, female patients with Crohn’s disease were more likely to report sexual dysfunction across multiple domains. For patients with ulcerative colitis, increased disease activity was associated with increased pelvic pain in sexual activities. This is a notable finding, given the predominant problems found for men with IBD is erectile dysfunction6 7 11 13 low sexual desire,7 8 11 14 with impaired orgasmic function and satisfaction being less frequently found issues.7 8
Our results confirm that individuals with IBD want sexual health services to be integrated into holistic IBD patient care. Despite this clear interest, only a minority of individuals with IBD have deliberately sought advice of their own volition, highlighting this as a barrier to sexual dysfunction being addressed. Multidisciplinary IBD care has been increasingly recognised as a key metric in IBD care, as demonstrated by multiple Crohn’s and colitis organisations and national bodies surveys and standards.20–22 On an individual practitioner level, one survey found that most gastroenterologists (86%) do not regularly inquire about the impact IBD has on the sexual health of their patients.23 In this study, multiple barriers to addressing sexual health were reported, including lack of time, inadequate knowledge of this area and discomfort in approaching the topic.23 There are additional barriers on an institutional level. In an Australian context, sexual health services have not been considered to be an important element of chronic disease management multidisciplinary care as measured by key stakeholder surveys20 nor has access to such services been recognised in the Australian Commonwealth Government’s action plan to improve IBD care nationally.24 This is a pervasive issue internationally, with key stakeholder surveys and standards across numerous other countries including New Zealand,21 the UK,22 Europe25 and North America25 discounting sexual healthcare. Our findings, in addition to the findings of previous studies,6–8 11–15 support the importance of training IBD specialists and nurses in addressing sexual dysfunction. Furthermore, these data suggest a need to provide readily accessible patient information material and restructure service provision so an appropriate time and place to discuss sexual function is available.26 Our findings also provide important data for patient advocate organisations in raising awareness of this issue, and for IBD services when applying for additional funding to access appropriate health practitioners, such as pelvic floor physiotherapists and psychologists.26
Our study has several strengths and limitations. Regarding limitations, the survey response rate was 23%, representing a potential reporting bias. In particular, the response rate was low for those invited to participate solely over email, as opposed to through a face-to-face interaction. This may be due to the limitation of using email to ask patients to complete a questionnaire of a particularly personal nature. The survey was in English, and therefore, only English-speaking people were captured in this cohort, where translations of surveys could enhance the diversity of the cohort. Notably, the vast majority of the IBD population at Royal Melbourne Hospital speak English. Disease activity was based on patient responses rather than objective measures such as biomarkers or colonoscopy. This study is not generalisable to all IBD populations, given our catchment is a predominantly metropolitan population, with 10% of patients who attend the Royal Melbourne gastroenterology unit from regional and rural areas. In terms of strengths, both validated sexual health questionaries for the IBD population and clinical scoring systems were used.
Areas for future study include the development of cost-effective sexual health service models as part of IBD multidisciplinary care, and their associated effects of improvement on sexual dysfunction, psychological well-being and quality of life.
In conclusion, sexual health dysfunction is prevalent among patients with IBD, particularly those with active disease. Sexual health is inadequately addressed by IBD healthcare professionals despite patients being interested in receiving expert care in this area. Sexual healthcare services require higher priority moving forward to truly provide holistic healthcare for patients with IBD.
Data availability statement
Data are available on reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by the Melbourne Health Human Research Ethics Committee (Human Research Ethics Committee number 2018.355). Respondents consented before completing the survey. Participants gave informed consent to participate in the study before taking part.
Acknowledgments
We would like to acknowledge the Australian Commonwealth Government's support of ATE via a research scholarship. We would like to thank the Royal Melbourne IBD unit members for inviting patients to participate in the study.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
X @AlexElford3
ATE and WB contributed equally.
Contributors ATE, RP, AHA-A and BC contributed to the design of the study. ATE, JM and BC designed the REDCAP. JM, AD and VK emailed all patients. ATE, WB, AD, VK, JM, AHA-A, JS and BC were involved in recruitment. ATE and WB drafted the first version of the manuscript. All authors critically reviewed the manuscript for important intellectual content. All authors approved the final version of the manuscript. BC is the guarantor.
Funding ATE and AHA-A are supported by the Australian Commonwealth government via a Research Training Program Scholarship.
Competing interests ATE and AHA-A are supported by the Australian Commonwealth government via a Research Training Program Scholarship. AHA-A is also supported by the Crohn’s Colitis Australia PhD Scholarship, Avant Doctors-in-Training Scholarship and the Gastroenterology Society of Australia Celltrion IBD Fellowship. RP is supported by a National Health and Medical Research Council Scholarship, a Crohn’s Colitis Australia PhD Scholarship, and two research grants from Ferring Pharmaceuticals. JS received speaker fees for Takeda and Abbvie, BMS and Falk Pharma and has a non-restricted grant from Tillots. BC has received speaking fees from Abbvie, Janssen, Pfizer, Takeda and Ferring; research grants from Janssen and Ferring Pharmaceuticals and served on the advisory board of Gilead and Novartis.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.