Development of a Sexual Dysfunction Scale for Women With Inflammatory Bowel Disease

Future Directions Development of a Sexual Dysfunction Scale for Women With Inflammatory Bowel Disease Background: Women with inflammatory bowel disease (IBD) may have decreased sexual function. To understand how common this condition is in our female patients, we developed a new IBD-specific Female Sexual Dysfunction Scale (the IBD-FSDS). Methods: We performed a prospective cross-sectional study of 454 female IBD patients ≥18 years of age attending 1 of 3 IBD clinics in the United States or Denmark. We gathered information on sexual function via a de novo 23-item scale. General sexual functioning was measured with the Female Sexual Function Index (FSFI) and the Female Sexual Distress Scale–Revised (FSDS-R). Depressive symptoms were measured with the Patient Health Questionnaire–9 (PHQ-9). Medical history and sociodemographic data were collected via chart review. Exploratory factor analyses (EFAs) of the English language version of IBD-FSDS assessed unidimensionality, factor structure, reliability, criterion validity, and construct validity. Results: EFAs suggested retaining 15-items creating a unidimensional scale with strong internal consistency reliability (α = 0.93). Validity of the English language IBD-FSDS was measured using Spearman’s coefficient, demonstrating significant criterion validity with the FSDS-R (P < 0.05) and the FSFI (P < 0.05) and significant construct validity with the composite for cases of active IBD (P < 0.05) and PHQ-9 (P < 0.05). Sexual dysfunction in women with IBD was significantly associated with depression (P = 0.042), active IBD (P = 0.002), and no history of surgery (P = 0.044). Conclusions: We have developed and validated an IBD-specific scale to assess the psychosexual impact of IBD in women. This novel screening questionnaire may help health care providers recognize factors contributing to impaired sexual function in their female patients. Key Words: female sexual dysfunction, inflammatory bowel disease, quality of life, Crohn’s disease, ulcerative colitis INTRODUCTION Ulcerative colitis (UC) and Crohn’s disease (CD) are chronic diseases with a variable and unpredictable course. Treatment often consists of potent biological therapies with a potential for severe side effects.1 In addition, there is a significant risk for surgery with studies demonstrating overall Received for publications January 19, 2018; Editorial Decision April 23, 2018. From the *Brigham and Women’s Hospital, Boston, Massachusetts; †Department of Biostatistics, Harvard School of Public Health, Boston, Massachusetts; ‡ Department of Hepatology and Gastroenterology, Aarhus University Hospital, Aarhus, Denmark; §Massachusetts General Hospital, Boston, Massachusetts; and ¶ Sexological Centre, Aalborg University Hospital, Aalborg, Denmark Conflicts of interest: P.D., A.O., L.M., C.U., M.T., T.L., D.N., A.A., J.K., A.H., and S.F. declare no competing interests. M.J. has served as a speaker, has been compensated by MSD, Ferring, UCB, and Takeda, and has been on the advisory board for Janssen. L.A.C. has served as a speaker, has been compensated by Ferring, Tillotts, Takeda, MSD, AbbVie, Janssen, and UCB, and has been on the advisory board for AbbVie and MSD. Guarantor of the article: Punyanganie S. de Silva, MD, MPH. Conference presentation: Preliminary data were presented at Digestive Diseases Week, San Diego USA, 2016 – Poster of Distinction. Supported by: Analyses of data and manuscript development were financially supported, in part, by a grant awarded to M.A.T. from the Patient Centered Outcomes Research Institute (PCORI Program Award CE-1304–6756) and by Inflamm Bowel Dis • Volume 24, Number 11, November 2018 cumulative abdominal and pelvic surgery rates at 0%–35%, 21%–59%, and 37%–61% at 1, 5, and 10 years after diagnosis, respectively.2 The symptoms, disease complications, and treatments for inflammatory bowel disease (IBD) can influence body image, intimacy, and sexual function.3 Furthermore, peak incidence and prevalence of IBD tends to occur between a grant (L60 MD002421-02) and fellowship (R25MH083620) awarded to Linda G. Marc from the National Institutes of Health. Author contributions: Punyanganie de Silva and Sonia Friedman designed the study. Punyanganie de Silva, Sonia Friedman, Aoibhlinn O’Toole, Deanna Ngyuen, Ashwin Ananthakrishnan, Lisbet A. Christensen, Mette Julsgaard, Tine Laursen, Astrid Højgaard, and Joshua Korzenik took part in conducting the study, interpreting the data, and drafting the manuscript. Linda G. Marc, Christine A. Ulysse, and Marcia A. Testa were responsible for analysis and drafting the manuscript. All study investigators approved the final draft of the manuscript. Address correspondence to: Punyanganie S. de Silva, MBBS, MPH, Division of Gastroenterology, Hepatology and Endoscopy, Brigham and Women’s Hospital and Harvard Medical School, 75 Francis Street, Boston, MA 02115 (pdesilva@bwh. harvard.edu). © 2018 Crohn’s & Colitis Foundation. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: . doi: 10.1093/ibd/izy202 Published online 22 June 2018 2350 Punyanganie S. de Silva, MBBS, MPH,* Aoibhlinn O’Toole, MBBch, MSc,* Linda G. Marc, PhD,† Christine A. Ulysse, MSc,† Marcia A. Testa, PhD,† Mette Julsgaard, MD,‡ Deanna Ngyuen, MD,§ Ashwin Ananthakrishnan, MD, MPH,§ Tine Laursen,‡ Astrid Højgaard, MD,¶ Lisbet A. Christensen, MD,‡ Joshua Korzenik, MD,* and Sonia Friedman, MD* Inflamm Bowel Dis • Volume 24, Number 11, November 2018 METHODS This cross-sectional multicenter study used homogenous purposive sampling. Female IBD patients were prospectively recruited during their outpatient visits to the IBD clinic at the Brigham’s and Women’s Hospital or Massachusetts General Hospital in Boston, Massachusetts, between November 1, 2013, and April 30, 2015, or at the Aarhus University Hospital in Aarhus, Denmark, from May 2015 to October 2015. Individuals who had not been sexually active within the past year were excluded. Female patients who were 18 years or older were requested to fill out the questionnaire at or before attending IBD clinic. Most patients completed the survey at their clinic appointment. Patients with time constraints were given envelopes to mail back the responses. Ten percent of patients were mailed the questionnaire before a future clinic appointment. Development of the IBD-Specific Female Sexual Dysfunction Scale Item Selection and Content validity A 3-step process was followed to make certain that an exact set of items measured the content domain, which should be a subset of the universe of appropriate items. Initially, we searched the literature for existing generic surveys to classify appropriate domains of sexual function, from which a preliminary set of questions specific to IBD in females was created (such as the impact of symptoms of IBD, medical and surgical treatment on sexual functioning) in consultation with an expert in survey development. From this, a (...truncated)