Objectives Existing measures of inflammatory bowel disease (IBD) symptoms are not well suited to self-report, inadequate in measurement properties, insufficiently specific, or burdensome for brief or repeated administration. We aimed to develop a patient-reported outcome measure to assess a broader range of IBD symptoms. Methods The IBD Symptoms Inventory (IBDSI) was developed by adapting symptom items from existing clinician-rated or diary-format inventories; after factor analysis, 38 items were retained on 5 subscales: bowel symptoms, abdominal discomfort, fatigue, bowel complications, and systemic complications. Participants completed the IBDSI and other self-report measures during a clinic visit. A nurse administered the Harvey Bradshaw Index (HBI) for Crohn’s disease (CD) or the Powell-Tuck Index (PTI) for ulcerative colitis (UC), and a gastroenterologist completed a global assessment of disease severity (PGA). Results The 267 participants with CD (n = 142) or UC (n = 125), ages 18 to 81 (M = 43.4, SD = 14.6) were 58.1% female, with a mean disease duration of 13.9 (SD = 10.5) years. Confirmatory factor analysis supported the 5 subscales. The total scale and subscales showed good reliability and significant correlations with self-report symptom and IBD quality of life measures, the HBI, PTI, and PGA. Conclusions The IBDSI showed strong measurement properties: a supported factor structure, very good internal consistency, convergent validity, and excellent sensitivity and specificity to clinician-rated active disease. Self-report HBI and PTI items, when extracted from this measure, produced scores comparable to clinician-administered versions. The 38-item IBDSI, or 26-item short form, can be used as a brief survey of common IBD symptoms in clinic or research settings.

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BackgroundPregnant and postpartum women are at a heightened risk for the development or worsening of mental health problems, with elevated rates of mood and anxiety disorders noted across studies. Timely access to mental health supports is critical during the perinatal period (spanning pregnancy to 1 year postpartum), to mitigate potential negative impacts on mother and child. In general adult populations, a small body of research has highlighted the association between being waitlisted for mental health services with a deterioration in mental health. Given the influx of changes experienced in the perinatal period, this population may face unique challenges around being waitlisted. There is a lack of research exploring the experiences of perinatal women waitlisted for psychological services. The current study seeks to understand the experiences of perinatal women randomized to the waitlist condition of a randomized controlled trial.MethodsN = 20 participants (4 pregnant, 16 postpartum) from Central Canada who were enrolled in a novel online self-directed intervention for perinatal anxiety completed a virtual qualitative interview concerning their experience during the 6-week waitlist period for this randomized controlled trial. Interviews were audio-recorded, transcribed, and analyzed according to reflexive thematic analysis.ResultsSeven main themes were identified, depicting the waitlist experiences of perinatal participants: (a) “There is always a waitlist” (sub-themes: service availability, need to seek out services pre-emptively); (b) Timing of support access is vital during the perinatal period (sub-themes: prenatal, postpartum); (c) Responses to being waitlisted (sub-themes: disappointment, neutral, relief, “there's probably somebody that needs it more than I do”); (d) Identification of helpful supports during the waitlist period (sub-themes: formal supports, informal supports); (e) Connections with research team (sub-themes: communication, resource provision); (f) Impact of waitlist experience on desire to start program (sub-themes: excitement, “out of sight, out of mind,” nervousness); and (g) Improving the waitlist experience (sub-themes: communication, resource provision, triaging).DiscussionFindings highlight the need for timely access to mental health supports during the perinatal period and offer several recommendations for improving the waitlist experience, including providing more frequent waitlist status updates, providing more direct access to intermediate interventions, and triaging patients based on clinical need.