Samantha Conley

Individuals with inflammatory bowel disease (IBD) experience overlooked deficits in objectively measured cognitive functioning; however, there is limited knowledge about self-reported cognitive symptoms in this group. Sleep characteristics, such as insomnia, poor sleep quality, or fragmented sleep, may be key modifiable factors that are associated with cognitive symptoms among individuals with IBD. This study aimed to describe cognitive symptoms and examine the relationship between these symptoms and sleep characteristics among adults with IBD. We conducted a descriptive, cross-sectional study using the Pittsburgh Sleep Quality Index, wrist actigraphy, the Insomnia Severity Index, and the FACT-Cog Perceived Cognitive Impairments subscale. Bivariate statistics were used to evaluate relationships between variables. The sample included 83 participants (mean age 40.44 years [standard deviation 10.7], 71% female). Over 77% ( n = 60) had poor self-reported sleep quality, and 69.5% ( n = 57) had clinically meaningful insomnia. The most frequently reported cognitive symptoms (experienced two or more times a week) were trouble concentrating (51.3%), forgetting names (43.8%), forgetting intended tasks (38.9%), and slow thinking (37.6%). Insomnia severity was moderately correlated with three out of the four most common cognitive symptoms (trouble concentrating: r _s = .51, p < .01; forgetting intended tasks: r _s = .38, p < .01; slow thinking: r _s = .46, p < .01). Future research is needed to examine relationships between objective cognitive measures and sleep characteristics and to test the effects of insomnia treatment on daytime cognitive symptoms in this complex patient population.

Purpose: The goal of this paper is to advance precision health among patients with a left ventricular assist device (LVAD) and their informal care partners by examining the science of patient, care partner and dyadic management. We (1) describe the current state of self- and dyadic management science in LVAD, and (2) offer frameworks to guide LVAD patient, care partner and dyadic management research. Recent Findings: While frameworks for family and self-management exist for other chronic conditions, dyadic frameworks are rarely used for LVAD patient-care partner dyads, thus limiting research. A handful of primarily qualitative studies describe self-management tasks and skills, but facilitators, barriers, processes, behaviors and outcomes of self- and dyadic LVAD management need more study. Summary: In this paper we summarized current progress in self- and dyadic management science in LVAD and offered a preliminary framework to guide research. Future studies should include both care partners and LVAD patients, with thoughtfully selected frameworks to guide more inclusive research in LVAD self- and dyadic management, with the goal of designing the right intervention for the right person at the right time .

Background: Research is limited on the impacts of menopause, defined as the permanent cessation of ovarian function and decline of reproductive hormones, on gastrointestinal symptom severity and disease progression in women with inflammatory bowel disease (IBD). This review synthesizes current evidence on the impact of menopause, menopause transition, and hormonal therapy (HT) on disease activity, IBD and menopause symptom severity, and disease progression among individuals with IBD. Methods: A systematic literature review was reported following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines and preregistered at PROSPERO (CRD42024564901). Five databases were searched without date restrictions. Data extraction and risk-of-bias assessment were performed independently by multiple reviewers. Results were qualitatively synthesized. Results: Of 1667 records, 15 studies met inclusion criteria (5 cohort, 3 case-control, 7 cross-sectional) with IBD sample sizes from 37 to 1367. Evidence on HT and IBD risk was mixed: some studies linked HT to increased ulcerative colitis risk while others found no significant association after adjusting for confounders. Women with IBD experience earlier menopause than healthy control subjects. While most women reported no change in IBD symptoms postmenopause, a minority reported symptom worsening. HT may reduce flare severity. Women with IBD reported more severe vulvovaginal symptoms and had distinct vaginal microbiome profiles compared with healthy control subjects. Conclusions: Few studies have explored the relationship between menopause and IBD. There is a need for continued research on the relationship between IBD disease activity and menopause symptoms to create tailored interventions to improve women’s health with IBD across the lifespan.

Purpose: Fatigue is one of the most common and disabling symptoms experienced by people with inflammatory bowel disease; however, interventions to treat fatigue are limited. The purpose of this systematic review is to examine the relationship between sleep deficiency and fatigue in adults with inflammatory bowel disease and to describe the demographic and clinical factors associated with fatigue to inform future intervention work. Methods: We conducted a systematic review and reported the results using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The search was conducted using MEDLINE, EMBASE, PsycINFO, CINAHL, and CENTRAL on 3/7/24. We included studies with adults (≥18 years of age) who had a diagnosis of inflammatory bowel disease (Crohn’s disease, ulcerative colitis, or indeterminate colitis) and measured fatigue and sleep using a validated self-report questionnaire or objective measurement. Results: Twenty-two studies met inclusion criteria for a total sample of 16 927, of whom 58.7% (n = 9937) had Crohn’s disease, and 66.3% (n = 11 226) were female. 56.1% of the participants experienced fatigue and 66.3% experienced sleep deficiency. Sleep quality and insomnia were consistently associated with fatigue. Baseline poor sleep quality was associated with persistent and worsening fatigue over 12 to 24 months. Clinical but not objective assessment of disease activity, anxiety, depression, female gender/sex, and younger age were also associated with more severe fatigue. Conclusions: Sleep quality and insomnia represent important modifiable contributors to fatigue. Future research should explore whether sleep interventions can improve fatigue in this population.

Background and Aims: Individuals with inflammatory bowel disease (IBD) experience a high symptom burden, including abdominal pain, fatigue, anxiety, depression, and sleep disturbances; yet, little is known regarding the relationship between sex and gender on symptoms. We sought to report symptom severity for cisgender men, cisgender women, and transgender and gender-diverse (TGD) individuals. In addition, we used network analysis to identify core symptoms and explore if symptoms and their relationships differ between cisgender men and cisgender women. Methods: This was a cross-sectional study. We recruited adults with IBD online through ResearchMatch. Individuals responded to Patient-Reported Outcomes Measurement Information symptom questionnaires, as well as demographic and clinical questionnaires. Network analysis was used to identify the core symptoms driving the symptom structure. Results: One-hundred and fifty-seven (63.3%) participants identified as cisgender women, 84 (33.9%) as cisgender men, and 7 (2.8%) as TGD. Cisgender men (M = 61.8) and TGD (M = 61.3) groups reported higher abdominal pain levels compared with cisgender women (M = 57.8; P = .02). Transgender and gender-diverse individuals reported higher depression levels (M = 64.8) compared with cisgender men (M = 56.7) and cisgender women (M = 54.4; P = .01). Using a network analysis approach, anxiety and fatigue emerged as core symptoms for the entire sample (clinically active and inactive disease), and among only those with active clinical disease. Fatigue was a top core symptom for cisgender women; anxiety emerged as a top core symptom for cisgender men. Conclusions: This study highlights that fatigue and anxiety are core symptoms among individuals with IBD and demonstrates a potential sex and/or gender difference in core symptoms. Replication of this study is needed with further consideration of inclusion of TGD patients.

Background: Older adults with heart failure experience clustered symptoms. However, little is known about how symptom clusters transition over time. Objectives: This study aimed to (a) identify the longitudinal transition of symptom cluster profiles over 8 years and (b) examine the associations between demographic and clinical factors and the transition between symptom cluster profiles over time. Methods: We conducted a longitudinal secondary analysis of data from the Health and Retirement Study’s 2008, 2012, and 2016 surveys. We included participants with heart failure in the core data sets and their proxy respondents in the exit data sets. We included demographic and clinical variables as well as six symptoms (fatigue, shortness of breath, pain, swelling, depressive symptoms, dizziness) through physical health interviews. We used latent transition analysis and multinominal regressions to determine longitudinal profiles and explored the association between demographic and clinical factors and membership in symptom cluster profiles. Results: Among 690 participants, we found four symptom cluster profiles (high burden, low burden, distressing, and respiratory-depressive distress). Participants in the low burden at baseline had the highest probability of transitioning to the respiratory-depressive distress profile. Participants in the respiratory-depressive distress at 4 years had the highest probability of transitioning to the high burden profile. Male sex, Black/African American race, smoking, and comorbidities were associated with the increased odds of transiting from the low symptom burden to the high symptom burden profile. Discussion: Symptom cluster profile memberships were stable over an 8-year period. However, symptom cluster profiles are changeable and deteriorate over time. Identifying predictive factors enables targeted interventions for those at highest risk.