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BACKGROUND: Disability in patients with medically refractory ulcerative colitis (UC) after total proctocolectomy (TPC) with ileal pouch anal anastomosis (IPAA) is not well understood. The aim of this study was to compare disability in patients with IPAA vs medically managed UC, and identify predictors of disability. METHODS: This was a multi-center cross-sectional study performed at five academic institutions in New York City. Patients with medically or surgically treated UC were recruited. Clinical and socioeconomic data were collected and the inflammatory bowel disease disability index (IBD-DI) was administered to eligible patients. Predictors of moderate-severe disability (IBD-DI≥35) were assessed in univariable and multivariable models. RESULTS: A total of 94 patients with IPAA and 128 patients with medically managed UC completed the IBD-DI. Among patients with IPAA and UC, 35 (37.2%) and 30 (23.4%) had moderate-severe disability, respectively. Patients with IPAA had significantly greater IBD-DI scores compared to patients with medically managed UC (29.8 vs 17.9, p

BACKGROUND The risk of neoplasia of the pouch or residual rectum in patients with ulcerative colitis (UC) who undergo total proctocolectomy (TPC) with ileal pouch anal anastomosis (IPAA) is incompletely investigated. Thiopurine use is associated with a reduced risk of colorectal neoplasia in patients with UC. We tested the hypothesis that thiopurine use prior to TPC may be associated with a reduced risk of primary neoplasia after IPAA. METHODS We conducted a retrospective cohort analysis of patients from a tertiary referral center from January 2008 to December 2017. Eligible patients with UC or IC underwent TPC with IPAA and had at least two pouchoscopies with biopsies ≥ 6 months after surgery. Propensity score analysis was conducted to match thiopurine exposed vs unexposed groups based on clinical covariates. Multivariable Cox regression analysis estimated the risk of neoplasia. RESULTS A total of 284 patients with UC or IC (57.4% male, median age 35.6 years) were analyzed. Ninety-seven patients (34.2%) were confirmed to have thiopurine exposure ≥ 12 weeks immediately prior to TPC ("exposed") and 187 (65.8%) were confirmed to have no thiopurine exposure for at least 365 days prior to TPC ("non-exposed"). Compared to non-exposed patients, patients with thiopurine exposure less often had dysplasia (7.2% vs 23.0%, p = 0.001) and had lower grades of dysplasia before colectomy. After IPAA, patients with neoplasia were older (44.0 vs 34.8 years, p = 0.03), more likely to have had dysplasia as colectomy indication (44.4% vs 15.4%, p = 0.007), and more likely to require pouch excision (55.6% vs 10.2%, p

Introduction: The true incidence of Clostridioides difficile infection (CDI) in patients with an ileal pouch is unknown, and there is little published on its associated risk factors. Objective: We aimed to evaluate the rate and risk factors of CDI in pouch patients. Methods: This was a retrospective review conducted at a single tertiary care inflammatory bowel disease (IBD) center. All ulcerative colitis or IBD-unspecified (IBD-U) patients who underwent total proctocolectomy with ileal pouch anal anastomosis for medically refractory disease or dysplasia between 2008 and 2017 were identified. Symptomatic patients tested for CDI were included. Demographic, disease, and surgical characteristics were collected. Nonparametric methods were used to compare continuous outcomes, and χ2 and Fisher’s exact tests were used to compare patients with and without CDI as appropriate. Results: A total of 154 pouch patients had postoperative C. difficilestool testing for symptoms of fever, urgency, increased stool frequency, hematochezia, incontinence, and abdominal and/or pelvic pain. CDI was diagnosed in 11 (7.1%) patients a median of 139 days (IQR 34–1,170) after the final surgical stage. Ten patients (90.9%) received oral vancomycin for 10 days and 1 patient (9.1%) received oral metronidazole for 2 weeks. Ten patients (90.9%) reported improvement in symptoms at completion of therapy. Nine patients (81.8%) were retested for CDI for recurrent symptoms and found to be negative. No patient had CDI recurrence. There was no significant difference in demographic and surgical characteristics, previous antibiotic or proton pump inhibitor use, or previous hospital admission among the patients with and without CDI. Conclusions: CDI is a rare cause of infectious pouchitis and treatment with oral vancomycin improves symptoms.

Background The emotional health of patients with inflammatory bowel disease (IBD) is critical to self-management, but has been difficult to elucidate in routine care. Patients are often unsure how to communicate their preferences and concerns to their providers in ways that could directly inform shared decision making. Photovoice is an established research methodology used to give vulnerable patients a voice through photographic expression, but has not been previously used in gastroenterology or in IBD. Objective To determine the acceptability and feasibility of using Photovoice in an IBD clinic. Patient involvement Patients with IBD took photos in response to open-ended prompts, participated in a focus group, and brainstormed ways to share their experience with clinicians. Methods Enrolled IBD patients received a digital camera, training on basic usage and 10 open-ended prompts related to management of their IBD. Participants completed one-hour in-depth interviews about their photos, which were audio-recorded and professionally transcribed. Three analysts coded transcripts for themes using qualitative analysis software QSR NVivo 11. A subset of patients participated in a focus group about their Photovoice experience. Gastroenterologists were interviewed, using patient photos as prompts, to evaluate feasibility of using Photovoice in the clinic. Results Eleven patients completed the interviews, with five participating in the focus group. Patients shared and discussed a total of 118 photographs. We identified two major themes: disease burden and patient - provider communication. Five IBD physicians reviewed select patient photos and suggested ways to incorporate Photovoice into clinical practice. Discussion Photovoice may be a feasible methodology for patients with IBD and acceptable for providers to use in a clinical setting. Practical value Photovoice may help providers identify patient concerns and make their communication more patient-centred.

Background Inflammatory bowel disease (IBD) commonly affects women during childbearing years and often requires antepartum therapy. Data regarding effects of biologic exposure on delivery outcomes are limited. We explored whether peripartum biologic exposure impacts wound healing following cesarean section (C-section) and vaginal delivery (VD) in IBD patients. Methods Pregnancy and IBD data from the IBD Preconception and Pregnancy Planning (I-PrePP) Clinic database were collected and analyzed. Primary outcome was frequency of postpartum wound infection in women receiving peripartum biologics, defined as exposure in the third trimester and up to 2 weeks postdelivery relative to nonexposed patients. Secondary outcomes included effect of peripartum biologic timing and IBD phenotype on wound healing. Descriptive statistics summarized data using frequency for categorical variables and median for continuous variables. Univariate analyses tested associations when appropriate. Results Of 100 deliveries (interquartile range, 30–35; median, 33 years old), 58 were C-sections and 42 VDs. Peripartum biologic exposure occurred in 72% (42 of 58) and 57% (24 of 42), respectively. Median time from last dose to delivery was 6 (interquartile range, 4–8) weeks; 21 (32%) received biologics within 72 hours following delivery. Seven infections occurred following C-section among 5 unique CD patients. Peripartum biologic exposure was not associated with infection (4 of 66 [6%] exposed vs 3 of 34 [8.8%] nonexposed; P = .68), nor was disease activity (P = 1.0). Crohn’s disease (P = 0.02), internal penetrating phenotype (P Conclusions Peripartum biologic exposure does not impair postpartum wound healing; however, patients with more complicated disease phenotypes require close monitoring.

ObjectiveNumerous studies have characterized the pain reported by patients with advanced illness in terms of descriptors such as severity, but few have measured pain-related distress. Distress may be important in the clinical approach to pain. To evaluate pain-related distress among adult patients with advanced illness and pain following enrollment in an urban, specialist-level, community-based palliative care program.MethodIn a retrospective cross-sectional analysis, data were extracted from the electronic health records of all patients who were able to complete the pain item from the Condensed Memorial Symptom Assessment Scale at the start of care. Bivariate and multivariate analyses evaluated the associations between distress and both sociodemographics and disease-related information.ResultsThe 506 patients completing the pain item had a mean (SD) age of 70.7 years (13.8); 64.2% were women, 32.1% were Hispanic, 32.6% were white, and 27.7% were black. Of the 503 patients who indicated some level of distress on a 0–4 scale, 221 (43.7%) had high distress, defined as a score ≥3 (“quite a bit” or “very much”). Cancer diagnosis and poor performance status (unable to care for self) were predictors of high pain-related distress (both p < 0.05).Significance of resultsAmong patients with advanced illness who reported pain at the start of care by a specialist palliative care program, high pain-related distress was common, particularly among those with cancer or poor physical function. Further studies are needed to explore the extent to which pain-related distress should inform the assessment and management of pain.

Introduction The emotional health of patients with IBD has been difficult to elucidate in routine IBD care, but is critical to medication adoption, adherence and self-management. Patients often are unsure how to communicate their preferences and concerns to their providers in ways that could directly inform shared decision making. Photovoice is an established research methodology used to give vulnerable patients a voice through alternative communication strategies, but has not been previously used in IBD. Aim Our goal was to determine the acceptability and feasibility of developing a communication tool using photovoice in an IBD clinic. The ultimate goal is to adapt Photovoice to facilitate doctor – patient communication around treatment and wellness goals in the clinic setting. Methods We recruited patients at a single tertiary care IBD center in 2019 to participate in a pilot Photovoice study. Patients received a digital camera, training on basic usage and 10 disease specific prompts focused on goals/strategies they used to manage IBD. For example, “What is the most important thing for your doctor to know about you?” Patients then participated in in-depth interviews where they shared the photos they took and described rationale for their photo choice. The interviews lasted approximately one hour and were audio recorded and professionally transcribed. Three analysts coded transcripts for themes using qualitative analysis software QSR NVivo 11. Subsequently, five physicians were recruited and also participated in in-depth interviews to gauge provider feasibility of incorporating Photovoice into clinical practice. Results Fifteen patients were enrolled, median age 28 IQR (24–40), 66% women, 86% white. Three patients (20%) identified as Hispanic and six (40%) identified as Ashkenazi Jewish. Fourteen transcripts were available for analysis (9 patient and 5 providers). A total of 87 photos were taken and reviewed with patients, with a subset of 15 photos reviewed with physicians. The general themes from patients were physical and psychological aspects of disease, logistical/practical aspects, and future with IBD. Physician response was overwhelmingly supportive of incorporating Photovoice into clinical practice and suggested several ways to incorporate: 1. As discrete parts of visits to foster goal-setting and identify patient priorities. 2. Displayed in the hallways of the clinic to foster community among patients. 3. As part of electronic medical records or as prompts in the waiting room to generate referrals to other resources like psychotherapy, social work and diet consults. Conclusions Photovoice is a feasible methodology for patients with IBD and acceptable to providers to use in a clinical setting. Photovoice may help providers identify patient concerns and tailor their communication and enhance approaches to shared decision making.

Context In the U.S., palliative care programs improve access to hospice through enhanced communication and efficiencies in hospice eligibility review and enrollment. For community-based programs, this task may begin with telephone contact. Objectives To evaluate the incidence and predictors of hospice enrollment following telephonic outreach by a nurse after referral to a community-based, specialist palliative care program. Methods During 2012–2014, 299 consecutive patients who were referred to a palliative care program and subsequently enrolled in hospice provided electronic health record data for a retrospective cohort study. Those who elected hospice after telephonic outreach and before the first palliative care home visit, were compared with those who enrolled in hospice after palliative care visits began, using both bivariate and multivariate analyses. Results Mean (SD) age was 74.1 (18.7) years; 60.2% were women, 44.4% were White, 22.5% were Hispanic, 20.9% were Black, and 9.6% were Asian. In total, 177 patients (59.2%) elected hospice following telephonic outreach and 122 (40.8%) enrolled after home visits began. The former group received a mean of 4.5 calls (median = 3.0) before hospice election. In multivariate analysis, hospice enrollment following telephonic outreach alone was associated with hospital or nursing home referral, not married status, and poor performance status (all P Conclusion More than half of patients electing hospice after referral to a palliative care program did so following telephonic outreach alone. Both sociodemographic and clinical characteristics predicted this outcome. Palliative care programs can improve hospice access through initial telephonic outreach by trained professionals.

Background Total proctocolectomy (TPC) with ileal pouch anal anastomosis (IPAA) is the gold standard surgery for ulcerative colitis (UC) patients with medically refractory disease. The aim of this study was to report the rates and risk factors of inflammatory pouch conditions. Methods This was a retrospective review of UC or IBD unspecified (IBDU) patients who underwent TPC with IPAA for refractory disease or dysplasia between 2008 and 2017. Pouchoscopy data were used to calculate rates of inflammatory pouch conditions. Factors associated with outcomes in univariable analysis were investigated in multivariable analysis. Results Of the 621 patients more than 18 years of age who underwent TPC with IPAA between January 2008 and December 2017, pouchoscopy data were available for 386 patients during a median follow-up period of 4 years. Acute pouchitis occurred in 205 patients (53%), 60 of whom (30%) progressed to chronic pouchitis. Cuffitis and Crohn's disease–like condition (CDLC) of the pouch occurred in 119 (30%) patients and 46 (12%) patients, respectively. In multivariable analysis, female sex was associated with a decreased risk of acute pouchitis, and pre-operative steroid use and medically refractory disease were associated with an increased risk; IBDU was associated with chronic pouchitis; rectal cuff length ≥2 cm and medically refractory disease were associated with cuffitis; age 45–54 at colectomy was associated with CDLC. Rates of pouch failure were similar in chronic pouchitis and CDLC patients treated with biologics and those who were not. Conclusions Inflammatory pouch conditions are common. Biologic use for chronic pouchitis and CDLC does not impact the rate of pouch failure.

Transcranial direct current stimulation (tDCS) treatment requires multiple administrations repeated over weeks or months for optimal benefit. However, for most patients, traveling to the clinic for daily treatment represents enhanced burden and is not feasible. Instead, tDCS devices may be provided for home delivery. This chapter introduces at-home tDCS within a framework of the overall technological development toward remote interventions and monitoring in biomedical research and practice. The overall potential of at-home tDCS with its benefits, challenges, potential risks and feasible precautions are reviewed. Approaches to providing supervised at-home tDCS are presented with an overview of core features of at-home service delivery tDCS protocols, as well as both practical and hypothetical examples of at-home tDCS applications in specific patient populations chosen to reflect the planning and practical considerations needed in different types of common patient groups. The emerging market for direct-to-consumer device options is also discussed. The ethics, challenges, open questions and future trends in at-home tDCS are considered in the context of ongoing technological developments.

There is emerging evidence that tDCS can be used to help manage acute post-operative pain, chronic pain syndromes or headache. The initial part of the chapter provides a brief introduction, followed by a review of evidence and methodological considerations for tDCS use in acute postoperative pain. Cortical targets for stimulation may vary depending upon the location of the acute post-surgical pain in question. Motor cortex stimulation has been found to reduce post-operative opioid requirements and pain ratings in total knee arthroplasty as well as post-lumbar surgery pain while prefrontal cortex stimulation has had similar effects in patients undergoing endoscopic retrograde cholangiopancreatography and total knee arthroplasty.

The stimulation parameters for transcranial direct current stimulation (tDCS), called stimulation dose, are straightforward and are summarized in this chapter. tDCS dose is set by the stimulation current, duration, and electrode montage. And yet it is necessary to emphasize that the apparent simplicity of describing tDCS dose (1) cannot supplement using poorly designed equipment, head-gear, or electrodes and (2) is no justification for insufficient training of operators including electrode preparation. Proper equipment and rigorous training is critical for reproducibility of dose and tolerability, and so a trial that reports dose but fails to consider how to implement that dose through equipment and protocols may not be reproducible (as further discussed in Chaps. 7 and 10), including critical considerations for home use (Chap. 13). Despite the apparent simplicity of tDCS dose there is tremendous potential for flexibility and customization of tDCS: any current can be combined with any duration, with many permutations of electrode montage. There is tremendous sophistication in the design of tDCS dose including leveraging computational models of current flow (Chap. 4) and neurons (Chap. 2) or imaging (Chap. 11). The issues surrounding the selection of stimulation parameters and ensuring they are rigorously applied are thus addressed throughout this book, and this chapter only emphasizes what those parameters are, and additional factors related to tolerability.

Context Referral to community-based palliative care may increase the likelihood of hospice enrollment. Objectives This retrospective cohort study evaluated the incidence, timing, and predictors of hospice enrollment after referral to a community-based palliative care program. Methods Data from 1505 homebound patients referred to community-based palliative care during 2010–2013 were analyzed using multivariate linear and logistic regression. Results Mean (SD) age was 70.4 (16.7) years; 58.8% were women, and race/ethnicity was diverse (white 32.9%, black 29.8%, Hispanic 28.6%, Asian 5.4%). Patients received palliative care services for a mean (SD) of 10.2 (10.2) months (median 6.9; range 0.03–52.2 months). A total of 362 patients (24.1%) were enrolled in hospice after receiving palliative care services for a mean (SD) of 4.8 (6.8) months (median 7.9; range 0.09–25.7 months). The median hospice length of stay was approximately twice as long as other patients enrolled in hospice during the same period. The probability of hospice enrollment increased with shorter duration of palliative care, cancer diagnosis, poorer performance status, and a lower likelihood of poverty. Similarly, significant predictors of a shorter duration of palliative care services before hospice enrollment included both sociodemographic and clinical factors. Conclusion Almost one-quarter of patients were enrolled in hospice while receiving community-based palliative care, and hospice length of stay was relatively long for those who did. Both sociodemographic and clinical characteristics were associated with hospice-related outcomes. Studies are needed to further explore predictors and outcomes of hospice enrollment from palliative care.

Objectives Non-invasive transcranial direct current stimulation (tDCS) over the motor cortex is broadly investigated to modulate functional outcomes such as motor function, sleep characteristics, or pain. The most common montages that use two large electrodes (25-35 cm2 ) placed over the area of motor cortex and contralateral supraorbital region (M1-SO montages) require precise measurements, usually using the 10-20 EEG system, which is cumbersome in clinics and not suitable for applications by patients at home. The objective was to develop and test novel headgear allowing for reproduction of the M1-SO montage without the 10-20 EEG measurements, neuronavigation, or TMS. Materials and methods Points C3/C4 of the 10-20 EEG system is the conventional reference for the M1 electrode. The headgear was designed using an orthogonal, fixed-angle approach for connection of frontal and coronal headgear components. The headgear prototype was evaluated for accuracy and replicability of the M1 electrode position in 600 repeated measurements compared to manually determined C3 in 30 volunteers. Computational modeling was used to estimate brain current flow at the mean and maximum recorded electrode placement deviations from C3. Results The headgear includes navigational points for accurate placement and assemblies to hold electrodes in the M1-SO position without measurement by the user. Repeated measurements indicated accuracy and replicability of the electrode position: the mean [SD] deviation of the M1 electrode (size 5 × 5 cm) from C3 was 1.57 [1.51] mm, median 1 mm. Computational modeling suggests that the potential deviation from C3 does not produce a significant change in brain current flow. Conclusions The novel approach to M1-SO montage using a fixed-angle headgear not requiring measurements by patients or caregivers facilitates tDCS studies in home settings and can replace cumbersome C3 measurements for clinical tDCS applications.

Context Community-based palliative care programs are appearing in the U.S. Many of these programs, particularly those in large cities, serve highly diverse populations. Information about the sources of variation in the conditions that drive illness burden, like symptom distress, may be useful in program planning. Objectives To characterize variation in symptom distress among highly diverse patients referred for palliative care in an urban setting. Methods This is a retrospective cross-sectional survey of data obtained from patients at the time of enrollment in a community-based palliative care program. Symptom distress was measured using the Condensed Memorial Symptom Assessment Scale. Severe distress was defined as reporting either "quite a bit"/"very much" or "frequently"/"almost constantly" for one or more symptoms. Multivariate analysis evaluated the associations between symptom distress and sources of patient variability. Results Patients (n = 1532) were aged 72.2 years on average; 60.0% were women, 56.4% were African-American or Hispanic, and 30.8% were non-English speaking. Most had cancer or congestive heart failure (68.6%); 90.2% had a Karnofsky Performance Status score of 40–70. The most prevalent symptoms were fatigue (71.8%), pain (47.3%), and sadness (41.6%); the most distressing symptoms were fatigue (58.5%), worrying (54.8%), and weight loss (52.1%). In multivariate analyses, Caucasian race, non-Asian language, low Karnofsky Performance Status scores, and cancer diagnosis predicted severe symptom distress. Conclusion In a diverse urban population receiving community-based palliative care, symptoms were highly prevalent and distressing, and both sociodemographic and medical factors predicted severe distress. Program planning should consider the needs of subpopulations at risk for high symptom burden.

Context Quality improvement in end-of-life care generally acquires data from charts or caregivers. "Tracer" methodology, which assesses real-time information from multiple sources, may provide complementary information. Objectives The objective of this study was to develop a valid brief audit tool that can guide assessment and rate care when used in a clinician tracer to evaluate the quality of care for the dying patient. Methods To identify items for a brief audit tool, 248 items were created to evaluate overall quality, quality in specific content areas (e.g., symptom management), and specific practices. Collected into three instruments, these items were used to interview professional caregivers and evaluate the charts of hospitalized patients who died. Evidence that this information could be validly captured using a small number of items was obtained through factor analyses, canonical correlations, and group comparisons. A nurse manager field tested tracer methodology using candidate items to evaluate the care provided to other patients who died. Results The survey of 145 deaths provided chart data and data from 445 interviews (26 physicians, 108 nurses, 18 social workers, and nine chaplains). The analyses yielded evidence of construct validity for a small number of items, demonstrating significant correlations between these items and content areas identified as latent variables in factor analyses. Criterion validity was suggested by significant differences in the ratings on these items between the palliative care unit and other units. The field test evaluated 127 deaths, demonstrated the feasibility of tracer methodology, and informed reworking of the candidate items into the 14-item Tracer EoLC v1 . Conclusion The Tracer EoLC v1 can be used with tracer methodology to guide the assessment and rate the quality of end-of-life care.