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Privilege through the looking-glass
\"Privilege Through the Looking-Glass is a collection of original essays that explore privilege and status characteristics in daily life. This collection seeks to make visible that which is often invisible. It seeks to sensitize us to things we have been taught not to see. Privilege, power, oppression, and domination operate in complex and insidious ways, impacting groups and individuals. And yet, these forces that affect our lives so deeply seem to at once operate in plain sight and lurk in the shadows, making them difficult to discern. Like water to a fish, environments are nearly impossible to perceive when we are immersed in them. This book attempts to expose our environments. With engaging and powerful writing, the contributors share their personal stories as a means of connecting the personal and the public. This volume applies an intersectional perspective to explore how race, class, gender, sexuality, education, and ableness converge, creating the basis for privilege and oppression. Privilege Through the Looking-Glass encourages readers to engage in self and social reflection, and can be used in a range of courses in sociology, social work, communication, education, gender studies, and African American studies. Each chapter includes discussion questions and/or activities for further engagement\"--Publisher description.
Book
Burden of disease and adaptation to life in patients with Crohn’s perianal fistula: a qualitative exploration
Background
Perianal fistulas are a challenging manifestation of Crohn’s disease. Best medical and surgical therapy results in only about a third of patients remaining in remission at one year on maintenance treatment and sustained healing is often elusive. There is little published data on patient perspective of living with the condition or coping strategies in the face of non-curative/non-definitive treatment. We aimed to understand the experience of living with perianal fistula(s) and their impact on quality of life and routine functioning.
Methods
This exploratory qualitative study used purposive sampling to recruit participants with current / previous diagnosis of Crohn’s anal fistulas, from national IBD / bowel disease charities. The “standards for reporting qualitative research” (SRQR) recommendations were followed. Unstructured individual face-to-face interviews were audio recorded, transcribed and analysed thematically. Early themes were reviewed by the study team including patient advocates, clinicians and qualitative researchers.
Results
Twelve interviews were conducted, achieving apparent data saturation. Three broad themes were uncovered:
Burden of symptoms
;
Burden of treatment
; and
Impact on emotional, physical and social well-being
. Each included several sub-themes, with considerable interplay between these. The impact of perianal fistula(s) on patients with CD is intense and wide reaching, negatively affecting intimate, close and social relationships. Fistulas cause losses in life and work-related opportunities, and treatments can be difficult to tolerate.
Conclusion
Crohn’s perianal fistulas exert a heavy negative physical and emotional impact on patients. These findings will inform development of a patient reported outcome measure to assess treatment effectiveness and quality of life for patients living with this challenging condition.
Journal Article
Eicosapentaenoic acid reduces rectal polyp number and size in familial adenomatous polyposis
ObjectiveThe omega-3 polyunsaturated fatty acid eicosapentaenoic acid (EPA) has anticolorectal cancer activity in vitro and in preclinical models. The present study tested whether a novel, enteric-coated formulation of EPA, as the free fatty acid (EPA-FFA), has chemopreventative efficacy in patients with familial adenomatous polyposis (FAP), in a randomised, double-blind, placebo-controlled trial.MethodsPatients undergoing endoscopic surveillance of their retained rectum postcolectomy were randomised to EPA-FFA (SLA Pharma) 2 g daily or placebo for 6 months. The number and size of polyps in an area of mucosa defined by a tattoo were determined before and after intervention. Global rectal polyp burden was scored (−1, 0, +1) by examination of video endoscopy records. Mucosal fatty acid content was measured by gas chromatography–mass spectrometry.Results55 patients with FAP were evaluated by an intention-to-treat analysis (EPA-FFA 28, placebo 27). Treatment with EPA-FFA for 6 months was associated with a mean 22.4% (95% CI 5.1% to 39.6%) reduction in polyp number (p=0.012) and a 29.8% (3.6% to 56.1%) decrease in the sum of polyp diameters (p=0.027). Global polyp burden worsened over 6 months in the placebo group (−0.34) unlike the EPA-FFA group (+0.09, difference 0.42 (0.10–0.75), p=0.011). EPA-FFA treatment led to a mean 2.6-fold increase in mucosal EPA levels (p=0.018 compared with placebo). EPA-FFA was well tolerated with an incidence of adverse events similar to placebo.ConclusionsEPA-FFA has chemopreventative efficacy in FAP, to a degree similar to that previously observed with selective cyclo-oxygenase-2 inhibitors. EPA holds promise as a colorectal cancer chemoprevention agent with a favourable safety profile.Clinical trial numberNCT00510692.
Journal Article
Multiple Colorectal Adenomas, Classic Adenomatous Polyposis, and Germ-Line Mutations in MYH
This study explores the link between germ-line mutations in the DNA-repair gene
MYH
and recessive inheritance of multiple colorectal adenomas and classic adenomatous polyposis coli. Patients with biallelic mutations and multiple colorectal adenomas had more polyps and were more likely to have colon cancer than those without
MYH
mutations.
Most Mendelian predispositions to colorectal tumors are dominant and involve tumor-suppressor genes. Recently, Al-Tassan et al.
1
reported on a single Welsh family with three affected members and recessive inheritance of multiple colorectal adenomas and carcinoma. The patients' tumors had an excess of somatic mutations consisting of the substitution of a thymine–adenine pair for a guanine–cytosine pair (G:C→T:A) in the adenomatous polyposis coli (
APC
) gene, which is typical of changes caused by oxidative damage to DNA.
2
–
7
This damage produces the stable guanine adduct 8-oxo-7,8-dihydroxy-2'-deoxyguanosine, which tends to mispair with adenine, leading to the observed mutation. Levels of 8-oxo-7,8-dihydroxy-2'-deoxyguanosine . . .
Journal Article
Development and initial psychometric validation of a patient-reported outcome measure for Crohn’s perianal fistula: the Crohn’s Anal Fistula Quality of Life (CAF-QoL) scale
IntroductionCrohn’s perianal fistulas are challenging for patients and clinicians. Many do not respond to available treatments and despite recommendations by a global consensus, there are currently no specific patient-derived quality of life tools to measure response to treatment. We present a new validated patient-reported outcome measure (PROM) for this complicated disease phenotype.MethodsA draft questionnaire was generated using unstructured qualitative patient interviews on the experience of living with Crohn’s perianal fistula, a nationwide multidisciplinary consensus exercise, a systematic review of outcomes assessing medical/surgical/combined treatment and a patient and public involvement day. Psychometric properties were assessed including construct validity (by comparison with the Hospital Anxiety and Depression Scale (HADS) and the UK Inflammatory Bowel Disease Questionnaire (UK-IBDQ)), and reliability and responsiveness was assessed by test–retest analysis.ResultsData from 211 patients contributed to development of a final 28-item questionnaire. The Crohn’s Anal Fistula Quality of Life (CAF-QoL) demonstrated good internal consistency (Cronbach’s alpha 0.88), excellent stability (intraclass correlation 0.98) and good responsiveness and construct validity, with positive correlation with the UK-IBDQ and HADS.ConclusionThe CAF-QoL scale is ready for use as a PROM in research and clinical practice. It complements objective clinical evaluation of fistula by capturing impact on the patient.
Journal Article
Innovation in the imaging of perianal fistula: a step towards personalised medicine
Background:
Perianal fistula is a topic both hard to understand and to teach. The key to understanding the treatment options and the likely success is deciphering the exact morphology of the tract(s) and the amount of sphincter involved. Our aim was to explore alternative platforms better to understand complex perianal fistulas through three-dimensional (3D) imaging and reconstruction.
Methods:
Digital imaging and communications in medicine images of spectral attenuated inversion recovery magnetic resonance imaging (MRI) sequences were imported onto validated open-source segmentation software. A specialist consultant gastrointestinal radiologist performed segmentation of the fistula, internal and external sphincter. Segmented files were exported as stereolithography files. Cura (Ultimaker Cura 3.0.4) was used to prepare the files for printing on an Ultimaker 3 Extended 3D printer. Animations were created in collaboration with Touch Surgery™.
Results:
Three examples of 3D printed models demonstrating complex perianal fistula were created. The anatomical components are displayed in different colours: red: fistula tract; green: external anal sphincter and levator plate; blue: internal anal sphincter and rectum. One of the models was created to be split in half, to display the internal opening and allow complexity in the intersphincteric space to better evaluated. An animation of MRI fistulography of a trans-sphincteric fistula tract with a cephalad extension in the intersphincteric space was also created.
Conclusion:
MRI is the reference standard for assessment of perianal fistula, defining anatomy and guiding surgery. However, communication of findings between radiologist and surgeon remains challenging. Feasibility of 3D reconstructions of complex perianal fistula is realized, with the potential to improve surgical planning, communication with patients, and augment training.
Journal Article
Developing a core outcome set for fistulising perianal Crohn’s disease
ObjectiveLack of standardised outcomes hampers effective analysis and comparison of data when comparing treatments in fistulising perianal Crohn’s disease (pCD). Development of a standardised set of outcomes would resolve these issues. This study provides the definitive core outcome set (COS) for fistulising pCD.DesignCandidate outcomes were generated through a systematic review and patient interviews. Consensus was established via a three-round Delphi process using a 9-point Likert scale based on how important they felt it was in determining treatment success culminating in a final consensus meeting. Stakeholders were recruited nationally and grouped into three panels (surgeons and radiologists, gastroenterologists and IBD specialist nurses, and patients). Participants received feedback from their panel (in the second round) and all participants (in the third round) to allow refinement of their scores.ResultsA total of 295 outcomes were identified from systematic reviews and interviews that were categorised into 92 domains. 187 stakeholders (response rate 78.5%) prioritised 49 outcomes through a three-round Delphi study. The final consensus meeting of 41 experts and patients generated agreement on an eight domain COS. The COS comprised three patient-reported outcome domains (quality of life, incontinence and a combined score of patient priorities) and five clinician-reported outcome domains (perianal disease activity, development of new perianal abscess/sepsis, new/recurrent fistula, unplanned surgery and faecal diversion).ConclusionA fistulising pCD COS has been produced by all key stakeholders. Application of the COS will reduce heterogeneity in outcome reporting, thereby facilitating more meaningful comparisons between treatments, data synthesis and ultimately benefit patient care.
Journal Article
Effect of MRI on clinical outcome of recurrent fistula-in-ano
Recurrent fistula-in-ano is usually due to sepsis missed at surgery, which can be identified by MRI. We aimed to establish the therapeutic effect of MRI in patients with fistula-in-ano. We did MRI in 71 patients with recurrent fistula, with further surgery done at the discretion of the surgeon. Surgery and MRI agreed in 40 patients, five (13%) of whom had further recurrence, compared with 16 (52%) of 31 in whom surgery and MRI disagreed (p=0·0005). Further recurrence in all 16 was at the site predicted by MRI. For surgeons who always acted on MRI, further recurrences arose in four of 25 (16%) operations versus eight of 14 (57%) operations for those who ignored imaging (p=0·008). Surgery guided by MRI reduces further recurrence of fistula-in-ano by 75% and should be done in all patients with recurrent fistula.
Journal Article
Etiology of perianal Crohn's disease: Role of genetic, microbiological, and immunological factors
Perianal fistulation is a common complication of Crohn's disease (CD). Fistulating perianal CD appears to represent a distinct phenotype of CD, separate from luminal fistulating disease, with differing disease behavior and which often requires different therapeutic strategies. The etiology of Crohn's perianal fistulae appears to have genetic, microbiological, and immunological components. Relationships with IBD5, which codes for the organic/cation transporter and IRGM, important in the autophagy pathway, have been identified but further genetic associations remain elusive. The partially efficacious use of antibiotics and fecal diversion imply a microbiological component and, similarly, the partial efficacy of immunosuppressants and anti-tumor necrosis factor alpha (TNFα) treatments suggest not only that an immunological process is taking place, but also that microbiota alone cannot account for the pathogenesis. Recent work implicates failures in the tissue injury/repair process with myofibroblasts, matrix metalloproteinases, and an epithelial-to-mesenchymal transition being possible culprits. We examine these areas in a review of the current understanding of the etiology of Crohn's perianal fistulae.
Journal Article