Dataset Information

Perception gaps between patients with ulcerative colitis and healthcare professionals: an online survey.

ABSTRACT: BACKGROUND: The purpose of this study was to examine the differing perspectives and perceptual gaps relating to ulcerative colitis (UC) symptoms and their management between patients and healthcare professionals (HCPs). METHODS: Structured, cross-sectional, Web-based questionnaires designed to assess a variety of disease indices were completed by adult patients with UC and HCPs involved in the care of patients with UC from Canada, France, Germany, Ireland, Spain, and the United Kingdom. RESULTS: Surveys were completed by 775 patients, 475 physicians, and 50 nurses. Patient self-reported classification of disease severity revealed generally greater severity (mild, 32%; moderate, 53%) compared with physician and nurse estimates of UC severity among their caseloads (mild, 52% and 49%; moderate, 34% and 37%, respectively). Patients reported that an average of 5.5 (standard deviation, 11.0) flares (self-defined) occurred over the past year, compared with 3.4 and 3.8 flares per year estimated by physicians and nurses. Perceived flare triggers differed between patients (stress ranked first) and HCPs (natural disease course ranked first). Fifty-five percent of patients stated that UC symptoms over the past year had affected their quality of life, while physicians and nurses estimated that 35% to 37% of patients would have a reduced quality of life over the same period. Patients ranked urgency and pain as the most bothersome symptoms, while physicians and nurses ranked urgency and stool frequency highest. About half of patients (47%) defined remission as experiencing no symptoms; by comparison, 62% to 63% of HCPs defined remission as requiring the complete absence of symptoms. HCPs (doctors/nurses in general practice and/or hospital) were regarded by patients as their main source of UC information by 72%; however, 59% reported not arranging regular visits to see their HCPs. CONCLUSIONS: This large survey identified important differences between patients' and HCPs' perceptions of the impact of UC symptoms on patients' lives. Notably, HCPs may underestimate the effect of specific UC symptoms on patients and may fail to recognize issues that are important to patients.

SUBMITTER: Schreiber S

PROVIDER: S-EPMC3523079 | biostudies-other | 2012

REPOSITORIES: biostudies-other

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Perception gaps between patients with ulcerative colitis and healthcare professionals: an online survey.

Schreiber Stefan S Panés Julián J Louis Edouard E Holley Derek D Buch Mandy M Paridaens Kristine K

BMC gastroenterology 20120815

<h4>Background</h4>The purpose of this study was to examine the differing perspectives and perceptual gaps relating to ulcerative colitis (UC) symptoms and their management between patients and healthcare professionals (HCPs).<h4>Methods</h4>Structured, cross-sectional, Web-based questionnaires designed to assess a variety of disease indices were completed by adult patients with UC and HCPs involved in the care of patients with UC from Canada, France, Germany, Ireland, Spain, and the United King ...[more]

PMID: 22894661

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Project description:Spondyloarthritis (SpA) is a group of inflammatory disorders, including axial SpA (axSpA), characterized by inflammation in the spine and sacroiliac joints. Healthcare professionals have a crucial role in diagnosing and managing axSpA. Assessing their knowledge, perceptions, and practices is essential to enhance patient care. The objective of this study is to evaluate these factors by conducting an online survey. This online survey was performed using SurveyMonkey.com to assess healthcare professionals' knowledge, perceptions, and practices related to axSpA diagnosis, management, and monitoring. The questionnaire included questions about definitions, management strategies, monitoring approaches, treatment options, and barriers to care. Convenience sampling was used, and the data were analyzed descriptively by Microsoft Excel. One hundred sixty-four healthcare professionals participated; most respondents were rheumatologists from various geographic locations (27 countries). Most participants were familiar with axSpA definitions and diagnostic criteria, demonstrating high expertise. Variations were seen in follow-up intervals and diagnostic preferences, reflecting clinical heterogeneity. Seventy-two (43.9%) individuals had a multidisciplinary team, frequently including rheumatologists, physiotherapists, and radiologists. Of the participants, 73 (44.5%) had online/telephone follow-up sessions. The pharmacological and non-pharmacological treatment approaches varied, pointing to the importance of personalized care. Glucocorticoid use varied among countries. Recognizing inflammatory back pain, interpreting radiographs, and diagnosing early was essential to medical education. This study provides beneficial data on healthcare professionals' knowledge, perceptions, and practices regarding axSpA. While diagnostic familiarity and multidisciplinary approach are positives, there is a potential to standardize management, improve telemedicine services, remove barriers to physical activity, and optimize treatment options.

Project description:OBJECTIVES:To establish healthcare professionals' (HCPs) views about clinical roles, and the barriers and enablers to delivery of diabetes care for people with severe mental illness (SMI). DESIGN:Cross-sectional, postal and online survey. SETTING:Trusts within the National Health Service, mental health and diabetes charities, and professional bodies. PARTICIPANTS:HCPs who care for people with type 2 diabetes mellitus (T2DM) and/or SMI in the UK. PRIMARY AND SECONDARY OUTCOME MEASURES:The barriers, enablers and experiences of delivering T2DM care for people with SMI, informed by the Theoretical Domains Framework. RESULTS:Respondents were 273 HCPs, primarily mental health nurses (33.7%) and psychiatrists (32.2%). Only 25% of respondents had received training in managing T2DM in people with SMI. Univariate analysis found that mental health professionals felt responsible for significantly fewer recommended diabetes care standards than physical health professionals (P<0.001). For those seeing diabetes care as part of their role, the significant barriers to its delivery in the multiple regression analyses were a lack of knowledge (P=0.003); a need for training in communication and negotiation skills (P=0.04); a lack of optimism about the health of their clients (P=0.04) and their ability to manage T2DM in people with SMI (P=0.003); the threat of being disciplined (P=0.02); fear of working with people with a mental health condition (P=0.01); a lack of service user engagement (P=0.006); and a need for incentives (P=0.04). The significant enablers were an understanding of the need to tailor treatments (P=0.04) and goals (P=0.02) for people with SMI. CONCLUSIONS:This survey indicates that despite current guidelines, diabetes care in mental health settings remains peripheral. Even when diabetes care is perceived as part of an HCP's role, various individual and organisational barriers to delivering recommended T2DM care standards to people with SMI are experienced.

Project description:BackgroundPrevious studies have indicated that the appendix may be a priming site of ulcerative colitis (UC). Appendectomy is inversely associated with the development of UC, and is suggested to have a beneficial effect on the disease course in patients with refractory disease.ObjectiveThe aim of the current study was to assess histological features of appendices from patients with UC and their clinical relevance.MethodsPatients with UC in remission and active UC (therapy refractory) that underwent appendectomy between 2012 and 2019 were included. Histological features of UC appendices were compared to those of patients with acute appendicitis and colon carcinoma. The Robarts Histopathology Index (RHI) was used to assess appendiceal inflammation. In patients with active UC, histological and clinical characteristics were compared between patients with and without endoscopic response following appendectomy.ResultsIn total, 140 appendix specimens were assessed (n = 35 UC remission, n = 35 active UC, n = 35 acute appendicitis, n = 35 colon carcinoma). Histological features of appendices from UC patients looked like UC rather than acute appendicitis. The presence of active appendiceal inflammation was comparable between patients in remission versus active disease (53.7% vs. 46.3%, p = 0.45) and limited versus extensive disease (58.5% vs. 41.5%, p = 0.50). Endoscopic response (Mayo 0-1) following appendectomy, assessed in 28 therapy refractory patients, was more frequently seen in patients with higher RHI scores (RHI > 6: 81.8% vs. RHI ≤ 6: 9.1%, p = 0.03) and limited disease (proctitis/left sided 63.6% vs. pancolitis 36.4%, p = 0.02).ConclusionThe presence of active appendiceal inflammation is common in UC and does not correlate with colonic disease activity. More than 50% of UC patients in remission showed active histological disease in the appendix. Favorable response to appendectomy for refractory UC was seen in cases with ulcerative appendicitis. These findings might support the role of the appendix as a pivotal organ in UC.

Dataset Information

Perception gaps between patients with ulcerative colitis and healthcare professionals: an online survey.

Publications

Perception gaps between patients with ulcerative colitis and healthcare professionals: an online survey.

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