Diagnostic and periprocedural discomfort in inflammatory bowel disease: a concept analysis using the Rodgers evolutionary method

2021 ◽  
Vol 19 (10) ◽  
pp. 16-24
Author(s):  
Oana-Irina Nistor ◽  
Monakshi Sawhney ◽  
Rosemary Wilson
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Disease Burden ◽  
Subjective Experience ◽  
Healthcare Providers ◽  
Concept Analysis ◽  
Journal Articles ◽  
Conceptual Clarity ◽  
Inflammatory Bowel ◽  
Significant Disease

Background: Inflammatory bowel disease (IBD) is a chronic, autoimmune gastrointestinal illness with a significant disease burden. The concept of discomfort in IBD lacks conceptual clarity. Aims: To analyse the concept of diagnostic and periprocedural discomfort in IBD and provide an understanding of its evolution, use in IBD research and implications for clinical practice through its attributes, antecedents, consequences and related terms. Methods: The Rodgers evolutionary concept analysis method guided this inductive approach. Findings: Seven journal articles, a dictionary, a thesaurus and one book were included in this analysis. The analysis yielded 12 surrogate terms, three attributes, five antecedents and one consequence. Diagnostic and periprocedural discomfort in IBD is an unpleasant, multidimensional and subjective experience, with biological, psychological or technical antecedents, which can occur independently of pain. Conclusion: Further research is required to enhance understanding of discomfort to improve the care of people living with IBD and their relationship with healthcare providers.

PATIENTS’ JOURNEY THROUGH INFLAMMATORY BOWEL DISEASE (IBD): A QUALITATIVE STUDY

2021 ◽  
Vol 27 (Supplement_1) ◽  
pp. S53-S54
Author(s):  
Tina Aswani Omprakash ◽  
Norelle Reilly ◽  
Jan Bhagwakar ◽  
Jeanette Carrell ◽  
Kristina Woodburn ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Qualitative Study ◽  
Patient Experience ◽  
Bowel Disease ◽  
Quality Care ◽  
Diagnostic Testing ◽  
Healthcare Providers ◽  
Indeterminate Colitis ◽  
Patient Journey ◽  
Inflammatory Bowel

Abstract Background Inflammatory bowel disease (IBD) is a debilitating intestinal condition, manifesting as Crohn’s disease (CD), ulcerative colitis (UC) or indeterminate colitis (IC). The patient experience is impacted by a lack of awareness from other stakeholders despite growing global disease prevalence. To gain deeper insight of the patient experience, promote quality care, and enhance quality of life, we performed a qualitative study of the patient journey starting from pre-diagnosis through treatment. Methods U.S. patients with IBD were recruited via UC/CD support groups and organizations, social media platforms, blog followers, and personal networks. Participants were screened via an emailed survey and asked to self-identify as medically diagnosed on the basis of reported diagnostic testing. Interviews were conducted by qualitative researchers by phone or web conferencing. Open-ended questions were developed to support and gather information about our learning objectives—primarily, our desire to understand the unique experiences of UC/CD patients in their journey from symptom onset through diagnosis, treatment and maintenance (e.g. “Upon diagnosis, what were your immediate thoughts about the condition?”). This qualitative data were analyzed using Human-Centered Design methodology, including patient typologies (personas), forced temporal zoom (journey maps), forced semantic zoom (stakeholder system mapping), and affinity mapping for pattern recognition of unmet needs. Results A total of 32 patients were interviewed: N=17 CD patients, N=13 UC patients and N=2 IC patients. The interviewed population reflected regional, demographic, and disease-related diversity (Table 1). Five unique, mutually exclusive journeys were identified to understand and classify patient experiences: (1) Journey of Independence, (2) Journey of Acceptance, (3) Journey of Recognition, (4) Journey of Passion and (5) Journey of Determination (Figure 1). Patients with IBD expressed a need for increased awareness, education, and training for providers to shorten the path to diagnosis. Mental health support was found to be a critical gap in care, particularly for major treatment decisions (e.g., surgery). The inclusion of emotional support into the treatment paradigm was perceived as essential to long-term wellness. Patient attitudes and self-advocacy varied on their individual journeys; understanding these journeys may accelerate time to diagnosis and treatment. Conclusion Better understanding of patient journeys can help healthcare providers improve their approach to patient care and coordination.

scholarly journals P521 Correlation between physician disease assessment in Ulcerative Colitis and burden of disease: ICONIC 2-year data of 120 patients in Turkey

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S498-S498
Author(s):  
O Sezgin ◽  
O Atug ◽  
C Gonen ◽  
G Can ◽  
A E Duman ◽  
...  
Keyword(s):  
Ulcerative Colitis ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Disease Burden ◽  
Disease Assessment ◽  
Chronic Inflammatory Bowel Disease ◽  
Pictorial Representation ◽  
Final Visit ◽  
Inflammatory Bowel ◽  
The Mean

Abstract Background Ulcerative colitis (UC) is a chronic inflammatory bowel disease (IBD), and the overall burden is increasing at the global level. Differences in perceptions of UC-related burden may highlight dramatic degree insufficient patient-physician communication. ICONIC is a prospective, non-interventional, observational study assessing disease burden in adults with UC using Pictorial Representation of Illness and Self Measure (PRISM). The local results of ICONIC study for Turkey are presented. Methods Patients aged ≥18 years with early UC (diagnosed ≤36 months) were enrolled. At baseline and every 6 months, patient and physician reported outcomes were collected using PRISM, the Simple Clinical Colitis Activity Index (SCCAI and P-SCCAI), The Rating Form of IBD Patients’ Concerns (RFIPC), the Short Inflammatory Bowel Disease Questionnaire (SIBDQ), and the Patient Health Questionnaire-9 (PHQ-9). Correlations between the patient assessed PRISM and other measurement tools were evaluated with Pearson correlation coefficient. Results One hundred and twenty patients were included (77 [64.2%] female; mean age 35.2 years). Physician-assessed disease severity was: severe 23 [19.2%], moderate 42 [35.0%], mild 40 [33.3%], in remission 15 [12.5%]. The mean ± SD physician- and patient-assessed PRISM scores were 4.8 ± 2.3 cm (range: 0.0–9.0) and 4.1 ± 2.6 cm (range: 0.0–8.5) at baseline and increased to 6.1 ± 2.3 cm (range: 0.1–8.5) and 5.5 ± 2.7 cm (range: 0.0–9.3) at the final visit, respectively, indicating an improvement in the perceived disease burden. The mean values of physician-SCCAI and P-SCCAI were 3.8 ± 3.5 and 5.5 ± 4.3 at baseline and decreased to 1.4 ± 2.5 and 2.7 ± 3.2 at the final visit, respectively, showing a decrease in disease activity. At baseline, the RFIPC and PHQ-9 values were 2.7 ± 1.7 and 8.0 ± 5.5 and decreased to 2.2 ± 2.0 and 5.2 ± 4.5 at the final visit, respectively. Patient-assessed SIBDQ was 43.8 ± 14.5 at baseline and increased to 54.0 ± 13.0 at the final visit. The strongest correlation of patient-assessed PRISM was with the physician-assessed PRISM (Spearman rho = 0.69, p<0.0001), followed by SCCAI (rho = -0.56, p<0.0001). Differences between physician- and patient-assessed PRISM scores were statistically significant (baseline: p=0.0010 vs. final visit: p=0.0206), highlighting an underestimation of patient’s suffering by physicians. Conclusion In the Turkish ICONIC sub-study, majority of patients on treatment showed improved outcomes during the follow-up period. A moderate correlation between patient-assessed PRISM and other measurement instruments represents that PRISM may be used as surrogate marker for patient suffering.

Inflammatory Bowel Disease in migrant populations – a narrative review

2020 ◽  
Vol 21 ◽  
Author(s):  
Maria Manuela Estevinho ◽  
Diogo José M. Lopes ◽  
Miguel Torre Souto ◽  
Fernando Magro
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Disease Burden ◽  
First Generation ◽  
Web Of Science ◽  
Migrant Populations ◽  
Age At Migration ◽  
Inflammatory Bowel ◽  
First Generation Migrants ◽  
Socio Economic Factors

Background: The incidence of inflammatory bowel disease (IBD) continues to rise worldwide and despite the advances on pharmacotherapy, the etiopathogenesis of Crohn’s disease (CD) and ulcerative colitis (UC) remains underexplained. In this context, the migratory waves of the last decades created a challenging setting to analyze the evolution of IBD prevalence and to infer its triggering factors. Objective: Our study aimed to overview the literature regarding IBD prevalence and phenotype in first- and secondgeneration migrants. Methods: A non-systematic review was performed following electronic (PubMed and Web of Science) and manual searches on relevant topics. Results: Overall, first-generation migrants tend to maintain the IBD risk of the native country. On the following generation, the risk tends to converge to that of the destination country. Earlier age at migration modulates IBD risk, suggesting that the degree of exposure to environmental and socio-economic factors can be decisive for disease progression. In general, CD needs more time to reach a disease burden similar to that of the host country, indicating that UC may be more affected by nongenetic factors and genetic-nongenetic interactions. Conclusion: IBD phenotypes and natural history vary in migrants and according to ethnicity; however, the trends are not consensual among cohorts. Further studies are warranted to analyze the effect of environmental risk factors in different ethnic groups, providing background to move towards identification of at-risk individuals, prevention and earlier diagnosis of IBD.

Fr345 DISEASE BURDEN AND OUTCOMES OF PANCREATITIS IN INFLAMMATORY BOWEL DISEASE

2021 ◽  
Vol 160 (6) ◽  
pp. S-302
Author(s):  
Motasem Alkhayyat ◽  
Mohannad Abou Saleh ◽  
Mohammad Abureesh ◽  
Ashraf Almomani ◽  
Thabet Qapaja ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Disease Burden ◽  
Inflammatory Bowel

scholarly journals Quality of care in adult patients with inflammatory bowel disease transferring between healthcare providers: multicentre audit

2020 ◽  
Vol 12 (1) ◽  
pp. 5-10 ◽  
Author(s):  
◽  
Omer F Ahmad ◽  
Homira Ayubi ◽  
Jennie Clough ◽  
Robin Dart ◽  
...  
Keyword(s):  
Patient Outcome ◽  
Primary Care ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Healthcare Providers ◽  
Adult Patients ◽  
Transfer Of Care ◽  
Data Points ◽  
Inflammatory Bowel

BackgroundInflammatory bowel disease (IBD) predominantly affects young adults at critical socioeconomic periods of their lives. There are no studies examining the process of transfer of care for adult patients with IBD changing healthcare providers. Our aims were to assess the quality of referral information provided when patients with an established IBD diagnosis transfer care between heathcare providers and to assess the impact of referral quality on patient outcome.MethodsRetrospective data pertaining to IBD transfer of care referrals were collected from 16 hospitals across London over a 2-month period. Data were collected on patient demographics, source and content of referral and cross-referenced with an established transfer of care checklist. Patient outcome within the 6 months following transfer was also documented.Results154 cases were identified, over half of which transferred due to patient relocation. Details included in transfer letters were in many cases incomplete. In over 70% of cases, the letter came from primary care, including when a tertiary opinion was sought. Although referrals from primary care contained fewer patient data points, there was no association with poor patient outcomes at 6 months.ConclusionThis is the first study examining the quality of transfer of care in adult patients with IBD. We highlighted a significant and underreported issue and found that the majority of referrals were led by primary care. Though the inclusion in the referral of fewer data points was not associated with poor outcomes, we highlighted an area where gastroenterologists might take more responsibility to provide smooth and robust transfer of care.

scholarly journals High Disease Burden Drives Indirect Costs in Employed Inflammatory Bowel Disease Patients: The WORK-IBD Study

2020 ◽  
Author(s):  
Sara van Gennep ◽  
Sanne W Evers ◽  
Svend T Rietdijk ◽  
Marieke E Gielen ◽  
Nanne K H de Boer ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Disease Activity ◽  
Bowel Disease ◽  
Disease Burden ◽  
Productivity Loss ◽  
Work Productivity ◽  
Indirect Costs ◽  
Mean Difference ◽  
Activity Impairment ◽  
Inflammatory Bowel

Abstract Background Work productivity (WP) loss includes absence from work (absenteeism) and productivity loss while working (presenteeism), which leads to high indirect costs in inflammatory bowel disease (IBD). Prior health economic analyses predominantly focused on absenteeism. Here we focus on presenteeism and assess predictors of WP loss, fatigue, and reduced health-related quality of life (HRQL). Methods Employed IBD patients completed the following surveys: Work Productivity and Activity Impairment, Multidimensional Fatigue Inventory, and Short Inflammatory Bowel Disease Questionnaire. Predictors were assessed using uni- and multivariable regression analyses. Annual costs were calculated using percentages of WP loss, hourly wages, and contract hours. Results Out of 1590 invited patients, 768 (48%) responded and 510 (32%) were included. Absenteeism, presenteeism, and overall WP loss were reported by 94 (18%), 257 (50%), and 269 (53%) patients, respectively, resulting in mean (SD) annual costs of €1738 (5505), €5478 (8629), and €6597 (9987), respectively. Disease activity and active perianal disease were predictors of WP loss (odds ratio [OR] = 6.6; 95% confidence interval [CI], 3.6-12.1); OR = 3.7; 95% CI, 1.5-8.7). Disease activity and arthralgia were associated with fatigue (OR = 3.6; 95% CI, 1.9-6.8; OR = 1.8; 95% CI, 1.0-3.3)) and reduced HRQL (OR = 10.3; 95% CI, 5.9-17.9; OR = 2.3; 95 % CI, 1.4-3.8). Fatigue was the main reason for absenteeism (56%) and presenteeism (70%). Fatigue and reduced HRQL led to increased costs compared with absence of fatigue and normal HRQL (mean difference = €6630; 95% CI, €4977–€8283, P < 0.01; mean difference = €9575; 95% CI, €7767–€11,384, P < 0.01). Conclusions Disease activity and disease burden lead to WP loss in approximately half of the employed IBD population, driving indirect costs. Fatigue is the most important reason for WP loss.

scholarly journals Patients’ accounts of living with and managing inflammatory bowel disease in rural Southern New Zealand: a qualitative study

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e041789
Author(s):  
Lauralie Richard ◽  
Geoff Noller ◽  
Sarah Derrett ◽  
Trudy Sullivan ◽  
Fiona Doolan-Noble ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
New Zealand ◽  
Bowel Disease ◽  
Healthcare Providers ◽  
Strong Relationship ◽  
Healthcare Team ◽  
Specialist Care ◽  
Structured Interviews ◽  
Urban Centre ◽  
Inflammatory Bowel

ObjectiveTo explore how adults living with inflammatory bowel disease (IBD) in rural New Zealand manage their condition and engage with healthcare providers.DesignQualitative exploratory design with semi-structured interviews analysed thematically.Setting and participantsInterviews were conducted with 18 people living with IBD in the Otago region of the South Island.ResultsFive important constructs were identified: (1) journey to confirming and accepting diagnosis; (2) importance of the relationship with the healthcare team; (3) support from others; (4) learning how to manage IBD and (5) care at a distance—experiences of rurality. Pathways to confirming diagnosis involved two contrasting journeys: a long and slow process where diagnosis remained unclear for a prolonged period, and a more acute process where diagnosis typically came as a shock. Central to the acceptance process was acknowledging the chronicity of the condition, which involved feelings of grief but also the fear of judgement and stigma. Building a strong relationship with the specialist was central to medical management, particularly in the initial stage following diagnosis. Support from others was critical, enabling participants to progress through acceptance of the disease and developing confidence in its everyday management. Participants shared different strategies on how to manage IBD, describing a ‘trial and error’ process of ‘finding what is right’ at different stages of the condition. Managing IBD rurally involved challenges of access to specialist care, with perceptions of delayed referrals and concerns about disparities in specialist access compared with urban counterparts. Rural living also had financial implications—cost of time and cost of mobilising resources for long travels to the urban centre for treatments.ConclusionsFindings from this study provide a rich understanding of the complex health journeys of people living with IBD and the challenges of managing the condition rurally.

scholarly journals Healthcare providers’ perception of faecal microbiota transplantation with clostridium difficile infection and inflammatory bowel disease: a quantitative systematic review

2021 ◽  
Vol 14 ◽  
pp. 175628482110426
Author(s):  
Yanghua Liu ◽  
Kal Alnababtah ◽  
Simon Cook ◽  
Ying Yu
Keyword(s):  
Systematic Review ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Healthcare Providers ◽  
Faecal Microbiota ◽  
Cross Sectional ◽  
Clostridioides Difficile ◽  
Clostridioides Difficile Infection ◽  
Inflammatory Bowel ◽  
Cross Sectional Studies

Background: Clostridioides difficile infection (CDI) and inflammatory bowel disease (IBD) are global gastroenterological diseases that cause considerable burden on human health, healthcare systems, and society. Faecal microbiota transplantation (FMT) is an effective treatment for recurrent Clostridioides Difficile Infection (rCDI) and a promising therapy for IBD. However, indication for FMT in IBD is still unofficial. Consequently, the National Institute for Health and Care Excellence (NICE) is seeking healthcare providers’ advice on whether to update FMT guidelines. Methods: A systematic review methodology was adopted for this study. Five databases (CINAHL, MEDLINE, Cochrane Library, Scopus, Web of Science) and grey literature were systematically searched for English language literature to 14 May 2021. The quality of the included studies was then appraised using the Institute for Public Health Sciences cross-sectional studies tool, after which the findings of the studies were narratively synthesised. Results: Thirteen cross-sectional studies with 4110 validated questionnaire responses were included. Narrative synthesis found that 39.43% of respondents were familiar with FMT (N = 3746, 95%CI = 37.87%–41%), 58.81% of respondents would recommend FMT to their patients (N = 1141, 95%CI = 55.95%–61.67%), 66.67% of respondents considered lack of clinical evidence was the greatest concern regarding FMT (N = 1941, 95%CI = 64.57%–68.77%), and 40.43% respondents would not implement FMT due to concerns about infection transmission (N = 1128, 95%CI = 37.57%–43.29%). Conclusion: Healthcare providers’ knowledge of FMT is relatively low and education is an effective strategy to improve it. As knowledge of FMT increases, willingness to recommend it also increases. Strengthening FMT clinical efficacy and reducing infection can enhance its public acceptance, application and popularity. However, further research is required to explore the donor screening procedure.

scholarly journals Allied Health Professional Support in Pediatric Inflammatory Bowel Disease: A Survey from the Canadian Children Inflammatory Bowel Disease Network—A Joint Partnership of CIHR and the CH.I.L.D. Foundation

2017 ◽  
Vol 2017 ◽  
pp. 1-7 ◽  
Author(s):  
Wael El-Matary ◽  
Eric I. Benchimol ◽  
David Mack ◽  
Hien Q. Huynh ◽  
Jeff Critch ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Allied Health ◽  
Tertiary Care ◽  
Healthcare Providers ◽  
Physician Assistants ◽  
Clinical Psychologists ◽  
Full Time ◽  
Full Time Equivalent ◽  
Inflammatory Bowel

Objectives. The current number of healthcare providers (HCP) caring for children with inflammatory bowel disease (IBD) across Canadian tertiary-care centres is underinvestigated. The aim of this survey was to assess the number of healthcare providers (HCP) in ambulatory pediatric IBD care across Canadian tertiary-care centres. Methods. Using a self-administered questionnaire, we examined available resources in academic pediatric centres within the Canadian Children IBD Network. The survey evaluated the number of HCP providing ambulatory care for children with IBD. Results. All 12 tertiary pediatric gastroenterology centres participating in the network responded. Median full-time equivalent (FTE) of allied health professionals providing IBD care at each site was 1.0 (interquartile range (IQR) 0.6–1.0) nurse, 0.5 (IQR 0.2–0.8) dietitian, 0.3 (IQR 0.2–0.8) social worker, and 0.1 (IQR 0.02–0.3) clinical psychologists. The ratio of IBD patients to IBD physicians was 114 : 1 (range 31 : 1–537 : 1), patients to nurses/physician assistants 324 : 1 (range 150 : 1–900 : 1), dieticians 670 : 1 (range 250 : 1–4500 : 1), social workers 1558 : 1 (range 250 : 1–16000 : 1), and clinical psychologists 2910 : 1 (range 626 : 1–3200 : 1). Conclusions. There was a wide variation in HCP support among Canadian centres. Future work will examine variation in care including patients’ outcomes and satisfaction across Canadian centres.

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