Mo1855 Inadequate Health Literacy Linked to Poor Knowledge of Key Concepts in Inflammatory Bowel Disease

2016 ◽  
Vol 150 (4) ◽  
pp. S796
Author(s):  
Lauren K. Tormey ◽  
Jason S. Reich ◽  
Sarah Chen ◽  
Zachary Lipkin-Moore ◽  
Anzhu Yu ◽  
...  
2021 ◽  
Vol 3 (1) ◽  
pp. 23-28
Author(s):  
Laura Appleton ◽  
Andrew S. Day

Insufficient disease-related knowledge can be a barrier to the effective management of the unpredictable and lifelong course of inflammatory bowel disease (IBD). Patients with chronic illnesses have high non-adherence rates, with direct clinical consequences. While no single intervention strategy can improve the adherence of all patients, the success of attempts to improve patient adherence depends upon the realistic assessment of patients’ knowledge and their understanding of the regimen. The aim of this study was to assess the disease-specific knowledge of the parents and patients with IBD in the South Island of New Zealand, and identify areas of poor knowledge. Families of children diagnosed with IBD were asked to complete the IBD Knowledge Inventory Device (IBD-KID). Patients 10 years and older were asked to participate along with their parents. Of 110 families, 91 responded, with completed questionnaires received from 153 parents and 66 patients. Overall, parents scored significantly higher (13.64 ± 3.88) than their children (10.03 ± 4.07; p < 0.001). Areas of poor knowledge included aspects of treatment (both conventional and alternative), along with long-term disease outcomes. This study has shown clear areas of concern in this population’s disease-specific knowledge of their disease. This should be addressed through targeted education for both the patient and the parents to improve not only their knowledge, but also their adherence and disease self-management.


2018 ◽  
Vol 25 (1) ◽  
pp. 204-212 ◽  
Author(s):  
Lauren K Tormey ◽  
Jason Reich ◽  
Yu Sarah Chen ◽  
Arush Singh ◽  
Zachary Lipkin-Moore ◽  
...  

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e045059
Author(s):  
Melanie Hawkins ◽  
Wayne Massuger ◽  
Christina Cheng ◽  
Roy Batterham ◽  
Gregory T Moore ◽  
...  

IntroductionNon-government organisations (NGOs) often represent people who are underserved or experiencing vulnerability. Crohn’s & Colitis Australia (CCA) is aware that many Australians with inflammatory bowel disease (IBD) are not reached by current communication and engagement activities. The aim of the CCA IBD project is to implement the Optimising Health Literacy and Access (Ophelia) process over 3 years to collaboratively codesign ways to improve delivery of information, services and resources for people with IBD and their carers.Methods and analysisHealth literacy and other data for phase 1 will be collected using the Health Literacy Questionnaire, eHealth Literacy Questionnaire, IBD-related questions and qualitative interviews with people with IBD and their carers to ascertain their lived experience. Quantitative data will be analysed using descriptive statistics and cluster analysis. Identified clusters will be combined with qualitative data to develop vignettes (narratives of people’s experiences of living with IBD) for stakeholder workshops to generate ideas for useful, accessible and sustainable solutions for identified health literacy needs. Selection and testing of health literacy actions happens in phase 2 and implementation and evaluation in phase 3 (2021–2023). Outcomes of this project include giving voice to people living with IBD, their carers and frontline healthcare practitioners. Genuine codesign informs the development and implementation of what is needed and wanted to improve access to and availability and quality of information and resources that support people to manage their health. There is potential for other NGOs to use the CCA Ophelia model in other health contexts to improve engagement with and understanding of the needs of the people they serve and to reduce health inequalities and improve health outcomes.Ethics and disseminationEthics approval for Ophelia phase 1 has been obtained from the Human Research Ethics Committee of Swinburne University of Technology (Ref: 20202968–4652) and by the South West Sydney Local Health District Research and Ethics Office for the purposes of questionnaire recruitment at Liverpool Hospital (Ref: 20202968–4652). Dissemination of the study findings will be the national codesign process and ownership development across the CCA community and through the genuine engagement of clinicians and relevant managers across Australia. The model and process will be directly distributed to international IBD associations and to other NGOs. It will also be disseminated through publication in a peer-reviewed journal, conference presentations and public reports on the CCA and Swinburne University of Technology website.


2020 ◽  
Vol 26 (Supplement_1) ◽  
pp. S54-S54
Author(s):  
Francis Wade ◽  
Florence-Damilola Odufalu ◽  
Gretchen Grosch ◽  
Melissa Chambers ◽  
Katie Schroeder

Abstract Introduction Iron deficiency Anemia (IDA) is a common complication of inflammatory bowel disease (IBD). High prevalence of IDA in IBD suggests suboptimal surveillance and treatment. Oral iron is poorly tolerated, associated with worsened disease activity, and often insufficient to reverse anemia in IBD patients. Intravenous (IV) iron is favored for treatment of IDA in IBD in most clinical scenarios and many guidelines recommend IV iron as first line for IBD patients. Regardless, oral iron is prescribed commonly for IDA in IBD. The objective of this study is to determine practice patterns of primary care physicians (PCP) and gastroenterologists (GI) in the management of IDA in IBD. Methods We anonymously surveyed GI and PCP attendings and trainees at Saint Louis University School of Medicine in St. Louis, Missouri, using paper self-administered instruments. We asked about practice patterns in the management of IDA in IBD patients and knowledge of IV iron. The study questionnaire was developed based on United States expert opinion consensus statements and European guideline recommendations published in the Journal of Crohn’s and Colitis and Inflammatory Bowel Diseases. Results Of GI responders, 92.3% were fellows, 7.7% were attendings; of PCP responders, 81.8% were residents, 18.2% were attendings. 15.4% GIs, 12.7% PCPs were very comfortable managing IBD patients with IDA; 76.9% GIs, 58.2% PCPs were somewhat comfortable; 7.7% GIs, 29.1% PCPs were not comfortable (p=0.275). 61.5% GIs, 25.5% PCPs always check iron studies when evaluating anemic IBD patients; 30.1% GIs, 21.8% PCPs check most of the time; 7.7% GIs, 34.5% PCPs sometimes check; 0% GIs, 12.7% PCPs rarely check; 0% GIs, 5.4% PCPs never check (p =0.05). In mild Crohn’s disease with severe anemia, 15.4% GIs, 41.8% PCPs would prescribe oral iron daily; 15.4% GIs, 12.7% PCPs would prescribe oral iron every other day; 69.2% GIs, 45.5% PCPs would prescribe IV iron (p=0.58). 0% GIs reported good knowledge of IV iron, 53.8% reported acceptable knowledge, and 46.1% reported poor knowledge. 7.7% GIs, 10.9% PCPs reported good knowledge of how to order IV iron; 53.8% GIs, 7.3% PCPs reported acceptable knowledge; 38.5% GIs, 81.8% PCPs reported poor knowledge (p=0.000215). 23.1% GIs, 61.8% PCPs thought PCPs were responsible for screening for IDA in IBD patients; 76.9% GIs, 36.4% PCPs thought GIs were responsible (p= 0.0131). Discussion Both PCPs and GIs perceived responsibility to manage IDA in IBD patients. PCPs were less likely than GIs to screen for IDA in anemic IBD patients or to report adequate knowledge of clinic processes to order IV iron. Future efforts to reinforce gastroenterologists’ role in the management of IDA in IBD and to bolster familiarity with IV iron and its indications might improve outcomes and quality of life for IBD patients.


2016 ◽  
Vol 150 (4) ◽  
pp. S398-S399
Author(s):  
Lauren K. Tormey ◽  
Jason S. Reich ◽  
Sarah Chen ◽  
Zachary Lipkin-Moore ◽  
Anzhu Yu ◽  
...  

2020 ◽  
Vol 2 (4) ◽  
Author(s):  
Lauren S Languido ◽  
Jessica K Salwen-Deremer

Lay Summary Dos Santos Margues and colleagues found that African Americans with IBD may have more difficulty with understanding and making decisions about health information. We discuss their work and give suggestions on how to create a supportive clinic environment.


Author(s):  
Jens Walldorf ◽  
Emilia Pijan ◽  
Robin Greinert ◽  
Anica Riesner-Wehner ◽  
Patrick Michl

Abstract Background In patients with inflammatory bowel disease (IBD), diagnosis is often established at the beginning of childbearing age. Accordingly, concerns about family planning and pregnancy (FPP) are common. Poor knowledge regarding FPP might contribute to increased childlessness in patients with IBD. Methods The Crohn’s and Colitis Pregnancy Knowledge Score (CCPKnow, 17 multiple-choice questions) was translated into German and then used for a web-based survey. Childlessness was analyzed with respect to socio-demographic and disease-related information, and the knowledge (CCPKnow) and concerns of IBD patients with children were compared to those of voluntarily childless (VC) and non-voluntarily childless (NVC) IBD patients. Results Childlessness was observed in 57.4 % of the 533 participants (90.6 % women, 63.0 % Crohn’s disease, 31.5 % ulcerative colitis, mean age 33.2 ± 8.6 years), voluntary childlessness in 9 %. The mean overall CCPKnow was adequate (9.38 ± 3.96). Poor knowledge was not associated with increased childlessness (CCPKnow of < 8 was found in 29.8 % of patients with children and 28.9 % of childless patients, p > 0.5). Instead, the patients’ education, medical advice, FPP-related concerns, impaired body image, and sexual dysfunction had a significant impact on childlessness. Frequent concerns included adverse effects of the patient’s medication on their child (36 % of the respondents), malformation (33 %), miscarriage (34.5 %), and the inheritability of IBD (57 %). Conclusions Factual knowledge does not reduce disease-related concerns or childlessness. Correct but possibly bothersome information on FPP might contribute to childlessness in patients with IBD. Our findings underline the need for qualified counseling of IBD patients regarding FPP by an experienced IBD physician.


2015 ◽  
Vol 148 (4) ◽  
pp. S-256-S-257
Author(s):  
Lauren K. Tormey ◽  
Jason Reich ◽  
Arush Singh ◽  
Yu (Sarah) Chen ◽  
Janice Weinberg ◽  
...  

Sign in / Sign up

Export Citation Format

Share Document