Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

Keynote webinar | Spotlight on medication adherence

LIVE: Thursday 27th June 2024, 18:00-19:30 (CEST)
Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.
ADVANCED SEARCH
Log in
Top
BMC Gastroenterology
Published in: BMC Gastroenterology 1/2023

Open Access 01-12-2023 | Crohn's Disease | Research

Patients’ perspectives on, experience with and concerns about crohn's disease: insights from Chinese social media

Authors: Shaopeng Sun, Yunhong Hu, Heng Li, Jiajia Chen, Yijie Lou, Chunyan Weng, Lixia Chen, Bin Lv

Published in: BMC Gastroenterology | Issue 1/2023

Login to get access

Abstract

Aim

The aim of this study was to explore the experience and perceptions of patients with Crohn’s disease in China.

Methods

Data mining was used to investigate posts in Crohn’s disease online medical communities. The data were collected through the crawler code, and latent Dirichlet allocation (LDA) and grounded theory were used to mine the theme features after data cleaning.

Results

In analyzing the topic characteristics of online posts, LDA divided 6757 posts into 15 topics on four aspects: seeking disease information, making decisions on medication use, psychological burden, and communicating about diet and nutrition.

Conclusion

Overall, social media is patient-centric and helps us better understand the experiences and perceptions of patients. This study can help medical staff predict the thoughts and concerns of Crohn's disease patients during the treatment process, facilitate doctor-patient communication, and assist in the formulation of medical policies.
Literature
1.
Mak WY, et al. The epidemiology of inflammatory bowel disease: East meets west. J Gastroenterol Hepatol. 2020;35(3):380–9.PubMedCrossRef
2.
Ng SC, et al. Worldwide incidence and prevalence of inflammatory bowel disease in the 21st century: a systematic review of population-based studies. Lancet. 2017;390(10114):2769–78.PubMedCrossRef
3.
Zheng JJ, et al. Prevalence and incidence rates of Crohn’s disease in mainland China: a meta-analysis of 55 years of research. J Dig Dis. 2010;11(3):161–6.PubMedCrossRef
4.
5.
Philippou A, et al. A Mixed-methods assessment of the impact of insurance issues on the emotional and physical health of patients with inflammatory bowel disease. Inflamm Bowel Dis. 2022;28(12):1851–8.PubMedCrossRef
6.
Jordan C, et al. A qualitative study exploring the experience of people with IBD and elevated symptoms of anxiety and low mood and the type of psychological help they would like. Psychol Health. 2018;33(5):634–51.PubMedCrossRef
7.
Byron C, et al. Challenges of living with and managing inflammatory bowel disease: A meta-synthesis of patients’ experiences. J Clin Nurs. 2020;29(3–4):305–19.PubMedCrossRef
8.
Rouncefield-Swales A, et al. Sustaining, forming, and letting go of friendships for young people with inflammatory bowel disease (IBD): A qualitative interview-based study. Int J Chronic Dis. 2020;2020:7254972.PubMedPubMedCentral
9.
Jiang X, et al. Characteristics of online health care services from china’s largest online medical platform: cross-sectional survey study. J Med Internet Res. 2021;23(4):e25817.PubMedPubMedCentralCrossRef
10.
Gonzalez G, et al. Social media analytics of overactive bladder posts: what do patients know and want to know? Int Urogynecol J. 2021;32(10):2729–36.PubMedCrossRef
11.
O’Reilly M, et al. Is social media bad for mental health and wellbeing? Exploring the perspectives of adolescents. Clin Child Psychol Psychiatry. 2018;23(4):601–13.PubMedCrossRef
12.
13.
Li M, et al. Psychological impact of health risk communication and social media on college students during the covid-19 pandemic: cross-sectional study. J Med Internet Res. 2020;22(11):e20656.PubMedPubMedCentralCrossRef
14.
15.
Charmaz, K., The grounded theory method: An explication and interpretation. 1983.
16.
de la Espriella R, Gómez Restrepo C. Grounded theory. Rev Colomb Psiquiatr. 2020;49(2):127–33.
17.
Turner C, Astin F. Grounded theory: what makes a grounded theory study? Eur J Cardiovasc Nurs. 2021;20(3):285–9.PubMedCrossRef
18.
Blei, D.M., A.Y. Ng, and M.I. Jordan, Latent dirichlet allocation. J. Mach. Learn. Res., 2003. 3(null): p. 993–1022.
19.
Xie T, Ping Q, Zhu L. Study on the topic mining and dynamic visualization in view of LDA model. Mod Appl Sci. 2018;13(1):204.CrossRef
20.
21.
Zhang Y, Jin R, Zhou ZH. Understanding bag-of-words model: a statistical framework. Int J Mach Learn Cybern. 2010;1(1–4):43–52.CrossRef
22.
23.
Siegel CA. Shared decision making in inflammatory bowel disease: helping patients understand the tradeoffs between treatment options. Gut. 2012;61(3):459–65.PubMedCrossRef
24.
Peng L, et al. Challenging the surge of IBD: the role of the china crohn’s and colitis foundation in the healthcare landscape of IBD. Inflamm Bowel Dis. 2022;28(Supplement_2):S9-15.PubMedCrossRef
25.
Wu Q, et al. Role of a multidisciplinary team (MDT) in the diagnosis, treatment, and outcomes of inflammatory bowel disease: a single Chinese center’s experience. Biosci Trends. 2021;15(3):171–9.PubMedCrossRef
26.
27.
Lichtenstein GR, et al. ACG clinical guideline: management of crohn’s disease in adults. Am J Gastroenterol. 2018;113(4):481–517.PubMedCrossRef
28.
Panaccione R, et al. Combination therapy with infliximab and azathioprine is superior to monotherapy with either agent in ulcerative colitis. Gastroenterology. 2014;146(2):392-400.e3.PubMedCrossRef
29.
Colombel JF, et al. Infliximab, azathioprine, or combination therapy for Crohn’s disease. N Engl J Med. 2010;362(15):1383–95.PubMedCrossRef
30.
Cai Q, Wu L, Zhou Y. Experiences with traditional chinese medicine among patients with inflammatory bowel disease: a qualitative study. Gastroenterol Nurs. 2020;43(2):135–45.PubMedCrossRef
31.
Kou FS, et al. Clinical evaluation of traditional Chinese medicine on mild active ulcerative colitis: A multi-center, randomized, double-blind, controlled trial. Medicine (Baltimore). 2020;99(35):e21903.PubMedCrossRef
32.
Almario CV, et al. Optimizing selection of biologics in inflammatory bowel disease: development of an online patient decision aid using conjoint analysis. Am J Gastroenterol. 2018;113(1):58–71.PubMedCrossRef
33.
Lichtenstein GR, et al. Lifetime economic burden of Crohn’s disease and ulcerative colitis by age at diagnosis. Clin Gastroenterol Hepatol. 2020;18(4):889-897.e10.PubMedCrossRef
34.
Xu J, Tang M, Shen J. Trends and factors affecting hospitalization costs in patients with inflammatory bowel disease: a two-center study over the past decade. Gastroenterol Res Pract. 2013;2013:267630.PubMedPubMedCentralCrossRef
35.
Cross, R.K. and L. Keefer, Chicken or Egg, Mental Health Disorders in Inflammatory Bowel Disease: Does It Matter? Gastroenterology, 2022.
36.
Graff LA, Walker JR, Bernstein CN. Depression and anxiety in inflammatory bowel disease: a review of comorbidity and management. Inflamm Bowel Dis. 2009;15(7):1105–18.PubMedCrossRef
37.
Walker JR, et al. The Manitoba IBD cohort study: a population-based study of the prevalence of lifetime and 12-month anxiety and mood disorders. Am J Gastroenterol. 2008;103(8):1989–97.PubMedCrossRef
38.
Guthrie E, et al. Psychological disorder and severity of inflammatory bowel disease predict health-related quality of life in ulcerative colitis and Crohn’s disease. Am J Gastroenterol. 2002;97(8):1994–9.PubMedCrossRef
39.
Blackwell J, et al. Stoma formation in Crohn’s disease and the likelihood of antidepressant use: a population-based cohort study. Clin Gastroenterol Hepatol. 2022;20(4):e703–10.PubMedCrossRef
40.
Truta B. The impact of inflammatory bowel disease on women’s lives. Curr Opin Gastroenterol. 2021;37(4):306–12.PubMedCrossRef
41.
42.
Badger K, Acton A, Peterson P. Aftercare, survivorship, and peer support. Clin Plast Surg. 2017;44(4):885–91.PubMedCrossRef
43.
Paulides E, et al. the effect of psychotherapy on quality of life in IBD patients: a systematic review. Inflamm Bowel Dis. 2021;27(5):711–24.PubMedCrossRef
44.
Caio G, et al. Nutritional Treatment in Crohn's Disease. Nutrients. 2021;13(5):1628.
45.
46.
MacDermott RP. Treatment of irritable bowel syndrome in outpatients with inflammatory bowel disease using a food and beverage intolerance, food and beverage avoidance diet. Inflamm Bowel Dis. 2007;13(1):91–6.PubMedCrossRef
47.
Yelencich E, et al. Avoidant restrictive food intake disorder prevalent among patients with inflammatory bowel disease. Clin Gastroenterol Hepatol. 2022;20(6):1282-1289.e1.PubMedCrossRef
48.
Zhou Y, Ma X, Chen Y. Dietary practices of Chinese patients with inflammatory bowel disease: a naturalistic inquiry. Gastroenterol Nurs. 2014;37(1):60–9.PubMedCrossRef
49.
Scaldaferri F, et al. Nutrition and IBD: malnutrition and/or sarcopenia? A Practical Guide Gastroenterol Res Pract. 2017;2017:8646495.PubMed
50.
Bischoff SC, et al. ESPEN guideline: Clinical nutrition in inflammatory bowel disease. Nutr Hosp. 2022;39(3):678–703.PubMed
51.
52.
Cai Q, Li F, Zhou Y. Experiences of Chinese patients with Crohn’s disease in the self-administration of nasogastric feeding: A descriptive qualitative study. PLoS ONE. 2018;13(7):e0201421.PubMedPubMedCentralCrossRef
53.
Singh S, et al. Obesity in IBD: epidemiology, pathogenesis, disease course and treatment outcomes. Nat Rev Gastroenterol Hepatol. 2017;14(2):110–21.PubMedCrossRef
54.
Davis SP, et al. An integrative review of physical activity in adults with inflammatory bowel disease. Intest Res. 2022;20(1):43–52.PubMedCrossRef
55.
Guyatt G, et al. A new measure of health status for clinical trials in inflammatory bowel disease. Gastroenterology. 1989;96(3):804–10.PubMedCrossRef
56.
Russel MG, et al. Validation of the dutch translation of the inflammatory bowel disease questionnaire (IBDQ): a health-related quality of life questionnaire in inflammatory bowel disease. Digestion. 1997;58(3):282–8.PubMedCrossRef
57.
Ren WH, et al. Validation of the mainland Chinese version of the Inflammatory Bowel Disease Questionnaire (IBDQ) for ulcerative colitis and Crohn’s disease. Inflamm Bowel Dis. 2007;13(7):903–10.PubMedCrossRef
58.
Magro F, et al. Inflammatory bowel disease management during the covid-19 outbreak: The ten do’s and don’ts from the ECCO-COVID Taskforce. J Crohns Colitis. 2020;14(14 Suppl 3):S798-s806.PubMedCrossRef
59.
de Bock E, et al. Quality of life in patients with IBD during the COVID-19 pandemic in the Netherlands. BMJ Open Gastroenterol. 2021;8(1):e000670.PubMedCrossRef
60.
Alexander JL, et al. SARS-CoV-2 vaccination for patients with inflammatory bowel disease: a British society of gastroenterology inflammatory bowel disease section and IBD clinical research group position statement. Lancet Gastroenterol Hepatol. 2021;6(3):218–24.PubMedPubMedCentralCrossRef
61.
62.
Lev-Tzion R, et al. COVID-19 vaccine is effective in inflammatory bowel disease patients and is not associated with disease exacerbation. Clin Gastroenterol Hepatol. 2022;20(6):e1263–82.PubMedCrossRef
63.
Alexander JL, et al. COVID-19 vaccine-induced antibody and T-cell responses in immunosuppressed patients with inflammatory bowel disease after the third vaccine dose (VIP): a multicentre, prospective, case-control study. Lancet Gastroenterol Hepatol. 2022;7(11):1005–15.PubMedPubMedCentralCrossRef
64.
65.
Ungaro RC, et al. Effect of IBD medications on COVID-19 outcomes: results from an international registry. Gut. 2021;70(4):725–32.PubMedCrossRef
66.
Zollner A, et al. Postacute COVID-19 is characterized by gut viral antigen persistence in inflammatory bowel diseases. Gastroenterology. 2022;163(2):495-506.e8.PubMedCrossRef
Metadata
Title
Patients’ perspectives on, experience with and concerns about crohn's disease: insights from Chinese social media
Authors
Shaopeng Sun
Yunhong Hu
Heng Li
Jiajia Chen
Yijie Lou
Chunyan Weng
Lixia Chen
Bin Lv
Publication date
01-12-2023
Publisher
BioMed Central
Published in
BMC Gastroenterology / Issue 1/2023
Electronic ISSN: 1471-230X
DOI
https://doi.org/10.1186/s12876-023-02747-x

Other articles of this Issue 1/2023

BMC Gastroenterology 1/2023 Go to the issue

Research article

Association between air temperature and emergency admission for esophagogastric variceal bleeding: a case-crossover study in Beijing, China

Research

Efficacy of washed microbiota transplantation for therapeutic targets of refractory functional constipation and the influencing factors: a single-center, retrospective, 24-week follow-up study

Research

LACC1 regulates changes in the intestinal flora in a mouse model of inflammatory bowel disease

Research

SPATS2 is correlated with cell cycle progression and immune cells infiltration in hepatocellular carcinoma

Research

Inflammation and nutritional status indicators as prognostic indicators for patients with locally advanced gastrointestinal stromal tumors treated with neoadjuvant imatinib

Research

Preoperative Platelet-Lymphocyte Ratio (PLR) as a prognostic inflammation biomarker in Asian HIV-infected patients with gastric cancer: a single-center study
Live Webinar | 27-06-2024 | 18:00 (CEST)

Keynote webinar | Spotlight on medication adherence

Reserve your place

Live: Thursday 27th June 2024, 18:00-19:30 (CEST)

WHO estimates that half of all patients worldwide are non-adherent to their prescribed medication. The consequences of poor adherence can be catastrophic, on both the individual and population level.

Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.

Prof. Kevin Dolgin
Prof. Florian Limbourg
Prof. Anoop Chauhan
Developed by: Springer Medicine
Obesity Clinical Trial Summary

At a glance: The STEP trials

Read more

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.

Developed by: Springer Medicine
Image Credits