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

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.
ADVANCED SEARCH
Log in
Top
The Patient - Patient-Centered Outcomes Research
Published in: The Patient - Patient-Centered Outcomes Research 3/2018

01-06-2018 | Review Article

Factors that Influence Treatment and Non-treatment Decision Making Among Individuals with Inflammatory Bowel Disease: An Integrative Review

Authors: Kendra J. Kamp, Kelly Brittain

Published in: The Patient - Patient-Centered Outcomes Research | Issue 3/2018

Login to get access

Abstract

Inflammatory bowel disease (IBD) is a chronic illness with periods of varying disease activity called flares and remissions. Since IBD impacts quality of life, patients make IBD disease management decisions every day. Previous research indicates limited insight about factors that influence decisions regarding disease management and the types of decisions IBD patients make. The purpose of this integrative review is to identify types of treatment and non-treatment decisions and the factors that influence decision making regarding disease management among individuals with IBD. An integrative literature review was performed based on the Whittemore and Knafl framework. PubMed, Web of Science, and PsychINFO were searched for relevant articles, from 2010–2016, using the key terms: decision making, patient preferences, self-management, self-care, nutrition, diet, stress, symptom, Colitis, Crohns, and IBD. Twenty-eight articles met the inclusion criteria. From these, research showed two types of decisions: treatment decisions related to medication and surgery, and non-treatment decisions focused on diet modification. Five themes that influence decisions were identified: experiencing symptoms, provider recommendations, convenience attributes, psychosocial factors, and informational needs. Most of the studies found a positive relationship between an increased number of symptoms and a patient’s willingness to engage in treatment decisions. Although support from providers is highly influential for treatment decisions, most studies reported that provider recommendations did not align with patient preferences. Future work is needed to understand factors that influence decisions among recently diagnosed patients, to focus on non-treatment-related decisions, and to clarify the role of psychosocial factors in promoting disease decision making among IBD patients. This integrative review identified that, for patients, experiencing symptoms is the most important factor that influences treatment and non-treatment decisions.
Appendix
Available only for authorised users
Literature
1.
Crohn’s and Colitis Foundation of America. Managing flares and other IBD symptoms. New York: Crohn’s and Colitis Foundation of America; 2009.
2.
Crohn’s and Colitis Foundation of America. The facts about inflammatory bowel diseases. New York: Crohn’s and Colitis Foundation of America; 2015.
3.
Leitner GC, Vogelsang H. Pharmacological- and non-pharmacological therapeutic approaches in inflammatory bowel disease in adults. World J Gastrointest Pharmacol Ther. 2016;7(1):5–20.CrossRefPubMedPubMedCentral
4.
Ye Y, et al. The epidemiology and risk factors of inflammatory bowel disease. Int J Clin Exp Med. 2015;8(12):22529–42.PubMedPubMedCentral
5.
Jedel S, et al. A randomized controlled trial of mindfulness-based stress reduction to prevent flare-up in patients with inactive ulcerative colitis. Digestion. 2014;89(2):142–55.CrossRefPubMedPubMedCentral
6.
Limdi JK, Aggarwal D, McLaughlin JT. Dietary practices and beliefs in patients with inflammatory bowel disease. Inflamm Bowel Dis. 2016;22(1):164–70.CrossRefPubMed
7.
8.
Ryan P, Sawin KJ. The individual and family self-management theory: background and perspectives on context, process, and outcomes. Nurs Outlook. 2009;57(4):217–25.CrossRefPubMedPubMedCentral
9.
Kaplan GG. The global burden of IBD: from 2015 to 2025. Nature Reviews. Gastroenterol Hepatol. 2015;12(12):720–7.
10.
Herman ML, Kane SV. Treatment nonadherence in inflammatory bowel disease: identification, scope, and management strategies. Inflamm Bowel Dis. 2015;21(12):2979–84.CrossRefPubMed
11.
Higgins PD, et al. Systematic review: impact of non-adherence to 5-aminosalicylic acid products on the frequency and cost of ulcerative colitis flares. Aliment Pharmacol Ther. 2009;29(3):247–57.CrossRefPubMed
12.
Whittemore R, Knafl K. The integrative review: updated methodology. J Adv Nurs. 2005;52(5):546–53.CrossRefPubMed
13.
14.
15.
Allison M, et al. Surgery in young adults with inflammatory bowel disease: a narrative account. Int J Nurs Stud. 2013;50(11):1566–75.CrossRefPubMed
16.
Byrne CM, et al. Patient and clinician preferences for surgical and medical treatment options in Ulcerative Colitis. Colorectal Dis. 2014;16(4):285–92.CrossRefPubMed
17.
Siegel CA, et al. When should ulcerative colitis patients undergo colectomy for dysplasia? Mismatch between patient preferences and physician recommendations. Inflamm Bowel Dis. 2010;16(10):1658–62.CrossRefPubMedPubMedCentral
18.
Brown LK, et al. Proximity to disease and perception of utility: physicians’ vs patients’ assessment of treatment options for ulcerative colitis. Dis Colon Rectum. 2011;54(12):1529–36.CrossRefPubMedPubMedCentral
19.
20.
Lichtenstein G, et al. Assessing drug treatment preferences of patients with Crohn’s Disease. Patient: Patient-Cent Outcomes Res. 2010;3(2):113–23.CrossRef
21.
Vavricka SR, et al. Systematic assessment of factors influencing preferences of Crohn’s disease patients in selecting an anti-tumor necrosis factor agent (Choose TNF trial). Inflamm Bowel Dis. 2012;18(8):1523–30.CrossRefPubMed
22.
Kim ES, et al. Factors contributing to the preference of Korean patients with Crohn’s disease when selecting an anti-tumor necrosis factor agent (CHOICE Study). Gut Liver. 2016;10(3):391–8.PubMed
23.
Hodgkins P, et al. Patient preferences for first-line oral treatment for mild-to-moderate ulcerative colitis: a discrete-choice experiment. Patient. 2012;5(1):33–44.CrossRefPubMed
24.
Peyrin-Biroulet L, et al. Patient perspectives on biosimilars: a survey by the European Federation of Crohn’s and Ulcerative Colitis associations. J Crohns Colitis. 2017;11(1):128–33.CrossRefPubMed
25.
Bewtra M, Johnson FR. Assessing patient preferences for treatment options and process of care in inflammatory bowel disease: a critical review of quantitative data. Patient. 2013;6(4):241–55.CrossRefPubMed
26.
Casellas F, et al. Patient preferences for inflammatory bowel disease treatment objectives. Dig Liver Dis. 2017;49(2):152–6.CrossRefPubMed
27.
Peyrin-Biroulet L, et al. Treatment satisfaction, preferences and perception gaps between patients and physicians in the ulcerative colitis CARES study: a real world-based study. Dig Liver Dis. 2016;48(6):601–7.CrossRefPubMed
28.
van Deen WK, et al. Value redefined for inflammatory bowel disease patients: a choice-based conjoint analysis of patients’ preferences. Qual Life Res. 2017;26(2):455–65.CrossRefPubMed
29.
Carpio D, et al. Perception of disease burden and treatment satisfaction in patients with ulcerative colitis from outpatient clinics in Spain: UC-LIFE survey. Eur J Gastroenterol Hepatol. 2016;28(9):1056–64.CrossRefPubMed
30.
Siegel CA, et al. Novel statistical approach to determine inflammatory bowel disease: patients’ perspectives on shared decision making. Patient. 2016;9(1):79–89.CrossRefPubMed
31.
Kemp K, et al. An exploration of the follow-up up needs of patients with inflammatory bowel disease. J Crohns Colitis. 2013;7(9):e386–95.CrossRefPubMed
32.
Vagianos K, et al. What are adults with inflammatory bowel disease (IBD) eating? A closer look at the dietary habits of a population-based Canadian IBD Cohort. J Parenter Enteral Nutr. 2016;40(3):405–11.CrossRef
33.
Zallot C, et al. Dietary beliefs and behavior among inflammatory bowel disease patients. Inflamm Bowel Dis. 2013;19(1):66–72.CrossRefPubMed
34.
Schreiber S, et al. Perception gaps between patients with ulcerative colitis and healthcare professionals: an online survey. BMC Gastroenterol. 2012;12:108.CrossRefPubMedPubMedCentral
35.
Thompson KD, et al. Patients with ulcerative colitis are more concerned about complications of their disease than side effects of medications. Inflamm Bowel Dis. 2016;22(4):940–7.CrossRefPubMed
36.
Bernstein KI, et al. Information needs and preferences of recently diagnosed patients with inflammatory bowel disease. Inflamm Bowel Dis. 2011;17(2):590–8.CrossRefPubMed
37.
Pittet V, et al. Information needs and concerns of patients with inflammatory bowel disease: what can we learn from participants in a bilingual clinical cohort? PLoS One. 2016;11(3):e0150620.CrossRefPubMedPubMedCentral
38.
Wong S, et al. The information needs and preferences of persons with longstanding inflammatory bowel disease. Can J Gastroenterol. 2012;26(8):525–31.CrossRefPubMedPubMedCentral
39.
Johnson FR, et al. Are gastroenterologists less tolerant of treatment risks than patients? Benefit-risk preferences in Crohn’s disease management. J Manag Care Pharm. 2010;16(8):616–28.PubMed
40.
Keefer L, Kane S. Self-management techniques in IBD. In: Cross RK, Watson AR, editors. Telemanagement of inflammatory bowel disease. Berlin: Springer; 2016. p. 55–70.CrossRef
41.
Khanna R, et al. Endoscopic scoring indices for evaluation of disease activity in Crohn’s disease. Cochrane Database Syst Rev. 2016;8:Cd010642.
42.
Novak K, et al. Clinic-based point of care transabdominal ultrasound for monitoring Crohn’s disease: impact on clinical decision making. J Crohns Colitis. 2015;9(9):795–801.CrossRefPubMed
43.
Walsh AJ, Bryant RV, Travis SPL. Current best practice for disease activity assessment in IBD. Nat Rev Gastroenterol Hepatol. 2016;13(10):567–79.CrossRefPubMed
44.
Muhlbacher AC, Juhnke C. Patient preferences versus physicians’ judgement: does it make a difference in healthcare decision making? Appl Health Econ Health Policy. 2013;11(3):163–80.CrossRefPubMed
45.
Goldberg HB, Shorten A. Differences between patient and provider perceptions of informed decision making about epidural analgesia use during childbirth. J Perinat Educ. 2014;23(2):104–12.CrossRefPubMedPubMedCentral
46.
Tanaka M, et al. Coping strategies for possible flare-ups and their perceived effectiveness in patients with inflammatory bowel disease. Gastroenterol Nurs. 2016;39(1):42–7.CrossRefPubMed
47.
Cohan JN, et al. A novel decision aid for surgical patients with ulcerative colitis: results of a pilot study. Dis Colon Rectum. 2016;59(6):520–8.CrossRefPubMed
48.
Baker DM, et al. A systematic review of internet decision-making resources for patients considering surgery for ulcerative colitis. Inflamm Bowel Dis. 2017;23(8):1293–300.CrossRefPubMed
Metadata
Title
Factors that Influence Treatment and Non-treatment Decision Making Among Individuals with Inflammatory Bowel Disease: An Integrative Review
Authors
Kendra J. Kamp
Kelly Brittain
Publication date
01-06-2018
Publisher
Springer International Publishing
Published in
The Patient - Patient-Centered Outcomes Research / Issue 3/2018
Print ISSN: 1178-1653
Electronic ISSN: 1178-1661
DOI
https://doi.org/10.1007/s40271-017-0294-0

Other articles of this Issue 3/2018

The Patient - Patient-Centered Outcomes Research 3/2018 Go to the issue

Original Research Article

Mapping Quality of Life (EQ-5D) from DAPsA, Clinical DAPsA and HAQ in Psoriatic Arthritis

Systematic Review

A Systematic Review Comparing the Acceptability, Validity and Concordance of Discrete Choice Experiments and Best–Worst Scaling for Eliciting Preferences in Healthcare

Original Research Article

Experience of Symptoms and Disease Impact in Patients with Adenomyosis

Editorial

Incorporating Quantitative Patient Preference Data into Healthcare Decision Making Processes: Is HTA Falling Behind?

Systematic Review

Evaluating Risk Tolerance from a Systematic Review of Preferences: The Case of Patients with Psoriasis

Original Research Article

Engagement of Canadian Patients with Rare Diseases and Their Families in the Lifecycle of Therapy: A Qualitative Study
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

Highlights from the ACC 2024 Congress

Year in Review: Pediatric cardiology

Pediatric Cardiology Video

Watch Dr. Anne Marie Valente present the last year's highlights in pediatric and congenital heart disease in the official ACC.24 Year in Review session.

Year in Review: Pulmonary vascular disease

Cardiopulmonary Comorbidity Video

The last year's highlights in pulmonary vascular disease are presented by Dr. Jane Leopold in this official video from ACC.24.

Year in Review: Valvular heart disease

Valvular Heart Disease Video

Watch Prof. William Zoghbi present the last year's highlights in valvular heart disease from the official ACC.24 Year in Review session.

Year in Review: Heart failure and cardiomyopathies

Heart Failure Video

Watch this official video from ACC.24. Dr. Biykem Bozkurt discusses last year's major advances in heart failure and cardiomyopathies.

ACC 2024 Congress Coverage

Year in Review: Heart failure and cardiomyopathies

Heart Failure Video

Watch this official video from ACC.24. Dr. Biykem Bozkurt discusses last year's major advances in heart failure and cardiomyopathies.

Watch now

Semaglutide benefits people with type 2 diabetes and obesity-related heart failure

16-04-2024 Type 2 Diabetes News

Incentivised to exercise

11-04-2024 Lifestyle Modifications News

New intervention for STEMI-related cardiogenic shock

10-04-2024 Myocardial Infarction News

» View more highlights on the ACC 2024 congress hub page

Image Credits