Abstract
Irrespective of the strength of a patient’s inflammatory bowel disease (IBD) care team, an individual will still likely spend less than 3 h per year obtaining care or in communication with their provider(s) and the rest of the time “self-managing.” In this chapter, we (1) define self-management and discuss the unique features of IBD which make self-management particularly challenging, (2) describe the role of self-management support on health outcomes in IBD, and (3) discuss the importance of social-cognitive theory in the development and implementation of self-management support for IBD, including the types of techniques, constructs, and sample programs which fit within this model.
Self-management support programs are typically problem based, meaning they identify and promote the development of skills that solve a critical aspect of disease management. Tools or programs which support skills such as improving medication adherence, increasing disease knowledge, implementing decision-support tools, or optimizing communication between patients and providers are all problem-focused ways in which IBD self-management can be readily supported. While traditional self-management programs targeting a single problem can be quite effective, self-management support initiatives may be better suited to approaches which integrate the complex interactions between the thoughts, feelings, and behaviors that accompany IBD (patient modifiers) and the physical and environmental demands the disease presents (disease modifiers). Social-cognitive theory lends itself well to this problem.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Lorig K. Self-management education: more than a nice extra. Med Care. 2003;41(6):699–701.
Lorig KR, et al. A national dissemination of an evidence-based self-management program: a process evaluation study. Patient Educ Couns. 2005;59(1):69–79.
Burgmann T, Rawsthorne P, Bernstein CN. Predictors of alternative and complementary medicine use in inflammatory bowel disease: do measures of conventional health care utilization relate to use? Am J Gastroenterol. 2004;99(5):889–93.
Loftus CG, et al. Update on the incidence and prevalence of Crohn’s disease and ulcerative colitis in Olmsted County, Minnesota, 1940–2000. Inflamm Bowel Dis. 2007;13(3):254–61.
Bernstein CN. Treatment of the extraintestinal manifestations of inflammatory bowel disease. Curr Gastroenterol Rep. 2002;4(6):513–6.
Averill RF, et al. Achieving cost control, care coordination, and quality improvement through incremental payment system reform. J Ambul Care Manage. 2010;33(1):2–23.
Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26(1):1–7.
Kane S, Cohen RD, Aikens JE, Hanauer SB. Predictors of non-compliance with mesalamine in quiescent ulcerative colitis. Am J Gastroenterol. 2001;96:2929–32.
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.
Kane S. Medication adherence and the physician–patient relationship. Am J Gastroenterol. 2002;97(7):1853.
Kane S. Is non-adherence to blame? Inflamm Bowel Dis. 2005;11(7):705.
Kane S, Dixon L. Adherence rates with infliximab therapy in Crohn’s disease. Aliment Pharmacol Ther. 2006;24(7):1099–103.
Kane S, Shaya F. Medication non-adherence is associated with increased medical health care costs. Dig Dis Sci. 2008;53(4):1020–4.
Kane SV. Systematic review: adherence issues in the treatment of ulcerative colitis. Aliment Pharmacol Ther. 2006;23(5):577–85.
Kane SV. Strategies to improve adherence and outcomes in patients with ulcerative colitis. Drugs. 2008;68(18):2601–9.
Kane SV, Chao J, Mulani PM. Adherence to infliximab maintenance therapy and health care utilization and costs by Crohn’s disease patients. Adv Ther. 2009;26(10):936–46.
Ediger JP, et al. Predictors of medication adherence in inflammatory bowel disease. Am J Gastroenterol. 2007;102(7):1417–26.
Shale M, Riley SA. Studies of compliance with delayed-release mesalazine therapy in patients with inflammatory bowel disease. Alimentary Pharmacol Ther. 2003;18(2):191–203.
Sewitch M, Abrahamowicz M., Barkun A., Bitton A., Wild GE, Cohen A., Dobkin PL. Patient non-adherence to medication in inflammatory bowel disease. Am J Gastroenterol. 2003;98(7):1535–44.
Lakatos PL, et al. Association of adherence to therapy and complementary and alternative medicine use with demographic factors and disease phenotype in patients with inflammatory bowel disease. J Crohns Colitis. 2010;4(3):283–90.
Moser G., Maeir-Dobersberger T, Vogelsang H, Lochs H, Inflammatory bowel disease: patients beliefs about the etiology of their disease—a controlled study. Psychosom Med. 1993;55:131.
Bitton A, Sewitch M, Peppercorn MA, deB Edwardes MD, Shah S, Ransil B, Locke SE. Psychosocial determinants of relapse in ulcerative colitis: a longitudinal study. Am J Gastroenterol. 2003;98(10):2203–8.
Bernstein CN, Walker JR, Graff LA. On studying the connection between stress and IBD. Am J Gastroenterol. 2006;101(4):782–5.
Keefer L, Keshavarzian A, Mutlu E. Reconsidering the methodology of “stress” research in inflammatory bowel disease. J Crohns Colitis. 2008;2(3):193–201.
Mawdsley J, Macey MG, Feakins RM, Langmead L, Rampton DS. The effect of acute psychological stress on systemic and rectal mucosal measures of inflammation in ulcerative colitis. Gastroenterology. 2006;131:410–19.
Mawdsley J, Rampton DS. Psychological stress in IBD: new insights into pathogenic and therapeutic implications. Gut. 2005;54:1481–91.
Maunder R. Evidence that stress contributes to inflammatory bowel disease: evaluation, synthesis and future directions. Inflamm Bowel Dis. 2005;11(6):600–8.
Levenstein S, Prantera C, Varvo V, Scibano ML, Berto E, Andreoli A, Luzi C. Psychological stress and disease activity in ulcerative colitis: a multidimensional cross-sectional study. Am J Gastroenterol. 1994;89(8):1219–25.
Graff LA, et al. Stress coping, distress, and health perceptions in inflammatory bowel disease and community controls. Am J Gastroenterol. 2009;104(12):2959–69.
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.
Larsson K., Loof L, Ronnblom A, Nordin K. Quality of life for patients with exacerbation in inflammatory bowel disease and how they cope with disease activity. J Psychosom Res. 2008;64:139–48.
Jones, M., Wessinger S, Crowell MD. Coping strategies and interpersonal support in patients with irritable bowel syndrome and inflammatory bowel disease. Clin Gastroenterol Hepatol. 2006;4(4):474–81.
Baars JE, et al. Patients’ preferences regarding shared decision-making in the treatment of inflammatory bowel disease: results from a patient-empowerment study. Digestion. 2010;81(2):113–9.
Dupuis M, et al. Assessing the educational needs of Canadian gastroenterologists and gastroenterology nurses: challenges to optimal care in Crohn’s Disease. Can J Gastroenterol. 2009;23(12):805–10.
Moser G, et al. Relationship between the use of unconventional therapies and disease-related concerns: a study of patients with inflammatory bowel disease. J Psychosom Res. 1996;40(5):503–9.
Shoor S, Lorig KR. Self-care and the doctor–patient relationship. Med Care. 2002;40(4 Suppl):II40–44.
Andrews JM, et al. Un-promoted issues in inflammatory bowel disease: opportunities to optimize care. Intern Med J. 2010;40(3):173–82.
Barrett SM, Standen PJ, Lee AS, Hawkey CJ, Logan RF. Personality, smoking and inflammatory bowel disease. Eur J Gastroenterol Hepatol. 1996;8:651–5.
de Rooy E, Toner BB, Maunder RG, Greenberg GR, Baron D, Steinhart H, McLeod R, Cohen Z. Concerns of patients with inflammatory bowel disease: results from a clinical population. Am J Gastroenterol. 2001;96(6):1816–21.
Lewis M. Attributions and inflammatory bowel disease: patients’ perceptions of their ilness causes and effects of these perceptions on relationships. Alberta Association of Registered Nurses (AARN) News Lett. 1998;44(5):16-17.
Kiebles JL, Doerfler B, Keefer L. Preliminary evidence supporting a framework of psychological adjustment to inflammatory bowel disease. Inflamm Bowel Dis. 2010;16(10):1685–95.
Pihl-Lesnovska K, et al. Patients’ perspective of factors influencing quality of life while living with Crohn disease. Gastroenterol Nurs. 2010;33(1):37–44; quiz 45–6.
Malik BA, et al. Health-related quality of life in pediatric ulcerative colitis patients on conventional medical treatment compared to those after restorative proctocolectomy. Int J Colorectal Dis. 2013;28(3):325–33.
van der Eijk I, et al. The role of quality of care in health-related quality of life in patients with IBD. Inflamm Bowel Dis. 2004;10(4):392–8.
Trivedi I, Keefer L. Management of the emerging adult with IBD: optimizing transition and addressing challenges from the adult gastroenterologist perspective. Gastroenterol Res Pract. 2015. in press.
Moen A, Brennan P. Health@Home: the work of health information management in the household (HIMH): implications for consumer health informatics (CHI) innovations. J Am Med Inform Assoc. 2005;12(6):648–56.
Kane S. Information needs and preferences in IBD (IBD self-management: the AGA guide to Crohn’s disease and ulcerative colitis). Inflamm Bowel Dis. 2011;17(8):E102.
Ory MG, et al. National study of chronic disease self-management: age comparison of outcome findings. Health Educ Behav. 2014;41(1 Suppl):34–42 S.
Holman H, Lorig K. Patient self-management: a key to effectiveness and efficiency in care of chronic disease. Public Health Rep. 2004;119(3):239–43.
Ahn S, et al. The impact of chronic disease self-management programs: healthcare savings through a community-based intervention. BMC Public Health. 2013;13:1141.
Institute of Medicine (US) Committee on Quality of Health Care in America Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press (US); 2001.
Barlow C, et al. A critical review of self-management and educational interventions in inflammatory bowel disease. Gastroenterol Nurs. 2010;33(1):11–8.
McCombie AM, Mulder RT, Gearry RB. Psychotherapy for inflammatory bowel disease: a review and update. J Crohns Colitis. 2013;7(12):935–49.
Knowles SR, Monshat K, Castle DJ. The efficacy and methodological challenges of psychotherapy for adults with inflammatory bowel disease: a review. Inflamm Bowel Dis. 2013;19(12):2704–15.
Lim JW, et al. Understanding the cultural health belief model influencing health behaviors and health-related quality of life between Latina and Asian-American breast cancer survivors. Support Care Cancer. 2009;17(9):1137–47.
Scarinci IC, Bandura L, Hidalgo B, Cherrington A. Development of a theory-based (PEN-3 and Health Belief Model), culturally relevant intervention on cervical cancer prevention among Latina immigrants using intervention mapping. Health Promot Pract. 2012;13(1):29-40
Wang JH, et al. The influence of culture and cancer worry on colon cancer screening among older Chinese-American women. Ethn Dis. 2006;16(2):404–11.
van Weert JC, van Noort G, Bol N, van Dijk L, Tates K, Jansen J. Tailored information for cancer patients on the Internet: effects of visual cues and language complexity on information recall and satisfaction. Patient Educ Couns. 2011;84(3):368-78.
Ackerson LK, Viswanath K. The social context of interpersonal communication and health. J Health Commun. 2009;14(Suppl 1):5–17.
Viswanath K, Ackerson LK. Race, ethnicity, language, social class, and health communication inequalities: a nationally-representative cross-sectional study. PLoS One. 2011;6(1):e14550.
Clayman ML, et al. Providing health messages to Hispanics/Latinos: understanding the importance of language, trust in health information sources, and media use. J Health Commun. 2010;15(Suppl 3):252–63.
Arora NK, et al. Frustrated and confused: the American public rates its cancer-related information-seeking experiences. J Gen Intern Med. 2008;23(3):223–8.
Jimison H, Gorman P, Woods S, et al. Barriers and drivers of health information technology use for the elderly, chronically ill, and underserved. Evidence Report/Technology Assessment Association for Healthcare Research and Quality (AHRQ), Editor. 2008, National Institutes of Health: Rockville, MD.
Cima RR, et al. Internet use by patients in an inflammatory bowel disease specialty clinic. Inflamm Bowel Dis. 2007;13(10):1266–70.
O’Dea B, Campbell A. Healthy connections: online social networks and their potential for peer support. Stud Health Technol Inform. 2011;168:133–40.
Eysenbach G, et al. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions. BMJ. 2004;328(7449):1166.
Seabrook HJ, et al. Medical applications: a database and characterization of apps in Apple iOS and Android platforms. BMC Res Notes. 2014;7:573.
Siegel CA. Lost in translation: helping patients understand the risks of inflammatory bowel disease therapy. Inflamm Bowel Dis. 2010;16(12):2168–72.
National Institute of Mental Health Multisite HIV Prevention Trial Group. Social-cognitive theory mediators of behavior change in the National Institute of Mental Health Multisite HIV Prevention Trial. Health Psychol. 2001;20(5):369–76.
Berrill JW, et al. Mindfulness-based therapy for inflammatory bowel disease patients with functional abdominal symptoms or high perceived stress levels. J Crohns Colitis. 2014;8(9):945–55.
Schoultz M, et al. The use of mindfulness-based cognitive therapy for improving quality of life for inflammatory bowel disease patients: study protocol for a pilot randomised controlled trial with embedded process evaluation. Trials. 2013;14:431.
Gaylord SA, et al. Mindfulness for irritable bowel syndrome: protocol development for a controlled clinical trial. BMC Complement Altern Med. 2009;9:24.
Mawdsley JE, et al. The effect of hypnosis on systemic and rectal mucosal measures of inflammation in ulcerative colitis. Am J Gastroenterol. 2008;103(6):1460–9.
Keefer L, et al. Gut-directed hypnotherapy significantly augments clinical remission in quiescent ulcerative colitis. Aliment Pharmacol Ther. 2013;38(7):761–71.
Keefer L, et al. The potential role of a self-management intervention for ulcerative colitis: a brief report from the ulcerative colitis hypnotherapy trial. Biol Res Nurs. 2012;14(1):71–7.
Bandura A. Social cognitive theory: an agentic perspective. Annu Rev Psychol. 2001;52:1–26.
Keefer L, Doerfler B, Artz C. Optimizing management of Crohn’s disease within a project management framework: results of a pilot study. Inflamm Bowel Dis. 2012;18(2):254–60.
Vogelaar L, et al. Solution focused therapy: a promising new tool in the management of fatigue in Crohn’s disease patients psychological interventions for the management of fatigue in Crohn’s disease. J Crohns Colitis. 2011;5(6):585–91.
Grzes M, Kudenko D. Online learning of shaping rewards in reinforcement learning. Neural Netw. 2010;23(4):541–50.
Zheng M, Lu L, Zhao M. Spreading in online social networks: the role of social reinforcement. Phys Rev E Stat Nonlin Soft Matter Phys. 2013;88(1):012818.
Si J, Wang YT. Online learning control by association and reinforcement. IEEE Trans Neural Netw. 2001;12(2):264–76.
Hoffman AJ, et al. Testing a theoretical model of perceived self-efficacy for cancer-related fatigue self-management and optimal physical functional status. Nurs Res. 2009;58(1):32–41.
Airlie J, Baker GA, Smith SJ, Young CA. Measuring the impact of multiple sclerosis on psychosocial functioning: the development of a new self-efficacy scale. Clinical Rehabilitation. 2001;15(3):259–65.
Sarkar U, Ali S, Whooley MA. Self-efficacy as a marker of cardiac function and predictor of heart failure hospitalization and mortality in patients with stable coronary heart disease: findings from the heart and soul study. Health Psychology. 2009;28(2):166–73.
Bernal H, Woolley S, Schenaul J, Dickinson J. Correlates of self-efficacy in diabetes self-care among Hispanic adults with diabetes. Diabetes Educ. 2000;26:673–80.
McAuley E, Lox C, Duncan TE. Long-term maintenance of exercise, self-efficacy and physiological change in older adults. J Gerontol. 1993;48:218–24.
Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84:191–215.
Keefer L, Kiebles JL, Taft TH. The role of self-efficacy in inflammatory bowel disease management: preliminary validation of a disease-specific measure. Inflamm Bowel Dis. 2011;17(2):614–20.
Kennedy AP, et al. A randomised controlled trial to assess the effectiveness and cost of a patient orientated self management approach to chronic inflammatory bowel disease. Gut. 2004;53(11):1639–45.
Robinson A, et al. Guided self-management and patient-directed follow-up of ulcerative colitis: a randomised trial. Lancet. 2001;358(9286):976–81.
Hommel KA, et al. Self-management in pediatric inflammatory bowel disease: a clinical report of the North American Society for pediatric gastroenterology, hepatology, and nutrition. J Pediatr Gastroenterol Nutr. 2013;57(2):250–7.
Fishman LN, et al. Self-management of older adolescents with inflammatory bowel disease: a pilot study of behavior and knowledge as prelude to transition. Clin Pediatr (Phila). 2010;49(12):1129–33.
Sadowski DC, et al. Canadian Association of Gastroenterology clinical practice guidelines: the use of tumour necrosis factor-alpha antagonist therapy in Crohn’s disease. Can J Gastroenterol. 2009;23(3):185–202.
Lichtenstein GR, Hanauer SB, Sandborn WJ. Management of Crohn’s disease in adults. Am J Gastroenterol. 2009;104(2):465–83; quiz 464, 484.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2016 Springer International Publishing Switzerland
About this chapter
Cite this chapter
Keefer, L., Kane, S. (2016). Self-Management Techniques in IBD. In: Cross, R., Watson, A. (eds) Telemanagement of Inflammatory Bowel Disease. Springer, Cham. https://doi.org/10.1007/978-3-319-22285-1_5
Download citation
DOI: https://doi.org/10.1007/978-3-319-22285-1_5
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-319-22284-4
Online ISBN: 978-3-319-22285-1
eBook Packages: MedicineMedicine (R0)