Transition of care in inflammatory bowel disease

Gastroenterology and Hepatology

Volumn 10, Issue 10, 2014, Pages 633-640

  Abraham, Bincy P ^a   Kahn, Stacy A ^b  

^a HOUSTON METHODIST RESEARCH INSTITUTE   (United States)

^b UNIVERSITY OF CHICAGO MEDICAL CENTER   (United States)

Author keywords

Adolescent; Crohn's disease; Inflammatory bowel disease; Transition; Ulcerative colitis

Indexed keywords

ANXIETY; ARTICLE; CHRONIC DISEASE; DEPRESSION; FAMILY; HUMAN; INFLAMMATORY BOWEL DISEASE; KNOWLEDGE; LONG TERM CARE; MATURITY; OUTCOME ASSESSMENT; PATIENT COMPLIANCE; PRACTICE GUIDELINE; SELF CARE; SELF CONCEPT; SKILL; TRANSITION TO ADULT CARE;

EID: 84908370655     PISSN: 15547914     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (81)

1. Jostins L, Ripke S, Weersma RK, et al; International IBD Genetics Consortium (IIBDGC). Host-microbe interactions have shaped the genetic architecture of inflammatory bowel disease. Nature. 2012;491(7422):119-124.
2. Goodhand J, Dawson R, Hefferon M, et al. Inflammatory bowel disease in young people: the case for transitional clinics. Inflamm Bowel Dis. 2010;16(6):947-952.
3. Van Limbergen J, Russell RK, Drummond HE, et al. Definition of phenotypic characteristics of childhood-onset inflammatory bowel disease. Gastroenterology.2008;135(4):1114-1122.
4. Bollegala N, Brill H, Marshall JK. Resource utilization during pediatric to adult transfer of care in IBD. J Crohns Colitis. 2013;7(2):e55-e60.
5. Agency for Healthcare Research and Quality. Hospitalizations for kids with inflammatory bowel disease are frequent and costly. Research Activities, November 2012, No. 387. http://www.ahrq.gov/news/newsletters/researchactivities/12nov/1112RA16.html. Accessed September 10, 2014.
6. Greenley RN, Doughty A, Stephens M, et al. Brief report: development of the inflammatory bowel disease family responsibility questionnaire. J Pediatr Psychol. 2010;35(2):183-187.
7. Turunen P, Kolho KL, Auvinen A, Iltanen S, Huhtala H, Ashorn M. Incidence of inflammatory bowel disease in Finnish children, 1987-2003. Inflamm Bowel Dis. 2006;12(8):677-683.
8. Sawczenko A, Sandhu BK, Logan RF, et al. Prospective survey of childhood inflammatory bowel disease in the British Isles. Lancet. 2001;357(9262):1093-1094.
9. Russel MG. Changes in the incidence of inflammatory bowel disease: what does it mean? Eur J Intern Med. 2000;11(4):191-196.
10. Loftus EV Jr. Clinical epidemiology of inflammatory bowel disease: incidence, prevalence, and environmental influences. Gastroenterology. 2004;126(6):1504-1517.
11. Levi Z, Shamiss A, Fraser GM, et al. The increasing prevalence of inflammatory bowel diseases among Jewish adolescents and the sociodemographic factors associated with diagnosis. Inflamm Bowel Dis. 2013;19(9):1867-1871.
12. Kugathasan S, Judd RH, Hoffmann RG, et al; Wisconsin Pediatric Inflammatory Bowel Disease Alliance. Epidemiologic and clinical characteristics of children with newly diagnosed inflammatory bowel disease in Wisconsin: a statewide population-based study. J Pediatr. 2003;143(4):525-531.
13. McCartney S. Inflammatory bowel disease in transition: challenges and solutions in adolescent care. Frontline Gastroenterol. 2011;2(4):237-241.
14. Cervesi C, Battistutta S, Martelossi S, Ronfani L, Ventura A. Health priorities in adolescents with inflammatory bowel disease: physicians' versus patients' perspectives. J Pediatr Gastroenterol Nutr. 2013;57(1):39-42.
15. Rutgeerts P, Vermeire S, Van Assche G. Mucosal healing in inflammatory bowel disease: impossible ideal or therapeutic target? Gut. 2007;56(4):453-455.
16. Britto MT, DeVellis RF, Hornung RW, DeFriese GH, Atherton HD, Slap GB. Health care preferences and priorities of adolescents with chronic illnesses. Pediatrics. 2004;114(5):1272-1280.
17. Hait E, Arnold JH, Fishman LN. Educate, communicate, anticipate - practical recommendations for transitioning adolescents with IBD to adult health care. Inflamm Bowel Dis. 2006;12(1):70-73.
18. Baldassano R, Ferry G, Griffiths A, Mack D, Markowitz J, Winter H. Transition of the patient with inflammatory bowel disease from pediatric to adult care: recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. J Pediatr Gastroenterol Nutr. 2002;34(3):245-248.
19. Zeisler B, Hyams JS. Transition of management in adolescents with IBD. Nat Rev Gastroenterol Hepatol. 2014;11(2):109-115.
20. Leung Y, Heyman MB, Mahadevan U. Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist. Inflamm Bowel Dis. 2011;17(10):2169-2173.
21. de Silva PS, Fishman LN. Transition of the patient with IBD from pediatric to adult care-an assessment of current evidence. Inflamm Bowel Dis. 2014;20(8):1458-1464.
22. Goodhand J, Hedin CR, Croft NM, Lindsay JO. Adolescents with IBD: the importance of structured transition care. J Crohns Colitis. 2011;5(6):509-519.
23. Paine CW, Stollon NB, Lucas MS, et al. Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers [published online August 17, 2014]. Inflamm Bowel Dis. doi.org/10.1097/MIB.0000000000000136.
24. Sebastian S, Jenkins H, Arnott I, et al. Barriers to transition care in inflammatory bowel disease: a survey of adult and paediatric gastroenterologists in the UK. Gut. 2011;60(suppl 1):A215-A216.
25. Gray WN, Denson LA, Baldassano RN, Hommel KA. Treatment adherence in adolescents with inflammatory bowel disease: the collective impact of barriers to adherence and anxiety/depressive symptoms. J Pediatr Psychol. 2012;37(3):282-291.
26. El-Matary W. Transition of children with inflammatory bowel disease: big task, little evidence. World J Gastroenterol. 2009;15(30):3744-3747.
27. Philpott JR. Transitional care in inflammatory bowel disease. Gastroenterol Hepatol (N Y). 2011;7(1):26-32.
28. Wright EK, Williams J, Andrews JM, et al. Perspectives of paediatric and adult gastroenterologists on transfer and transition care of adolescents with inflammatory bowel disease. Intern Med J. 2014;44(5):490-496.
29. Tuchman LK, Slap GB, Britto MT. Transition to adult care: experiences and expectations of adolescents with a chronic illness. Child Care Health Dev. 2008;34(5):557-563.
30. Hait EJ, Barendse RM, Arnold JH, et al. Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of adult gastroenterologists. J Pediatr Gastroenterol Nutr. 2009;48(1):61-65.
31. Benchimol EI, Walters TD, Kaufman M, et al. Assessment of knowledge in adolescents with inflammatory bowel disease using a novel transition tool. Inflamm Bowel Dis. 2011;17(5):1131-1137.
32. Fishman LN, Barendse RM, Hait E, Burdick C, Arnold J. 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):1129-1133.
33. Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84(2):191-215.
34. Jensen MP, Turner JA, Romano JM. Self-efficacy and outcome expectancies: relationship to chronic pain coping strategies and adjustment. Pain. 1991;44(3):263-269.
35. Lorig KR, Ritter P, Stewart AL, et al. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Med Care. 2001;39(11):1217-1223.
36. Cross MJ, March LM, Lapsley HM, Byrne E, Brooks PM. Patient self-efficacy and health locus of control: relationships with health status and arthritis-related expenditure. Rheumatology (Oxford). 2006;45(1):92-96.
37. Greveson K, Morgan N, Furman M, Murray C. Attitudes and experiences of adolescents in an innovative IBD transition service. Gastrointestinal Nurs. 2011;9(1):35-41.
38. Zijlstra M, De Bie C, Breij L, et al. Self-efficacy in adolescents with inflammatory bowel disease: a pilot study of the "IBD-yourself ", a disease-specific questionnaire. J Crohns Colitis. 2013;7(9):e375-e385.
39. 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):614-620.
40. Izaguirre MR, Keefer L. Development of a self-efficacy scale for adolescents and young adults with inflammatory bowel disease: a qualitative study. J Pediatr Gastroenterol Nutr. 2014;59(1):29-32.
41. Jackson CA, Clatworthy J, Robinson A, Horne R. Factors associated with non-adherence to oral medication for inflammatory bowel disease: a systematic review. Am J Gastroenterol. 2010;105(3):525-539.
42. Holmes-Walker DJ, Llewellyn AC, Farrell K. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15-25 years. Diabet Med. 2007;24(7):764-769.
43. 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):936-946.
44. Higgins PD, Rubin DT, Kaulback K, Schoenfield PS, Kane SV. 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):247-257.
45. Lakatos PL. Prevalence, predictors, and clinical consequences of medical adherence in IBD: how to improve it? World J Gastroenterol. 2009;15(34):4234-4239.
46. LeLeiko NS, Lobato D, Hagin S, et al. Rates and predictors of oral medication adherence in pediatric patients with IBD. Inflamm Bowel Dis. 2013;19(4):832-839.
47. Kamperidis N, Goodhand JR, Chowdhury FA, et al. Factors associated with nonadherence to thiopurines in adolescent and adult patients with inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2012;54(5):685-689.
48. Goodhand JR, Kamperidis N, Sirwan B, et al. Factors associated with thiopurine non-adherence in patients with inflammatory bowel disease. Aliment Pharmacol Ther. 2013;38(9):1097-1108.
49. Bernick SJ, Kane S. Optimizing use of 5-ASA in the treatment of ulcerative colitis: focus on patient compliance and adherence. Patient Relat Outcome Meas. 2010;1:57-63.
50. Devlen J, Beusterien K, Yen L, Ahmed A, Cheifetz AS, Moss AC. Barriers to mesalamine adherence in patients with inflammatory bowel disease: a qualitative analysis. J Manag Care Pharm. 2014;20(3):309-314.
51. Kane SV. Strategies to improve adherence and outcomes in patients with ulcerative colitis. Drugs. 2008;68(18):2601-2609.
52. Annunziato RA, Emre S, Shneider B, Barton C, Dugan CA, Shemesh E. Adherence and medical outcomes in pediatric liver transplant recipients who transition to adult services. Pediatr Transplant. 2007;11(6):608-614.
53. Cadario F, Prodam F, Bellone S, et al. Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: a hospital-based approach. Clin Endocrinol (Oxf). 2009;71(3):346-350.
54. Kane S. Medication adherence and the physician-patient relationship. Am J Gastroenterol. 2002;97(7):1853.
55. Guthrie RM. The effects of postal and telephone reminders on compliance with pravastatin therapy in a national registry: results of the first myocardial infarction risk reduction program. Clin Ther. 2001;23(6):970-980.
56. Hulka BS, Cassel JC, Kupper LL, Burdette JA. Communication, compliance, and concordance between physicians and patients with prescribed medications. Am J Public Health. 1976;66(9):847-853.
57. Sbarbaro JA. The patient-physician relationship: compliance revisited. Ann Allergy. 1990;64(4):325-331.
58. Kane SV, Robinson A. Review article: understanding adherence to medication in ulcerative colitis-innovative thinking and evolving concepts. Aliment Pharmacol Ther. 2010;32(9):1051-1058.
59. Greenley RN, Kunz JH, Walter J, Hommel KA. Practical strategies for enhancing adherence to treatment regimen in inflammatory bowel disease. Inflamm Bowel Dis. 2013;19(7):1534-1545.
60. Dayer L, Heldenbrand S, Anderson P, Gubbins PO, Martin BC. Smartphone medication adherence apps: potential benefits to patients and providers. J Am Pharm Assoc (2003). 2013;53(2):172-181.
61. Steinberg L. Cognitive and affective development in adolescence. Trends Cogn Sci. 2005;9(2):69-74.
62. Yurgelun-Todd D. Emotional and cognitive changes during adolescence. Curr Opin Neurobiol. 2007;17(2):251-257.
63. Nicholas DB, Otley A, Smith C, Avolio J, Munk M, Griffiths AM. Challenges and strategies of children and adolescents with inflammatory bowel disease: a qualitative examination. Health Qual Life Outcomes. 2007;5(1):28.
64. Reigada LC, Bruzzese J-M, Benkov KJ, et al. Illness-specific anxiety: implications for functioning and utilization of medical services in adolescents with inflammatory bowel disease. J Spec Pediatr Nurs. 2011;16(3):207-215.
65. Greenley RN, Hommel KA, Nebel J, et al. A meta-analytic review of the psychosocial adjustment of youth with inflammatory bowel disease. J Pediatr Psychol. 2010;35(8):857-869.
66. Mackner LM, Crandall WV. Brief report: psychosocial adjustment in adolescents with inflammatory bowel disease. J Pediatr Psychol. 2006;31(3):281-285.
67. Castaneda AE, Tuulio-Henriksson A, Aronen ET, Marttunen M, Kolho KL. Cognitive functioning and depressive symptoms in adolescents with inflammatory bowel disease. World J Gastroenterol. 2013;19(10):1611-1617.
68. Sowell ER, Thompson PM, Holmes CJ, Jernigan TL, Toga AW. In vivo evidence for post-adolescent brain maturation in frontal and striatal regions. Nat Neurosci. 1999;2(10):859-861.
69. De Civita M, Dobkin PL. Pediatric adherence as a multidimensional and dynamic construct, involving a triadic partnership. J Pediatr Psychol. 2004;29(3):157-169.
70. Dabadie A, Troadec F, Heresbach D, Siproudhis L, Pagenault M, Bretagne JF. Transition of patients with inflammatory bowel disease from pediatric to adult care. Gastroenterol Clin Biol. 2008;32(5 pt 1):451-459.
71. Herzer M, Denson LA, Baldassano RN, Hommel KA. Patient and parent psychosocial factors associated with health-related quality of life in pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2011;52(3):295-299.
72. Gray WN, Graef DM, Schuman SS, Janicke DM, Hommel KA. Parenting stress in pediatric IBD: relations with child psychopathology, family functioning, and disease severity. J Dev Behav Pediatr. 2013;34(4):237-244.
73. O'Sullivan-Oliveira J, Fernandes SM, Borges LF, Fishman LN. Transition of pediatric patients to adult care: an analysis of provider perceptions across discipline and role. Pediatr Nurs. 2014;40(3):113-120, 142.
74. Crohn's & Colitis Foundation of America. Find a healthcare professional. http://www.ccfa.org/living-with-crohns-colitis/find-a-doctor. Accessed September 10, 2014.
75. Jennings A, Powell J, Armstrong N, Sturt J, Dale J. A virtual clinic for diabetes self-management: pilot study. J Med Internet Res. 2009;11(1):e10.
76. Meade BJ, Dunbar JA. A virtual clinic: telemetric assessment and monitoring for rural and remote areas. Rural Remote Health. 2004;4(3):296.
77. Davies IH, Jenkins HR. Transition clinics for adolescents with chronic gastrointestinal disease in the UK and Ireland. J Pediatr Gastroenterol Nutr. 2003;36(4):505-506.
78. Abraham B, Ferry GD. Transition from pediatric to adult care. In: Mamula P, Markowitz JE, Baldassano RN, eds. Pediatric Inflammatory Bowel Disease. 2nd ed. New York, NY: Springer; 2013:571-579.
79. Denson LA, Lu Y, Szigethy E; North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. A case-based monograph focusing on IBD. Improving health supervision in pediatric and young adult patients with IBD. http://www.naspghan.org/files/documents/pdfs/cme/podcasts/IBD%20Health%20Supervision%20Newsletter.pdf. Published June 1, 2011. Accessed September 10, 2014.
80. Digestive Health for Life; Children's Digestive Health & Nutrition Foundation; North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. Transitioning a patient with IBD from pediatric to adult care. http://www.naspghan. org/files/documents/pdfs/medical-resources/ibd/Checklist-PatientandHealthcareProdiver-TransitionfromPedtoAdult.pdf. Accessed September 10, 2014.
81. Digestive Health for Life; Children's Digestive Health & Nutrition Foundation; North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. Preparing to transition from a pediatric to adult care practitioner: transitioning to adulthood with IBD. http://cdhnfsite.wms.cdgsolutions.com/user-assets/documents/pdf/TransitionTeen.pdf. Accessed September 10, 2014.