REVIEW ARTICLE
Transition of the Patient with IBD from Pediatric to Adult Care—An Assessment of Current Evidence Punyanganie S. A. de Silva, MBBS, MRCP* ,‡ and Laurie N. Fishman, MD†,‡
Abstract: Inflammatory bowel disease is a chronic disease of remitting and relapsing nature that is increasingly diagnosed in childhood or adolescence. The importance of the transition from pediatric to adult health care is increasingly recognized, yet the preparation of patient and family before transfer and early subsequent care in the adult health care environment can be variable and challenging. Pediatric providers need to start early and prepare patients in a stepwise fashion. However, patients may not have mastered all the steps before transfer or may regress to earlier behaviors during stress. Thus, adult providers will need to understand how to maintain and finish the transition process. This is an updated literature review of the transition process in inflammatory bowel disease, which focuses on the practical ways that both pediatric and adult health care providers can optimize care. (Inflamm Bowel Dis 2014;20:1458–1464) Key Words: inflammatory bowel disease, transition, transfer, adolescent, pediatric, adult
I
nflammatory bowel disease (IBD) is a chronic disease that is increasingly diagnosed in childhood or adolescence. As patients mature to adulthood, they need uninterrupted care. It is therefore imperative that a seamless passage occurs from pediatric- to adultcentered health care. Transition is an important concept in ensuring optimal health care management of adolescent and young adult patients. It is a patient-centered process that seeks to maximize lifelong functioning and potential through the provision of highquality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood.1 Most of the major pediatric medical societies have issued consensus statements, starting in 2002, reaffirming the importance of supporting and facilitating the transition of adolescents with special health care needs into adulthood.1 There are common misconceptions of what constitutes transition. Transfer only refers to the actual move from pediatric to adult health care provider, usually culminating with the first visit in the adult health care environment with an adult-oriented physician. In contrast, transition is a lengthy process of preparing the adolescent for a life as an adult and receiving care from adult health care providers. Participation of parent and pediatric provider are essential to help the patient develop the requisite skills and abilities. Transition even extends to the adult health care Received for publication February 27, 2014; Accepted March 13, 2014. From the *Division of Gastroenterology, Hepatology and Endoscopy, Brigham and Women’s Hospital, Boston, Massachusetts; †Division of Pediatric Gastroenterology, Boston Children’s Hospital, Boston, Massachusetts; and ‡Harvard Medical School, Boston, Massachusetts. The authors have no conflicts of interest to disclose. Reprints: Punyanganie S. A. de Silva, MBBS, MRCP, Division of Gastroenterology, Hepatology and Endoscopy, Brigham and Women’s Hospital, 75 Francis Street, Boston, MA 02115 (e-mail: [email protected]). Copyright © 2014 Crohn’s & Colitis Foundation of America, Inc. DOI 10.1097/MIB.0000000000000045 Published online 19 May 2014.
1458
| www.ibdjournal.org
provider and affiliated health care team, who need to take into account various physical, medical, developmental, social, and emotional needs of these patients and their families, in a manner that is different than for established adult patients. Pediatric gastroenterologists have often emphasized the transition process in their clinical practice.2,3 In adult practice, attitudes can vary with some gastroenterologists assuming that once patients are transferred, they must be fully ready to integrate into adult health care and society, and other providers recognizing that there are still some overlaps in readiness.4,5 Transition takes different paths in various countries. For example, in Canada and Europe, mandatory transfer typically occurs by age 18, whereas in the United States, young adults may stay on parental insurance until age 26, thereby blurring a sense of autonomy. In the past, transition discussions focused exclusively on pediatric providers preparing the patient to deal with a new adult environment and culture. However, it seems to be increasingly evident that there should also be a shift in adult gastroenterology practice to accommodate the distinct needs of transitioning patients. The essentials of transition are similar for all conditions, but each condition has distinct aspects as well. In some conditions such as diabetes, the pediatric and adult forms of the disease and subsequent management may be quite similar, whereas congenital diseases, such as cystic fibrosis or sickle cell disease, are often unfamiliar to adult providers. However, for IBD, the differences between the pediatric onset and adult onset forms may be less obvious to providers. The incidence of IBD in children is increasing6 with very early onset disease being more frequently recognized. Children with IBD often have more aggressive and extensive disease. Additionally, because children develop the disease early, they often have increased risk of complications by the time they transfer to adult care. The risk of developing complications over time, particularly in Crohn’s disease remains variable and complex; but many cohort and population-based studies have Inflamm Bowel Dis Volume 20, Number 8, August 2014
Inflamm Bowel Dis Volume 20, Number 8, August 2014
highlighted that at diagnosis, between 19% and 38% of all patients with Crohn’s disease have complicated disease. After 10 years, 56% to 65% of patients have developed either stricturing or penetrating complications, and after 20 years, these numbers range from 61% to 88%.7 Therefore, the adult gastroenterologist should recognize that pediatric onset patients comprise a sicker patient cohort with a longer, more complex history of IBD and related medication use. The more aggressive nature of pediatric disease also increases the risk of relapse or surgery.8 It has been noted that after surgery or relapse, there can be a regression to younger behavior on the part of even well-adjusted patients,9 which in turn can pose unfamiliar challenges to the adult medical team.
Attitudes About Transition The transitioning patient may be taken aback by the shift in culture in the adult provider environment. The adult style practice emphasizes autonomy and respect centered on the individual, whereas pediatric style practice favors nurturance, with possible paternalism, and centers on the family. The transitioning patient also faces challenges in understanding the different medical focus between pediatric and adult gastroenterologists, with pediatric care focused on growth and development and adult care directed toward cancer surveillance, sexual function, fertility, and pregnancy. Misinterpretation of these differences can lead to issues with noncompliance, poor office visit attendance, and subsequent flares in disease activity once the patient has transferred to adult care.10,11 Furthermore, many patients are very close to their pediatric provider and may feel a tremendous loyalty to this person. If the pediatric provider does recommend transfer, the patient may feel a sense of abandonment; however, the patient may feel uncertain about transfer if the provider does not wholeheartedly endorse graduating to adult care. The onus for a successful transition does not only lie with the patient but also with the providers. Often it goes unrecognized that the 2 specialties have radically different cultures. Pediatric providers may judge the adult providers by the pediatric standards of nurturance or family centered care and find them cold or uncaring. Adult providers may judge pediatric providers by adult standards of autonomy and respect and find them paternalistic or meddling. The unconscious signals from each provider add tension to the transitioning patient who is already struggling to reconcile all the changes. Provider feelings about the patient can also play a role. Although it has been demonstrated that pediatric clinicians identify patient and parental emotional attachment to the provider as an important barrier to transition, they are less cognizant of their own attachment to the patient as a barrier to transition.12 It is important that all patients eventually become comfortable seeing the provider without their parents. Gradual stepwise preparation for this must therefore be initiated by the pediatric gastroenterologist so that both patient and parent are comfortable with this when transfer to adult care occurs. Although many adolescents with chronic disease report that their parents’ support and involvement were important components of a successful
Transition of IBD Patient from Pediatric to Adult Care
transition, it can be difficult to discuss sexuality, alcohol, or drugs in front of parents. Adolescents may hold back unreported symptoms to avoid recrimination for not reporting sooner or leave-off concerning symptoms to avoid scaring parents. Seeing the provider alone may also help create a clearer picture of the adolescent’s transition readiness because parents are often guilty of overestimating their child’s capabilities. A recent study demonstrated that, in comparison with patient’s self-assessment, parents thought that their child was more self-efficacious in knowledge of IBD and diagnostic tests, self-management of medication use, and transfer readiness.13 However, parents may struggle with this reduced role in their child’s medical care. Studies in other chronic diseases have demonstrated that parents experience turmoil because they faced the prospect of their child transitioning.14 It can be important for the adult provider to be open to seeing the patient with their parent during the initial sessions if requested. This may have beneficial consequences such as increased rapport with patient and better understanding of the patient’s social support network, which are all contributing factors in the optimization of health care. However, spending at least some time alone with the provider does boost the patient’s independence and privacy along with encouraging improved communication and self-advocacy. It also may facilitate the parent’s recognition of the maturing capabilities of the emerging adult patient to handle self-management.
Continuity of Care To facilitate a successful transition from pediatric to adult care, it is necessary for a large amount of medical information to be communicated, including presentation of disease, previous medication failure, allergies, typical flare symptoms, laboratory value trends, location, and duration of disease. Ideally, the pediatric provider knows which adult provider will see the patient and when this visit will occur. The patient and family should be aware that communication will occur between providers to help ensure continuity of care. Thus, patients should be encouraged to choose the next provider, often with help from the pediatric provider, and communicate when the first visit will take place. To help facilitate a smooth transfer, pediatric providers can remind patients to sign releases for medical information and provide a form or letter summarizing medical history and possibly even call the new adult provider to convey sensitive information. When patients are moving far away, have an emergent problem or have not yet obtained health insurance, it can be difficult to know which adult provider will be available. Patients may then be responsible for providing information about their own medical course until records can be obtained. An organized transition program should therefore incorporate an age-appropriate educational component to address deficits in adolescent patients’ knowledge. If the patient’s course is straight forward, it may be reasonable to have patients learn and recite their own history. If it is complex, a written record that they can carry with them is more important, such as MyHealth Passport for IBD.15 www.ibdjournal.org |
1459
de Silva and Fishman
Skills Needed for a Successful Transition There is not a universal list of skills required to graduate into the world of adult health care. Each discipline and medical center describes the skills differently and organizes the list in a disparate manner. However, many transition programs highlight knowledge, self-efficacy, decision making and problem solving, self-advocacy, and information gathering as key skills that are needed to be developed during the transition process for the patient to be “transfer ready.”1 These categories of skills are also important for the adolescent patient with IBD to thrive in the adult world. Acquisition of these skills is not limited to a single encounter but rather should be a stepwise program with age-appropriate checklists of tasks for the patient and for the medical team10,11,16,17 (Table 1). These tasks should be introduced early during pediatric care, typically aged 11 or 12 years, and paced according to individual response. The goal of this stepwise approach is to have patients practice and master the steps leading to full responsibility and independent self-management behaviors that are associated with ideal adult practice by the time they are ready to transfer to adult health care.
Knowledge Young patients have been characterized as lacking basic knowledge about their own medical conditions and treatments. Expected knowledge for a patient would include basic medical history and the nature of the condition, the names and doses of medications, allergies, names of the medical team, and how to contact the team. Yet, a study from Toronto demonstrated that only 22% of adolescent patients could recall the location of their disease and only 55% could recall when they were diagnosed.15 More than 55% of respondents from a national survey of adult gastroenterologists found that patients with IBD transitioning from pediatric care had inadequate knowledge of their own disease.4 Unfortunately, adult patients also have imperfect knowledge of their condition. Using the validated Crohn’s and colitis knowledge score18 on a cohort of adult patients, only 21% to 23% knew that IBD ran in families, 26% to 46% knew that IBD can affect other parts of the body besides intestines, and 18% to 29% knew they were at increased risk for colon cancer. Only 68% to 74% were aware that they still would have the disease if symptom free for 3 years.19 A recent review did not find adult patients more knowledgeable than a decade ago.19 Patient education is an area that needs attention in both adult and pediatric practice.
Inflamm Bowel Dis Volume 20, Number 8, August 2014
and then timing of medication, or first just calling in refills, and then picking up the medicines at the pharmacy. Allowing repeated opportunities for success can help patients build confidence in their own ability to handle health-related tasks. Young patients need gradual transition from having parents assuming all responsibility for health behaviors, to combined responsibility, to then taking over the entirety of self-management. It seems that patients are taking over these healthpromoting tasks very late from parents.20 In one study looking at the development of independent behaviors, less than 20% of adolescents aged 16 to 18 years order medication refills, 35% of those aged 19 to 21 years schedule clinic visits, and 30% of those aged 19 to 21 years contact the provider between visits if there is a problem.21 Medication adherence is another sign of successful selfefficacy. However, adolescents may have other developmental reasons for poor adherence such as denial, sense of invincibility, risk-taking, desire to emulate peers, and poor planning. Additionally, adherence seems to vary with disease severity. Individual studies have demonstrated that 75% of adults on biologics were adherent,22 74% of adolescents on thiopurines were adherent23 but only one quarter of adults with ulcerative colitis were adherent with 5-aminosalicylates medication.24 Although adolescents are notorious for overall poor adherence, there is evidence from other fields that transfer to adult health care caused significantly poorer outcome25,26 indicating that the change in provider and setting may be an independent risk factor for some patients.
Information Gathering Between 20% and 25% of adult gastroenterologists in the United States and the Netherlands, respectively, consider it important for patients to be able to research their condition outside of the medical visit.4 One study shows that 62% of older adolescents use the Internet to obtain information, although parents and their doctor are also being the important sources of information.21 However, health literacy is an important prerequisite for researching one’s condition or symptoms and is often just assumed to be present. Huang et al demonstrated reduced literacy readiness for transition among younger youth, nonwhites, and those of nondisadvantaged socioeconomic status when compared with their counterparts.27 Health literacy has not been well explored in nonnative English speakers with IBD.
Self-advocacy and Decision-making Ability Self-efficacy and Self-management Self-management includes making informed and healthy choices regarding diet and lifestyle, monitoring symptoms, managing treatment, and working in partnership with providers. Patients are more likely to be successful when they have increased self-efficacy, which is the belief in one’s own ability to complete specific tasks and reach goals. To encourage mastery and selfefficacy, substantial areas of self-management can be broken down into smaller tasks. For example, managing one’s medications can first be discussed in terms of remembering name and then dose
1460
| www.ibdjournal.org
In an adult environment, patients are expected to be able to effectively communicate, negotiate, and assert their interests. Maturity and experience play a large role in the development of these skills. Because many young patients are smart and articulate, the delays in psychosocial development required for self-advocacy may not be recognized. It may surprise many clinicians to learn that young adults with IBD are often delayed in the attainment of life milestones such as holidays without adults, jobs during secondary school and beyond, and falling in love for the first time.28 Both adult and pediatric physicians should be
Inflamm Bowel Dis Volume 20, Number 8, August 2014
Transition of IBD Patient from Pediatric to Adult Care
TABLE 1. A Timeline for IBD Transition with Checklists of Tasks that the Transitioning Patient Should be Competent with Before Attending Adult Clinics Age
Patient
Medical Team
11–13
Able to articulate his or her GI condition Able to name medications, doses, side effects Knows strategies to take his or her medication Able to use and read a thermometer Articulates impact of IBD on school and daily life
Introduces idea of future independent visits Asks parents to remain in waiting room for a portion of the visit Anticipatory guidance about fitness, sexuality and substance abuse
14–16
Able to identify medical team Knows names and purposes of procedures and tests done on him or her Knows his or her medical history Knows names of IBD social support groups and community organizations Understands the medical risk of nonadherence Understands the impact of drugs and alcohol on the illness
Directs all questions and explanations to patient Patient asked for input first Explores family’s apprehension about patient taking on primary role Clarifies to patient what must legally be disclosed to parents Determines when the patient wants his or her parents in and out of the room Initiates discussion about eventual transfer of care Determines post high school plans (social, employment, education) Instructs patient how to access medical records Instructs patient to keep names of medications/dosages and medical team in wallet/purse/backpack Instructs patient on how to get prescriptions filled and how to call and schedule appointments
17–19
Knows how to gather information about IBD Demonstrates consistent ability to book own appointments, fill prescriptions, contact medical team Able to name his or her insurance coverage and plans for next 2 years of coverage Carries insurance information in wallet/purse/backpack
Initiates conversation about potential barriers to transition Identifies potential adult GI providers Encourages patient to meet and interview providers Reminds patient and family that at age 18 years, the patient has the right to make his or her own health choices
20–23
Has had a telephone conversation with potential adult GI providers Initial visit with adult GI provider is scheduled while IBD is stable
Provides patient with medical summary and checklist Transfers medical records to adult providers
GI, gastrointestinal. Checklist of tasks for the patient and the medical team based on chronological age. Adapted with permission from Hait E, Arnold JH, Fishman LN. Educate, communicate, anticipate–practical recommendations for transitioning adolescents with IBD to adult health care. Inflamm Bowel Dis. 2006;12:70–73. Copyright 2006 Crohn’s & Colitis Foundation of America, Inc.
attentive to the consequences of these delays and provide additional support if necessary. During transition to adult clinics, these topics should be an integral component of the comprehensive care of chronically ill adolescents and young adults.
Assessment of Transfer Readiness Transfer readiness occurs when patients have the comfort, confidence, and competency to understand their medical condition, follow self-management strategies, and communicate independently with the provider. It can be assessed by the patient, the pediatric providers, or, occasionally, the parents. Clinicians may assume their overall sense of whether a patient who is ready can count as an assessment. For example, at 1 institution, more than 90% of clinicians reported routinely doing informal assessment
and transition counseling with adolescent patients.12 But assessment of true readiness is difficult to measure. Although no universal instrument or transition scale has emerged, there are multiple tools that have been developed.29,30 Some like the TRAQ readiness questionnaire,31 SMART,32 and the UNC transition scale30 can be used for all conditions. Others, like the MyHealth Passport13,15 and the checklist by Fishman,33 are specific to IBD. Most instruments have a core of key competencies that are ideally mastered by patients before transfer to an adult health care practice (Table 2).
Models of Transition There is no universally established model for transition in IBD.32 Models that are used include joint adult and pediatric clinics, www.ibdjournal.org |
1461
de Silva and Fishman
TABLE 2. Examples of Competencies that Should Be Achieved by a Patient Transitioning from Pediatric to Adult IBD Care Skills
Knowledge
I understand my condition and can describe it to others I can make decisions for myself about my treatment I know how to make my appointments I can make my own transport arrangements to get to the hospital for appointments I know who to call in a medical emergency I am able to talk about my worries concerning blood tests and other treatments I can refill my own prescriptions I can navigate the phone system when calling for medical needs or appointments I know my medications and what each is for and the associated side effects I know what the adult clinic arrangements are and who will be reviewing managing my care in clinic I know the dietary advice that I have to follow and the importance of physical activity I have appropriate knowledge about sexual health matters I have discussed alcohol, smoking, and drug issues
alternating visits, advance tours of the adult facilities, coordinatorinitiated transition, preparation of patient using the assessment tools in pediatric clinics, and common transition clinics for patients with a variety of chronic diseases. Joint medical visits have been demonstrated to enable successful, well-coordinated transition to adult medical-care follow-up.34,35 Infrastructure for this is variable however and greatly depends on patient circumstance. However, virtual joint visits may potentially be an option in the future, particularly for complex cases. Many specialties also recommend a specifically designated transfer clinic in either the adult or pediatric clinic.36
TABLE 3. Key Elements that Should Be Included or Considered in All Transition Protocols A dedicated health care professional (usually the pediatric GI physician) should assume the responsibility for health care planning Core knowledge and skills required to provide transition services should be identified An up-to-date medical summary (i.e., portable and accessible) should be created. There should be a structured hand over letter from pediatric to adult services detailing date of diagnosis, site and severity of disease, results of investigations, prior surgical and medication history along with a named contact in the team from which the young person is transferring A written health care transition plan should be created The patient should have affordable, continuous health insurance coverage
1462
| www.ibdjournal.org
Inflamm Bowel Dis Volume 20, Number 8, August 2014
At present, there have been no head-to-head trials of these different models to determine which is the most appropriate trial. Rather than a universal model, each institution or practice will need to adapt a model that is most efficient, given the geographical location, available resources, patient cohort, and existing services within both the local pediatric and adult care teams (Table 3). Given the challenges faced by many patients with IBD, proactive involvement of a social worker can be extremely helpful in facilitating a seamless transition and better patient compliance.37
Timing of Transition The start of discussion of transition planning is ideally between 11 and 14 years. This timing is well accepted by a wide variety of populations and specialties. However, there is a wide range for the end of transition, with transfer occurring between 16 and 25 years or older. Transfer can be bound by external constraints such as national insurance and geographic norms. In Canada and the United Kingdom, there is nearly universal transfer by age 18 years.3,38,39 Specialty organizations, such as the Cystic Fibrosis Foundation, may exert strong encouragement through accreditation standards for centers to transfer patients around age 18 years. Individual institutions may set age limits for hospitalization or surgical care. However, for many providers and patients, there are fewer clear guidelines. Providers are divided as to whether age cutoffs (such as 18 or 21 years) are preferable to milestones such as graduation or marriage.12 The wide disparity among providers for triggers to transfer might prove problematic. For example, at 1 U.S. institution, only 52% of providers felt pregnancy was a trigger, 55% named graduation from high school, 52% named marriage, and 79% named adult comorbidities.12 A study from the United Kingdom found that 42% of adult gastroenterologists but only 29% of pediatric gastroenterologists felt that leaving school was a trigger for transfer.5 Using transition readiness as a yardstick for prompting transfer is considered ideal by some providers but may add the expense and time of repeated assessments. Age is the most common trigger for transition when one is identified, and this trigger allows anticipation by patients, families, and providers. Clearly, unexpected social upheavals, such as the loss of a patient’s parent, are good reasons to temporarily postpone transfer. Ideally, a patient should be medically stable at the time of transfer. However, an individual situation needs to be considered before transfer is postponed for medical reasons. If a patient needs surgery, it may be reasonable to use the adult surgeon who would be following him/her for the next few decades. Similarly, if a patient needs to switch medication, it might be the time to transfer because the new adult physician might have different preferences for treatment options. The patient and providers can have a discussion regarding the benefits and drawbacks of proceeding or postponing transfer.
Continuing Care After Transition The first visit to the adult provider should not be considered as the end of transition. The UNC transition program even labels
Inflamm Bowel Dis Volume 20, Number 8, August 2014
the first few visits with the adult provider as phase 3 of transition.30 During this time, the adult provider is slowly building rapport and trust with the emerging adult patient and visits may take longer because differences in style, focus, and even actual treatment protocols may need to be explained. Both pediatric and adult providers should be alert to the frequent attempts by patients to return to pediatric care, and neither side should take this personally but should gently encourage patients to return to ageappropriate adult care. The time after transfer can also be important for communication between providers. The majority of adult providers report inadequate or missing medical information from the pediatric providers,4 which can occur for a variety of reasons. Feedback from the adult provider to the pediatric provider can confirm that a patient did attend the visit, can outline which information is missing, and can alert the pediatric provider to fill in missing psychosocial information by phone.
CONCLUSIONS Although transition of the adolescent or young adult can be a protracted40 and challenging process with appropriate planning, preparation, and communication between pediatric and adult care teams, successful transfer to the adult health care system can be achieved resulting in the rewarding culmination of patients managing their disease with autonomy and responsibility.
REFERENCES 1. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 pt 2): 1304–1306. 2. Blum RW, Garell D, Hodgman CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14:570–576. 3. Baldassano R, Ferry G, Griffiths A, et al. 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;34:245–248. 4. 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;48:61–65. 5. Sebastian S, Jenkins H, McCartney S, et al. The requirements and barriers to successful transition of adolescents with inflammatory bowel disease: differing perceptions from a survey of adult and paediatric gastroenterologists. J Crohns Colitis. 2012;6:830–844. 6. Benchimol EI, Fortinsky KJ, Gozdyra P, et al. Epidemiology of pediatric inflammatory bowel disease: a systematic review of international trends. Inflamm Bowel Dis. 2011;17:423–439. 7. Louis E. Epidemiology of the transition from early to late Crohn’s disease. Dig Dis. 2012;30:376–379. 8. Adamiak T, Walkiewicz-Jedrzejczak D, Fish D, et al. Incidence, clinical characteristics, and natural history of pediatric IBD in Wisconsin: a populationbased epidemiological study. Inflamm Bowel Dis. 2013;19:1218–1223. 9. Available at: http://www.healthychildren.org/English/health-issues/conditions/ chronic/pages/Common-Coping-Styles-of-Teens-Who-Are-Chronically-Ill-orDisabled.aspx. Accessed January 13, 2014. 10. Hait E, Arnold JH, Fishman LN. Educate, communicate, anticipate— practical recommendations for transitioning adolescents with IBD to adult health care. Inflamm Bowel Dis. 2006;12:70–73.
Transition of IBD Patient from Pediatric to Adult Care
11. Pinzon JL, Jacobson K, Reiss J. Say goodbye and say hello: the transition from pediatric to adult gastroenterology. Can J Gastroenterol. 2004;18:735–742. 12. Fernandes S, Fishman LN, O’Sullivan-Oliviera J, et al. Current practices for the transition and transfer of patients with a wide spectrum of pediatric-onset chronic diseases: Results of a clinician survey at a free-standing pediatric hospital. Int J Child Adol Health. 2010;3:507–517. 13. 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:e375–e385. 14. Schultz RJ. Parental experiences transitioning their adolescent with epilepsy and cognitive impairments to adult health care. J Pediatr Health Care. 2013;27:359–366. 15. 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;17:1131–1137. 16. Lugasi T, Achille M, Stevenson M. Patients’ perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. J Adolesc Health. 2011;48:429–440. 17. Leung Y, Heyman MB, Mahadevan U. Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist. Inflamm Bowel Dis. 2011;17:2169–2173. 18. Eaden JA, Abrams K, Mayberry JF. The Crohn’s and Colitis Knowledge Score: a test for measuring patient knowledge in inflammatory bowel disease. Am J Gastroenterol. 1999;94:3560–3566. 19. Wardle RA, Mayberry JF. Patient knowledge in inflammatory bowel disease: the Crohn’s and Colitis Knowledge Score. Eur J Gastroenterol Hepatol. 2014;26:1–5. 20. van Groningen J, Ziniel S, Arnold J, et al. When independent healthcare behaviors develop in adolescents with inflammatory bowel disease. Inflamm Bowel Dis. 2012;18:2310–2314. 21. Fishman LN, Barendse RM, Hait E, 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;49:1129–1133. 22. Lopez A, Billioud V, Peyrin-Biroulet C, et al. Adherence to anti-TNF therapy in inflammatory bowel diseases: a systematic review. Inflamm Bowel Dis. 2013;19:1528–1533. 23. LeLeiko NS, Lobato D, Hagin S, et al. 6-Thioguanine levels in pediatric IBD patients: adherence is more important than dose. Inflamm Bowel Dis. 2013;19:2652–2658. 24. Mitra D, Hodgkins P, Yen L, et al. Association between oral 5-ASA adherence and health care utilization and costs among patients with active ulcerative colitis. BMC Gastroenterol. 2012;12:132. 25. Watson AR, Harden P, Ferris M. Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA). Pediatr Nephrol. 2011;26:1753–1757. 26. Hilliard ME, Perlus JG, Clark LM, et al. Perspectives from before and after the pediatric to adult care transition: a mixed-methods study in type 1 diabetes. Diabetes Care. 2014;37:346–354. 27. Huang JS, Tobin A, Tompane T. Clinicians Poorly Assess Health Literacy– Related Readiness for Transition to Adult Care in Adolescents With Inflammatory Bowel Disease. Clin Gastroenterol Hepatol. 2012;10: 626–632. 28. Hummel TZ, Tak E, Maurice-Stam H, et al. Psychosocial developmental trajectory of adolescents with inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2013;57:219–224. 29. Van Walleghem N, Macdonald CA, Dean HJ. Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care. 2008;31:1529–1530. 30. Ferris ME, Harward DH, Bickford K, et al. A clinical tool to measure the components of health-care transition from pediatric care to adult care: the UNC TRxANSITION scale. Ren Fail. 2012;34:744–753. 31. Sawicki GS, Lukens-Bull K, Yin X, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ—Transition Readiness Assessment Questionnaire. J Pediatr Psychol. 2011;36:160–171. 32. Schwartz LA, Tuchman LK, Hobbie WL, et al. A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev. 2011;37: 883–895. www.ibdjournal.org |
1463
de Silva and Fishman
33. Fishman LN, Houtman D, van Groningen J, et al. Medication knowledge: an initial step in self-management for youth with inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2011;53:641–645. 34. Webb N, Harden P, Lewis C, et al. Building consensus on transition of transplant patients from pediatric to adult healthcare. Arch Dis Child. 2010;95:606–611. 35. Crowley R, Wolfe I, Lock K, et al. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96:548–553. 36. Goodhand J, Dawson R, Hefferon M, et al. Inflammatory bowel disease in young people: the case for transitional clinics. Inflamm Bowel Dis. 2010; 16:947–952.
1464
| www.ibdjournal.org
Inflamm Bowel Dis Volume 20, Number 8, August 2014
37. Shanske S, Arnold J, Carvalho M, et al. Transition of patients with inflammatory bowel disease from pediatric to adult care. Gastroenterol Clin Biol. 2008;32(5 pt 1):451–459. 38. Goodhand J, Hedin CR, Croft NM, et al. Adolescents with IBD: the importance of structured transition care. J Crohns Colitis. 2011;5: 509–519. 39. Transition in IBD. Guidance for Health Professionals. Available at: http://www.ibdtransition.org.uk/downloads/IBD_Transition_Guide_Health_ Professionals.pdf. Accessed February 1, 2014. 40. Kim SC, Ferry GD. Inflammatory bowel diseases in pediatric and adolescent patients: clinical, therapeutic, and psychosocial considerations. Gastroenterology. 2004;126:1550–1560.
Transition of the Patient with IBD from Pediatric to Adult Care—An Assessment of Current Evidence Punyanganie S. A. de Silva, MBBS, MRCP* ,‡ and Laurie N. Fishman, MD†,‡
Abstract: Inflammatory bowel disease is a chronic disease of remitting and relapsing nature that is increasingly diagnosed in childhood or adolescence. The importance of the transition from pediatric to adult health care is increasingly recognized, yet the preparation of patient and family before transfer and early subsequent care in the adult health care environment can be variable and challenging. Pediatric providers need to start early and prepare patients in a stepwise fashion. However, patients may not have mastered all the steps before transfer or may regress to earlier behaviors during stress. Thus, adult providers will need to understand how to maintain and finish the transition process. This is an updated literature review of the transition process in inflammatory bowel disease, which focuses on the practical ways that both pediatric and adult health care providers can optimize care. (Inflamm Bowel Dis 2014;20:1458–1464) Key Words: inflammatory bowel disease, transition, transfer, adolescent, pediatric, adult
I
nflammatory bowel disease (IBD) is a chronic disease that is increasingly diagnosed in childhood or adolescence. As patients mature to adulthood, they need uninterrupted care. It is therefore imperative that a seamless passage occurs from pediatric- to adultcentered health care. Transition is an important concept in ensuring optimal health care management of adolescent and young adult patients. It is a patient-centered process that seeks to maximize lifelong functioning and potential through the provision of highquality, developmentally appropriate health care services that continue uninterrupted as the individual moves from adolescence to adulthood.1 Most of the major pediatric medical societies have issued consensus statements, starting in 2002, reaffirming the importance of supporting and facilitating the transition of adolescents with special health care needs into adulthood.1 There are common misconceptions of what constitutes transition. Transfer only refers to the actual move from pediatric to adult health care provider, usually culminating with the first visit in the adult health care environment with an adult-oriented physician. In contrast, transition is a lengthy process of preparing the adolescent for a life as an adult and receiving care from adult health care providers. Participation of parent and pediatric provider are essential to help the patient develop the requisite skills and abilities. Transition even extends to the adult health care Received for publication February 27, 2014; Accepted March 13, 2014. From the *Division of Gastroenterology, Hepatology and Endoscopy, Brigham and Women’s Hospital, Boston, Massachusetts; †Division of Pediatric Gastroenterology, Boston Children’s Hospital, Boston, Massachusetts; and ‡Harvard Medical School, Boston, Massachusetts. The authors have no conflicts of interest to disclose. Reprints: Punyanganie S. A. de Silva, MBBS, MRCP, Division of Gastroenterology, Hepatology and Endoscopy, Brigham and Women’s Hospital, 75 Francis Street, Boston, MA 02115 (e-mail: [email protected]). Copyright © 2014 Crohn’s & Colitis Foundation of America, Inc. DOI 10.1097/MIB.0000000000000045 Published online 19 May 2014.
1458
| www.ibdjournal.org
provider and affiliated health care team, who need to take into account various physical, medical, developmental, social, and emotional needs of these patients and their families, in a manner that is different than for established adult patients. Pediatric gastroenterologists have often emphasized the transition process in their clinical practice.2,3 In adult practice, attitudes can vary with some gastroenterologists assuming that once patients are transferred, they must be fully ready to integrate into adult health care and society, and other providers recognizing that there are still some overlaps in readiness.4,5 Transition takes different paths in various countries. For example, in Canada and Europe, mandatory transfer typically occurs by age 18, whereas in the United States, young adults may stay on parental insurance until age 26, thereby blurring a sense of autonomy. In the past, transition discussions focused exclusively on pediatric providers preparing the patient to deal with a new adult environment and culture. However, it seems to be increasingly evident that there should also be a shift in adult gastroenterology practice to accommodate the distinct needs of transitioning patients. The essentials of transition are similar for all conditions, but each condition has distinct aspects as well. In some conditions such as diabetes, the pediatric and adult forms of the disease and subsequent management may be quite similar, whereas congenital diseases, such as cystic fibrosis or sickle cell disease, are often unfamiliar to adult providers. However, for IBD, the differences between the pediatric onset and adult onset forms may be less obvious to providers. The incidence of IBD in children is increasing6 with very early onset disease being more frequently recognized. Children with IBD often have more aggressive and extensive disease. Additionally, because children develop the disease early, they often have increased risk of complications by the time they transfer to adult care. The risk of developing complications over time, particularly in Crohn’s disease remains variable and complex; but many cohort and population-based studies have Inflamm Bowel Dis Volume 20, Number 8, August 2014
Inflamm Bowel Dis Volume 20, Number 8, August 2014
highlighted that at diagnosis, between 19% and 38% of all patients with Crohn’s disease have complicated disease. After 10 years, 56% to 65% of patients have developed either stricturing or penetrating complications, and after 20 years, these numbers range from 61% to 88%.7 Therefore, the adult gastroenterologist should recognize that pediatric onset patients comprise a sicker patient cohort with a longer, more complex history of IBD and related medication use. The more aggressive nature of pediatric disease also increases the risk of relapse or surgery.8 It has been noted that after surgery or relapse, there can be a regression to younger behavior on the part of even well-adjusted patients,9 which in turn can pose unfamiliar challenges to the adult medical team.
Attitudes About Transition The transitioning patient may be taken aback by the shift in culture in the adult provider environment. The adult style practice emphasizes autonomy and respect centered on the individual, whereas pediatric style practice favors nurturance, with possible paternalism, and centers on the family. The transitioning patient also faces challenges in understanding the different medical focus between pediatric and adult gastroenterologists, with pediatric care focused on growth and development and adult care directed toward cancer surveillance, sexual function, fertility, and pregnancy. Misinterpretation of these differences can lead to issues with noncompliance, poor office visit attendance, and subsequent flares in disease activity once the patient has transferred to adult care.10,11 Furthermore, many patients are very close to their pediatric provider and may feel a tremendous loyalty to this person. If the pediatric provider does recommend transfer, the patient may feel a sense of abandonment; however, the patient may feel uncertain about transfer if the provider does not wholeheartedly endorse graduating to adult care. The onus for a successful transition does not only lie with the patient but also with the providers. Often it goes unrecognized that the 2 specialties have radically different cultures. Pediatric providers may judge the adult providers by the pediatric standards of nurturance or family centered care and find them cold or uncaring. Adult providers may judge pediatric providers by adult standards of autonomy and respect and find them paternalistic or meddling. The unconscious signals from each provider add tension to the transitioning patient who is already struggling to reconcile all the changes. Provider feelings about the patient can also play a role. Although it has been demonstrated that pediatric clinicians identify patient and parental emotional attachment to the provider as an important barrier to transition, they are less cognizant of their own attachment to the patient as a barrier to transition.12 It is important that all patients eventually become comfortable seeing the provider without their parents. Gradual stepwise preparation for this must therefore be initiated by the pediatric gastroenterologist so that both patient and parent are comfortable with this when transfer to adult care occurs. Although many adolescents with chronic disease report that their parents’ support and involvement were important components of a successful
Transition of IBD Patient from Pediatric to Adult Care
transition, it can be difficult to discuss sexuality, alcohol, or drugs in front of parents. Adolescents may hold back unreported symptoms to avoid recrimination for not reporting sooner or leave-off concerning symptoms to avoid scaring parents. Seeing the provider alone may also help create a clearer picture of the adolescent’s transition readiness because parents are often guilty of overestimating their child’s capabilities. A recent study demonstrated that, in comparison with patient’s self-assessment, parents thought that their child was more self-efficacious in knowledge of IBD and diagnostic tests, self-management of medication use, and transfer readiness.13 However, parents may struggle with this reduced role in their child’s medical care. Studies in other chronic diseases have demonstrated that parents experience turmoil because they faced the prospect of their child transitioning.14 It can be important for the adult provider to be open to seeing the patient with their parent during the initial sessions if requested. This may have beneficial consequences such as increased rapport with patient and better understanding of the patient’s social support network, which are all contributing factors in the optimization of health care. However, spending at least some time alone with the provider does boost the patient’s independence and privacy along with encouraging improved communication and self-advocacy. It also may facilitate the parent’s recognition of the maturing capabilities of the emerging adult patient to handle self-management.
Continuity of Care To facilitate a successful transition from pediatric to adult care, it is necessary for a large amount of medical information to be communicated, including presentation of disease, previous medication failure, allergies, typical flare symptoms, laboratory value trends, location, and duration of disease. Ideally, the pediatric provider knows which adult provider will see the patient and when this visit will occur. The patient and family should be aware that communication will occur between providers to help ensure continuity of care. Thus, patients should be encouraged to choose the next provider, often with help from the pediatric provider, and communicate when the first visit will take place. To help facilitate a smooth transfer, pediatric providers can remind patients to sign releases for medical information and provide a form or letter summarizing medical history and possibly even call the new adult provider to convey sensitive information. When patients are moving far away, have an emergent problem or have not yet obtained health insurance, it can be difficult to know which adult provider will be available. Patients may then be responsible for providing information about their own medical course until records can be obtained. An organized transition program should therefore incorporate an age-appropriate educational component to address deficits in adolescent patients’ knowledge. If the patient’s course is straight forward, it may be reasonable to have patients learn and recite their own history. If it is complex, a written record that they can carry with them is more important, such as MyHealth Passport for IBD.15 www.ibdjournal.org |
1459
de Silva and Fishman
Skills Needed for a Successful Transition There is not a universal list of skills required to graduate into the world of adult health care. Each discipline and medical center describes the skills differently and organizes the list in a disparate manner. However, many transition programs highlight knowledge, self-efficacy, decision making and problem solving, self-advocacy, and information gathering as key skills that are needed to be developed during the transition process for the patient to be “transfer ready.”1 These categories of skills are also important for the adolescent patient with IBD to thrive in the adult world. Acquisition of these skills is not limited to a single encounter but rather should be a stepwise program with age-appropriate checklists of tasks for the patient and for the medical team10,11,16,17 (Table 1). These tasks should be introduced early during pediatric care, typically aged 11 or 12 years, and paced according to individual response. The goal of this stepwise approach is to have patients practice and master the steps leading to full responsibility and independent self-management behaviors that are associated with ideal adult practice by the time they are ready to transfer to adult health care.
Knowledge Young patients have been characterized as lacking basic knowledge about their own medical conditions and treatments. Expected knowledge for a patient would include basic medical history and the nature of the condition, the names and doses of medications, allergies, names of the medical team, and how to contact the team. Yet, a study from Toronto demonstrated that only 22% of adolescent patients could recall the location of their disease and only 55% could recall when they were diagnosed.15 More than 55% of respondents from a national survey of adult gastroenterologists found that patients with IBD transitioning from pediatric care had inadequate knowledge of their own disease.4 Unfortunately, adult patients also have imperfect knowledge of their condition. Using the validated Crohn’s and colitis knowledge score18 on a cohort of adult patients, only 21% to 23% knew that IBD ran in families, 26% to 46% knew that IBD can affect other parts of the body besides intestines, and 18% to 29% knew they were at increased risk for colon cancer. Only 68% to 74% were aware that they still would have the disease if symptom free for 3 years.19 A recent review did not find adult patients more knowledgeable than a decade ago.19 Patient education is an area that needs attention in both adult and pediatric practice.
Inflamm Bowel Dis Volume 20, Number 8, August 2014
and then timing of medication, or first just calling in refills, and then picking up the medicines at the pharmacy. Allowing repeated opportunities for success can help patients build confidence in their own ability to handle health-related tasks. Young patients need gradual transition from having parents assuming all responsibility for health behaviors, to combined responsibility, to then taking over the entirety of self-management. It seems that patients are taking over these healthpromoting tasks very late from parents.20 In one study looking at the development of independent behaviors, less than 20% of adolescents aged 16 to 18 years order medication refills, 35% of those aged 19 to 21 years schedule clinic visits, and 30% of those aged 19 to 21 years contact the provider between visits if there is a problem.21 Medication adherence is another sign of successful selfefficacy. However, adolescents may have other developmental reasons for poor adherence such as denial, sense of invincibility, risk-taking, desire to emulate peers, and poor planning. Additionally, adherence seems to vary with disease severity. Individual studies have demonstrated that 75% of adults on biologics were adherent,22 74% of adolescents on thiopurines were adherent23 but only one quarter of adults with ulcerative colitis were adherent with 5-aminosalicylates medication.24 Although adolescents are notorious for overall poor adherence, there is evidence from other fields that transfer to adult health care caused significantly poorer outcome25,26 indicating that the change in provider and setting may be an independent risk factor for some patients.
Information Gathering Between 20% and 25% of adult gastroenterologists in the United States and the Netherlands, respectively, consider it important for patients to be able to research their condition outside of the medical visit.4 One study shows that 62% of older adolescents use the Internet to obtain information, although parents and their doctor are also being the important sources of information.21 However, health literacy is an important prerequisite for researching one’s condition or symptoms and is often just assumed to be present. Huang et al demonstrated reduced literacy readiness for transition among younger youth, nonwhites, and those of nondisadvantaged socioeconomic status when compared with their counterparts.27 Health literacy has not been well explored in nonnative English speakers with IBD.
Self-advocacy and Decision-making Ability Self-efficacy and Self-management Self-management includes making informed and healthy choices regarding diet and lifestyle, monitoring symptoms, managing treatment, and working in partnership with providers. Patients are more likely to be successful when they have increased self-efficacy, which is the belief in one’s own ability to complete specific tasks and reach goals. To encourage mastery and selfefficacy, substantial areas of self-management can be broken down into smaller tasks. For example, managing one’s medications can first be discussed in terms of remembering name and then dose
1460
| www.ibdjournal.org
In an adult environment, patients are expected to be able to effectively communicate, negotiate, and assert their interests. Maturity and experience play a large role in the development of these skills. Because many young patients are smart and articulate, the delays in psychosocial development required for self-advocacy may not be recognized. It may surprise many clinicians to learn that young adults with IBD are often delayed in the attainment of life milestones such as holidays without adults, jobs during secondary school and beyond, and falling in love for the first time.28 Both adult and pediatric physicians should be
Inflamm Bowel Dis Volume 20, Number 8, August 2014
Transition of IBD Patient from Pediatric to Adult Care
TABLE 1. A Timeline for IBD Transition with Checklists of Tasks that the Transitioning Patient Should be Competent with Before Attending Adult Clinics Age
Patient
Medical Team
11–13
Able to articulate his or her GI condition Able to name medications, doses, side effects Knows strategies to take his or her medication Able to use and read a thermometer Articulates impact of IBD on school and daily life
Introduces idea of future independent visits Asks parents to remain in waiting room for a portion of the visit Anticipatory guidance about fitness, sexuality and substance abuse
14–16
Able to identify medical team Knows names and purposes of procedures and tests done on him or her Knows his or her medical history Knows names of IBD social support groups and community organizations Understands the medical risk of nonadherence Understands the impact of drugs and alcohol on the illness
Directs all questions and explanations to patient Patient asked for input first Explores family’s apprehension about patient taking on primary role Clarifies to patient what must legally be disclosed to parents Determines when the patient wants his or her parents in and out of the room Initiates discussion about eventual transfer of care Determines post high school plans (social, employment, education) Instructs patient how to access medical records Instructs patient to keep names of medications/dosages and medical team in wallet/purse/backpack Instructs patient on how to get prescriptions filled and how to call and schedule appointments
17–19
Knows how to gather information about IBD Demonstrates consistent ability to book own appointments, fill prescriptions, contact medical team Able to name his or her insurance coverage and plans for next 2 years of coverage Carries insurance information in wallet/purse/backpack
Initiates conversation about potential barriers to transition Identifies potential adult GI providers Encourages patient to meet and interview providers Reminds patient and family that at age 18 years, the patient has the right to make his or her own health choices
20–23
Has had a telephone conversation with potential adult GI providers Initial visit with adult GI provider is scheduled while IBD is stable
Provides patient with medical summary and checklist Transfers medical records to adult providers
GI, gastrointestinal. Checklist of tasks for the patient and the medical team based on chronological age. Adapted with permission from Hait E, Arnold JH, Fishman LN. Educate, communicate, anticipate–practical recommendations for transitioning adolescents with IBD to adult health care. Inflamm Bowel Dis. 2006;12:70–73. Copyright 2006 Crohn’s & Colitis Foundation of America, Inc.
attentive to the consequences of these delays and provide additional support if necessary. During transition to adult clinics, these topics should be an integral component of the comprehensive care of chronically ill adolescents and young adults.
Assessment of Transfer Readiness Transfer readiness occurs when patients have the comfort, confidence, and competency to understand their medical condition, follow self-management strategies, and communicate independently with the provider. It can be assessed by the patient, the pediatric providers, or, occasionally, the parents. Clinicians may assume their overall sense of whether a patient who is ready can count as an assessment. For example, at 1 institution, more than 90% of clinicians reported routinely doing informal assessment
and transition counseling with adolescent patients.12 But assessment of true readiness is difficult to measure. Although no universal instrument or transition scale has emerged, there are multiple tools that have been developed.29,30 Some like the TRAQ readiness questionnaire,31 SMART,32 and the UNC transition scale30 can be used for all conditions. Others, like the MyHealth Passport13,15 and the checklist by Fishman,33 are specific to IBD. Most instruments have a core of key competencies that are ideally mastered by patients before transfer to an adult health care practice (Table 2).
Models of Transition There is no universally established model for transition in IBD.32 Models that are used include joint adult and pediatric clinics, www.ibdjournal.org |
1461
de Silva and Fishman
TABLE 2. Examples of Competencies that Should Be Achieved by a Patient Transitioning from Pediatric to Adult IBD Care Skills
Knowledge
I understand my condition and can describe it to others I can make decisions for myself about my treatment I know how to make my appointments I can make my own transport arrangements to get to the hospital for appointments I know who to call in a medical emergency I am able to talk about my worries concerning blood tests and other treatments I can refill my own prescriptions I can navigate the phone system when calling for medical needs or appointments I know my medications and what each is for and the associated side effects I know what the adult clinic arrangements are and who will be reviewing managing my care in clinic I know the dietary advice that I have to follow and the importance of physical activity I have appropriate knowledge about sexual health matters I have discussed alcohol, smoking, and drug issues
alternating visits, advance tours of the adult facilities, coordinatorinitiated transition, preparation of patient using the assessment tools in pediatric clinics, and common transition clinics for patients with a variety of chronic diseases. Joint medical visits have been demonstrated to enable successful, well-coordinated transition to adult medical-care follow-up.34,35 Infrastructure for this is variable however and greatly depends on patient circumstance. However, virtual joint visits may potentially be an option in the future, particularly for complex cases. Many specialties also recommend a specifically designated transfer clinic in either the adult or pediatric clinic.36
TABLE 3. Key Elements that Should Be Included or Considered in All Transition Protocols A dedicated health care professional (usually the pediatric GI physician) should assume the responsibility for health care planning Core knowledge and skills required to provide transition services should be identified An up-to-date medical summary (i.e., portable and accessible) should be created. There should be a structured hand over letter from pediatric to adult services detailing date of diagnosis, site and severity of disease, results of investigations, prior surgical and medication history along with a named contact in the team from which the young person is transferring A written health care transition plan should be created The patient should have affordable, continuous health insurance coverage
1462
| www.ibdjournal.org
Inflamm Bowel Dis Volume 20, Number 8, August 2014
At present, there have been no head-to-head trials of these different models to determine which is the most appropriate trial. Rather than a universal model, each institution or practice will need to adapt a model that is most efficient, given the geographical location, available resources, patient cohort, and existing services within both the local pediatric and adult care teams (Table 3). Given the challenges faced by many patients with IBD, proactive involvement of a social worker can be extremely helpful in facilitating a seamless transition and better patient compliance.37
Timing of Transition The start of discussion of transition planning is ideally between 11 and 14 years. This timing is well accepted by a wide variety of populations and specialties. However, there is a wide range for the end of transition, with transfer occurring between 16 and 25 years or older. Transfer can be bound by external constraints such as national insurance and geographic norms. In Canada and the United Kingdom, there is nearly universal transfer by age 18 years.3,38,39 Specialty organizations, such as the Cystic Fibrosis Foundation, may exert strong encouragement through accreditation standards for centers to transfer patients around age 18 years. Individual institutions may set age limits for hospitalization or surgical care. However, for many providers and patients, there are fewer clear guidelines. Providers are divided as to whether age cutoffs (such as 18 or 21 years) are preferable to milestones such as graduation or marriage.12 The wide disparity among providers for triggers to transfer might prove problematic. For example, at 1 U.S. institution, only 52% of providers felt pregnancy was a trigger, 55% named graduation from high school, 52% named marriage, and 79% named adult comorbidities.12 A study from the United Kingdom found that 42% of adult gastroenterologists but only 29% of pediatric gastroenterologists felt that leaving school was a trigger for transfer.5 Using transition readiness as a yardstick for prompting transfer is considered ideal by some providers but may add the expense and time of repeated assessments. Age is the most common trigger for transition when one is identified, and this trigger allows anticipation by patients, families, and providers. Clearly, unexpected social upheavals, such as the loss of a patient’s parent, are good reasons to temporarily postpone transfer. Ideally, a patient should be medically stable at the time of transfer. However, an individual situation needs to be considered before transfer is postponed for medical reasons. If a patient needs surgery, it may be reasonable to use the adult surgeon who would be following him/her for the next few decades. Similarly, if a patient needs to switch medication, it might be the time to transfer because the new adult physician might have different preferences for treatment options. The patient and providers can have a discussion regarding the benefits and drawbacks of proceeding or postponing transfer.
Continuing Care After Transition The first visit to the adult provider should not be considered as the end of transition. The UNC transition program even labels
Inflamm Bowel Dis Volume 20, Number 8, August 2014
the first few visits with the adult provider as phase 3 of transition.30 During this time, the adult provider is slowly building rapport and trust with the emerging adult patient and visits may take longer because differences in style, focus, and even actual treatment protocols may need to be explained. Both pediatric and adult providers should be alert to the frequent attempts by patients to return to pediatric care, and neither side should take this personally but should gently encourage patients to return to ageappropriate adult care. The time after transfer can also be important for communication between providers. The majority of adult providers report inadequate or missing medical information from the pediatric providers,4 which can occur for a variety of reasons. Feedback from the adult provider to the pediatric provider can confirm that a patient did attend the visit, can outline which information is missing, and can alert the pediatric provider to fill in missing psychosocial information by phone.
CONCLUSIONS Although transition of the adolescent or young adult can be a protracted40 and challenging process with appropriate planning, preparation, and communication between pediatric and adult care teams, successful transfer to the adult health care system can be achieved resulting in the rewarding culmination of patients managing their disease with autonomy and responsibility.
REFERENCES 1. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 pt 2): 1304–1306. 2. Blum RW, Garell D, Hodgman CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14:570–576. 3. Baldassano R, Ferry G, Griffiths A, et al. 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;34:245–248. 4. 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;48:61–65. 5. Sebastian S, Jenkins H, McCartney S, et al. The requirements and barriers to successful transition of adolescents with inflammatory bowel disease: differing perceptions from a survey of adult and paediatric gastroenterologists. J Crohns Colitis. 2012;6:830–844. 6. Benchimol EI, Fortinsky KJ, Gozdyra P, et al. Epidemiology of pediatric inflammatory bowel disease: a systematic review of international trends. Inflamm Bowel Dis. 2011;17:423–439. 7. Louis E. Epidemiology of the transition from early to late Crohn’s disease. Dig Dis. 2012;30:376–379. 8. Adamiak T, Walkiewicz-Jedrzejczak D, Fish D, et al. Incidence, clinical characteristics, and natural history of pediatric IBD in Wisconsin: a populationbased epidemiological study. Inflamm Bowel Dis. 2013;19:1218–1223. 9. Available at: http://www.healthychildren.org/English/health-issues/conditions/ chronic/pages/Common-Coping-Styles-of-Teens-Who-Are-Chronically-Ill-orDisabled.aspx. Accessed January 13, 2014. 10. Hait E, Arnold JH, Fishman LN. Educate, communicate, anticipate— practical recommendations for transitioning adolescents with IBD to adult health care. Inflamm Bowel Dis. 2006;12:70–73.
Transition of IBD Patient from Pediatric to Adult Care
11. Pinzon JL, Jacobson K, Reiss J. Say goodbye and say hello: the transition from pediatric to adult gastroenterology. Can J Gastroenterol. 2004;18:735–742. 12. Fernandes S, Fishman LN, O’Sullivan-Oliviera J, et al. Current practices for the transition and transfer of patients with a wide spectrum of pediatric-onset chronic diseases: Results of a clinician survey at a free-standing pediatric hospital. Int J Child Adol Health. 2010;3:507–517. 13. 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:e375–e385. 14. Schultz RJ. Parental experiences transitioning their adolescent with epilepsy and cognitive impairments to adult health care. J Pediatr Health Care. 2013;27:359–366. 15. 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;17:1131–1137. 16. Lugasi T, Achille M, Stevenson M. Patients’ perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. J Adolesc Health. 2011;48:429–440. 17. Leung Y, Heyman MB, Mahadevan U. Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist. Inflamm Bowel Dis. 2011;17:2169–2173. 18. Eaden JA, Abrams K, Mayberry JF. The Crohn’s and Colitis Knowledge Score: a test for measuring patient knowledge in inflammatory bowel disease. Am J Gastroenterol. 1999;94:3560–3566. 19. Wardle RA, Mayberry JF. Patient knowledge in inflammatory bowel disease: the Crohn’s and Colitis Knowledge Score. Eur J Gastroenterol Hepatol. 2014;26:1–5. 20. van Groningen J, Ziniel S, Arnold J, et al. When independent healthcare behaviors develop in adolescents with inflammatory bowel disease. Inflamm Bowel Dis. 2012;18:2310–2314. 21. Fishman LN, Barendse RM, Hait E, 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;49:1129–1133. 22. Lopez A, Billioud V, Peyrin-Biroulet C, et al. Adherence to anti-TNF therapy in inflammatory bowel diseases: a systematic review. Inflamm Bowel Dis. 2013;19:1528–1533. 23. LeLeiko NS, Lobato D, Hagin S, et al. 6-Thioguanine levels in pediatric IBD patients: adherence is more important than dose. Inflamm Bowel Dis. 2013;19:2652–2658. 24. Mitra D, Hodgkins P, Yen L, et al. Association between oral 5-ASA adherence and health care utilization and costs among patients with active ulcerative colitis. BMC Gastroenterol. 2012;12:132. 25. Watson AR, Harden P, Ferris M. Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA). Pediatr Nephrol. 2011;26:1753–1757. 26. Hilliard ME, Perlus JG, Clark LM, et al. Perspectives from before and after the pediatric to adult care transition: a mixed-methods study in type 1 diabetes. Diabetes Care. 2014;37:346–354. 27. Huang JS, Tobin A, Tompane T. Clinicians Poorly Assess Health Literacy– Related Readiness for Transition to Adult Care in Adolescents With Inflammatory Bowel Disease. Clin Gastroenterol Hepatol. 2012;10: 626–632. 28. Hummel TZ, Tak E, Maurice-Stam H, et al. Psychosocial developmental trajectory of adolescents with inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2013;57:219–224. 29. Van Walleghem N, Macdonald CA, Dean HJ. Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care. 2008;31:1529–1530. 30. Ferris ME, Harward DH, Bickford K, et al. A clinical tool to measure the components of health-care transition from pediatric care to adult care: the UNC TRxANSITION scale. Ren Fail. 2012;34:744–753. 31. Sawicki GS, Lukens-Bull K, Yin X, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ—Transition Readiness Assessment Questionnaire. J Pediatr Psychol. 2011;36:160–171. 32. Schwartz LA, Tuchman LK, Hobbie WL, et al. A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev. 2011;37: 883–895. www.ibdjournal.org |
1463
de Silva and Fishman
33. Fishman LN, Houtman D, van Groningen J, et al. Medication knowledge: an initial step in self-management for youth with inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2011;53:641–645. 34. Webb N, Harden P, Lewis C, et al. Building consensus on transition of transplant patients from pediatric to adult healthcare. Arch Dis Child. 2010;95:606–611. 35. Crowley R, Wolfe I, Lock K, et al. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96:548–553. 36. Goodhand J, Dawson R, Hefferon M, et al. Inflammatory bowel disease in young people: the case for transitional clinics. Inflamm Bowel Dis. 2010; 16:947–952.
1464
| www.ibdjournal.org
Inflamm Bowel Dis Volume 20, Number 8, August 2014
37. Shanske S, Arnold J, Carvalho M, et al. Transition of patients with inflammatory bowel disease from pediatric to adult care. Gastroenterol Clin Biol. 2008;32(5 pt 1):451–459. 38. Goodhand J, Hedin CR, Croft NM, et al. Adolescents with IBD: the importance of structured transition care. J Crohns Colitis. 2011;5: 509–519. 39. Transition in IBD. Guidance for Health Professionals. Available at: http://www.ibdtransition.org.uk/downloads/IBD_Transition_Guide_Health_ Professionals.pdf. Accessed February 1, 2014. 40. Kim SC, Ferry GD. Inflammatory bowel diseases in pediatric and adolescent patients: clinical, therapeutic, and psychosocial considerations. Gastroenterology. 2004;126:1550–1560.
