Transition is the long process of developing independent self-management skills whereas transfer is the actual move from pediatric to adult-centered provider. Structured anticipated transition works best with timelines of tasks to master and discussion of the stylistic differences between pediatric and adult practices. Disease-specific issues need to be addressed, such as earlier timelines for diet-based therapies, parental support for critical illnesses, and differences in therapeutic strategies.
Key points
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Transition is the long process of developing independent self-management skills whereas transfer is the actual move from pediatric to adult-centered provider.
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Structured anticipated transition works best with timelines of tasks to master and discussion of the stylistic differences between pediatric and adult practices.
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Disease-specific issues need to be addressed, such as earlier timelines for diet-based therapies, parental support for critical illnesses, and differences in therapeutic strategies.
Introduction
Transition vs Transfer
Transition has increasingly been recognized as an important concept. As adolescents with chronic gastrointestinal (GI) illnesses mature to adulthood, it is crucial that their clinical care remains uninterrupted. The goal of transition is to ensure that adolescents and young adults receive optimal health care management as they transition from pediatric to adult-centered health care. Transition is a patient-centered process that seeks to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as an individual moves from adolescence to adulthood.
Unlike transfer, which refers to the actual move from a pediatric to an adult health care provider, transition is a lengthy process of preparing adolescents for a life as an adult and receiving care from adult health care providers. As with other specialties, the ongoing support of the pediatric provider and the active participation of the parent remain integral factors that help ensure that the transitioning patient develops the skills and confidence needed to deal with a chronic illness in adulthood. In addition, the adult health care provider and affiliated health care team 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.
Although transition used to predominantly be a pediatric concern, now more and more adult gastroenterologists acknowledge the importance of a seamless transition and are aware that the transition process may be a lengthy one. The age of transition in GI disease continues to vary according to geography and culture, ranging from as young as 16 in the United Kingdom and Australia to mid-20s in the United States.
Timing of Transition Preparation
It is recommended that discussion about transition start when an adolescent is 12 years to 13 years old and a transition plan developed when the child is 14 years to 15 years old, with the actual transfer taking place at 18 years of age or older. One study of young patients with inflammatory bowel disease (IBD) and their caregivers, however, found many survey respondents endorsed 16 years to 17 years as the best ages to initiate discussions about transition and 18 years or older as the best ages to transfer care. Patients need to know whether the transfer is based on age; milestones, such as marriage or graduation; or other parameters. The authors believe that reminders at every visit for the 3 to 5 visits preceding transfer help break through denial and gently establish reality.
Preparation for Differing Practice Style
An aspect of transfer that is often overlooked is the difference in style between those who provide care to children and those who care for adults. If not well prepared, a transitioning patient may be taken aback by the shift in culture across environments. 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. There is also a 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 the differences between adult care and pediatric care can sometimes lead to unhappiness by patients, families, and providers. Adult providers may think that patients are unprepared and clingy, whereas pediatric patients may view adult providers as cold or less involved. Discussion of the underlying principles can help support understanding across the transition gap ( Table 1 ).
| Practice Change | Pediatric Provider View | Adult Provider View |
|---|---|---|
| Shorter visits | Rushed | Respecting patients time |
| Sees patient alone | Ignoring family | Respecting privacy |
| More patient choice regarding treatment | Not spending enough time to have patient make “correct choice” | Allowing autonomy Empowering patient |
| Infrequent visits | Not checking in enough | Trusting patient to follow through |
Development of Self-Management
Many transition programs highlight knowledge, self-efficacy, decision making and problem solving, self-advocacy, and information gathering as key skills that need to be developed during the transition process for a patient to be transfer ready. These categories of skills are also important for adolescent patients with chronic GI conditions 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 patients as well as for the medical team. These tasks should be introduced early during pediatric care, typically age 11 or 12, 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.
Assessing Transition 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 that their overall sense of whether a patient is ready counts as an assessment. For example, at one institution, more than 90% of clinicians reported routinely doing informal assessment and transition counseling with adolescent patients. But assessment of true readiness remains difficult to measure. Although no universal instrument or transition scale has emerged, there are multiple tools that have been developed. Some, like the Transition Readiness Assessment Questionnaire (TRAQ), the social-ecological model of adolescent and young adult readiness for transition (SMART), and the University of North Carolina TRxANSITION scale, can be used for all conditions. Other tools are disease specific.
Transfer
The actual transfer process can take place in a variety of ways. In some settings, the pediatric and adult gastroenterologists see the patient at the same visit; in others, pediatric and adult gastroenterologists meet annually to discuss patients in transition. Joint transition clinics with pediatric and adult service clinicians can be established for information delivery and generating trust in the new physician. In other cases, a transition coordinator accompanies a patient from one setting to the other. One study demonstrated even a 2-day workshop to reinforce transitioning skills mastered over time improved self-efficacy, satisfaction, and transition competence. Although the relative merits of each system can be debated, the reality is often dictated by politics of health care alliances, insurance coverage, facility locations, and provider schedules. Some aspects of transfer, however, are important regardless of the settings. The transfer needs to be structured and expected. If patients graduate from a practice at widely differing ages, there can be confusion and a concern about favoritism.
- •
Timing should be discussed multiple times, with clear understanding of whether the graduation to adult care is based on age or milestone, such as graduation.
- •
Ensure medical record reaches adult provider and ideally provide summary as well.
- •
Clarify whom to call for problems or prescriptions during interval between providers.
- •
Anticipate the different practice style and expect patient is less comfortable at the first few visits with new provider.
- •
Review advantages of adult-style care now that the patient is mature (avoid criticism).
- •
Allow emotions of sadness, nostalgia, and pride in patient’s growth to be discussed.
- •
Explain how patient can communicate nonmedical updates, such as with cards or e-mails, to avoid feeling cut off abruptly from pediatric provider.
The Adult Health Care Provider Role
Adult-based health services expect that their adult patients are able to care for themselves and are capable of negotiating the hospital clinical system, yet not all pediatric patients are ready. There is a need to bridge the gap between pediatric and adult services. If the transitioning patient does not possess adequate communication skills, then initial visits in the adult clinic with a parent is acceptable. It should be made clear to the patient and parents prior to transfer, however, that this is not encouraged as a long-term practice. Although the bulk of preparation for transition to adult care lies with the pediatric provider, it is good practice for the adult provider to reiterate skills required to ensure good health maintenance and responsibility as an adult. This includes encouraging maturation of communication and decision-making skills, allowing patients to take responsibility for medical self-management, and education and counseling of the adolescent/young adult to avoid risk-taking behaviors.
The ability to maintain a good relationship with the new provider is important. Many transitioning patients and families fear that the adult provider and office will provide decreased support and availability for advice. It is, therefore, encouraged that the new adult provider be accessible and sympathetic to the patient’s requirements. Adolescents and young adults may have difficulty communicating with health providers so providers often have to be flexible and patient in their communication styles initially when working with these patients. Easy accessibility is important and many younger patients prefer e-mail or portal access as a mode of communication rather than speaking on the phone.
IBD, celiac disease, eosinophilic esophagitis (EoE), and liver transplant are diagnostic groups that have started to explore transition from pediatric to adult care. These four groups are detailed. The same disease may present differently in pediatric and adult populations, leading to misunderstanding among providers.
Introduction
Transition vs Transfer
Transition has increasingly been recognized as an important concept. As adolescents with chronic gastrointestinal (GI) illnesses mature to adulthood, it is crucial that their clinical care remains uninterrupted. The goal of transition is to ensure that adolescents and young adults receive optimal health care management as they transition from pediatric to adult-centered health care. Transition is a patient-centered process that seeks to maximize lifelong functioning and potential through the provision of high-quality, developmentally appropriate health care services that continue uninterrupted as an individual moves from adolescence to adulthood.
Unlike transfer, which refers to the actual move from a pediatric to an adult health care provider, transition is a lengthy process of preparing adolescents for a life as an adult and receiving care from adult health care providers. As with other specialties, the ongoing support of the pediatric provider and the active participation of the parent remain integral factors that help ensure that the transitioning patient develops the skills and confidence needed to deal with a chronic illness in adulthood. In addition, the adult health care provider and affiliated health care team 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.
Although transition used to predominantly be a pediatric concern, now more and more adult gastroenterologists acknowledge the importance of a seamless transition and are aware that the transition process may be a lengthy one. The age of transition in GI disease continues to vary according to geography and culture, ranging from as young as 16 in the United Kingdom and Australia to mid-20s in the United States.
Timing of Transition Preparation
It is recommended that discussion about transition start when an adolescent is 12 years to 13 years old and a transition plan developed when the child is 14 years to 15 years old, with the actual transfer taking place at 18 years of age or older. One study of young patients with inflammatory bowel disease (IBD) and their caregivers, however, found many survey respondents endorsed 16 years to 17 years as the best ages to initiate discussions about transition and 18 years or older as the best ages to transfer care. Patients need to know whether the transfer is based on age; milestones, such as marriage or graduation; or other parameters. The authors believe that reminders at every visit for the 3 to 5 visits preceding transfer help break through denial and gently establish reality.
Preparation for Differing Practice Style
An aspect of transfer that is often overlooked is the difference in style between those who provide care to children and those who care for adults. If not well prepared, a transitioning patient may be taken aback by the shift in culture across environments. 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. There is also a 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 the differences between adult care and pediatric care can sometimes lead to unhappiness by patients, families, and providers. Adult providers may think that patients are unprepared and clingy, whereas pediatric patients may view adult providers as cold or less involved. Discussion of the underlying principles can help support understanding across the transition gap ( Table 1 ).
| Practice Change | Pediatric Provider View | Adult Provider View |
|---|---|---|
| Shorter visits | Rushed | Respecting patients time |
| Sees patient alone | Ignoring family | Respecting privacy |
| More patient choice regarding treatment | Not spending enough time to have patient make “correct choice” | Allowing autonomy Empowering patient |
| Infrequent visits | Not checking in enough | Trusting patient to follow through |
Development of Self-Management
Many transition programs highlight knowledge, self-efficacy, decision making and problem solving, self-advocacy, and information gathering as key skills that need to be developed during the transition process for a patient to be transfer ready. These categories of skills are also important for adolescent patients with chronic GI conditions 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 patients as well as for the medical team. These tasks should be introduced early during pediatric care, typically age 11 or 12, 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.
Assessing Transition 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 that their overall sense of whether a patient is ready counts as an assessment. For example, at one institution, more than 90% of clinicians reported routinely doing informal assessment and transition counseling with adolescent patients. But assessment of true readiness remains difficult to measure. Although no universal instrument or transition scale has emerged, there are multiple tools that have been developed. Some, like the Transition Readiness Assessment Questionnaire (TRAQ), the social-ecological model of adolescent and young adult readiness for transition (SMART), and the University of North Carolina TRxANSITION scale, can be used for all conditions. Other tools are disease specific.
Transfer
The actual transfer process can take place in a variety of ways. In some settings, the pediatric and adult gastroenterologists see the patient at the same visit; in others, pediatric and adult gastroenterologists meet annually to discuss patients in transition. Joint transition clinics with pediatric and adult service clinicians can be established for information delivery and generating trust in the new physician. In other cases, a transition coordinator accompanies a patient from one setting to the other. One study demonstrated even a 2-day workshop to reinforce transitioning skills mastered over time improved self-efficacy, satisfaction, and transition competence. Although the relative merits of each system can be debated, the reality is often dictated by politics of health care alliances, insurance coverage, facility locations, and provider schedules. Some aspects of transfer, however, are important regardless of the settings. The transfer needs to be structured and expected. If patients graduate from a practice at widely differing ages, there can be confusion and a concern about favoritism.
- •
Timing should be discussed multiple times, with clear understanding of whether the graduation to adult care is based on age or milestone, such as graduation.
- •
Ensure medical record reaches adult provider and ideally provide summary as well.
- •
Clarify whom to call for problems or prescriptions during interval between providers.
- •
Anticipate the different practice style and expect patient is less comfortable at the first few visits with new provider.
- •
Review advantages of adult-style care now that the patient is mature (avoid criticism).
- •
Allow emotions of sadness, nostalgia, and pride in patient’s growth to be discussed.
- •
Explain how patient can communicate nonmedical updates, such as with cards or e-mails, to avoid feeling cut off abruptly from pediatric provider.
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