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


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Excerpt

Children with inflammatory bowel disease (IBD) should be cared for by a physician trained to manage issues unique to pediatric patients. Pediatric gastroenterologists have the expertise to address a multitude of important problems that occur during childhood, particularly growth and development. Internist–gastroenterologists have a different set of skills that are necessary to provide optimal care to adult patients with IBD.The passage from adolescence to adulthood is a time of internal turmoil and intense examination of personal goals and wishes. In a few short years, the growing adolescent must shed the sheltered environment of childhood and achieve self-reliance and independent living. This time of growth and change causes frustration about the present and anxiety about the future even in the healthiest of children. For chronically ill adolescents, the transition to adulthood is additionally stressful not only for the child, but also for the family and healthcare providers because of the issues surrounding the transfer of care to an adult internist–gastroenterologist (1–6).During the transition to an internist–gastroenterologist, adolescent patients, their parents, and other family members may feel threatened by changes in the pattern of care and resentful of the effort required to adjust to a new setting with new staff. Patients and families have weathered many crises and made vital decisions with the support of their pediatric team and have come to regard this strong source of advocacy as a permanent arrangement. In contrast, they may perceive the internist–gastroenterologist, whose patients usually function independently, as less involved or less sensitive to developmental and social needs. Healthcare providers may also feel ambivalent during this period of change and may find it difficult to relinquish the patient to another physician whose style of practice is not well known.OBSTACLES TO TRANSITIONThe obstacles to transition reside in the family, the pediatric caregiver, the adult caregiver, and the patient.THE PATIENTPatients may be reluctant to move to an adult healthcare system because they must give up a familiar atmosphere and services that are a routine part of their pediatric care setting. Nonetheless, to remain in the pediatric setting may delay development of independence and deprive patients of subspecialty care appropriate to their age.THE FAMILYThe process of transferring young adults from the pediatric to the adult healthcare system routinely arouses strong feelings. Parents are often reluctant to leave the pediatric caregivers with whom they have bonded over the years. Parents may have close personal ties, forged during moments of crisis and shared concerns, with the pediatric caregivers. In addition, the clinic and hospital staff are often a major part of the family's support system. Parents who have been intimately involved with the care of their child may feel shut out and ignored when adult caregivers involve them only with the permission of the patient. To a great extent, transition is a family matter. Although many young people share their parents' fears about change, they also want to be treated as adults. For a successful transition to occur, the family must be included in the planning.THE PEDIATRIC CAREGIVERThe caregivers' attitudes also may also complicate the transition. Pediatric caregivers have strong ties to their patients and families and may want to maintain those relationships. They may feel that no one in the adult system has the expertise to deal with their patients' medical problems and, more importantly, that adult caregivers are not prepared to meet the psychosocial challenges of chronic illness in pediatric patients.The American Academy of Pediatrics has raised concerns about the quality of healthcare services for older adolescents.

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