Managing Health Care from Childhood through Adulthood

Notes on a talk given at the Annual CFRI Conference by Stanley Fiel, M.D.

Fall, 1995

Stanley Fiel, M.D., is a Professor of Medicine at the Medical College of Pennsylvania and Hahnemann University School of Medicine, and the Chief of Pulmonary Disease and Critical Care Medicine at the Medical College of Pennsylvania Hospital. He addressed the need for adult health care centers to treat adults with CF. Currently adults are treated in CF centers that are set up mainly to deal with pediatric cases of CF.

Dr. Fiel first listed the substantial advances over the last 25 years in both the diagnosis and treatment of cystic fibrosis which have led to equally impressive improvement in survival statistics for patients affected by this disease. Currently more than one-third of the total CF population are over 18. Dr. Fiel believes that this newly emerging and consistently growing adult population with CF faces unique challenges and requires more appropriate CF centers that are equipped to deal with a different set of needs than the traditional pediatric approach.

Dr. Fiel criticized this void in services for adolescents and young adults with chronic illness. Pediatricians are currently fulfilling the caregiving role for this population. He questioned the ability of this model to fulfill the needs of an adult population. It is not an appropriate setting or framework for adult healthcare. Doctors verbalize the message "grow up, become independent," and yet, at the same time, patients are kept in an environment that is not necessarily conducive to the achievement of these goals.

Dr. Fiel pointed out differences in the older CF population. He cited worsening pulmonary function (half of adults with CF have moderate to severe pulmonary function), the likelihood of Pseudomonas colonization, gastrointestinal complications including pancreatitis, liver disease (early cirrhosis of the liver results in one percent of all CF deaths), strictures above where the stomach and esophagus join, an 11-fold increase in arthritis, an eight-fold increase in diabetes, and complications from osteopathies. There are also psychological dimensions to adult care that must be addressed such as the transition from adolescence into adulthood, realistic vocational goals, reproductive and sexual issues, and the transference of care from the parents to the young adult. Dr. Fiel suggests that when the development of a chronically ill youth is normalized in the proper setting, the young adult can be more independent, more compliant, and can address long-range planning of life needs.

The transition from our current health model to the proper adult-care model is not without obstacles. Often patients do not want to make the change. Dependency issues, immaturity, severe illness or disability, psychopathologies, lack of proper support systems, lack of trust in caregivers or problems with compliance can exacerbate a patient's resistance. Sometimes the families are the ones struggling with the change. Parents feel dependent on current pediatricians or have excessive need for control of the young adult's health care. Other problems of parents might include their parenting style, their perception of the disease, their perception of their child (the patient), and again, lack of trust in caregivers. Beyond the family, other obstacles might include the pediatrician: he or she might have trouble letting go of the patient for a variety of reasons, including emotional ties, economic incentives, distrust of the adult health care providers, perceptions of his or her own skills, the disease at hand and the need for transition, and an ambivalence toward the need for change. Finally, the adult caregivers can also present an obstacle through lack of knowledge of the disease and family dynamics, economic concerns, and heightened perception of care demands.

Dr. Fiel concluded by saying that the number of adult centers in the U.S. currently stands at approximately 10 to 12. He said the most common problems were lack of interest by CF adults and the belief throughout pediatric centers that the need is not great enough. He insisted that the need is great for adult CF care centers, and adults with CF can mobilize to demand proper health care that can more adequately meet their needs.

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