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LETTERS
Mayo Clin Proc, April 1989, Vol 64
The authors reply We thank Dr. Rosenfeld for his letter concerning our article on analytic and clinical criteria for sensitive thyrotropin assays. We discontinued use of the Hybritech two-step Tandem-R method in January 1988 be cause the reagents were no longer available. Data concerning this assay were included in our report as an illustrative example; a primary evaluation of that assay was not intended. We originally reported the data in the March 1987 issue of the Journal of Clinical Endocrinology and Metabolism, (pages 461 to 471). In addition, the Symposium on Sensitive TSH Assays published in the Proceedings was a summary of a con ference held in Washington, D.C., in September 1987, when the assay was still available. Laboratory procedures have changed relatively rap idly in the past few years, and evaluations of specific products quickly become outdated. In view of this con cern, the focus of our article was the development of analytic and clinical performance criteria that could be used to evaluate current and future assays, rather than to provide specific evaluation data. The informa tion on the three assays we have used at the Mayo Clinic was included to illustrate the concepts we pro posed for performance criteria. George G. Klee, M.D., Ph.D. Ian D. Hay, M.B., Ph.D.
Most of our patients could be categorized somewhere between these two groups. Although they are dependent for care and may be able to be weaned from the ventilator for no more than 1 or 2 hours at a time, their situation cannot be described as "custodial care." They are a relatively active group, spending a mean of 10.6 hours a day out of bed. They are out of the house a mean of 4 days a week for school or leisure activities, and, despite numerous medical complications, almost 90% express some satisfaction about their lives.1 Working with children who require home ventilation can be a frustrating endeavor for the rehabilitation team. We were encouraged to learn that 100% of the children in our rehabilitation program indicated that they were glad to be alive. We encourage continued work in this challenging area of rehabilitation care. Edward A. Hurvitz, M.D. Virginia S. Nelson, M.D., M.P.H. Kathryn B. Fessler, B.S. Pediatric and Adolescent Services Department of Physical Medicine and Rehabilitation University of Michigan Hospital Ann Arbor, Michigan REFERENCE 1. Nelson VS: Quality of life of ventilator assisted children and adolescents. Presented at the 50th annual meeting of the American Academy of Physical Medicine and Rehabilitation/American Congress of Rehabilitation Medi cine, Seattle, Washington, October 30 to November 4,1988
Home Mechanical Ventilation The review of the Mayo Clinic experience with homecare ventilation, published in the December 1988 issue of the Proceedings (pages 1208 to 1213), helps empha size the needs of an emerging patient population. At the University of Michigan, we have developed an ex tensive rehabilitation program for ventilator-dependent children. Although our patient group has consisted pri marily of quadriplegic patients, children with myopathy, motor neuron disease, and other diagnoses have also been included in the program. These patients often present a complicated rehabilitation problem that neces sitates an interdisciplinary team approach. Seating, mobility, personal care, communication, and feeding are major issues. Before the children go home, the family is trained in the care of the child and in the use of the ventilator. For most children, an attendant or some other type of nursing care is provided to assist the family. Drs. Peters and Viggiano identified two types of candidates for home ventilation: (1) the patient who can participate in self-care and can be weaned from the ventilator for as much of the day as possible to maintain independence and (2) the custodial-care pa tient, who is expected to remain ventilator-dependent.
The authors reply Hurvitz and colleagues describe a favorable experience with a challenging subgroup of ventilator-dependent patients—that is, children with neurologic or muscu lar disorders. As they suggest, ventilator management is only one aspect of the complex continued care of such patients. We agree that the common designation of long-term care as "rehabilitative" or "custodial" may not fairly represent the multiple levels of support that might be required. We prefer to avoid the term "custodial care," which may have negative connotations regarding the potential quality of life or independence of these pa tients. Care must certainly be individualized, should ideally provide some degree of autonomy, and should include ongoing input from the patient and family. Moreover, regular medical follow-up is necessary be cause ventilator requirements may not be static and other medical complications are common. Steve G. Peters, M.D. Robert W. Viggiano, M.D.