Dr. Joan Gold is a clinical professor in the Department of Rehabilitation at Rusk Rehabilitation, NYU Langone Health. Her medical degree is from the State University of New York Downstate Medical Center. She completed her residency in physical medicine and rehabilitation at the NYU Medical Center and her residency in pediatrics at Beth Israel Medical Center. She is board certified in the following three areas: Pediatric Rehabilitation Medicine, Physical Medicine & Rehabilitation, and also in Pediatrics. Her area of specialization includes the pediatric disorders cerebral palsy and spina bifida.
This is a special two-part Grand Rounds series.
In Part 1 of her presentation, Dr. Gold contrasted a time 50 years ago when she made a presentation on the topic of spina bifida. Today, we have a change in attitude and a change in medical information since that earlier period and we also need to be aware of long-term care needs and the need for continuity of care of these patients, and all our patients who are aging out. She cited professional literature from 1971 that described many kinds of pediatric patients whose conditions were such that rather than try to treat them, they should be allowed to succumb. For example, comments made back then about these patients being incontinent and socially unacceptable were not true. By 1996, it was shown that most of the previous assumptions were wrong. A child in a wheelchair is worth living. Many surgical deformities that once were present can be corrected today. Incontinence is not inevitable and bowel function can be controlled. She discussed the role of folate in reducing the incidence of spina bifida. She mentioned the implications of providing care for these patients. Most of the surgical procedures undertaken today are neurosurgical. Various generalizations can be made. One is that adult spina bifida patients are likely to have fewer primary care visits than patients under the age of 18 and she explained reasons why it is so. She concluded Part 1 of her presentation by talking about the role that urinary complications may play in the death of many patients.
Listeners to Part 1 of Dr. Gold’s presentation will recall she indicated that it probably is the urinary complication that is the cause of death in most of these patients, which is critical. In Part 2, she began by asking what multilevel care elements should exist for patients with spina bifida? She mentioned that as a result of pushing wheelchairs, some patients experience rotator cuff injuries. Although therapeutic services do not have to be performed for all patients, she described some kinds of assistance that they may need. Some patients may experience functional regression. Once able to walk at ages five and 10, they no longer can do so. There is a higher incidence of neuroses. These patients need vocational, nutritional, and social work services. A problem for many patients is when they have to travel a considerable distance for hospital care, the facility they go to may lack the personnel necessary to provide appropriate kinds of spina bifida care. She indicated some surgical concerns. Most shunted patients have long term motor and cognitive behavioral deficits. She described urological issues that are most paramount and frequent. She asked what kinds of things should we do when we assess patients within a therapeutic realm? We should look at their transportation skills, perceptual motor skills to drive, be knowledgeable of their medical management and history, and try to establish some autonomy with money management, household skills, and community living skills. Also, there is a need to work on their parenting skills and on obtaining adequate health care for themselves and their children. There are issues with cardiovascular disease. Studies show that as many as 73% of spina bifida patients have chronic pain. A final portion of the presentation was on the topic of women with spina bifida giving birth.
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