Preventing Secondary Conditions Associated with 
Spina Bifida or Cerebral Palsy Symposium 
February 17-19, 1994, Crystal City, Virginia

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Achieving and Maintaining Body Systems Integrity and Function: Clinical Issues
Jane Dorval

Until recently, little thought had been given in the medical literature to the medical care needed by adults with cerebral palsy or spina bifida. The basic reason for this omission is the very low number of clinics for managing adults with these conditions (only 13 in the United States in 1993). This not only makes data collection difficult, it tends to prevent physicians and other professionals from developing the expertise necessary to recognize and treat conditions resulting from the primary diagnosis.

It is crucial that these secondary conditions be recognized and treated despite the obstacles if we are to prevent unnecessary morbidity, disability, and mortality. To that end, I present herein an overview of recommended practices in the management of secondary conditions of cerebral palsy and spina bifida.

MANAGING SPECIFIC SECONDARY CONDITIONS

Skin Breakdown

Cerebral Palsy. Skin breakdown becomes more common when the adult with cerebral palsy loses mobility or when changes in his or her positioning have occurred. In addition, poor nutrition among those with feeding problems can compromise the protective function of the skin. In a group of 62 adults with cerebral palsy and scoliosis, Kalen, Conklin, and Sherman (1992) found no statistical difference in the incidence of pressure sores between those with a curve less than 45· and those with a curve greater than 45· and that pressure sores are predominantly sacral, not ischial, in both groups. When motor control becomes more difficult, movements can become increasingly awkward, and abrasions and burns can result. The injured skin should be treated, and the person should be encouraged to learn pressure-relieving techniques and to seek medical attention whenever skin breakdown occurs. When abrasions are the result of a person's problems with motor control, the environment should be changed to make it safer.


Spina Bifida
Menelaus (1983), Sharrard (1976), Shurtleff (1986), and Smith (1965) have noted that paraplegia, anesthetic skin, joint deformities including those of the spine, incontinence, and the use of orthoses predisposes people with spina bifida to skin breakdown. Prevalence rates range between 39% and 48%. In addition, many adults with spina bifida experience significant changes in their metabolism as they choose to use wheelchairs instead of crutches and braces. Findley et al. (1987) found that ambulatory ability begins to deteriorate between ages 10 and 20. The metabolic changes resulting from reduced mobility frequently result in obesity. As the adult with spina bifida becomes heavier and less mobile, pressure sores are more likely to occur. Insensate skin of the lower trunk and legs may be the site for repeated episodes of skin breakdown.

For adults with spina bifida, reduced mobility and increased weight can heighten the likelihood of injury to the skin. Burns and abrasions in insensate skin can also occur. Any injury to the skin, if severe, can result in the need for extensive surgical procedures and prolonged hospitalizations.

Whenever any break in the skin goes untreated and becomes infected, there is an increased likelihood for osteomyelitis. Osteomyelitis, left untreated, can result in amputations. The results of a survey done for the Spina Bifida Association of America by Dunne, Gingher, Olsen, and Shurtleff (circa 1984) corroborate my experience: The prevalence rate for lower extremity amputations among those with spina bifida is between 8% and 10%.

The most frequent reason I see for the hospitalization of adults with spina bifida is for skin breakdown that requires surgery. I have also found that in a group of 137 adults with a median age of 24, 73% gave a history of skin breakdown, and 28% had some degree of skin breakdown at the time of the initial evaluation. Harris and Banta (1990) found that the incidence and location of pressure ulceration is directly related to the functional motor level. Their data also show that people with a thoracic level of paralysis and kyphotic spinal deformities are at significant risk for pressure ulceration of the dorsal spine.

The most successful intervention includes preventive measures as well as treatment: health education, daily skin inspection, a sound bowel program, main-tenance of urinary continence, the use of properly fitting orthoses, symmetrical weight bearing, pressure relief, removal of the specific inciting cause, and prompt attention to injured skin (Okamoto, Lamers, & Shurtleff, 1983).

Urologic Problems

Cerebral Palsy. Neurologic dysfunction can cause problems with bladder control, including urinary retention. One study of 33 patients with cerebral palsy, including 10 adults, found significant problems with difficulty urinating (retention or urgency) due to a lack of voluntary control over and the hypertonus (excessive tone or tension) of the pelvic floor (Mayo, 1992). Limited cognition may cause additional problems if the person has difficulty perceiving and communicating bladder fullness and the need to void. Voiding schedules geared to the needs of the adult with cerebral palsy can minimize these problems.

Chronic urinary tract infections can be caused by self-imposed regimens of extreme fluid restriction, incomplete bladder emptying, urinary reflux (backward flow), and infrequent voiding. These infections can lead to renal failure, hypertension, and the need for dialysis. Ideally, an adult with cerebral palsy should be closely followed by a urologist who is familiar with his or her medical history. Also, adults should be educated to recognize the signs and symptoms of infection so that medical treatment can be sought as soon as an infection is suspected.

Although there are no published accounts of the prevalence of genitourinary malignancies among those with cerebral palsy, in an institutional setting of 104 adults with cerebral palsy aged 18 to 88, I identified two women aged 34 and 31 with bladder carcinoma. At the same setting, I found that a woman, aged 52, had recently died of renal carcinoma with metastases to the lung and that three years previously a man had died of a testicular malignancy.

Spina Bifida. Urinary incontinence, a frequent complication of spina bifida, is due to neurogenic dysfunction of the bladder. Urologic care of the patient is aimed at the preservation of renal function, prevention of urinary tract infection, and provision of socially acceptable continence. Renal failure is one of the leading causes of death in the adult with spina bifida.

Some adults perform clean intermittent catheterization while others have undergone surgical diversions. There are adults who still use Crede's method, penile clamps, external continuous drainage systems, or indwelling catheters, and some who use diapers. Koch et al. (1992) and Diokno, Sonda, Hollander, and Lapides (1983) have determined that for properly selected patients, clean intermittent catheterization is an effective treatment with few complications and excellent long-term results. Koch et al. also found that urinary diversion is associated with adverse effects on bone health: problems with growth, an increased need for surgery to correct spinal curvature, and a significantly increased incidence of complications resulting from orthopedic procedures. In addition, there was an adverse effect on renal function and multiple complications including nephrolithiasis, pyelonephritis, metabolic acidosis, and stomal complications. Endstage renal failure results in dialysis or renal transplantation or both. My experience with 137 adults with spina bifida revealed that 13% had only one functioning kidney.

Other, less frequently used means to maintain continence include implantation of neuroprostheses (Schmidt, Kogan, & Tanagho, 1990) or of artificial sphincters (Rudy & Woodside, 1991; Scott, Bradley, & Timm, 1974) and bladder stim-ulation (Kaplan, Richards, & Richards, 1989).

Regardless of the means used to achieve urinary continence and normal renal function, persons with spina bifida require regular follow-up with a urologist, blood pressure monitoring, blood tests, imaging studies, and other studies as needed. Antibiotics and other drugs such as oxybutynin (Ditropan) and pro-pantheline (Probanthine) should be given under the supervision of a urologist familiar with the adult's history. Major changes in bladder management are best introduced by physicians involved in the adult's care over a long period of time. It is not known how many adults are receiving regular urologic follow-up. I found on initial contact with 137 adults with spina bifida that only 27% were receiving regular urologic care.

Gastrointestinal Conditions

Cerebral Palsy. Oral motor dysfunction is present in many persons with cerebral palsy. If not addressed, it results in poor nutrition, weight loss, and aspiration pneumonia. Stallings, Charney, Davies, and Cronk (1993a, 1993b) found that poor nutritional status is an identifiable cause of growth failure in children with quadriplegic, diplegic, or hemiplegic cerebral palsy. Ferrang, Johnson, and Ferrara (1992) in a dietary and anthropometric assessment of adults with cerebral palsy found that the growth retardation seen in children with cerebral palsy persists with age. Although swallowing therapy to teach these persons compensatory swallowing techniques can be useful, increased assistance and supervision is often necessary if oral feeding is to be successful. However, such assistance is costly and is not always available.

Esophagitis, with or without reflux, is common in adults with cerebral palsy. Gastritis and stomach ulcers are also common. These conditions are treated with upright positioning during and immediately after feeding, smaller and more frequent meals, and anti-ulcer medications. If resources are limited, however, it may not be possible to thus modify feeding schedules. In an institutional setting of 104 adults with cerebral palsy, two men in their seventies died recently because of the complications of persistent reflux. One man died of aspiration pneumonia in spite of the use of continuous gastric suctioning along with many years of percutaneous endoscopic gastrostomy (PEG tube) feeding. Another man, under the same conditions, experienced small bowel failure and was unable to assimilate the feedings. A third man, aged 50, died of carcinoma of the distal esophagus; he had been maintained on bolus tube feedings for years. He also experienced abdominal, chest, and back pains off and on for years, which made it difficult to diagnose the malignancy.

Constipation can be a problem in adults with cerebral palsy. Agnarsson, Warde, McCarthy, Clayden, and Evans (1993b) recommended that medical and dietary management as well as comfortable and effective positioning during defecation be employed. Constipation left untreated results in impaction; the long-term consequence of repeated impactions is megacolon. Treatment for constipation includes the development of a bowel program. Proper dietary intake of fiber and liquids, stool softeners, suppositories, enemas, digital stimulation, and a schedule should be parts of a program to ensure that evacuation is predictable, regular, and complete.

Spina Bifida. The swallowing problems of people with spina bifida usually occur as a manifestation of the Arnold-Chiari malformation and are seen most frequently in childhood. The usual management consists of tube feedings and proper positioning in order to prevent aspiration pneumonia. Occasionally adults have trouble with choking and coughing while eating. This can be an early sign of deterioration as a result of the recent onset of a symptomatic Arnold-Chiari malformation. When such symptoms occur, it is critical that the problem be recognized, diagnosed, and treated promptly with surgical decompression, or death may follow. The onset of swallowing problems can be sudden or insidious. Physicians unfamiliar with the complications of spina bifida may fail to recognize this condition.

Bowel incontinence, diarrhea, and constipation are frequently present as a result of neurogenic dysfunction of the bowel. Management is crucial since employment and social life can be severely limited by this ongoing problem. In my experience, bowel incontinence or the fear of bowel incontinence is the leading reason that people with spina bifida avoid leaving home for any purpose. In a study of bowel and bladder management in children with spina bifida, Lie et al. (1991) found that although the need for assistance with bladder management decreased with age, this was not the case with bowel management.

Agnarsson et al. (1993a) were able to provide a clearer understanding of sphincter function using manometric testing and demonstrated abnormalities in rectal function during defecation. These findings indicate that persons with high spinal lesions are likely to be prone to constipation, and treatment should be aimed toward regular toileting, preferably after a meal, with suppositories, enemas, or manual extraction of stool if necessary. Those with low spinal lesions are more likely to experience fecal incontinence and should be managed similarly, with the addition of antimotility drugs such as diphenoxylate (Lomotil) and lopermide (Imodium).

Basic management today consists of educating the person about neurogenic dysfunction of the bowel, helping him or her to develop a regular bowel program, and educating him or her as to what foods, stool softeners, laxatives might be helpful and which strategies might be employed. Biofeedback, thought by some investigators to aid in bowel training, was shown by Loening-Baucke, Desch, and Wolraich (1988) to provide no improvement in anorectal function. The goal is to achieve regular, predictable, and adequate evacuation. Because of the need for trial-and-error attempts, close follow-up with clinicians familiar with developing this kind of a program is essential. Occasionally, when an adequate bowel program is not achievable, a colostomy is necessary.

Obesity is not uncommon among adults with spina bifida as they experience decreasing levels of activity and exercise. Asher and Olson (1983) found that ambulation most often deteriorates because the energy requirement for ambulation rises as body weight increases. To conserve time and energy, many adolescents and young adults choose to use wheelchairs as they get older. Their choice may result in further unwanted weight gain. Shepherd, Roberts, Golding, Thomas, and Shepherd (1991) studied 59 individuals with spina bifida ranging in age from less than a year to 29 years and found increased percentages of body fat in those beyond the age of 3 or 4 years. The higher levels of body fat were more pronounced in females and in those with high lesions and less pronounced in those who remained ambulatory.

Mita et al. (1993) noted similar findings as well as a significant correlation between the percentage of body fat and hydrocephalus, a finding that suggests that the metabolic and nutritional maladaptation is caused not only by those patients' physical inactivity but also by the condition itself. Once young adults have completed school and begin spending more time at home (frequently just sitting in front of the television), the reduction in activity and exercise accompanied by an increase in eating (simply out of boredom) may cause additional weight gain. Once this cycle has begun, it is very difficult to break. Dietary counseling and weight-loss programs are frequently recommended. Findings like these suggest that dietary management needs to begin in childhood.

In the course of taking the histories of numerous adults with spina bifida, I have found a possible higher incidence of gallbladder disease and the need for cholecystectomy than is found for the general population. In several of the cases the presentation was atypical and elusive, which made the diagnosis difficult.

Respiratory Conditions

Cerebral Palsy. Pneumonia is one of the more common respiratory complications of cerebral palsy. In a mortality study of cerebral palsy patients, Evans and Alberman (1990) found that a respiratory cause of death appeared on the death certificate of 78% of the cases reviewed. Pneumonia can be caused by esophageal reflux, respiratory muscle dysfunction, or a compromised immune system resulting from underlying poor nutritional status. In a study of adults with cerebral palsy with untreated scoliosis, Kalen et al. (1992) found no difference in oxygen saturation between those adults with a scoliotic curve greater than 45· and those with a curve less than 45·. Mean oxygen saturation for both groups was 80% to 81%, indicating significant hypoxemia (deficient oxygenation).

Treatment includes the use of antibiotics, chest physical therapy, and oxygen. Assisted ventilation and extended hospitalizations are sometimes necessary. Because the onset can be insidious, preventive measures include close monitoring of swallowing function and the progression of scoliosis.

Spina Bifida. Repeated bouts of pneumonia can be the harbinger of swallowing problems caused by a symptomatic Arnold-Chiari malformation and should be thoroughly investigated. Appropriate imaging studies of the central nervous system should be ordered, along with the usual supportive treatment measures, including tube feeding and assisted ventilation, when indicated.

Restrictive lung disease caused by progressive scoliosis is preventable when the orthopedic spinal stabilization procedures undertaken during childhood are successful. Some adults with spina bifida have undergone spinal fusions that have failed, which has resulted in restrictive lung disease. The traditional management is preventive: administering pneumococcal and influenza vaccines, limiting exposure to people with respiratory infections, and treating infections promptly.

Miscellaneous Secondary Conditions

Latex Allergy. Latex sensitivity was discovered in persons with spina bifida in the late 1980s. Tosi, Slater, and Shaer (1993) found the incidence of latex antibodies in persons with spina bifida to be as high as 38%. Newer studies are showing that there may also be cross-reactivity with foods such as bananas, avocados, water chestnuts, and other fruits. Reactions can range from mild rashes to life-threatening anaphylactic shock (Gold et al., 1991). If such reactions are not recognized and treated immediately, death can result. The best way to prevent these reactions is to limit exposure to the allergen. This requires extensive education of people with spina bifida and of those involved in their care.

Reproductive Issues. It is not unusual for women and men with cerebral palsy or spina bifida to have had little or no routine gynecological or prostate care. The reasons include the inaccessibility of physicians' offices, the discomfort of some physicians with managing patients with these conditions, technical difficulties in examining persons with lower-extremity deformities or spasticity or both, and caretakers who see no need for the gynecological or prostate care.

When standard positioning for gynecological examination is impossible, annual pelvic ultrasounds can be used to provide baseline information. In a survey of 88 parents with cerebral palsy with a total among them of 122 children, Foley (1992) found that 93% of the offspring were reported to be normal but that there was a higher incidence of diplegia, malformations, and trisomy 18 than is found in the general population. Winch, Bengston, McLaughlin, Fitzsimmons, and Budden (1993) studied a group of 22 women with mild cerebral palsy who had 38 pregnancies. They found that most of the offspring were normal and that the complications and their incidence were typical of the general population.

I noted similar findings in a group of 14 women with spina bifida who had 22 pregnancies. Urinary tract infections were the most commonly reported complication occurring during pregnancy in women with spina bifida in two other studies (Farine, Jackson, Portale, Baxi, & Fox, 1988; Richmond, Zaharievski, & Bond, 1987). Recurrent infections occurred in all cases reported by Farine et al. and Richmond et al. regardless of the history of bladder management.

RECOMMENDATIONS

For Young Adults

• Assume personal responsibility for medical care to the fullest extent possible, making doctors' appointments, remembering to take medications, managing bowel and bladder programs, and refilling medications.
• To make better decisions regarding care, identify and use resources offering information about cerebral palsy or spina bifida and join the relevant organizations.
• Make every effort to stay with the same doctors and to communicate promptly any change in condition to them.
• At all times, carry a written history of medical problems, surgical procedures, names of treating physicians, current medications, and allergies. The care one receives in emergency situations depends on how much information the treating physician has at the time of the evaluation, and patients in emergency rooms may not feel well enough to give a thorough medical history and may not always have someone with them to provide it.
• Be aware of the personal baseline for existing conditions such as headaches, abdominal pain, patterns for bowel and bladder function, and the like, and notify the physician whenever changes occur.

For Parents and Families

• Encourage children to assume as much responsibility for their own care as possible. This can include bowel and bladder management, making doctors' appointments, refilling prescriptions, and arranging for brace repairs. Train children and young adults in independent problem-solving skills.
• Assist young adults in finding physicians, transportation to the physicians' offices, and resources for reliable medical information.
• Assist young adults with the management of insurance benefits.
• Encourage young adults to advocate for their rights, to become knowledgeable about their conditions and the services and programs available to serve them.

For Health Care Professionals

• Maintain baseline medical information on patients with cerebral palsy or spina bifida. Note the nature, frequency, and other qualities of any idiosyncratic or undiagnosed symptoms such as abdominal pain or headache. For patients with cerebral palsy, at a minimum, monitor the skin, swallowing ability, neurologic function, respiratory function, gastrointestinal function, and genitourinary function. For patients with spina bifida, at a minimum, monitor the skin, neurological function, genitourinary function, and gastrointestinal function.
• Educate patients with cerebral palsy and spina bifida about the probable course of their condition, methods of treatment, and methods of self-care. Provide written educational materials.
• Educate colleagues about cerebral palsy and spina bifida through publication in peer-reviewed journals and presentations at professional meetings.
• Educate local physicians through referrals, consultation, and distribution of journal articles.
• Develop clinics to provide specialized care for adults with cerebral palsy and spina bifida. Staff them with experienced and interested health care providers. Such clinics should provide consultation to community physicians whenever possible.
• Engage in independent and collaborative research.
• Advocate a national registry for persons born with cerebral palsy or spina bifida.

For Vocational and Educational Professionals

• Be aware of preventable conditions in people with cerebral palsy and spina bifida and modify the environment as needed to support them. This would include providing accessible bathrooms in convenient locations and flexible classroom and work schedules.

For Advocacy and Policy Professionals

• Lobby for health care coverage that will include care for the secondary conditions discussed in this paper.
• Advocate a national registry for persons born with cerebral palsy or spina bifida.
• Extend the function and purpose of Centers for Independent Living (CILs) to include a wider range of services. These should include the provision of medical information as well as information that can be used to achieve good health and fitness.
• Support the creation of more CILs in order to meet the needs of adults with developmental disabilities.

REFERENCES

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Agnarsson, U., Warde, C., McCarthy, G., Clayden, G. S., & Evans, N. (1993b). Anorectal function of children with neurological problems II: Cerebral palsy. Developmental Medicine and Child Neurology, 35, 903-908.

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Dunne, K. B., Gingher, N., Olsen, L. M., & Shurtleff, D. B. (circa 1984). A survey of the medical and functional status of members of the adult network of the Spina Bifida Association of America. Unpublished.

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