Childhood-Onset Spinal Cord Injury

Mortality

Using data from the National Spinal Cord Injury Statistical Center over a 30-year period, it has been determined that life expectancy for adults injured as children appears to be slightly lower than that of those with comparable functional levels incurred through SCI as adults (150).

Life Satisfaction

Adults with childhood-onset SCI show relatively high satisfaction with life and relate this to independent liv­ing, education, income, satisfaction with employment, and social/recreation opportunities (151,152). Medical complications adversely affect satisfaction, especially presence of pressure ulcers, severe UTIs, and spastic­ity (152,153). Those with paraplegia are more satisfied than those with tetraplegia, and there appears to be no gender difference (151). Depression symptoms have been reported in adults with childhood-onset SCI, and are associated with medical complications, social par­ticipation, and incomplete injury (154). Life satisfac­tion is not associated with level of injury, age at injury, or years with disability (152).

Of interest is that adults with childhood-onset SCI self-perceptions are not reported to be as significantly altered as clinicians anticipate (155,156) and, therefore, are enriched by services and providers that emphasize education, employment, and long-term health man­agement (152).

Urology/Nephrology

The most common reported health complication for adults with childhood-onset SCI was UTI (157). Typical strategies for management of neurogenic bladders are used, as previously noted, and CIC continues to be the typical management.

Adults with childhood-onset SCI have some asso­ciation of urologic complications that relate to age or years with disability, and consequently, regular urologic follow-up is recommended. In a large study of adults followed at Shriners Hospital for Children in Chicago, Vogel reports older age at interview and longer years with disability were associated with orchitis or epidid­ymitis (157). Also, greater impairment was related to UTI, severe UTI, and renal stones. Severe UTIs were also related to poor life satisfaction (153). Although not reported in this cohort, bladder cancer and pseudotu­mors of the bladder may also be present.

Musculoskeletal

For adults with childhood-onset SCI, pain at any site was the most common complaint, and shoulder pain was noted in almost half of the respondents in interviews, as reported by Vogel at al (158). As was noted earlier, overuse syndromes must be considered, especially at the shoulder. In general, for adults with childhood-onset SCI, longer years with disability and increasing age are associated with shoulder pain (158). Etiology must be identified, and evaluation and treat­ment are essential. An outpatient physical therapy pro­gram or a home exercise program for shoulder pain, with or without impingement, in SCI (159) have been shown to be effective in pain management.

For adults with childhood-onset SCI, younger age at injury and longer years with disability has a correla­tion with scoliosis (158,160). More severe and frequent scoliosis has been reported in paraplegia and complete lesions, and lordosis has been noted to be greater in paraplegia and incomplete lesions (160). There is no evidence that bony injury at the time of childhood­onset SCI influences the development of scoliosis or lordosis (161).

For adults with childhood-onset SCI, younger age at injury and longer years with disability were asso­ciated with hip subluxation, and older age at injury was associated with elbow and ankle pain (158). Back pain may be seen in about 20% of patients unrelated to scoliosis, and ankle pain and elbow contractures are associated with tetraplegia, and hip contractures with paraplegia (158). For those who walk, presence of hip or knee pain should be questioned, and for any pain complaint, appropriate workup and management should ensue.

There are no reports detailing osteoporosis in adults with childhood-onset SCI; however, there is sci­entific research that identifies osteoporosis as a com­mon secondary condition in SCI. As noted, the most effective treatment has not been established, and dos­ing parameters for medications or other strategies are unknown. Case series have advocated for the use of cycling with functional electrical stimulation (FES) to improve bone mineral density (162).

Adults with childhood-onset SCI report fractures associated with increasing age and longer years with disability (158). Those with lower cervical injuries tend to have more pathological fractures than the other groups.

Neurologic

Neurologic sequelae for adults with childhood-onset SCI appear to be limited by report in the literature. The presence of autonomic dysreflexia (AD) is not related to increasing age, age at injury, or years with a disability. AD is associated with greater neurologic impairment and is a common health condition for adults with childhood-onset SCI (157). Spasticity is seen in >50%, older age at injury is associated with spasticity, and longer years postinjury notes spasticity or neurologic changes (158). Monitoring for changes in function and adjustment to spasticity or other management must be part of routine medical care, with consideration for all possible options, including injections, pain manage­ment, medications, and surgical considerations.

Additional Medical Conditions

Pulmonary conditions may be seen in adults with childhood-onset SCI. Restrictive lung disease occurs as a consequence of scoliosis, and the addition of weak­ness or paralysis of secondary respiratory muscles may further increase risk for recurrent respiratory infec­tions (150). Survival for childhood-onset SCI requiring ventilator support has improved in recent years, with reported survival up to 23 years (163). Deaths in this cohort were related to respiratory complications, fol­lowed by unknown and suicide. There have been rare unscheduled hospitalizations, and life satisfaction is associated with better mental health.

Obesity is a reported medical condition in motor disabilities in general, but it is not mentioned in several series of adults with childhood-onset SCI. Appropriate nutrition and adequate exercise and activity should be a lifelong goal in persons with disabilities.

Pressure ulcers were reported in just less than 50% of adults with childhood-onset SCI, were more common in men, and more common in greater neuro­logic impairment (157).

Gastrointestinal conditions are not common, other than neurogenic bowel-related issues. Bowel inconti­nence is reported in >50% of adults with childhood­onset SCI, and is seen with older age and greater impairment, although not with increasing years with disability.

Latex sensitization/allergy is seen in SCI, but seemingly not as frequently as SB. It is unclear what the incidence of latex allergy is in the childhood-onset SCI population, although it is known that women more commonly report a latex allergy (157).

Osteoporosis. There is no published data about osteoporosis in adults with childhood-onset SCI dif­fering from adults with SCI. Treatments studied have included bisphosphonates and functional electrical stimulation (FES) exercise, although there is no defin­itive treatment suggested by the research findings. Fractures are the complication, and are reported with increasing age (158).

Sexual Functioning

There are less data about men and women with childhood-onset SCI. Although the general informa­tion available about adults with SCI can be helpful, it is not clear if it can be generalized. It is known that semen quality decreases at about two weeks postin­jury, which could imply decreased fertility for adult men with childhood-onset SCI (165). Fertility is also affected by bladder care (166).

There are no menstrual cycle difficulties known for women with childhood-onset SCI (167). A multi­center study of women's self-reported reproductive health after SCI, likely adult-onset injuries, reported complications from pregnancy, labor, and delivery to be more frequent than what was noted preinjury, and delivered babies of low birth weight (168). Women reported increased bladder spasms, muscle spasms, and autonomic symptoms at some time during their menstrual cycle. Experience of orgasms and methods of contraception varied. The effects of menopause are unknown.

There is no specific information about typical gynecologic screening and prevention practices for women with childhood-onset SCI; however, national data concerning women with mobility impairments, especially those requiring use of a wheelchair, clearly demonstrate minimal participation likely due to envi­ronmental and attitudinal barriers. Risks for use of contraception options are not known; however, com­bined hormone oral therapy carries a risk for throm­bophlebitis; progestin-only medications have early irregular bleeding and long-term suppression effects; and intrauterine devices with lack of sensation require vigilance for correct placement and risk of rare compli­cations such as perforation, infection, or ectopic preg­nancy (147). Given the information self-reported by women with SCI, pregnant women should be at least evaluated through a high-risk pregnancy service.