Functional Status and Performance

The functional status of adults with CP is not static over time, and with aging there can be modest decreasing function, as there is for the general population. A number of studies, both in the United States and abroad, with small to large convenient samples, have noted that about a third of subjects report modest to significant decreases in walking or self-care tasks (34,52,69-71). Changes in dressing and walking with relative sparing of other self-care or social activities were reported in two of these studies (34,52). More recent studies provide data by Gross Motor Function Classification System (GMFCS), which allows better definition. Day et al used the large California database to determine the probabilities of loss or gain of walking skills into adulthood for those with CP (72). They noted that by age 25, there would unlikely be any improvement in walking skill and most would not change over the next 15 years, although there could be some decline. Therefore, the reason for even modest decreasing skill is not clear and may be related to progressive neurologic problems (eg, cervical spine stenosis, radiculopathy), lack of environmental modifications, pain, no access to or participation in exercise or activity programs, aging, or other medical conditions.

Decreased independence (increased need for assistance) in mobility and self-care is a common complaint of adults with mobility impairments. The reasons for change are varied, and may include those related to age changes (eg, decreased endurance, flexibility, strength, or balance), progressive pathology or secondary conditions (eg, pain, contractures, spasticity, osteoporosis and fractures, stenosis), or personal choices (eg, use of powered mobility to conserve energy). The change in mobility is often a response to a secondary condition or age-related change. Falls may also be such a response. Significant change in mobility or falls should not automatically be accepted as a part of a congenital or childhood-onset disabling condition in adult years; treatable etiologies should be sought.

It has been suggested through cross-sectional and convenience samples that adults with congenital or childhood-onset disability may show musculoskeletal, mental health, or performance changes typical of advanced aging earlier than their nondisabled peers (51,59,73) (7,74,75). These observations require confirmation through longitudinal controlled studies. While risk factors may predispose a person to these changes, they are, as yet, unproven. If these earlier-than-expected aging changes are confirmed, they should be considered secondary conditions. (83). Sleep disruption should also be questioned since it is commonly seen with pain and fatigue. Anecdotally, the pain/fatigue complex appears to respond positively to directed pain management, good sleep hygiene, medications, and exercise.

Appropriate management includes early identification of the problem and its source. Common musculoskeletal etiologies include poor ergonomics and biomechanics in tasks (secondary to deformity or limited motor control (71)), underlying weakness and therefore overuse (84), hypertonia (85), and degenerative joint disease (86). Typical management strategies should be offered, and referral for additional interventional, orthopedic, or neurosurgical consultation should be considered. However, adults with CP tend to self-manage their pain complaints (87), and for those who seek medical care, the report is minimal improvement and few options offered (88).

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