Professionals • Educators • Care Providers

Growing up with CP - the Effect of Physical Maturity on Individuals with Cerebral Palsy

Ann Reiner and Halldor Bjarnason

During the summer and fall of 1998, the Cerebral Palsy Association of BC, through the efforts of Ann Reiner, undertook to determine what happens to people with Cerebral Palsy (CP) as they mature. The project was not to assess the "aging process", and what happens when they get "old". Rather to look at adults in the "prime of their lives" - those between the ages of 18 and 45 and living in the community - and see how their bodies are holding up.

Objectives:

To compare peak functional mobility in childhood with current function, and to survey new or increased physical problems, in a group of adults with Cerebral Palsy (CP).
To determine whether their needs for equipment, therapy and health care are being met.
To identify factors which may impact upon long-term function, such as the intensity and duration of therapy services, surgical intervention, and the use of assistive devices.

(This preliminary report deals only with the first objective.)

Design:

A questionnaire survey seeking information regarding physical mobility in childhood, at age ten years, and at present, in a format appropriate for analysis by the Gross Motor Function Classification System (GMFCS) (Palisano et al, 1997).

Subjects:

Adults living in the community between the ages of 18 and 45, with a diagnosis of CP. Questionnaires were distributed to 600 individuals by 11 organizations providing services to this population. The rate of response was 25%, with a total of 151 respondents, 66 males and 85 females, with 31 between the ages of 18 and 25, 61 between the ages of 25 and 35, and 59 between the ages of 35 and 45. 53% of respondents described themselves as having spastic, or mixed, quadriplegia, 18.5% spastic diplegia, 12.6% athetoid CP, 12% hemiplegia, and 4% ataxia.

Methods:

The GMFCS is a standardized ordinal scale, aimed at classifying the gross motor function of children with CP. Levels I and II represent unrestricted domestic and community ambulators. Individuals in Level III walk indoors and short distances outdoors with a walker or crutches. Those in Level IV may walk a little indoors, but otherwise depend on a wheelchair, and those in Level V have no means of independent mobility.

Measurements and Main Results:

Taking the entire sample, 6% improved by 1 level between childhood and adulthood, 48.3% stayed the same, and 45.7% declined by 1 or more levels. Those with spastic diplegia and quadriplegia did less well, with 51.4% showing a decline of 1 or more levels. Very few with hemiplegia or ataxia lost function, but 10% of those with athetoid CP declined by 1 or more level.

Outcomes also varied according to the GMFCS levels attained in childhood. Of those individuals in Levels I or II in childhood, 8% improved in adulthood, 49% stayed the same, and 33% lost 1 or more levels, whereas of those in Level III in childhood, 2.3% improved, 22.7% stayed the same, and 75% lost 1 or more levels. Respondents who were in Level IV in childhood reported improvement in 6.8%, no change in 41.2%, and 52% declined.

Of those respondents who could specify the age at which function decreased, half targeted the teen years, 30% the 20s, and 20% the 30s. Participants blamed growth and weight gain, the development of arthritis, lack of physical therapy, and unsuccessful orthopedic surgery for their functional decline.

89% of respondents reported many new or increased problems in adult life. The commonest of these were pain(65%), decreased balance(63%), weakness(61%), increased spasticity(61%), and decreased endurance(58%)

Conclusions:

Young adults with CP, particularly those who require assistive devices to walk, and those with spasticity, are at risk for losing mobility levels achieved in childhood, and for acquiring new problems not associated with old age. Services for persons with CP should be expanded to cover the lifespan, and medical/therapy specialities in adult CP should be encouraged. Further research into the prevention of these problems is needed.

Project sponsored by the Cerebral Palsy Association of British Columbia

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